As someone who is allergic to "triptans". There hadn't been a new migraine medications in almost 20 years. (I'm 52 years old) It was like every time I heard there was a new medication, it turned out to be a new "cousin" of Sumatriptan. Again, allergic. As someone who was a nurse for 26 years and also is cautious about taking new medications, I did my homework and went to a new neurologist who only treats headaches. That is his specialty. My life had become spending most of my time sitting in the dark in my bedroom, wondering how many years I had to keep doing this, how old do your kids need to be before they would be okay without you? Yes, I did not want to live. Aimovig was a game changer for me. A life saver literally. I don't think about counting the days before I can end my life because it is unbearable anymore. It may not be for everyone but it was a miracle for me. I have taken monthly injections for about a year. Not to give TMI but yes, it did cause constipation and I had to add laxatives to my medications. I take them every other day to prevent constipation. I am also on memantine as my second preventative medication. It can make you a little mentally fuzzy or a little slow. I find that frustrating. These side effects are small though, considering that I did not want to live with my chronic migraines in addition to the limitations of my spinal cord injury. Constant pain. Unable to do any of the activities I loved. Sitting in the dark for days or weeks at a time. I understand what you are saying but when you reach the point that you are counting the days until your kids are old enough to live without you, you need some relief. Sometimes you need to take a leap of faith. I love your videos and keep up the great content.
I love this, thank you so much for sharing your story. Every situation is different and for a lot of people the risk is 8,000% worth it. I have friends on it too, some have definitely preached the same. It's a game changer for a lot of folks. I'm SO glad it's giving you relief!!
There are so many people that Aimovig helps. If one doesn’t though, try another. Story of our lives, right? Aimovig sis not work consistently and I am still very hit or miss with Ajovy. I’m another lifer with complex migraine and can’t do anything most people can for migraine meds. Does anyone else love the fun when words slur in your head when you are voicing things internally? Anyway the one thing that has given me relief is MMJ and even then is has to be a certain type. I’ve had to quit work and I’m finishing up cosmetology school now at 45. At least I found something I can do well enough and work only part time while I wait for my SSDI decision. I’m glad to know I’m not alone in this fight and thanks for posting!
Same. I can’t tolerate triptans, and the migraines were getting so bad that I was making active plans to kill myself. I was spending so much time trapped in my dark room that my dog would react to seeing me in the living room like I’d just come home from a months long trip. Even if Aimovig and Ubrelvy are doing serious long-term damage to my body, they’re still extending my life and improving my quality of life. It might not be worth the risk for everyone, and its good to make people truly consider those risks, but it is for me. I do get the caution. If this were a medicine for any of my non-migraine health problems, I would probably pass for the reasons Jen outlines here.
I too am allergic to triptans. Anaphylactic. I’m now on Emgality & swelling, gaining, adema, weight 8lbs in one month, and having severe constipation and Stomach pain in general. I don’t understand. I totally understand what you’re saying. I was literally counting the days of ways I could end my life but this...idk how to deal with this shot. It’s been one month on it.
I COMPLETELY UNDERSTAND- I'm right there in the same place. Just injected AJOVY... Waiting, watching, hoping, PRAYING... All else have failed me and so extremely skeptical about the helpfulness. However, at 57yrso any relief at this point is welcome. May 28, 2021
This is an awesome video! I am also a migraine mom in my 30s with a biochemistry background. I did all the same research and saw all the same orange flags and decided to go on it to try. It has completely changed my life. My chronic migraine was stealing my life and my cluster headache events were traumatic and giving me ptsd. The long term effects of migraines and cluster headaches on my life was devastating in a way that this medication COULD (but is unlikely to) be. My body reacts very badly to most medications, especially migraine meds, and it does not to this MAB since it doesn't cross the blood brain barrier. I grew into this condition after childbirth, I may grow out of it! I will monitor as many things as I can, and go off all medication occasionally to make sure I still need it, but otherwise as of now I do NOT mind being a test subject for long term effects of this type of medication if it means I'm alive and mostly ok. Cluster headaches aren't nicknamed suicide headaches for no reason. I wish every patient could be as informed as we are and make the decision that is right for them because we are proof that the same data can mean two different things for two different people!
Thank you so much for this response! I’m literally bawling my eyes out because this product gave my 18 year olds life back. He was literally bed bound for a year, missed a year and a half of school, barely graduated high school, and only tried going back to school because he was so isolated he was severely depressed. We’ve been on this (Emgality) for like 6 months and it’s given him so much life back. I have no idea how to yank that away from him. I worry how in this already mentally trying time were in what would happen to his mental health if he had to go back to that life. I’m a RN, so I also have a scientific brain, so I’m really trying to process this information. I don’t know what to do now...
I am on Emgality as well and it works wonders. I started on Aimovig but switched to Emgality due to severe bloating. I still bloat and have constipation but to a lesser degree.
@@cyndizebra6119 Honestly he is 18 just show him this video he can make his own choice. Botox is also a very helpful well researched alternative preventative if he hasn't tried that yet.
I took Nurtec for the first time last week...headache gone in an hour. Zero side effects. Worked great for me so far. I would do what is right for you, not what this woman does. If you have debilitating migraines finding relief is life changing.
You give me hope. After years of suffering and only trying Triptans which I couldn’t tolerate, I’m hoping this new prescription will be the thing that helps
I'm ready to try nurtec. 🎉anything to get relief lol.. triptains make me sleepy as heck and I can't go to work if I'm sleeping 😴 if I gave a migrane during the day
I took one dose of nurtec and it worked great. I was having such a bad migraine that had lasted a week and it was gone in 3 hours after taking nurtec. Unfortunately, it contains sucralose, an artificial sweetener that I am allergic to and I’ve been having hives ever since.
@@SimplySarah760my partner took it and has been taking it for three years. Hasnt had debilitating migraine ever since. He used to take 2 days off at work cause he cant function or work and gets dizzy and nausseus from the migraine. Now hes so happy to finally have relief.
@@princelasdoce1702 awwh that sounds amazing!! I'm glad it works ☺️ I'll have to try to get it. I'm working on it 😊 cause yeah I sometimes get that kinda migraine too 😕 migraines are awful
Ok I’m going to be real with you here and state some hard facts. Migraine sufferers are at a high risk of stroke. There are side effects from having migraine disease alone. Coupled with the fact we have to keep many things on hand because we don’t know what one will work that day. I have studied these drugs for a couple years and am thrilled to say that I am actively taking it. It has GIVEN ME QUALITY of life. I was bed ridden A LOT. I am able to show up to things without being as afraid today. The fear that in ten years they are going to come out with uh oh you might have X Y Z doesn’t even compete with living with debilitating ongoing pain that creates an impossibility of having relationships or going out and enjoying fresh air. This is coming from a veteran chronic migraine patient for the last 15 years. If I die in a couple years from it please know it was worth it. :) lol that is all
@@montana1080 if that’s your perspective, maybe you could help others by here by being specific about exactly what you think she said in the video that is incorrect.
I've gone from having several migraines that last for days to having NO...not one...migraine in the last year and a half since I've been on Aimovig. Well, let me amend that. I've had 2, but only because there were problems with the doctor getting the prescription sent to my pharmacy and I was almost 2wks late in taking it. Once I took the injection, no more migraines. I've had a handful of minor headaches, mostly due to sore necks muscles, but usually Motrin was sufficient, if I caught it early, and Cambia, if I woke up with it. Aimovig was a total game-changer for me, and like you, I've tried quite a few. I did not have any real expectations from it when I first took it. I expected it to be about as effective as the other migraine meds I've had before. It was actually around the 2-3 month mark before I realized that I had not had a migraine in that time period. I have had no side-effects that I am aware of.
Glad it worked for you! I was in a drug trial with Aimovig and didn’t have any consistent results with it at all. I wish the drugs worked the same way for everyone,,it would be so much easier on us all. I’m getting Botox shots now. On my second round and have had some luck in this round..hoping it gets better with each session
I have been on aimovig for a little over a year and it has changed my life. particularly in relation to the migraines caused by flashing lights (including the frame rate of movies and christmas lights) I totally understand your hesitation and appreciate all the research you have done. It's such a personal decision to choose what risks are worth it. For me the pain regularly hit 10/10 and I would have pressed a button to end my life many times over so the decision was pretty straight forward. With such a low quality of life I would have honestly chopped off a limb if it meant I got part of my life back. I do fully expect there to be some long term effects (hopefully I won't actually lose any limbs) but for me the last year has been so freeing it will probably be worth it. I've gotten to look at christmas lights displays, watch old movies, and even went for a drive through a road lined with trees (the light coming through the branches usually is a trigger). My potassium levels are finally normal from not throwing up and if I maintain my current trend I might finally be stable enough to work part time again. I would be really interested to know what research or data would you personally require to feel it is safe? A certain sample size? duration?
For me, the decision is made not to try Aimovig because of the risks of constipation. I have adhesions and other intestinal issues that can cause obstruction if I get too constipated. Because I can take triptan and because with Botox and Nadolol, I am down to 4 migraine events per month (8-12 days of migraine impact) I choose to live with my current treatments. It’s a tough call.
You explained this so well. I completely agree with you about the issues with research studies and FDA approval when long term studies haven’t been conducted. Blind trust in others is never good particularly when it involves your health.
@@farbeneath6581 I had to stop taking it 6 months ago because my hubby and I are now expecting a baby. But it did work while I was taking it. I had to start taking it every other day though, because it messed with my IBS. I was backed up for over a week at one point in the beginning 😆
@@farbeneath6581 I had to stop taking it because I am pregnant! but it was working for me while I was taking it. I had to take it every other day though because it would trigger my IBS 🤭
I was part of an 18 month clinical trial for Emgality. The first 6 months were a wash because I had 3 month of placebos and 3 months of the low dosage. Once I was taking the high dosage, the change was amazing. I didn't have the response that they were expecting, but I still considered it a win. At the time, I averaged about 25 migraine days/month and a typical day was a pain level of 7-8 for about 8 hours. Once or twice a month, I would have a severe migraine (level 10, but I was too stubborn to go to hospital) that would last about a week. By my third injection of the high dose, the duration had drastically decreased. I was still having daily migraines, but they were more come and go. Level 8-10 in pain, but only lasting 10-30 minutes at a time. I was having about 2-3 of these episodes per day. I don't remember any unusual side effects. Later on, my neurologist started me on the low dosage of Aimovig and I didn't see any benefit. I tried to tell her that I might need the higher dosage, but she didn't care. I didn't respond the way she wanted me too, so she dropped me as a patient. Yay. :/
I'm sorry this happened to you. Drs have done this to me too, pisses me off. My body responds weird to medications. Some I need more of others I need less of.
I unfortunately took Aimovig with little research (ashamed to say), largely out of desperation from living with 25+ migraine days per month. Big mistake. After my 4th injection, everything spiraled out of control in my body, and I am still (15 months later) dealing with the damage done. I will never try another cgrp medication, regardless of if it is designed to be a preventative or onset treatment. I honestly am grateful my reaction happened as soon as it did because it scares me to think where I might have ended up if I had stayed on it longer. Thank you for sharing your wisdom from having been in a research/reporting field in medicine.
Do you mind sharing what you mean by spiraled out of control? I'm on my fifth dose and starting to really struggle with depression and jaw issues.... But at the same time I actually for the first time since puberty went a month without an attack so I think it's working but I dunno if those are side effects
@@xoerinjoyox I'm so happy for you that you're finding relief! For me, it took until the fourth dose for a severe allergic reaction to develop. The signs were so minor that I didn't even notice anything until the morning after my fourth dose. Then it all broke lose. By that evening I was in the hospital on IV antihistamines, put on countless oral antihistamines in every class and on a steroid for about two months by an allergist and my PCP. The reaction continued for probably 5 months before even slowing down. Pain every day in my mouth and burning through my whole body that entire time. Because of the steroids, my body developed type 2 diabetes (stopped recognizing its own insulin) which I had never had before. I now have to manage it daily with testing, diet restrictions, and other steps to control it. I also now have regular anxiety attacks which involve histamines flooding my body for weeks at a time with those same burning sensations and mouth pain. I've had to be prescribed an anti-anxiety medication for when it gets out of control (I had never taken anything in that class of meds before in my life). It has been 15 months since the reaction happened and I still deal daily with the diabetes and anxiety attacks (again, I had never had an anxiety attack before in my life). It might sound crazy, but I honestly believe the Aimovig somehow changed my body permanently in some ways in how it responds. I can't even eat foods that are natural histamine releasors because it sends me into a full body attack. I think what's scary and what I never considered before taking Aimovig is the cumulative effect the cgrp meds have in your system and their extremely long half life so that if you do find yourself having a reaction of any kind, it is months before the drug diminishes enough in your system before the adverse effects subside. I also experienced night terrors for the first time in my life during the first weeks I was on it. I really never thought about what could happen going into it. I was so desperate for relief from the migraines! I wholeheartedly wish you relief and a better experience than I had. My main advice is just to consider the half life of the drug so that if you are experiencing difficult side effects, keep in mind how long it will take to clear the drug out of your body if you end up needing to. Please let me know if I can answer anything else from my experience.
@@chriswallace4888 thank you for the full explanation of what you meant. I'm so so sorry that you had that reaction. That is definitely devastating and life altering. I really hope for the best in your recovery. I have been thinking about the half life and how it is essentially building up in my body. I'm pretty sure I'll be discontinuing use which is frustrating because it has provided significant migraine relief. I'm just concerned it's really messing with my mental stability. Every month I've been on it I can like I'm further losing the person I was before emotionally and mentally.
I’m in my forties and have chronic migraines. My headaches started when I was about seven. I’ve tried many triptans among other things. Currently, I’m also getting Botox for migraine. The triptans all seem to work but can make me pretty out of it. Lately, I’ve used Peppermint Halo a lot. I bought it at Sage. I’m very sceptical about essential oil claims, and I’m incredibly sensitive to scents as that’s a huge migraine trigger for me. However, this works really well for me. There are times I definitely still need a triptan, but I’m amazed how often the mint oil can stall or stop a headache that has started. I also have MS and need rest as I get very fatigued easily. The mint oil works best if in conjunction with a dark room and rest. I was on Aimovig when it first came out. I thought it was a total miracle-it reduced my headaches dramatically, both frequency and severity. However, I quit because the constipation, of all things, was so terrible. I have another friend who did the same for the same reason. I am curious if anyone else out there correlates constipation and migraine. Both my friend and I already suffered constipation before starting Aimovig. Also, I’m in Canada. I don’t know if Saje is also in the U.S. Everyone’s story is different. Take or leave what I offer. I wish you all the best with motherhood and your health. My daughter has only ever known a "differently-abled" mother, and she’s grown into an incredible, compassionate young adult woman.
I’m on Emgality one month and have gained 8Lbs, adema, swelling all over, bloated I look pregnant, extreme comstipation and Gi stomach issues and pain that no laxative would touch other than enemas. This isn’t normal comfortable. Tinnitus dining in my head 24.7. Yes it reduced my migraine but I’m miserable in my stomach. I’ll prob have to quit. :(
Thank you for putting this all together and taking the time to share your info and knowledge surrounding the topic! I’m not a migrainer, but I do appreciate educating myself through watching your videos. Keep creating awesome content - we are HERE for it!
I don’t blame you not having them. I had 3 injections of them and I had increased pain and migrainous headaches, I was also a zombie and having more dissociative episodes. I already take 44 tablets a day for my head. Had continuous migraine and migrainous headaches overly migrainous vertigo since 1997! I have them 24/7 never going away. I also have Arnold Chiari Malformation.
I'm amazed how well you function with all your health issues. And am grateful that you are sharing your experience with us all! I have chronic migraine without auras, and have low blood pressure issues too. I never thought to link the two problems. I've had my migraines all my life (about to turn 69) but they only became debilitating around menopause, when I first started taking medicine specifically to treat migraines. You name it, I tried. Nothing worked as a preventative, some had side effects I couldn't live with. Never tried Botox, I lost the sight in one eye 4 years ago and didn't want to risk the other eye. My new pain neurologist started me on Emgality in September and, for me, it was like a miracle. From roughly 24 migraines a month down to 3 to 6. I respect your choice to avoid this class of drugs, at least for now. I take Rhizatriptan for outbreaks too, buying it outside my health insurance. Besides the health issues I already mentioned, I suffer from Celiac Disease. I had to figure this out myself. Gluten was the first food that I worked out that triggered my migraines, more followed. Still can't eat any of those foods. Air pressure changes also triggers them. My last plane trip was horrendous! Haven't tried flying on this new med yet. I'm wishing you all the best! Buddy is amazing! Your husband is also amazing!
Hey can you give us an update on how you’re doing with the medication? And how about flying with it, did it work now? Flying is also the worst trigger for me and I’m not sure if I should dare some more serious medication for migraine prevention. Thank you ❤
I stopped Emgality after about a year, when it stopped working for me. Doctor switched me to Ajovy which did a great job. I currently don't use any preventative and am only getting 1 to 3 migraines per month. I started meditating about 6 years ago and my psychological state altered. I began to let go of things that used to cause me stress. Because of the COVID restrictions I ran out of my Ajovy prescription and the doctor couldn't see me for 11 weeks. So I was forced to go without Ajovy for two months. The first month was hard, but the second month I had one migraine. After discussing this with my doctor I decided to test going without. My meditation practice helped me to react less to outside situations and seems to be the real solution for me.
I tried Qulipta and Ubrelvy briefly, but they seemed to have little, if any, positive effect, and made my constipation worse. ;P I’m now on Duloxetine as a preventative, and it’s working WONDERS. :D This is why I love this video. You challenge us to think critically for ourselves, you back up your thoughts with personal insight and facts, and you use reference research, using all of these to come to your own personal decision. We all may have our own approaches, perspectives, and preferences, but you show us the types of questions we can ask so that we can come to our own conclusions, which (IMO) is exactly what’s needed. THANK YOU for putting together such a well thought out video and for offering your well-informed opinion with grace and humility.
I'm all migrainey and concussions and funky so often right now that I have some difficulty interpreting research articles, so I thank you deeply for a great jumping off point in my journey. Thank you for existing in the migraine world. Sorry if I don't word things very well right now, I'm in the middle of a migraine that will not let go.
I found your videos via the algorithm and subbed! Super interested to get to know your life and struggles, but I love your "vlogging" style - the rambles have a point and are enjoyable. This is also the exact same reason why I'm not racing to our local clinic to get the new pandemic vaccine - small sample sizes and short trial time! But explaining this to people seems difficult... I'm not even political about it.
Your past degrees and work...I'm hooked. You (please pardon the pun) have your head on your shoulders. An intelligent person who can critically think and reason in the world despite what the "experts" say. I have a similar background and tend to shock people (doctors included) when I challenge the current narrative. I have also seen the shady antics of the FDA and big pharma. You are not alone in your thinking. In others words...you go girl. Stay strong!
I hate the feeling like we the public are Guinea pigs for these drug companies! It really makes me nervous to take anything! Migraine with Aura here! My mother died from an aneurysm and I hate my migraines and fear death every time I get one. I’m so so tired of this. 😢 I’ve taken ubrelvy lately and my migraines have increased by a huge factor!
THANK YOU for this video. This is the perspective I have been looking for - my ADHD and migraines make it difficult for me to swim through all the info to find the relevant parts by myself. I will not be touching these meds, I am already highly concerned about having to take potent vasoconstrictors
37 year old male pharmacist here. After dealing with chronic daily headache for 2 years, I finally took the leap and tried a CGRP. Ajovy, sample from Dr in office. Woke up the next morning for the first time in 2 years and legit shed tears because I had absolutely no pain. Now, that was 2 weeks ago. My chronic headache is tremendously better. But about 10 days ago I developed near crippling back pain, that hasn’t gone away. I’m not sure if the two are related, but very coincidental if not. Not really sure where I’m going with the treatment, but just wanted to share my story 2 weeks in.
I literally just posted a comment saying I experienced the exact same thing. The back so severe the dr has given me oxycodone, the pain in the back is so much worse than migraines!
@@KarenJarrett-xc8wx If it makes you feel any better the pain lasted for about 5 weeks. Nearly positive it came from the shot, which I did not get again.
Hi there, thank you for your perspective and for sharing the information. I had no idea about the role cgrp plays in the body so it's so important people have all the facts so they can make an informed decision for themselves :) I've been taking Ajovy for 3 months and the benefits haven't outweighed the risks so I am going to give it a break for awhile. Glad I found your channel :)
I know this video was from 4 years ago, however in the scheme of things that’s not that long. I appreciate all the time and effort you took to do the research to provide this content. I’ve lived with Chronic Intractable Daily Migraine for 9 years. I was one that was very excited when the CGRP chatter started, then once some of the drugs came to market I looked into some things and just didn’t feel comfortable being a guinea pig (so to speak). The FDA can only do so much to test a drug. It’s once it’s come to market in the real world. Do they really get their outcomes. My neurologist a few years ago told me I should try Emgality. Before I could blink, my shirts, approved it, and it was sitting in my mailbox. I felt guilty, but it sat in my fridge for over a year before it was discarded. My point is, if you don’t feel comfortable with the new medication, yeah the right to not take it. Appreciate You!!
@@MommingwithMigraine this video was so helpful. Especially since my husband takes Amovig and has TBi we know what to watch for. Makes me nervous tho. I am to apprehensive about Crgps because once your on them it's for the long haul ... And like you said...we don't know the effects of that yet!
I'm in the UK (Wales to be exact - land of the Dragons!). I was prescribed Ajovy in august (although I am yet to actually receive it from pharmacy due to funding issues). However, I also have familial hypercholesterolemial. My cholesterol aged 38 is super, super high and currently unmedicated as the statin I was prescribed (Atorvastatin) gave me migraines. From watching your video, I am definitely going to do a lot more research (I'm a psychology undergrad so love my research) as 1) I am already at a ridiculously high risk of heart attack and/or stroke (I also have a family history of stroke from my grandfather) - so obviously do not want to risk anything that might make that risk higher still, and 2) I can't help wondering if my statin increased my CGRP as a protective response and therefore taking anything that could lower what is protecting me naturally may not be the best idea. I am currently on propranolol 120mg daily and sumatriptan (via tablet or injection) as an abortive. I've tried pitzotifen and amitypriline in the past also. I've been on propranolol for over 10 years now and it's lost it's efficacy and the side effects are beginning to wear very thin as trade off for a lower reduction in migraines. I was hoping that an anti-CGRP was going to be my life saver. It's advertised as the drug with hardly any side-effects - so to realise there are some likely highly undesirable ones that will only be discovered as they use the likes of myself as a guinea pig is very worrying! I'm off to do more research! Thank you for opening my eyes that I shouldn't just blindly follow the good stuff but check that all that glitters is in fact gold and not just gold-plated! Sending love!
That last sentence about gold is epic! Hope your research leads you to a conclusion you're happy with. I'm also on propranolol, but only 30 mg 😄 Have you seen my Ginger video? That could be a good option. I've had decent success with it as an abortive so I started taking it preventatively.
This was really interesting, could you maybe at some point do a video going through how you do your own research, where you find the articles and how to understand what they're saying. I find your channel so interesting even though I dont have migraines.
I think this is really important and she should defintely consider this video idea. I know I have had classes and worked with reading and breaking down scholarly articles, but it can be a process for people who were not educated in doing that. I know finding them can be difficult too as many articles I look at for college are through subscription search websites that most people won't have access too since they aren't paying for the use of the database.
I was on this medication for about a year. I started having tachycardiac and hypertensive episodes soon after, and continue to do so after a year of stopping the medication. I wish I knew this before. Edit: It's been two years since stopping now, the symptoms excepting the high blood pressure has resolved. I have not changed anything regarding triptans, neurologist and internist agreed that was not the issue. My biggest game-changer was starting venaflaxine HCL (brand: Effexor LR), it's off-label use reduces the sensitivity of my nerves. I don't struggle with hair-trigger nerves anymore, migraines are vastly improved.
I just for the first time in my 57 years was almost type 2 diabetic. I’ve never had that before. I’ve been on emgality for a year. My nature path doctor said I should stop emgality since I’m on bioidentical hormones for menopause and migraines decrease after menopause. I won’t take the jab for covid because I hate Big Pharma so why should I trust them to help me with my horrible migraines? I’m going to stop emgality and have the naturepath help me.
I just started emgality January 14th and it’s been horrible. The side effects are bad. Tachycardia, heart palpitations, depression, anxiety, vision changes, neurological problems. I’m in and out of the hospital. I’m young and I’m having heart problems and the website did not say you could have this side effects. I want to sue this company. This medication is going to kill someone.
I was super critical because of your title and the first part of your video I was thinking "...she for sure has Ajovy in her refrigerator right now" because how could someone be so critical of something that could be so helpful to their life. I'm not into any biochem or anything I'm an engineer so my research in this area is limited, though this is also not your particular area of expertise as you indicated, by the end of your video I was so much more enlightened. There were some eye openers in here and some definite things to keep my eye on, probably not enough to keep me from trying the drug as the migraines are debilitating and I already have most of the side effects already....lol. But the thought of how the body could be utilizing CGRP is very interesting and is worth keeping an eye on in the future and doing more investigation into..... Thank You!!!!
I SOOOOO appreciate this comment. I love that you came in here with an open mind, and I'm so excited that you've come to a decision you're happy with. ALLLL of my fingers and toes are crossed that this medication gives you a great portion of your life back!! It's been a game changer for many.
Thanks for taking the time to explain this. I too have wondered? Although I haven't done the extensive research I read enough to understand that everything you're saying is valid. Also I did try an injection and did notice side effects. Respiratory ailment nothing major but when I reported symptoms of running nose, scratchy throat as well mild breathing difficulties I was quickly taken out of the program by the pharmacist. It was not working great for me. Much appreciation to all that have helped in my exhausting journey. Have a great day. If today's not going great look forward to a potential new start to the days to follow 🤞
Thank you for your well-organised, articulate and balanced video🙂 My particular bane is chronic cluster headaches and "they" are also suggesting anti-CGRP treatments for that. I generally avoid medication because of a variety of principles but I was intrigued by the press about it, and when you are in agony every day, principles tend to have less of a voice. I will keep searching. Thanks and keep up the critical thinking!
Great video, and great info! I found out about Aimovig in a fb group post and checked it out and went and asked my doc for a prescription (it has just just been approved in Canada). I have tried all the preventative and did not tolerate them (made me sicker than the migraine) but MaxAlt (rhizatriptan) works really well. I was getting 12+ per month, and went for a consult to get botox injections in my head (scary). I did not investigate the biochemistry but tried the injection and it honestly worked so well. I went a whole month without a migraine and it had been almost a decade since that had happened to me. The reduction in migraine for me was/is wonderful. I got my life back. You really don't realize how much of your life you modify to accommodate your migraines. Recently I had a cluster of migraines for about a week (not sure why, could be the coffee I had, could be weather, could be that I was close to the time to take the next injection, could be stress, or all of the above), and holy crap did it SSUUUUCCCCKKKK! I had forgotten how terrible my life was before with so many migraines. I think it's a miracle I could hold a job and get through grad school and hold a relationship. I definitely understand your concerns, and now I have them too, but quality of life is a big factor. Another thing that I wonder is about depleting effectiveness with long term use, like as you continue to use it you require more to get through he month. Also, Aimovig is hella expensive - in Canada its >$650 per injection.
Im a legal assistant. My first job in my field was working for lawyers who sue pharmaceutical companies for outright lies about research, clinical trials and side effects of "wonder drugs". Most of the clients were next of kin because the people who actually took the drug died from a side effect that was covered up. I left that job because it literally broke my heart to hear the stories. To be the one on the phone comforting a newly grieving wife or child as they told me their family members passed away from their injuries. It does make you think twice about what you are putting in your body
You are amazing!!! Your body is yours and your decisions are yours to make. If anyone has a problem with you doing intensive research into what you put into your body, they are just silly. Keep at it girl!
I don’t have migraines and I have no idea how I came across your channel, but I watched the whole thing because you broke it down so well and I found it very interesting.
I’ve been on Quilipta Ifor a month. The first two weeks it seemed to reduce my migraines, now I’m back to daily migraines. I’ve experienced the following side effects: EXTREME fatigue every day. I never use to take naps. I take a nap for 2 - 3 hours a day and I’m always exhausted Non stop nausea and heart burn. Non stop Constipation like you wouldn’t believe Low sex drive (low drive or motivation to do anything) NO appetite. I found these welches smoothie pouches I can force down to get some nutrients but I never feel like eating
I went on Emgality when I was 18, and it caused me insomnia, plus I had a surgery that the scars are still very visible 4 months later. I just got off the medicine before watching this video, but some stuff you said is really making sense about what I was feeling when I was on it.
I do this kind of research on medications, as well as my medical issues, and it's the only thing that's gotten me anywhere with my health. More power to you, girl. You're amazing.
Ajovy changed my life!!! Years of trying EVERYTHING. I am doing research that CRBG might be connected with bone loss. At the moment, I can go 3 months without a migraine from 1 shot. I'm continuing to do my research on the bone loss connection as I have osteoporosis in my family.
Thank you for helping everyone be more informed! I just took my first dose of Aimovig and the doctors started me on the highest dose (140). Noticing a slight improvements in daily headaches and migraines but also constipation. Scary thing is I have a large blood clot in my brain and also APS (blood clotting disorder) so I am high risk for stroke and heart attack. WHY would the doctors put a patient like me on these meds???? Maybe because I am 55 years old so I'm way past the 30 year old mark? One symptom that I have not heard anyone mention but may be a side effect is my creatinine level is high. This is so frustrating, I spend most days in bed and have not been functioning since September of 2019. I'm at a loss 😔
I'm so sorry this is happening ☹ You can definitely bring up those concerns with your doctor if you are feeling uneasy. You're still very early in your journey, and there are lots of things you can try! I hope you're able to get some of your life back 💜 *If you're having trouble emotionally, I highly recommend checking out Natalie from @mindfulmigraine on Instagram (**www.mindfulmigraine.org/)**.* She helped me soooo much with finding joy through pain and accepting the things I cannot change about living with this disease.
Hey Jennifer! This is an excellent video -- very informative and clearly communicated. Thank you so much for taking the time to do credible research and honestly sharing your findings.
Not to start a different conversation, but how do you feel about the COVID-19 vaccines and the entire trial process from beginning to end being less than a year?
Vaccines are different. Long term effects of vaccines are seen within the first month. If no effects within the first month, it is extremely unlikely to have any side effects beyond this - the vaccine itself does not stay in your system to cause them. The reasons why the vaccines have been made so quickly is because the funding was there in a way that it hasn't been for other vaccines. Usually, you have to apply for grants for research (which are often turned down), that hasn't happened with the C-19 vaccine for obvious reasons.
You also have to consider that you only get two shots of the Covid vaccine (maybe annually in the future) and the vaccine itself is not supposed to at a constant level all the time. In contrast, the discussed medication is supposed to be taken monthly/ every three months which means the patient constantly has it in their system. I’m not an expert and this is just my understanding, please do your own research, but I agree, a video about her opinion on the vaccine would be great (only if she wants to do it, since it doesn’t really align with the rest of her content).
First, I'm not anti-vax. I had my flu shot in October :-D! That said, many of the same issues discussed here regarding anti-CGRP arise with a vaccine that is not yet FDA approved. This is especially true with long-term complications, issues that are maybe silent right now, but could slowly make their appearance known. The idea that issues will be seen within 6 weeks or so is sometimes false, and people like the most outspoken FDA committee member, Paul Offit, know it because they've experienced it -- and Offitt even spoke about it prior to his recent jumping onto the Covid vaccine bandwagon. Vaccines that fail or are found dangerous have varying times from vaccination to failure presentation, just as this drug might. The Covid vaccines are approved for EMERGENCY usage (via an FDA EUA). It is not the same as the typical approval, and the short-cuts taken to this approval are a huge chunk of why the vaccines have been released so quickly. Months before Covid arose, papers in Nature and other high end journals discussed concerns about long-term safety issues of mRNA vaccines, in terms of issues like autoimmunity. These were unknowns. One weird but telling thing is that even China's lead medical official considers mRNA vaccines risky because of unknowns and has put them on low priority for release in China....but China is ramping up vaccine production for other countries! As soon as Covid came onto the scene, suddenly those concerns in the US were shrugged aside. Issues like autoimmunity sometimes slowly develop into overt disease (it takes awhile for your body to attack its own organs enough to create overt disease), so not unlike the anti-CGRP drugs, it may be years, if not decades before we know what issues -- if any!!!! -- arise. The philosophy is that Covid the disease is worse than the vaccine "cure" and so the vaccines have been released and the FDA will decide later if they should have allowed them. Not only do we not really know about safety of the vaccines, we also don't know about efficacy, given that they were tested under lockdown conditions. Cases are down, but testing is down and we're coming into spring when the seasonal decrease in virus takes hold. So who knows. My personal position is if a person is high risk for deadly disease (elderly but not extremely fragile elderly) or works perhaps in healthcare, then maybe it makes sense to have the vaccine. It should be a choice, not forced. I think people who can isolate should continue to do so until this vaccine is actually approved (and not just at an emergency level). And my experience: I also have a cell biology undergrad degree.
Hi Mw/M… YES you are spot on. I didn’t do any research, had horrible experiences with several CGRP meds, and sought out a very good FB group of peeps who are also having all kinds of horrific stories. I can’t imagine the damage from this class of meds flying under the radar too much longer, the side effects and adverse events list is absolutely bonkers!
I tried vyepti the first 4 days I didn't sleep. The first 2 weeks no migraines. 😊 Then they came back. It is in your system for 3 months. The last month my back and neck muscles were so tight, and also muscle burning. Was it due to this medication I don't know. I have Fibromyalgia and I think the medication had something to do with the flare up, but I'll probably never know.
Just found this video and I'd love to know if there have been any more updates to these drugs over the last 2 years. I have been on countless medications in every category over the last 7 years and I've now tried all 3 injections. I tend to be in the 3-5% of patients who get those side effects that no one hears about. I've been looking for some information just like this because the blocking of cgrp had me thinking as well. . Aimovig had no effect on my migraines at all. Emgality was amazing but I had lots of numbness in my hands. Switches to Ajovy after 3 weeks of no emgality and now I have numbness in my hands and feet so these are a no go for me. I'm high risk for heart disease and stroke. Thanks for the information.
You time and efforts were not wasted! Now that I’m going back and binging your videos and learning more about you I’m super pissed that migraines have taken away your job! We need you! I now understand why your videos were more than just “logical and obvious” info for the migrainers. I love a scientist fighting for treatment AND facts. Then we can make informed decisions. Thank you! I can’t help myself. They way you talk about Anti-CGRPs makes me think of the c0v1d vacc1ne. It happened so quickly, and essentially the trial is happening in real time. We’re learning more everyday about 1)the virus and 2)the vacc1ne’s efficacy, including the variants. I know you’re not a specialist, but I’d be curious to hear your “layman’s” opinion of this unprecedented vaccine and its application. (For the record, I 💯 believe in it and am getting my first dose on Friday.) Thank you for you videos and information! 💖
This is a fantastic explanation of things I've been worried about. I've been on emgality for a few months and i noticed gastrointestinal issues and body pain. Also higher blood pressure. I'm not thrilled.
Great video! Have you looked into neuromodulation devices, like Cefaly and Nerivio? My migraines are incredibly well controlled with both Botox and Aimovig (but not one or the other), but we are trying to conceive and I won't be able to continue either during pregnancy. Now I'm hesitant to resume Aimovig after delivery. I'm excited that there are so many options these day, but it is rather overwhelming to choose what to try, especially when they're so dang expensive.
Oye. Okay. I’m a little freaked out now. I blindly followed my doctor’s suggestion and the FDA approval. I knew there were some side effects, and I’m in a few migraine groups and chats where people reported various side effects. A major one I’ve seen is hair loss. I took Ajovy March-December 2019 with some improvement in severity and then a 3 month streak of being migraine free. Come January when the copay card expired, my insurance did not cover it. I had to try Emgality, which not only was extremely painful to inject for some reason, but it also gave me extreme anxiety. We stopped and side effects subsided. I started Aimovig at the end of March. Not seeing any results really, so I’m supposed to switch to Ajovy again tomorrow to give it another shot. My migraines have turned from episodic to chronic, and now this year to chronic intractable. 👌🏻 Thanks body. 🙄 Definitely second guessing going back to it now...I hadn’t given it much thought before.
I also had trouble with Emgality being EXTREMELY painful. I called my doctor in a panic because it was burning 2 minutes after injected. I thought this could no way be normal. I'm switching meds because the pain is not worth lack-luster effects.
So appreciate this information because at least now I am more informed and I’m glad you did this for all of us thank you so much I’m going to better examine my medication that I take for my migraines especially with interaction with other medication that I do take for my mental health
I am 60 yr old so I am happy to be using ejovy injection, with ubrevly acute. I am happy to be the trial patient and hopefully will help others someday, especially young moms. I have vertigo/migraine and have had such great success. I can take ubrevly with caffine and come out of a vertigo attack. Which in the past could last 6 days or living hell and tortured and begging to die…. So I have a life, and old age life but a very full life with lots of grandkids and family! It’s wonderful and I cherish each day, just in case medicine gives me side effects that shorten my life. I’d take that over the living hell of vertigo/migraine controlling and ruining my life. Easy to say now, feeling good, I know…. But keeping the strength and hope.
I appreciate your information but I also have a question what should you do if your migraines are so severe that they have you curled up in a ball ready to no longer be here God forbid so what is it that you recommend what do you take
So very interesting! My neuro here in Australia is about to start offering this and I really wasn't sure if I should give it a go, think I might stick to the botox treatments for my migraines for now.
I’m in Uk and have been having Botox injections for migraines for about a decade and today have been offered emgality after watching this I’m going to stick with the Botox…
You're the best, thank you for the video. Can you speak to Triptans and vasoconstrictor type action? I suffer from nerve/migraine related issues and it seems only Triptans that do vasoconstriction appear to work. Because of this, I am hesitant to take CGRP type meds.
When you're taking a tripton it's an abort medication not to reduce the intensity or the amount of days of your migraines but it's a great abort medication if you take it on time and with some other medications but I'm not going to try cgrps ever again I've been up for 21 days and having small issues that realize like my cuts not healing and I mean not healing for 3 weeks my stomach I don't know what else a light headness but really not dizzy it's like a strange funny feeling that told my son I hope I'm not falling down but it was so strange it went away in 2 hours. Inflammation it was more on some surgeries I had that flared it up I don't know what else I could think of something it's just not right
I wish I would have found this video years earlier. I had taken Quilipta for about 2 years and did feel like I got my life back. Recently, waiting for a PA lead to running out. 3 days later, I have had the most intense migraines daily, but I am determined after watching this to try to stop. Oddly enough, Iused to have low BP which has raised, I have had 2 years of herniated discs in my back (1 actually broke off), and was contemplating another hip replacement (I'm a little young for this) because of the level of pain. Today, not much hip pain... ??? I had been wondering for the entire time of being on the drug, if I was harming myself Cardiovascularly and healing wise by blocking this peptide. Last thing, I had tried Emgality prior to this and had terrible allergi reactions... even these weird painful sores developed on my fingers.
Thank you for this video. I was considering taking these new treatments because my migraines have gotten out of control and I just want some relief. I think I might look at other options because I had no idea about these potential side effects. Knowledge is power. I'm 42 years old and I do need to think about the long term usage of these new meds. It may feel great in the moment but it's not worth it.
CGRP antagonists made the constipation and gastroparesis that I already have from hypermobile type Ehlers Danlos syndrome worse. The POTS medications Guanfacine or Clonidine taken before bed is what best prevents my migraines, and they also treat my insomnia, restless leg syndrome, and anxiety-like symptoms.
This video was really helpful to understand some of the precautions that should be noted with taking his medication‘s, I’ve tried all the preventative medications aside from the CGRP inhibitor‘s and so my neurologist suggested I try this. I’m planning on trying it out once I get insurance but only for the fact that my migraines perpetuate some of my other chronic illnesses and I want to try and get those under control, and to take medication‘s for so many things so if I can give my body a bit of a break from painkillers that would be a win for me. I am the sort of person that is sceptical of medication and aware of how my body responds to things so I guess we’ll see how my body responds to this 🤷🏼♀️
so interesting to hear your background and thank you for this indepth research. Unfortunately the celebrity ads make it appealing to sufferers who don't do any or can't do any research and trust doctors who push drugs by the drug companies for vacations, etc. I understand now why drugs are recalled so soon.
Thank you for such detailed explanation. I’m really grateful. Can you please give your opinion about entyvio, for crohn’s diseases. I’m so important for me. Thanks again
Thank you for this video! I don’t have migraines but I’m on many other meds that I should really look into more that I’m on. I need to make sure it’s something that is worth the help. I wish they had to explain all of the things you said when being prescribed. I’m sure you spent a while putting all the information together! Thank you for this information!
I have to say this, I've been binging your video's today, and also found out today about you biochemist background. The background (even though it's a bit sad to "need" one) does make your video's a lot more trustworthy and wonderful to me. And I already loved your channel before. I hope you continue to get subscribers and likes so you can continue to support yourself, even though you had to quit your main/ previous/ chemist job.
Thank you. I’ve been on the fence with FDA and quick approval of everything of late. Very hesitant in taking any drug even though my body has formed an attachment to Fioricet without codeine. So over worrying about the PUSH to take these meds. I reluctantly agreed to have Ubrelvy in my household because I’m relying on Fioricet. I’ve been given no advise on how to take this nor how to reduce the other. It’s so crazy. I’ve been on Fioricet for over 10 years. Recent events with another very real disease SSCD has caused increase in migraines. It’s do crazy. I’m going into Functional Meditation Functional Healing now. 😳😳😳. Praying this is the means to help heal these migraines. I’m 60.
I am in Australia and I tried Emgality but I didn't get any benefit... I was paying $263 a month for it for 6 months. This was during a period I was taken off my propranolol, but still getting botox and taking topamax. I was so disappointed. My mum tried Ajovy and had bad side effects, nausea and stomach issues, which she never has with her migraines/chronic headaches. Though my aunt on Aimovig benefited. In Australia Emgality is on the public medication system as of 1 June, but you can't get public botox and it at the same time. I went back on propranolol and up on topamax and I finally having relief for the first time in years (1 migraine a week!!!), but also I just got diagnosed with POTs (and seronegative rheumatoid arthritis just before that), so I am unsure what is impacting what. Before that, I thought all my symptoms were migraine symptoms...
I have migraines as well.....They're horrible. But I choose to not take anything unless I've had one for many days at a time. At that point I am open to taking something. But all of the possibilities is very unnerving. Thank you for such an informative video! I very much enjoyed it!
Thanks for this video. I was slightly skeptical of anti-CRGP drugs from the efficacy being only modestly better than existing drugs. However I'd suggest that some of your criticisms of the clinical trial in the video, apply to most clinical trials (e.g. such as selection criteria). As such I think those criticisms need context, the usual thing is to expect real world effects of a treatment to be less than seen in clinical trials (because the diagnosis is usually clearer in trials, the people prescribing them more expert in trials etc etc - indeed my GP was all for joining clinical trials precisely because you get treated by the best doctors in that field, and they may well help you, even if they reject you from their trial, such as by correcting your diagnosis). The other thing missing is comparison. If we aren't taking injectable anti-CGRP drugs, how are we managing our migraines? I was prescribed Topiramate, and within a few months the side effects were nearly as bad as the migraines it hadn't stopped (sigh), steadily eroding my ability to speak coherently. Alas the current protocols drive patients to try all the "serendipitous" migraine drugs first often including Topiramate. The only thing I have found that has much effect is Candesartan and Triptans. My guess is FDA approval is granted in part because Triptans do a similar thing but with well known side effects (and counter indications) which don't all seem to apply to this new class of anti-CGRP drug. Candesartan similarly is not side effect free. So when discussing risks we need to say "compared to what" (and as several commentators have said, continuing to live with migraine may not be a tolerable option). The above sounds quite harsh, but I don't mean to be, your commentary was really insightful. And there are lots of people paid to sell these drugs, so refreshing to find someone looking at it critically who clearly isn't being influenced by the drug companies.
I to suffer from daily migraines and vertigo. The only medication i found to work for these migraine attacks is triptans. However, triptans are temporary. They arent used as a preventative daily medication. More so “migraine attacks”. I tried triptans and they work. I tried the lower doses - 40mg - 50mg. My dr doesnt seem to want to put me in the 80mg doses. Because when my migraine is really really bad. This lasts for 4days plus. Usually the 40mg tablet is not strong enough. But it is strong enough for the daily “usual” migraines. Not so for the severe migraine attacks. If cgrp dont work. Im guess only option is ibuprofen and triptans daily which is hazardous. On a daily basis. It slowly destroys your liver. Also makes you immune to pain relief medication. Botox i have not tried. Maybe i should? If cgrp is bad. Causes side effects. There really is no option left. ……… topamax, candesarten etc all have side effects too. Not to mention sertraline an ssri drug. After 3-4 days, that made me paralyzed. It did something with my eyes. Slight look to left, or any eye movement made me spin or give me severe vertigo. I was immobilized. Bed ridden. Luckily i took a nap it went away. Still have side effects from it, sensitivity to light, blurry vision at times, eye sensitivity etc… It did something to my eyes and brain. Like someone was spinning me in circles real fast and doesnt stop for hours. Cgrp might have side effects, but every cgrp is different to everyone. There is another to try ajovy. Less side effects.
@@airforceone6523 I hope you can find some relief. I was switched from sumatriptan to frovatriptan because it "lasts longer", and it does. I take a tiny sounding dose (2mg iirc) and the headache pain is gone for nearly 48 hours. This means I can treat a 7 day migraine with 3 doses. I'm still left with other symptoms but at least it hurts less.
@@51monw never heard of frovatriptan. Maybe i should ask for it. See if that works for me. Migraines impacts your life. I wish it would go away after day. But chronic migraines……noone will know that feeling unless they have gone through it. Hope yourself gets relief from chronic migraines. Best of luck.
@@airforceone6523 doesn't hurt to ask about frovatriptan, mine is distributed by Glenmark. Hmm reading a bit maybe I should be taking more. 2.5mg tablets, but apparently you can take up to 3 a day, up to the usual 10 triptan days a month.
Thankyou so much for this information. I've been taking emgality for months and it has been a miracle drug, I've been able to live life again....however....this very much could be coincidence but about the time I started taking it, I began having lower back aches. As time went on the pain became worse and worse. It became very severe. By the end if each month when it would have wearing off my back pain subsided. As soon as I took the next injection, the severe pain came on the very next day. This happened twice and the pain is so severe that I've been too scared to try it again. I'd love to know if anyone else has had any similar experience.
I know this video is old, but the algorithms threw it my way and I, currently, am taking (when necessary) an abortive CGRP inhibitor (ubrogepant/ubrelvy). I have or have experienced several of your conditions: Migraine w/ multiple aura (just became chronic the past 3 yrs) Hypermobility (my whole life) Raynauds (past 3 yrs) Chronic fatigue (past 5 yrs, but have always been a "sleepy" person) I did look up the drug and it would appear there were no severe side effects? However, I did not dig to find "the fine print." The drug does work (aborts migraine) and saves me from potential days of pain and loss of productivity as my migraines can last up to 76 hrs. I am interested in your updated thoughts on these abortive meds. Know you're busy and this is an old video but I also wanted to say thank you for putting this out and yourself and your illnesses out there. Much love to you and yours and everyone else out there who deals with this crap on a regular basis. ❤❤❤
I appreciate your comments and research time! I recently was prescribed Aimovig but can’t afford it and am applying for assistance. in the meantime, considering the side effects of Aimovig . I have classic migraines and ice stabbing pain with them. Also trying to reduce rebound headaches from years of overusing BC powder for daily headaches. You have provided much to ponder. it’s a. little scary for sure. AND I want to end my pain. Makes me very curious what you use to treat your pain? Maybe I missed that video. 🙃
Thank you for sharing this information. I've had good results with Ubrelvy and Avovy but have also opted to stop and see what other data emerges over the next few years. I share your concerns.
Thanks for doing this video. I’ve been having post concussion syndrome and post traumatic headaches and migraines every day for the last year. The dr wants to start me on sumatriptan and aimovig. The Insurance company just denied the aimovig and wants me to take emgality instead. I was thinking I must be a crazy person for not being comfortable injecting these drugs into my body. I’ve been reading reviews and information for the last week. Everything you said is right on track with the things I’d been thinking. Is the risk of what could happen from these drugs worth it? It seemed like there wasn’t a huge difference between placebo and medication in the studies. Anyway- thank you so much for doing the research you did. I’ll still continue doing my own research, but I think I am like you- I’m not a test subject. And I honestly don’t want to trade the headaches for other side effects, or worse- take the medication and get side effects while the medication doesn’t even help the headaches. Then really what would the point be?? I’m also not going to take the sumatriptan. A couple of days of relieving a headache out of 30 days of headache isn’t worth the risk for me.
Ajovy was very harmful for me. It caused severe difficulties in concentration and restlessness, to a degree I had major problems with my work and social life. I know this for sure because I paused it for 3-4 months and my mind stabilized during this time. I used it again because it is very efficient with my pain. But my problems returned. Now I have quit it some 3 months ago and I am now back to being myself again. So, not for me, alas.
You were awesome! I love how you explain the importance for you or drugs having been followed for longer than"recent appoovall" and 3 % of ppl having serious reactions is very concerning. I think a drug think this should have had a large and long trial b4 approval too. I tried nutrec 3x. I used topomax was a controller. Nurtec makes me SUPER nauseas! Never had that happen as a drug store effect! Maybe it's CGRP effects digestion 🤪
Thank you! I don't have a concrete opinion on whether it "should have been" approved because it's already helping so many people. I just hope it isn't also hurting some people when we/they don't even know it. Such a catch 22.
@@prairiedog8482 I have taken topomax as a controller for 2 yrs. It works for me. That's all. I don't have a good abortive option but nurtec seems ok actually. As long as I take zofran to.
I know is an older vid but I just want to telll you thank you for the amazing, incredible and real life info and personal things and excellent strength and effort that I see behind the pain is admirable to ME PERSONALLY 💜 I’ve several personal disabilities that only my immediate family get to see and even with them I try to hide a lot. But even In that is impossible. I figure you likely get what I’m saying......I wish you didn’t tho.....I wish NONE OF US understood any of this side of the circle of life.....(makes no sense.....circles don’t have sides???) anywho....... I have a feeling you and I could have a pretty interesting chat lol.....or 100. But for now, I just want you to know I’m here, I hear you, I care and I’m wishing, praying and trying to manifest a safe solution for YOU, EVERYONE WHOM IS SUFFERING STILL AND EVEN MYSELF.......❣️
I went on Aimovig 140mg pretty fast after starting my migraine treatment journey. My mom and I are both nurses so we were both concerned but I wanted to give it a good try. I had checked with people in migraine facebook groups and figured on it being a low chance of helping but I was desperate. Started in October and stopped in January. I got super depressed (more than my usual which technically could've been from the migraines changing my life so fast) and it also caused a lot of weight gain. Like 30lbs in that short amount of time and I'm still trying to get that back off. The other thing we worried about was the immune effects since "mabs" are used in disease processes like MS. Which even my doctor denied as a possibility and I pretty much decided she was in the camp of "if it's not a listed side effect then it can't be a side effect". I did try Ajovy as well for about 3 months without the depression and weight gain but that's where I called it. It also worried me that my doctor wasn't concerned about my not being on any birth control and there are no reasonable studies on the effect on pregnancy and a fetus. I took Ubrelvy (the new abortive) about 2 times and it didn't help and made me dizzy enough it's now listed as an allergy. For me, since I saw nothing but bad effects without improvement and with my desire to have a family soon, I called them quits. I'm still desperate, maybe even more so now, but I don't want to continue to compromise my health in other ways. I didn't know at the time that these were potentially increasing my stroke risk. I really appreciate your analysis of the information surrounding these drugs especially with your background! You have some very educated guesses on potential long term side effects. In the meantime I've heard about others with depression, hair loss, weight gain, anxiety, increased severity of their migraines, etc as side effects that have been experienced on any of these drugs. Hopefully that was okay to understand cause... hello migraine brain...
Wow, I can't believe you had such a strong reaction to it so quickly... and your doctor sounds just like mine. Not really concerned, not looking at the whole picture. Sometimes it feels like they're numb to this stuff! Hope you're able to find relief in other ways. Thanks for sharing your story 💜
Fyi, mab stands for monoclonal antibody. Monoclonal means that it is made by 1 unique cell so it's not a mix of antibodies. An antibody is a molecule that binds to another molecule, and this molecule is made by the human body instead of designed by a researcher. Yes, people with MS probably form antibodies against their own tissue. That's the same in other autoimmune diseases: autoimmune means that your immune system turns against yourself. Their immune cells make antibodies against the material their nerves are made of. But this antibody is monoclonal, so it's 1 type, and this type has been shown to bind CGRP, not the rest of your body. It's really really unlikely that you're going to get MS by it. Antibodies are really good at being specific: binding only one molecule and no other one. (That's why you can be immune against one kind of flu and get another one. Your antibodies are specific enough that they can recognize this flu, but the other one doesn't exactly fit their binding place.)
I'm so sorry to hear about your experience! Unfortunately this is similar to my experience with Emgality! It worked wonders but about six months in I started getting rashes on my arms and legs, inflammatory eye issues, and severe diarrhea. My markers are high for inflammatory bowel disease. I also gained about 40 pounds that I have been unable to lose since coming off. My neurologist thinks I'm crazy because no one else has reported these side effects. She basically dismissed my concerns and wouldn't report them to the FDA!
@@MommingwithMigraine oh. i don't suffer from migraines, but i have been experimenting with vitamin D doses for other reasons, and i noticed that suddenly dropping from a larger dose to a smaller dose has left me with a headache all day, which led me to wonder whether vitamin D protects against headaches. looking online, seems there has been some promising investigation of the use of vitamin D for treatment of migraines. perhaps related to CGRP, which is what led me to your video out of curiosity.
I am a migraine warrior. I tend to not be able to focus long enough to do justice to research. I know if I look hard enough I'll find things saying a single thing is black, white, and every shade of grey. Thank you for doing the research!
@@MommingwithMigraine I do appreciate it! Having a passion for learning the details of everything is great if I didn't have multiple physical and mental issues!
I have gastroparesis and auto immune pancreatitis and I only tried ubrelvy and nurses. They killed my gastro intestinal tract. It was awful. And they really didn’t help as much as I thought they might.
My doctor is starting me on a path of medications to treat fibromyalgia which end up with Amovig as treatment, but now with your info, I will NOT accept it.
Im 43 male. Ive been taking about 4 nutrecs a months for some banger migraines. they help. Sometimes i try to fight the migraine without popping a pill. Nurtec is not covered by aetna but ubrevely is. so i am on ubrevely now. I only take it when i absolutely feel like killing myself rather than fight a migraine. Certain foods,heat,poor sleep are my main triggers
Thank you soooooo much for this video smart smart. I read alot too I am finding more my hear doc not happy I tried this. For 21 days. He is so smart .. 💜💜💜
about 2 years ago now my neurologist put me on 2 different kinds of cgrp antagonist for 3 month trials and my mom signed off because i was a minor at the time. Neither injection helped me and I sort of believe that they made my migraines progressively worse over a shorter period of time then i’ve experience before. I have more side effects and worsening migraines by the month and with all my medical history it only makes sense that cgrp blockers made me more severe once i got off them
Hi. Wow that was an awesome video. I do not get migraine but I do have fibromyalgia. Anyway. This is a controversial question and you by no means have to answer. I figure if you did this much research on this you probably looked into the covid shot there offering now. I have not got the shot due to the quickness they developed it. Research doesn't seem to be there for it. What is your opinion on this? Too many unknown factors for me. Thank you.
The covet shot causes very bad inflammation I would weigh your consideration of taking it I wish I didn't my daughter's been through it naturally with their family and they're fine I wish I did. I have reactivated as team-barr virus that's over the normal levels and that wasn't good to add to that. I'm not taking booster shots on any more issues with chronic pain I might have fibro but anything that causes inflammation I don't think you want it
Those symptoms sound like they could be precursors to autoimmune disease. Particularly lots of gastro symptoms, and frequent infections (immunodeficiency)
You mentioned that cgrp plays a role in wound healing do we know what role it plays in that process? Because if it's a vital role in that we really don't want to block cgrp especially for decades because we don't know if we're going to get hurt in that time.
I took my first loading dose after a week or less I had a cut and a burn on my arm that took 3 weeks till now I know why cuz I couldn't figure out why it's almost 28 days from not taking my second shot hell no I'm feeling all kinds of strange things going on it may be light or very slight but I noticed them now I don't need more complications that I already have it's always about the money and the pharmaceuticals pushing things but I've seen different more natural things that my neurologist had in her office she didn't really want to talk about it I was like damn I'm going to push it when I see her my next appointment
I have been suffering through more than fourteen migraines and cluster migraines within a month for the last twelve years and the only medications ever prescribed have been the Topomax and Imitrex until a new doctor recommended the Ubrevely. It took almost six months for the preauthoriztion to go through and be paid for by my insurance at a cost of close to $2, 000 for 16 pills only after taking the first (last) pill there was not only a lot of nausea, but a very dry mouth and horrible allergic reaction that included burning and itching with large welt hives all throughout my body, head, face, around the mouth and eyes. Never again.
How terrifying!! That is horrible I'm so sorry 😞 have you recovered? A couple things you can ask your doctor about - Wonder if something like ginger (generally well tolerated) or non-med CEFALY device would help you if you tend to be sensitive to medicines? (Don't pay full price, Code Mommingwithmigraine gets you a discount). I use ginger and cefaly both acutely and preventatively. The prescriptions were too rough on me too, but I did not endure what you did. Can't imagine choosing that or migraine 🥺💜
I've just started treatment with Aimovig. I am pretty critical of medicine in general. But i'm willing to try these CGRP inhibitors. I am obviously worried about the side effects, as i'm a healthy 33 year old male. Thanks for sharing, and dont worry you are not controversial. Taking the side effects into a account, by reading the label and even going as far as checking up on which grounds the medicine was approved. Is just due diligence. Also, i have that same chair.... :p
As someone who is allergic to "triptans". There hadn't been a new migraine medications in almost 20 years. (I'm 52 years old) It was like every time I heard there was a new medication, it turned out to be a new "cousin" of Sumatriptan. Again, allergic. As someone who was a nurse for 26 years and also is cautious about taking new medications, I did my homework and went to a new neurologist who only treats headaches. That is his specialty. My life had become spending most of my time sitting in the dark in my bedroom, wondering how many years I had to keep doing this, how old do your kids need to be before they would be okay without you? Yes, I did not want to live. Aimovig was a game changer for me. A life saver literally. I don't think about counting the days before I can end my life because it is unbearable anymore. It may not be for everyone but it was a miracle for me. I have taken monthly injections for about a year. Not to give TMI but yes, it did cause constipation and I had to add laxatives to my medications. I take them every other day to prevent constipation. I am also on memantine as my second preventative medication. It can make you a little mentally fuzzy or a little slow. I find that frustrating. These side effects are small though, considering that I did not want to live with my chronic migraines in addition to the limitations of my spinal cord injury. Constant pain. Unable to do any of the activities I loved. Sitting in the dark for days or weeks at a time. I understand what you are saying but when you reach the point that you are counting the days until your kids are old enough to live without you, you need some relief. Sometimes you need to take a leap of faith. I love your videos and keep up the great content.
I love this, thank you so much for sharing your story. Every situation is different and for a lot of people the risk is 8,000% worth it. I have friends on it too, some have definitely preached the same. It's a game changer for a lot of folks. I'm SO glad it's giving you relief!!
There are so many people that Aimovig helps. If one doesn’t though, try another. Story of our lives, right? Aimovig sis not work consistently and I am still very hit or miss with Ajovy. I’m another lifer with complex migraine and can’t do anything most people can for migraine meds. Does anyone else love the fun when words slur in your head when you are voicing things internally? Anyway the one thing that has given me relief is MMJ and even then is has to be a certain type. I’ve had to quit work and I’m finishing up cosmetology school now at 45. At least I found something I can do well enough and work only part time while I wait for my SSDI decision. I’m glad to know I’m not alone in this fight and thanks for posting!
Same. I can’t tolerate triptans, and the migraines were getting so bad that I was making active plans to kill myself. I was spending so much time trapped in my dark room that my dog would react to seeing me in the living room like I’d just come home from a months long trip. Even if Aimovig and Ubrelvy are doing serious long-term damage to my body, they’re still extending my life and improving my quality of life. It might not be worth the risk for everyone, and its good to make people truly consider those risks, but it is for me. I do get the caution. If this were a medicine for any of my non-migraine health problems, I would probably pass for the reasons Jen outlines here.
I too am allergic to triptans. Anaphylactic. I’m now on Emgality &
swelling, gaining, adema, weight 8lbs in one month, and having severe constipation and Stomach pain in general. I don’t understand. I totally understand what you’re saying. I was literally counting the days of ways I could end my life but this...idk how to deal with this shot. It’s been one month on it.
I COMPLETELY UNDERSTAND-
I'm right there in the same place.
Just injected AJOVY... Waiting, watching, hoping, PRAYING...
All else have failed me and so extremely skeptical about the helpfulness. However, at 57yrso any relief at this point is welcome.
May 28, 2021
This is an awesome video! I am also a migraine mom in my 30s with a biochemistry background. I did all the same research and saw all the same orange flags and decided to go on it to try. It has completely changed my life. My chronic migraine was stealing my life and my cluster headache events were traumatic and giving me ptsd. The long term effects of migraines and cluster headaches on my life was devastating in a way that this medication COULD (but is unlikely to) be. My body reacts very badly to most medications, especially migraine meds, and it does not to this MAB since it doesn't cross the blood brain barrier. I grew into this condition after childbirth, I may grow out of it! I will monitor as many things as I can, and go off all medication occasionally to make sure I still need it, but otherwise as of now I do NOT mind being a test subject for long term effects of this type of medication if it means I'm alive and mostly ok. Cluster headaches aren't nicknamed suicide headaches for no reason. I wish every patient could be as informed as we are and make the decision that is right for them because we are proof that the same data can mean two different things for two different people!
Thank you so much for this response! I’m literally bawling my eyes out because this product gave my 18 year olds life back. He was literally bed bound for a year, missed a year and a half of school, barely graduated high school, and only tried going back to school because he was so isolated he was severely depressed. We’ve been on this (Emgality) for like 6 months and it’s given him so much life back. I have no idea how to yank that away from him. I worry how in this already mentally trying time were in what would happen to his mental health if he had to go back to that life. I’m a RN, so I also have a scientific brain, so I’m really trying to process this information. I don’t know what to do now...
I am on Emgality as well and it works wonders. I started on Aimovig but switched to Emgality due to severe bloating. I still bloat and have constipation but to a lesser degree.
YESSSSS I LOVE THIS thank you so much for sharing your story and how much this medication has helped you. What a total miracle!!
@@cyndizebra6119 Honestly he is 18 just show him this video he can make his own choice. Botox is also a very helpful well researched alternative preventative if he hasn't tried that yet.
Guys, any updates on what you think about it now, 3 years later?
I took Nurtec for the first time last week...headache gone in an hour. Zero side effects. Worked great for me so far. I would do what is right for you, not what this woman does. If you have debilitating migraines finding relief is life changing.
You give me hope. After years of suffering and only trying Triptans which I couldn’t tolerate, I’m hoping this new prescription will be the thing that helps
I'm ready to try nurtec. 🎉anything to get relief lol.. triptains make me sleepy as heck and I can't go to work if I'm sleeping 😴 if I gave a migrane during the day
I took one dose of nurtec and it worked great. I was having such a bad migraine that had lasted a week and it was gone in 3 hours after taking nurtec. Unfortunately, it contains sucralose, an artificial sweetener that I am allergic to and I’ve been having hives ever since.
@@SimplySarah760my partner took it and has been taking it for three years. Hasnt had debilitating migraine ever since. He used to take 2 days off at work cause he cant function or work and gets dizzy and nausseus from the migraine. Now hes so happy to finally have relief.
@@princelasdoce1702 awwh that sounds amazing!! I'm glad it works ☺️ I'll have to try to get it. I'm working on it 😊 cause yeah I sometimes get that kinda migraine too 😕 migraines are awful
Ok I’m going to be real with you here and state some hard facts. Migraine sufferers are at a high risk of stroke. There are side effects from having migraine disease alone. Coupled with the fact we have to keep many things on hand because we don’t know what one will work that day. I have studied these drugs for a couple years and am thrilled to say that I am actively taking it. It has GIVEN ME QUALITY of life. I was bed ridden A LOT. I am able to show up to things without being as afraid today. The fear that in ten years they are going to come out with uh oh you might have X Y Z doesn’t even compete with living with debilitating ongoing pain that creates an impossibility of having relationships or going out and enjoying fresh air. This is coming from a veteran chronic migraine patient for the last 15 years. If I die in a couple years from it please know it was worth it. :) lol that is all
I LOVE TO HEAR IT, so glad it's working well for you! How incredible 💜
it didn't help me, but message clear and I'm so happy for you. 100% understand and would say the same thing, well put💝😊
Thank you! This video was filled with so much misinformation I laughed for 20 minutes
If u die in a couple years? Ok then...
@@montana1080 if that’s your perspective, maybe you could help others by here by being specific about exactly what you think she said in the video that is incorrect.
I've gone from having several migraines that last for days to having NO...not one...migraine in the last year and a half since I've been on Aimovig. Well, let me amend that. I've had 2, but only because there were problems with the doctor getting the prescription sent to my pharmacy and I was almost 2wks late in taking it. Once I took the injection, no more migraines. I've had a handful of minor headaches, mostly due to sore necks muscles, but usually Motrin was sufficient, if I caught it early, and Cambia, if I woke up with it. Aimovig was a total game-changer for me, and like you, I've tried quite a few. I did not have any real expectations from it when I first took it. I expected it to be about as effective as the other migraine meds I've had before. It was actually around the 2-3 month mark before I realized that I had not had a migraine in that time period. I have had no side-effects that I am aware of.
Glad it worked for you! I was in a drug trial with Aimovig and didn’t have any consistent results with it at all. I wish the drugs worked the same way for everyone,,it would be so much easier on us all. I’m getting Botox shots now. On my second round and have had some luck in this round..hoping it gets better with each session
Hi Paula, hows it going now. Still no side effects that you know of?
@@deandre1988 I'm still doing quite well... no side effects and no headaches.
I have been on aimovig for a little over a year and it has changed my life. particularly in relation to the migraines caused by flashing lights (including the frame rate of movies and christmas lights)
I totally understand your hesitation and appreciate all the research you have done. It's such a personal decision to choose what risks are worth it. For me the pain regularly hit 10/10 and I would have pressed a button to end my life many times over so the decision was pretty straight forward. With such a low quality of life I would have honestly chopped off a limb if it meant I got part of my life back.
I do fully expect there to be some long term effects (hopefully I won't actually lose any limbs) but for me the last year has been so freeing it will probably be worth it. I've gotten to look at christmas lights displays, watch old movies, and even went for a drive through a road lined with trees (the light coming through the branches usually is a trigger). My potassium levels are finally normal from not throwing up and if I maintain my current trend I might finally be stable enough to work part time again.
I would be really interested to know what research or data would you personally require to feel it is safe? A certain sample size? duration?
For me, the decision is made not to try Aimovig because of the risks of constipation. I have adhesions and other intestinal issues that can cause obstruction if I get too constipated. Because I can take triptan and because with Botox and Nadolol, I am down to 4 migraine events per month (8-12 days of migraine impact) I choose to live with my current treatments. It’s a tough call.
You explained this so well. I completely agree with you about the issues with research studies and FDA approval when long term studies haven’t been conducted. Blind trust in others is never good particularly when it involves your health.
I take Qulipta everyday and so far I haven’t had migraines and it’s been so long since I’ve gone 2 days without a migraine. I’m so happy 😭
Is it still working for you? I started taking it last month
@@farbeneath6581 I had to stop taking it 6 months ago because my hubby and I are now expecting a baby. But it did work while I was taking it. I had to start taking it every other day though, because it messed with my IBS. I was backed up for over a week at one point in the beginning 😆
@@farbeneath6581 I had to stop taking it because I am pregnant! but it was working for me while I was taking it. I had to take it every other day though because it would trigger my IBS 🤭
I was part of an 18 month clinical trial for Emgality. The first 6 months were a wash because I had 3 month of placebos and 3 months of the low dosage. Once I was taking the high dosage, the change was amazing. I didn't have the response that they were expecting, but I still considered it a win. At the time, I averaged about 25 migraine days/month and a typical day was a pain level of 7-8 for about 8 hours. Once or twice a month, I would have a severe migraine (level 10, but I was too stubborn to go to hospital) that would last about a week. By my third injection of the high dose, the duration had drastically decreased. I was still having daily migraines, but they were more come and go. Level 8-10 in pain, but only lasting 10-30 minutes at a time. I was having about 2-3 of these episodes per day. I don't remember any unusual side effects. Later on, my neurologist started me on the low dosage of Aimovig and I didn't see any benefit. I tried to tell her that I might need the higher dosage, but she didn't care. I didn't respond the way she wanted me too, so she dropped me as a patient. Yay. :/
I'm sorry this happened to you. Drs have done this to me too, pisses me off. My body responds weird to medications. Some I need more of others I need less of.
I unfortunately took Aimovig with little research (ashamed to say), largely out of desperation from living with 25+ migraine days per month. Big mistake. After my 4th injection, everything spiraled out of control in my body, and I am still (15 months later) dealing with the damage done. I will never try another cgrp medication, regardless of if it is designed to be a preventative or onset treatment. I honestly am grateful my reaction happened as soon as it did because it scares me to think where I might have ended up if I had stayed on it longer. Thank you for sharing your wisdom from having been in a research/reporting field in medicine.
Do you mind sharing what you mean by spiraled out of control? I'm on my fifth dose and starting to really struggle with depression and jaw issues.... But at the same time I actually for the first time since puberty went a month without an attack so I think it's working but I dunno if those are side effects
@@xoerinjoyox I'm so happy for you that you're finding relief! For me, it took until the fourth dose for a severe allergic reaction to develop. The signs were so minor that I didn't even notice anything until the morning after my fourth dose. Then it all broke lose. By that evening I was in the hospital on IV antihistamines, put on countless oral antihistamines in every class and on a steroid for about two months by an allergist and my PCP. The reaction continued for probably 5 months before even slowing down. Pain every day in my mouth and burning through my whole body that entire time. Because of the steroids, my body developed type 2 diabetes (stopped recognizing its own insulin) which I had never had before. I now have to manage it daily with testing, diet restrictions, and other steps to control it. I also now have regular anxiety attacks which involve histamines flooding my body for weeks at a time with those same burning sensations and mouth pain. I've had to be prescribed an anti-anxiety medication for when it gets out of control (I had never taken anything in that class of meds before in my life). It has been 15 months since the reaction happened and I still deal daily with the diabetes and anxiety attacks (again, I had never had an anxiety attack before in my life). It might sound crazy, but I honestly believe the Aimovig somehow changed my body permanently in some ways in how it responds. I can't even eat foods that are natural histamine releasors because it sends me into a full body attack. I think what's scary and what I never considered before taking Aimovig is the cumulative effect the cgrp meds have in your system and their extremely long half life so that if you do find yourself having a reaction of any kind, it is months before the drug diminishes enough in your system before the adverse effects subside. I also experienced night terrors for the first time in my life during the first weeks I was on it. I really never thought about what could happen going into it. I was so desperate for relief from the migraines! I wholeheartedly wish you relief and a better experience than I had. My main advice is just to consider the half life of the drug so that if you are experiencing difficult side effects, keep in mind how long it will take to clear the drug out of your body if you end up needing to. Please let me know if I can answer anything else from my experience.
@@chriswallace4888 thank you for the full explanation of what you meant. I'm so so sorry that you had that reaction. That is definitely devastating and life altering. I really hope for the best in your recovery.
I have been thinking about the half life and how it is essentially building up in my body. I'm pretty sure I'll be discontinuing use which is frustrating because it has provided significant migraine relief. I'm just concerned it's really messing with my mental stability. Every month I've been on it I can like I'm further losing the person I was before emotionally and mentally.
I'm glad you are looking into the meds. My neurologist suggested CGRP meds or botox. The CGRP meds have been life-changing after a few weeks.
which one are you taking?
I’m in my forties and have chronic migraines. My headaches started when I was about seven. I’ve tried many triptans among other things. Currently, I’m also getting Botox for migraine. The triptans all seem to work but can make me pretty out of it. Lately, I’ve used Peppermint Halo a lot. I bought it at Sage. I’m very sceptical about essential oil claims, and I’m incredibly sensitive to scents as that’s a huge migraine trigger for me. However, this works really well for me. There are times I definitely still need a triptan, but I’m amazed how often the mint oil can stall or stop a headache that has started. I also have MS and need rest as I get very fatigued easily. The mint oil works best if in conjunction with a dark room and rest. I was on Aimovig when it first came out. I thought it was a total miracle-it reduced my headaches dramatically, both frequency and severity. However, I quit because the constipation, of all things, was so terrible. I have another friend who did the same for the same reason. I am curious if anyone else out there correlates constipation and migraine. Both my friend and I already suffered constipation before starting Aimovig. Also, I’m in Canada. I don’t know if Saje is also in the U.S. Everyone’s story is different. Take or leave what I offer. I wish you all the best with motherhood and your health. My daughter has only ever known a "differently-abled" mother, and she’s grown into an incredible, compassionate young adult woman.
I’m on Emgality one month and have gained 8Lbs, adema, swelling all over, bloated I look pregnant, extreme comstipation and Gi stomach issues and pain that no laxative would touch other than enemas. This isn’t normal comfortable. Tinnitus dining in my head 24.7. Yes it reduced my migraine but I’m miserable in my stomach. I’ll prob have to quit. :(
@@Miss-320My doctor wants me to try emgality or qulipta. Did you ever get off of emgality? Did you try something new?
Thank you for putting this all together and taking the time to share your info and knowledge surrounding the topic! I’m not a migrainer, but I do appreciate educating myself through watching your videos. Keep creating awesome content - we are HERE for it!
You're so welcome! Thank youuuuu!!!!!
Girl. 👏🏻👏🏻👏🏻👏🏻👏🏻 As someone married to a provider, YES. To all this.
That means a lot! Yeaaaoooww!!!
I don’t blame you not having them. I had 3 injections of them and I had increased pain and migrainous headaches, I was also a zombie and having more dissociative episodes. I already take 44 tablets a day for my head. Had continuous migraine and migrainous headaches overly migrainous vertigo since 1997! I have them 24/7 never going away. I also have Arnold Chiari Malformation.
44 wow, u need to try magic mushrooms
I'm amazed how well you function with all your health issues. And am grateful that you are sharing your experience with us all! I have chronic migraine without auras, and have low blood pressure issues too. I never thought to link the two problems. I've had my migraines all my life (about to turn 69) but they only became debilitating around menopause, when I first started taking medicine specifically to treat migraines. You name it, I tried. Nothing worked as a preventative, some had side effects I couldn't live with. Never tried Botox, I lost the sight in one eye 4 years ago and didn't want to risk the other eye. My new pain neurologist started me on Emgality in September and, for me, it was like a miracle. From roughly 24 migraines a month down to 3 to 6. I respect your choice to avoid this class of drugs, at least for now. I take Rhizatriptan for outbreaks too, buying it outside my health insurance. Besides the health issues I already mentioned, I suffer from Celiac Disease. I had to figure this out myself. Gluten was the first food that I worked out that triggered my migraines, more followed. Still can't eat any of those foods. Air pressure changes also triggers them. My last plane trip was horrendous! Haven't tried flying on this new med yet. I'm wishing you all the best! Buddy is amazing! Your husband is also amazing!
Hey can you give us an update on how you’re doing with the medication? And how about flying with it, did it work now? Flying is also the worst trigger for me and I’m not sure if I should dare some more serious medication for migraine prevention. Thank you ❤
I stopped Emgality after about a year, when it stopped working for me. Doctor switched me to Ajovy which did a great job. I currently don't use any preventative and am only getting 1 to 3 migraines per month. I started meditating about 6 years ago and my psychological state altered. I began to let go of things that used to cause me stress. Because of the COVID restrictions I ran out of my Ajovy prescription and the doctor couldn't see me for 11 weeks. So I was forced to go without Ajovy for two months. The first month was hard, but the second month I had one migraine. After discussing this with my doctor I decided to test going without. My meditation practice helped me to react less to outside situations and seems to be the real solution for me.
I tried Qulipta and Ubrelvy briefly, but they seemed to have little, if any, positive effect, and made my constipation worse. ;P I’m now on Duloxetine as a preventative, and it’s working WONDERS. :D
This is why I love this video. You challenge us to think critically for ourselves, you back up your thoughts with personal insight and facts, and you use reference research, using all of these to come to your own personal decision. We all may have our own approaches, perspectives, and preferences, but you show us the types of questions we can ask so that we can come to our own conclusions, which (IMO) is exactly what’s needed.
THANK YOU for putting together such a well thought out video and for offering your well-informed opinion with grace and humility.
I'm all migrainey and concussions and funky so often right now that I have some difficulty interpreting research articles, so I thank you deeply for a great jumping off point in my journey. Thank you for existing in the migraine world. Sorry if I don't word things very well right now, I'm in the middle of a migraine that will not let go.
I found your videos via the algorithm and subbed! Super interested to get to know your life and struggles, but I love your "vlogging" style - the rambles have a point and are enjoyable.
This is also the exact same reason why I'm not racing to our local clinic to get the new pandemic vaccine - small sample sizes and short trial time! But explaining this to people seems difficult... I'm not even political about it.
Your past degrees and work...I'm hooked. You (please pardon the pun) have your head on your shoulders. An intelligent person who can critically think and reason in the world despite what the "experts" say. I have a similar background and tend to shock people (doctors included) when I challenge the current narrative. I have also seen the shady antics of the FDA and big pharma. You are not alone in your thinking. In others words...you go girl. Stay strong!
Thank you for sharing how a scientist conducts a risk benefit analysis! Highly relevant beyond just the migraine community
I hate the feeling like we the public are Guinea pigs for these drug companies! It really makes me nervous to take anything! Migraine with Aura here! My mother died from an aneurysm and I hate my migraines and fear death every time I get one. I’m so so tired of this. 😢 I’ve taken ubrelvy lately and my migraines have increased by a huge factor!
Have you stopped the ubrelvy? Did you try anything new?
THANK YOU for this video. This is the perspective I have been looking for - my ADHD and migraines make it difficult for me to swim through all the info to find the relevant parts by myself. I will not be touching these meds, I am already highly concerned about having to take potent vasoconstrictors
37 year old male pharmacist here. After dealing with chronic daily headache for 2 years, I finally took the leap and tried a CGRP. Ajovy, sample from Dr in office. Woke up the next morning for the first time in 2 years and legit shed tears because I had absolutely no pain. Now, that was 2 weeks ago. My chronic headache is tremendously better. But about 10 days ago I developed near crippling back pain, that hasn’t gone away. I’m not sure if the two are related, but very coincidental if not. Not really sure where I’m going with the treatment, but just wanted to share my story 2 weeks in.
I literally just posted a comment saying I experienced the exact same thing. The back so severe the dr has given me oxycodone, the pain in the back is so much worse than migraines!
@@KarenJarrett-xc8wx If it makes you feel any better the pain lasted for about 5 weeks. Nearly positive it came from the shot, which I did not get again.
I already had body pain often but it definitely triggered a bad flare of it for me too.
Hi there, thank you for your perspective and for sharing the information. I had no idea about the role cgrp plays in the body so it's so important people have all the facts so they can make an informed decision for themselves :) I've been taking Ajovy for 3 months and the benefits haven't outweighed the risks so I am going to give it a break for awhile. Glad I found your channel :)
I know this video was from 4 years ago, however in the scheme of things that’s not that long. I appreciate all the time and effort you took to do the research to provide this content. I’ve lived with Chronic Intractable Daily Migraine for 9 years. I was one that was very excited when the CGRP chatter started, then once some of the drugs came to market I looked into some things and just didn’t feel comfortable being a guinea pig (so to speak). The FDA can only do so much to test a drug. It’s once it’s come to market in the real world. Do they really get their outcomes. My neurologist a few years ago told me I should try Emgality. Before I could blink, my shirts, approved it, and it was sitting in my mailbox. I felt guilty, but it sat in my fridge for over a year before it was discarded. My point is, if you don’t feel comfortable with the new medication, yeah the right to not take it.
Appreciate You!!
Oh my GOSH!!! I LOVE you. YOU made the VIDEO I have been waiting for! Thank you!
YEEAAAAAAHHH This comment made my day. Happy to hear it.
@@MommingwithMigraine this video was so helpful. Especially since my husband takes Amovig and has TBi we know what to watch for. Makes me nervous tho.
I am to apprehensive about Crgps because once your on them it's for the long haul
... And like you said...we don't know the effects of that yet!
My fingers are so so crossed that everything goes smoothly and he finds relief!!
I'm in the UK (Wales to be exact - land of the Dragons!). I was prescribed Ajovy in august (although I am yet to actually receive it from pharmacy due to funding issues). However, I also have familial hypercholesterolemial. My cholesterol aged 38 is super, super high and currently unmedicated as the statin I was prescribed (Atorvastatin) gave me migraines. From watching your video, I am definitely going to do a lot more research (I'm a psychology undergrad so love my research) as 1) I am already at a ridiculously high risk of heart attack and/or stroke (I also have a family history of stroke from my grandfather) - so obviously do not want to risk anything that might make that risk higher still, and 2) I can't help wondering if my statin increased my CGRP as a protective response and therefore taking anything that could lower what is protecting me naturally may not be the best idea. I am currently on propranolol 120mg daily and sumatriptan (via tablet or injection) as an abortive. I've tried pitzotifen and amitypriline in the past also. I've been on propranolol for over 10 years now and it's lost it's efficacy and the side effects are beginning to wear very thin as trade off for a lower reduction in migraines. I was hoping that an anti-CGRP was going to be my life saver. It's advertised as the drug with hardly any side-effects - so to realise there are some likely highly undesirable ones that will only be discovered as they use the likes of myself as a guinea pig is very worrying! I'm off to do more research! Thank you for opening my eyes that I shouldn't just blindly follow the good stuff but check that all that glitters is in fact gold and not just gold-plated! Sending love!
That last sentence about gold is epic! Hope your research leads you to a conclusion you're happy with. I'm also on propranolol, but only 30 mg 😄 Have you seen my Ginger video? That could be a good option. I've had decent success with it as an abortive so I started taking it preventatively.
This was really interesting, could you maybe at some point do a video going through how you do your own research, where you find the articles and how to understand what they're saying. I find your channel so interesting even though I dont have migraines.
I think this is really important and she should defintely consider this video idea. I know I have had classes and worked with reading and breaking down scholarly articles, but it can be a process for people who were not educated in doing that. I know finding them can be difficult too as many articles I look at for college are through subscription search websites that most people won't have access too since they aren't paying for the use of the database.
I was on this medication for about a year. I started having tachycardiac and hypertensive episodes soon after, and continue to do so after a year of stopping the medication. I wish I knew this before.
Edit: It's been two years since stopping now, the symptoms excepting the high blood pressure has resolved. I have not changed anything regarding triptans, neurologist and internist agreed that was not the issue. My biggest game-changer was starting venaflaxine HCL (brand: Effexor LR), it's off-label use reduces the sensitivity of my nerves. I don't struggle with hair-trigger nerves anymore, migraines are vastly improved.
Same here I’ve been on it and feeling off and ongoing vertigo and GI issues wtf
I also had vertigo, it is gone now as I quit Ajovy.
I just for the first time in my 57 years was almost type 2 diabetic. I’ve never had that before. I’ve been on emgality for a year. My nature path doctor said I should stop emgality since I’m on bioidentical hormones for menopause and migraines decrease after menopause. I won’t take the jab for covid because I hate Big Pharma so why should I trust them to help me with my horrible migraines? I’m going to stop emgality and have the naturepath help me.
I just started emgality January 14th and it’s been horrible. The side effects are bad. Tachycardia, heart palpitations, depression, anxiety, vision changes, neurological problems. I’m in and out of the hospital. I’m young and I’m having heart problems and the website did not say you could have this side effects. I want to sue this company. This medication is going to kill someone.
It has nothing to do with CGRP and are not similar to triptans
I was super critical because of your title and the first part of your video I was thinking "...she for sure has Ajovy in her refrigerator right now" because how could someone be so critical of something that could be so helpful to their life. I'm not into any biochem or anything I'm an engineer so my research in this area is limited, though this is also not your particular area of expertise as you indicated, by the end of your video I was so much more enlightened. There were some eye openers in here and some definite things to keep my eye on, probably not enough to keep me from trying the drug as the migraines are debilitating and I already have most of the side effects already....lol. But the thought of how the body could be utilizing CGRP is very interesting and is worth keeping an eye on in the future and doing more investigation into..... Thank You!!!!
I SOOOOO appreciate this comment. I love that you came in here with an open mind, and I'm so excited that you've come to a decision you're happy with. ALLLL of my fingers and toes are crossed that this medication gives you a great portion of your life back!! It's been a game changer for many.
Thanks for taking the time to explain this. I too have wondered? Although I haven't done the extensive research I read enough to understand that everything you're saying is valid. Also I did try an injection and did notice side effects. Respiratory ailment nothing major but when I reported symptoms of running nose, scratchy throat as well mild breathing difficulties I was quickly taken out of the program by the pharmacist. It was not working great for me. Much appreciation to all that have helped in my exhausting journey. Have a great day. If today's not going great look forward to a potential new start to the days to follow 🤞
Thank you for your well-organised, articulate and balanced video🙂 My particular bane is chronic cluster headaches and "they" are also suggesting anti-CGRP treatments for that. I generally avoid medication because of a variety of principles but I was intrigued by the press about it, and when you are in agony every day, principles tend to have less of a voice. I will keep searching. Thanks and keep up the critical thinking!
Fellow cluster head here have yet to find anything that helps other than high flow oxygen....also contemplating nurtec...did you ever use it? Results?
Great video, and great info! I found out about Aimovig in a fb group post and checked it out and went and asked my doc for a prescription (it has just just been approved in Canada). I have tried all the preventative and did not tolerate them (made me sicker than the migraine) but MaxAlt (rhizatriptan) works really well. I was getting 12+ per month, and went for a consult to get botox injections in my head (scary). I did not investigate the biochemistry but tried the injection and it honestly worked so well. I went a whole month without a migraine and it had been almost a decade since that had happened to me. The reduction in migraine for me was/is wonderful. I got my life back. You really don't realize how much of your life you modify to accommodate your migraines. Recently I had a cluster of migraines for about a week (not sure why, could be the coffee I had, could be weather, could be that I was close to the time to take the next injection, could be stress, or all of the above), and holy crap did it SSUUUUCCCCKKKK! I had forgotten how terrible my life was before with so many migraines. I think it's a miracle I could hold a job and get through grad school and hold a relationship. I definitely understand your concerns, and now I have them too, but quality of life is a big factor.
Another thing that I wonder is about depleting effectiveness with long term use, like as you continue to use it you require more to get through he month. Also, Aimovig is hella expensive - in Canada its >$650 per injection.
Im a legal assistant. My first job in my field was working for lawyers who sue pharmaceutical companies for outright lies about research, clinical trials and side effects of "wonder drugs". Most of the clients were next of kin because the people who actually took the drug died from a side effect that was covered up. I left that job because it literally broke my heart to hear the stories. To be the one on the phone comforting a newly grieving wife or child as they told me their family members passed away from their injuries. It does make you think twice about what you are putting in your body
So true. Any or most $$$$$ seems like the side effects and death rate is higher and serious damaging lifetime issues
You are amazing!!! Your body is yours and your decisions are yours to make. If anyone has a problem with you doing intensive research into what you put into your body, they are just silly. Keep at it girl!
I appreciate it, thanks!
I don’t have migraines and I have no idea how I came across your channel, but I watched the whole thing because you broke it down so well and I found it very interesting.
absolutely same, cant relate personally but following anyway XD
You guys are the best 🙌
I’ve been on Quilipta Ifor a month. The first two weeks it seemed to reduce my migraines, now I’m back to daily migraines.
I’ve experienced the following side effects:
EXTREME fatigue every day. I never use to take naps. I take a nap for 2 - 3 hours a day and I’m always exhausted
Non stop nausea and heart burn. Non stop
Constipation like you wouldn’t believe
Low sex drive (low drive or motivation to do anything)
NO appetite. I found these welches smoothie pouches I can force down to get some nutrients but I never feel like eating
I went on Emgality when I was 18, and it caused me insomnia, plus I had a surgery that the scars are still very visible 4 months later. I just got off the medicine before watching this video, but some stuff you said is really making sense about what I was feeling when I was on it.
Wonder why my two cuts burn won't heal cause of this video.
I do this kind of research on medications, as well as my medical issues, and it's the only thing that's gotten me anywhere with my health. More power to you, girl. You're amazing.
Ajovy changed my life!!! Years of trying EVERYTHING. I am doing research that CRBG might be connected with bone loss. At the moment, I can go 3 months without a migraine from 1 shot. I'm continuing to do my research on the bone loss connection as I have osteoporosis in my family.
Thank you for helping everyone be more informed! I just took my first dose of Aimovig and the doctors started me on the highest dose (140). Noticing a slight improvements in daily headaches and migraines but also constipation. Scary thing is I have a large blood clot in my brain and also APS (blood clotting disorder) so I am high risk for stroke and heart attack. WHY would the doctors put a patient like me on these meds???? Maybe because I am 55 years old so I'm way past the 30 year old mark? One symptom that I have not heard anyone mention but may be a side effect is my creatinine level is high. This is so frustrating, I spend most days in bed and have not been functioning since September of 2019. I'm at a loss 😔
I'm so sorry this is happening ☹ You can definitely bring up those concerns with your doctor if you are feeling uneasy. You're still very early in your journey, and there are lots of things you can try! I hope you're able to get some of your life back 💜 *If you're having trouble emotionally, I highly recommend checking out Natalie from @mindfulmigraine on Instagram (**www.mindfulmigraine.org/)**.* She helped me soooo much with finding joy through pain and accepting the things I cannot change about living with this disease.
@@MommingwithMigraine you have been such an inspiration and help! I will definitely check Natalie's site out, I really need the emotional support! 💕
Hey Jennifer! This is an excellent video -- very informative and clearly communicated. Thank you so much for taking the time to do credible research and honestly sharing your findings.
Not to start a different conversation, but how do you feel about the COVID-19 vaccines and the entire trial process from beginning to end being less than a year?
Vaccines are different. Long term effects of vaccines are seen within the first month. If no effects within the first month, it is extremely unlikely to have any side effects beyond this - the vaccine itself does not stay in your system to cause them. The reasons why the vaccines have been made so quickly is because the funding was there in a way that it hasn't been for other vaccines. Usually, you have to apply for grants for research (which are often turned down), that hasn't happened with the C-19 vaccine for obvious reasons.
You also have to consider that you only get two shots of the Covid vaccine (maybe annually in the future) and the vaccine itself is not supposed to at a constant level all the time. In contrast, the discussed medication is supposed to be taken monthly/ every three months which means the patient constantly has it in their system.
I’m not an expert and this is just my understanding, please do your own research, but I agree, a video about her opinion on the vaccine would be great (only if she wants to do it, since it doesn’t really align with the rest of her content).
First, I'm not anti-vax. I had my flu shot in October :-D! That said, many of the same issues discussed here regarding anti-CGRP arise with a vaccine that is not yet FDA approved. This is especially true with long-term complications, issues that are maybe silent right now, but could slowly make their appearance known. The idea that issues will be seen within 6 weeks or so is sometimes false, and people like the most outspoken FDA committee member, Paul Offit, know it because they've experienced it -- and Offitt even spoke about it prior to his recent jumping onto the Covid vaccine bandwagon. Vaccines that fail or are found dangerous have varying times from vaccination to failure presentation, just as this drug might.
The Covid vaccines are approved for EMERGENCY usage (via an FDA EUA). It is not the same as the typical approval, and the short-cuts taken to this approval are a huge chunk of why the vaccines have been released so quickly. Months before Covid arose, papers in Nature and other high end journals discussed concerns about long-term safety issues of mRNA vaccines, in terms of issues like autoimmunity. These were unknowns. One weird but telling thing is that even China's lead medical official considers mRNA vaccines risky because of unknowns and has put them on low priority for release in China....but China is ramping up vaccine production for other countries!
As soon as Covid came onto the scene, suddenly those concerns in the US were shrugged aside. Issues like autoimmunity sometimes slowly develop into overt disease (it takes awhile for your body to attack its own organs enough to create overt disease), so not unlike the anti-CGRP drugs, it may be years, if not decades before we know what issues -- if any!!!! -- arise. The philosophy is that Covid the disease is worse than the vaccine "cure" and so the vaccines have been released and the FDA will decide later if they should have allowed them.
Not only do we not really know about safety of the vaccines, we also don't know about efficacy, given that they were tested under lockdown conditions. Cases are down, but testing is down and we're coming into spring when the seasonal decrease in virus takes hold. So who knows. My personal position is if a person is high risk for deadly disease (elderly but not extremely fragile elderly) or works perhaps in healthcare, then maybe it makes sense to have the vaccine. It should be a choice, not forced. I think people who can isolate should continue to do so until this vaccine is actually approved (and not just at an emergency level). And my experience: I also have a cell biology undergrad degree.
@@plzignoremyname7911 They're expecting that we'll need boosters every year for variants.
Hi Mw/M… YES you are spot on. I didn’t do any research, had horrible experiences with several CGRP meds, and sought out a very good FB group of peeps who are also having all kinds of horrific stories. I can’t imagine the damage from this class of meds flying under the radar too much longer, the side effects and adverse events list is absolutely bonkers!
I tried vyepti the first 4 days I didn't sleep. The first 2 weeks no migraines. 😊 Then they came back. It is in your system for 3 months. The last month my back and neck muscles were so tight, and also muscle burning. Was it due to this medication I don't know. I have Fibromyalgia and I think the medication had something to do with the flare up, but I'll probably never know.
I also have fibro and it caused a flare for me too
Just found this video and I'd love to know if there have been any more updates to these drugs over the last 2 years. I have been on countless medications in every category over the last 7 years and I've now tried all 3 injections. I tend to be in the 3-5% of patients who get those side effects that no one hears about. I've been looking for some information just like this because the blocking of cgrp had me thinking as well. . Aimovig had no effect on my migraines at all. Emgality was amazing but I had lots of numbness in my hands. Switches to Ajovy after 3 weeks of no emgality and now I have numbness in my hands and feet so these are a no go for me. I'm high risk for heart disease and stroke. Thanks for the information.
You time and efforts were not wasted! Now that I’m going back and binging your videos and learning more about you I’m super pissed that migraines have taken away your job! We need you! I now understand why your videos were more than just “logical and obvious” info for the migrainers. I love a scientist fighting for treatment AND facts. Then we can make informed decisions. Thank you!
I can’t help myself. They way you talk about Anti-CGRPs makes me think of the c0v1d vacc1ne. It happened so quickly, and essentially the trial is happening in real time. We’re learning more everyday about 1)the virus and 2)the vacc1ne’s efficacy, including the variants. I know you’re not a specialist, but I’d be curious to hear your “layman’s” opinion of this unprecedented vaccine and its application. (For the record, I 💯 believe in it and am getting my first dose on Friday.)
Thank you for you videos and information! 💖
This is a fantastic explanation of things I've been worried about. I've been on emgality for a few months and i noticed gastrointestinal issues and body pain. Also higher blood pressure. I'm not thrilled.
Great video! Have you looked into neuromodulation devices, like Cefaly and Nerivio? My migraines are incredibly well controlled with both Botox and Aimovig (but not one or the other), but we are trying to conceive and I won't be able to continue either during pregnancy. Now I'm hesitant to resume Aimovig after delivery.
I'm excited that there are so many options these day, but it is rather overwhelming to choose what to try, especially when they're so dang expensive.
Oye. Okay. I’m a little freaked out now. I blindly followed my doctor’s suggestion and the FDA approval. I knew there were some side effects, and I’m in a few migraine groups and chats where people reported various side effects. A major one I’ve seen is hair loss. I took Ajovy March-December 2019 with some improvement in severity and then a 3 month streak of being migraine free. Come January when the copay card expired, my insurance did not cover it. I had to try Emgality, which not only was extremely painful to inject for some reason, but it also gave me extreme anxiety. We stopped and side effects subsided. I started Aimovig at the end of March. Not seeing any results really, so I’m supposed to switch to Ajovy again tomorrow to give it another shot. My migraines have turned from episodic to chronic, and now this year to chronic intractable. 👌🏻 Thanks body. 🙄 Definitely second guessing going back to it now...I hadn’t given it much thought before.
I also had trouble with Emgality being EXTREMELY painful. I called my doctor in a panic because it was burning 2 minutes after injected. I thought this could no way be normal. I'm switching meds because the pain is not worth lack-luster effects.
So appreciate this information because at least now I am more informed and I’m glad you did this for all of us thank you so much I’m going to better examine my medication that I take for my migraines especially with interaction with other medication that I do take for my mental health
I am 60 yr old so I am happy to be using ejovy injection, with ubrevly acute. I am happy to be the trial patient and hopefully will help others someday, especially young moms. I have vertigo/migraine and have had such great success. I can take ubrevly with caffine and come out of a vertigo attack. Which in the past could last 6 days or living hell and tortured and begging to die…. So I have a life, and old age life but a very full life with lots of grandkids and family! It’s wonderful and I cherish each day, just in case medicine gives me side effects that shorten my life. I’d take that over the living hell of vertigo/migraine controlling and ruining my life. Easy to say now, feeling good, I know…. But keeping the strength and hope.
I appreciate your information but I also have a question what should you do if your migraines are so severe that they have you curled up in a ball ready to no longer be here God forbid so what is it that you recommend what do you take
So very interesting! My neuro here in Australia is about to start offering this and I really wasn't sure if I should give it a go, think I might stick to the botox treatments for my migraines for now.
I’m in Uk and have been having Botox injections for migraines for about a decade and today have been offered emgality after watching this I’m going to stick with the Botox…
@@goldiegirl7247 haha I started emgality 2 months ago and it's the best thong I've done. Migraines nearly completely gone
You're the best, thank you for the video. Can you speak to Triptans and vasoconstrictor type action? I suffer from nerve/migraine related issues and it seems only Triptans that do vasoconstriction appear to work. Because of this, I am hesitant to take CGRP type meds.
When you're taking a tripton it's an abort medication not to reduce the intensity or the amount of days of your migraines but it's a great abort medication if you take it on time and with some other medications but I'm not going to try cgrps ever again I've been up for 21 days and having small issues that realize like my cuts not healing and I mean not healing for 3 weeks my stomach I don't know what else a light headness but really not dizzy it's like a strange funny feeling that told my son I hope I'm not falling down but it was so strange it went away in 2 hours.
Inflammation it was more on some surgeries I had that flared it up I don't know what else I could think of something it's just not right
I wish I would have found this video years earlier. I had taken Quilipta for about 2 years and did feel like I got my life back. Recently, waiting for a PA lead to running out. 3 days later, I have had the most intense migraines daily, but I am determined after watching this to try to stop. Oddly enough, Iused to have low BP which has raised, I have had 2 years of herniated discs in my back (1 actually broke off), and was contemplating another hip replacement (I'm a little young for this) because of the level of pain. Today, not much hip pain... ??? I had been wondering for the entire time of being on the drug, if I was harming myself Cardiovascularly and healing wise by blocking this peptide. Last thing, I had tried Emgality prior to this and had terrible allergi reactions... even these weird painful sores developed on my fingers.
Thank you for this video. I was considering taking these new treatments because my migraines have gotten out of control and I just want some relief. I think I might look at other options because I had no idea about these potential side effects. Knowledge is power. I'm 42 years old and I do need to think about the long term usage of these new meds. It may feel great in the moment but it's not worth it.
CGRP antagonists made the constipation and gastroparesis that I already have from hypermobile type Ehlers Danlos syndrome worse.
The POTS medications Guanfacine or Clonidine taken before bed is what best prevents my migraines, and they also treat my insomnia, restless leg syndrome, and anxiety-like symptoms.
This video was really helpful to understand some of the precautions that should be noted with taking his medication‘s, I’ve tried all the preventative medications aside from the CGRP inhibitor‘s and so my neurologist suggested I try this. I’m planning on trying it out once I get insurance but only for the fact that my migraines perpetuate some of my other chronic illnesses and I want to try and get those under control, and to take medication‘s for so many things so if I can give my body a bit of a break from painkillers that would be a win for me. I am the sort of person that is sceptical of medication and aware of how my body responds to things so I guess we’ll see how my body responds to this 🤷🏼♀️
so interesting to hear your background and thank you for this indepth research. Unfortunately the celebrity ads make it appealing to sufferers who don't do any or can't do any research and trust doctors who push drugs by the drug companies for vacations, etc. I understand now why drugs are recalled so soon.
Thank you for such detailed explanation.
I’m really grateful.
Can you please give your opinion about entyvio, for crohn’s diseases. I’m so important for me.
Thanks again
I have had a headache for 8 months now, it feels like an inverted sun burn in my head, I’m going to try this, I’m desperate af
Thank you for this video! I don’t have migraines but I’m on many other meds that I should really look into more that I’m on. I need to make sure it’s something that is worth the help. I wish they had to explain all of the things you said when being prescribed. I’m sure you spent a while putting all the information together! Thank you for this information!
I have to say this, I've been binging your video's today, and also found out today about you biochemist background. The background (even though it's a bit sad to "need" one) does make your video's a lot more trustworthy and wonderful to me. And I already loved your channel before. I hope you continue to get subscribers and likes so you can continue to support yourself, even though you had to quit your main/ previous/ chemist job.
great video. thank you for breaking this down.
Glad you enjoyed it!
Thank you. I’ve been on the fence with FDA and quick approval of everything of late. Very hesitant in taking any drug even though my body has formed an attachment to Fioricet without codeine. So over worrying about the PUSH to take these meds. I reluctantly agreed to have Ubrelvy in my household because I’m relying on Fioricet. I’ve been given no advise on how to take this nor how to reduce the other. It’s so crazy. I’ve been on Fioricet for over 10 years. Recent events with another very real disease SSCD has caused increase in migraines. It’s do crazy. I’m going into Functional Meditation Functional Healing now. 😳😳😳. Praying this is the means to help heal these migraines. I’m 60.
Let me know how function therapy is going
I am in Australia and I tried Emgality but I didn't get any benefit... I was paying $263 a month for it for 6 months. This was during a period I was taken off my propranolol, but still getting botox and taking topamax. I was so disappointed. My mum tried Ajovy and had bad side effects, nausea and stomach issues, which she never has with her migraines/chronic headaches. Though my aunt on Aimovig benefited. In Australia Emgality is on the public medication system as of 1 June, but you can't get public botox and it at the same time.
I went back on propranolol and up on topamax and I finally having relief for the first time in years (1 migraine a week!!!), but also I just got diagnosed with POTs (and seronegative rheumatoid arthritis just before that), so I am unsure what is impacting what. Before that, I thought all my symptoms were migraine symptoms...
Have you tried relpax?
I have migraines as well.....They're horrible. But I choose to not take anything unless I've had one for many days at a time. At that point I am open to taking something. But all of the possibilities is very unnerving. Thank you for such an informative video! I very much enjoyed it!
Thank you for sharing ❤️
Pharmacology and the physiology of the body is so fascinating 🤓
Thanks for this video. I was slightly skeptical of anti-CRGP drugs from the efficacy being only modestly better than existing drugs. However I'd suggest that some of your criticisms of the clinical trial in the video, apply to most clinical trials (e.g. such as selection criteria). As such I think those criticisms need context, the usual thing is to expect real world effects of a treatment to be less than seen in clinical trials (because the diagnosis is usually clearer in trials, the people prescribing them more expert in trials etc etc - indeed my GP was all for joining clinical trials precisely because you get treated by the best doctors in that field, and they may well help you, even if they reject you from their trial, such as by correcting your diagnosis).
The other thing missing is comparison. If we aren't taking injectable anti-CGRP drugs, how are we managing our migraines? I was prescribed Topiramate, and within a few months the side effects were nearly as bad as the migraines it hadn't stopped (sigh), steadily eroding my ability to speak coherently. Alas the current protocols drive patients to try all the "serendipitous" migraine drugs first often including Topiramate. The only thing I have found that has much effect is Candesartan and Triptans. My guess is FDA approval is granted in part because Triptans do a similar thing but with well known side effects (and counter indications) which don't all seem to apply to this new class of anti-CGRP drug. Candesartan similarly is not side effect free. So when discussing risks we need to say "compared to what" (and as several commentators have said, continuing to live with migraine may not be a tolerable option).
The above sounds quite harsh, but I don't mean to be, your commentary was really insightful. And there are lots of people paid to sell these drugs, so refreshing to find someone looking at it critically who clearly isn't being influenced by the drug companies.
I to suffer from daily migraines and vertigo.
The only medication i found to work for these migraine attacks is triptans.
However, triptans are temporary. They arent used as a preventative daily medication. More so “migraine attacks”.
I tried triptans and they work. I tried the lower doses - 40mg - 50mg. My dr doesnt seem to want to put me in the 80mg doses.
Because when my migraine is really really bad. This lasts for 4days plus. Usually the 40mg tablet is not strong enough. But it is strong enough for the daily “usual” migraines. Not so for the severe migraine attacks.
If cgrp dont work. Im guess only option is ibuprofen and triptans daily which is hazardous. On a daily basis. It slowly destroys your liver. Also makes you immune to pain relief medication.
Botox i have not tried. Maybe i should? If cgrp is bad. Causes side effects. There really is no option left.
……… topamax, candesarten etc all have side effects too.
Not to mention sertraline an ssri drug. After 3-4 days, that made me paralyzed. It did something with my eyes. Slight look to left, or any eye movement made me spin or give me severe vertigo. I was immobilized. Bed ridden. Luckily i took a nap it went away. Still have side effects from it, sensitivity to light, blurry vision at times, eye sensitivity etc…
It did something to my eyes and brain. Like someone was spinning me in circles real fast and doesnt stop for hours.
Cgrp might have side effects, but every cgrp is different to everyone. There is another to try ajovy. Less side effects.
@@airforceone6523 I hope you can find some relief. I was switched from sumatriptan to frovatriptan because it "lasts longer", and it does. I take a tiny sounding dose (2mg iirc) and the headache pain is gone for nearly 48 hours. This means I can treat a 7 day migraine with 3 doses. I'm still left with other symptoms but at least it hurts less.
@@51monw never heard of frovatriptan. Maybe i should ask for it. See if that works for me.
Migraines impacts your life. I wish it would go away after day. But chronic migraines……noone will know that feeling unless they have gone through it.
Hope yourself gets relief from chronic migraines. Best of luck.
@@airforceone6523 doesn't hurt to ask about frovatriptan, mine is distributed by Glenmark. Hmm reading a bit maybe I should be taking more. 2.5mg tablets, but apparently you can take up to 3 a day, up to the usual 10 triptan days a month.
Thankyou so much for this information. I've been taking emgality for months and it has been a miracle drug, I've been able to live life again....however....this very much could be coincidence but about the time I started taking it, I began having lower back aches. As time went on the pain became worse and worse. It became very severe. By the end if each month when it would have wearing off my back pain subsided. As soon as I took the next injection, the severe pain came on the very next day. This happened twice and the pain is so severe that I've been too scared to try it again. I'd love to know if anyone else has had any similar experience.
I know this video is old, but the algorithms threw it my way and I, currently, am taking (when necessary) an abortive CGRP inhibitor (ubrogepant/ubrelvy). I have or have experienced several of your conditions:
Migraine w/ multiple aura (just became chronic the past 3 yrs)
Hypermobility (my whole life)
Raynauds (past 3 yrs)
Chronic fatigue (past 5 yrs, but have always been a "sleepy" person)
I did look up the drug and it would appear there were no severe side effects? However, I did not dig to find "the fine print." The drug does work (aborts migraine) and saves me from potential days of pain and loss of productivity as my migraines can last up to 76 hrs. I am interested in your updated thoughts on these abortive meds. Know you're busy and this is an old video but I also wanted to say thank you for putting this out and yourself and your illnesses out there. Much love to you and yours and everyone else out there who deals with this crap on a regular basis. ❤❤❤
I appreciate your comments and research time!
I recently was prescribed Aimovig but can’t afford it and am applying for assistance. in the meantime, considering the side effects of Aimovig . I have classic migraines and ice stabbing pain with them. Also trying to reduce rebound headaches from years of overusing BC powder for daily headaches. You have provided much to ponder. it’s a. little scary for sure. AND I want to end my pain.
Makes me very curious what you use to treat your pain? Maybe I missed that video. 🙃
Thank you for sharing this information. I've had good results with Ubrelvy and Avovy but have also opted to stop and see what other data emerges over the next few years. I share your concerns.
Thanks for doing this video. I’ve been having post concussion syndrome and post traumatic headaches and migraines every day for the last year. The dr wants to start me on sumatriptan and aimovig. The Insurance company just denied the aimovig and wants me to take emgality instead. I was thinking I must be a crazy person for not being comfortable injecting these drugs into my body. I’ve been reading reviews and information for the last week. Everything you said is right on track with the things I’d been thinking. Is the risk of what could happen from these drugs worth it? It seemed like there wasn’t a huge difference between placebo and medication in the studies. Anyway- thank you so much for doing the research you did. I’ll still continue doing my own research, but I think I am like you- I’m not a test subject. And I honestly don’t want to trade the headaches for other side effects, or worse- take the medication and get side effects while the medication doesn’t even help the headaches. Then really what would the point be?? I’m also not going to take the sumatriptan. A couple of days of relieving a headache out of 30 days of headache isn’t worth the risk for me.
Very informative - thanking you for putting this video out there !
Ajovy was very harmful for me. It caused severe difficulties in concentration and restlessness, to a degree I had major problems with my work and social life. I know this for sure because I paused it for 3-4 months and my mind stabilized during this time. I used it again because it is very efficient with my pain. But my problems returned. Now I have quit it some 3 months ago and I am now back to being myself again. So, not for me, alas.
You were awesome!
I love how you explain the importance for you or drugs having been followed for longer than"recent appoovall" and 3 % of ppl having serious reactions is very concerning.
I think a drug think this should have had a large and long trial b4 approval too.
I tried nutrec 3x. I used topomax was a controller. Nurtec makes me SUPER nauseas! Never had that happen as a drug store effect! Maybe it's CGRP effects digestion 🤪
Thank you! I don't have a concrete opinion on whether it "should have been" approved because it's already helping so many people. I just hope it isn't also hurting some people when we/they don't even know it. Such a catch 22.
Hi I was wondering if you could clarify/elaborate on your Topamax comment/use? I didn’t understand your comment & I’m on Topamax & doing ok. Thanks!
@@prairiedog8482 I have taken topomax as a controller for 2 yrs. It works for me. That's all.
I don't have a good abortive option but nurtec seems ok actually. As long as I take zofran to.
@@misscole82 thanks I appreciate you responding I’ve had migraines all my life but I’m new to trying meds for them 😊
I am on Aimovig for about 6 months now. My headache days went from 15+ to 3-4/Month. So far I haven't had any side effects as far as I know.
I know is an older vid but I just want to telll you thank you for the amazing, incredible and real life info and personal things and excellent strength and effort that I see behind the pain is admirable to ME PERSONALLY 💜
I’ve several personal disabilities that only my immediate family get to see and even with them I try to hide a lot. But even In that is impossible.
I figure you likely get what I’m saying......I wish you didn’t tho.....I wish NONE OF US understood any of this side of the circle of life.....(makes no sense.....circles don’t have sides???) anywho.......
I have a feeling you and I could have a pretty interesting chat lol.....or 100. But for now, I just want you to know I’m here, I hear you, I care and I’m wishing, praying and trying to manifest a safe solution for YOU, EVERYONE WHOM IS SUFFERING STILL AND EVEN MYSELF.......❣️
I went on Aimovig 140mg pretty fast after starting my migraine treatment journey. My mom and I are both nurses so we were both concerned but I wanted to give it a good try. I had checked with people in migraine facebook groups and figured on it being a low chance of helping but I was desperate. Started in October and stopped in January. I got super depressed (more than my usual which technically could've been from the migraines changing my life so fast) and it also caused a lot of weight gain. Like 30lbs in that short amount of time and I'm still trying to get that back off. The other thing we worried about was the immune effects since "mabs" are used in disease processes like MS. Which even my doctor denied as a possibility and I pretty much decided she was in the camp of "if it's not a listed side effect then it can't be a side effect". I did try Ajovy as well for about 3 months without the depression and weight gain but that's where I called it. It also worried me that my doctor wasn't concerned about my not being on any birth control and there are no reasonable studies on the effect on pregnancy and a fetus. I took Ubrelvy (the new abortive) about 2 times and it didn't help and made me dizzy enough it's now listed as an allergy. For me, since I saw nothing but bad effects without improvement and with my desire to have a family soon, I called them quits. I'm still desperate, maybe even more so now, but I don't want to continue to compromise my health in other ways. I didn't know at the time that these were potentially increasing my stroke risk. I really appreciate your analysis of the information surrounding these drugs especially with your background! You have some very educated guesses on potential long term side effects. In the meantime I've heard about others with depression, hair loss, weight gain, anxiety, increased severity of their migraines, etc as side effects that have been experienced on any of these drugs.
Hopefully that was okay to understand cause... hello migraine brain...
Wow, I can't believe you had such a strong reaction to it so quickly... and your doctor sounds just like mine. Not really concerned, not looking at the whole picture. Sometimes it feels like they're numb to this stuff! Hope you're able to find relief in other ways. Thanks for sharing your story 💜
Fyi, mab stands for monoclonal antibody. Monoclonal means that it is made by 1 unique cell so it's not a mix of antibodies. An antibody is a molecule that binds to another molecule, and this molecule is made by the human body instead of designed by a researcher. Yes, people with MS probably form antibodies against their own tissue. That's the same in other autoimmune diseases: autoimmune means that your immune system turns against yourself. Their immune cells make antibodies against the material their nerves are made of.
But this antibody is monoclonal, so it's 1 type, and this type has been shown to bind CGRP, not the rest of your body. It's really really unlikely that you're going to get MS by it. Antibodies are really good at being specific: binding only one molecule and no other one. (That's why you can be immune against one kind of flu and get another one. Your antibodies are specific enough that they can recognize this flu, but the other one doesn't exactly fit their binding place.)
I'm so sorry to hear about your experience! Unfortunately this is similar to my experience with Emgality! It worked wonders but about six months in I started getting rashes on my arms and legs, inflammatory eye issues, and severe diarrhea. My markers are high for inflammatory bowel disease. I also gained about 40 pounds that I have been unable to lose since coming off. My neurologist thinks I'm crazy because no one else has reported these side effects. She basically dismissed my concerns and wouldn't report them to the FDA!
Any updated thoughts on these new drugs? My doctor wants me to try Emgality.
how much vitamin D have you tried supplementing with and how much of an effect did it have for you?
I'm sorry, I haven't done standalone vit D in a controlled enough way to be able to comment on it.
@@MommingwithMigraine oh. i don't suffer from migraines, but i have been experimenting with vitamin D doses for other reasons, and i noticed that suddenly dropping from a larger dose to a smaller dose has left me with a headache all day, which led me to wonder whether vitamin D protects against headaches. looking online, seems there has been some promising investigation of the use of vitamin D for treatment of migraines. perhaps related to CGRP, which is what led me to your video out of curiosity.
This is a great video. Thank you. My thoughts exactly.
Thank you for posting! I think the video could be relevant to more than just the migraine community.
I am a migraine warrior. I tend to not be able to focus long enough to do justice to research. I know if I look hard enough I'll find things saying a single thing is black, white, and every shade of grey. Thank you for doing the research!
I didn't have the focus either... this was over literal daaayyyyssss. Thanks for appreciating it!
@@MommingwithMigraine I do appreciate it! Having a passion for learning the details of everything is great if I didn't have multiple physical and mental issues!
@@MrsTikiGod AMEN TO THAT
I have gastroparesis and auto immune pancreatitis and I only tried ubrelvy and nurses. They killed my gastro intestinal tract. It was awful. And they really didn’t help as much as I thought they might.
My doctor is starting me on a path of medications to treat fibromyalgia which end up with Amovig as treatment, but now with your info, I will NOT accept it.
Im 43 male. Ive been taking about 4 nutrecs a months for some banger migraines. they help. Sometimes i try to fight the migraine without popping a pill. Nurtec is not covered by aetna but ubrevely is. so i am on ubrevely now. I only take it when i absolutely feel like killing myself rather than fight a migraine. Certain foods,heat,poor sleep are my main triggers
Thank you soooooo much for this video smart smart. I read alot too I am finding more my hear doc not happy I tried this. For 21 days. He is so smart ..
💜💜💜
why did they stop allowing midrin from being made
about 2 years ago now my neurologist put me on 2 different kinds of cgrp antagonist for 3 month trials and my mom signed off because i was a minor at the time. Neither injection helped me and I sort of believe that they made my migraines progressively worse over a shorter period of time then i’ve experience before. I have more side effects and worsening migraines by the month and with all my medical history it only makes sense that cgrp blockers made me more severe once i got off them
Hi. Wow that was an awesome video. I do not get migraine but I do have fibromyalgia. Anyway. This is a controversial question and you by no means have to answer. I figure if you did this much research on this you probably looked into the covid shot there offering now. I have not got the shot due to the quickness they developed it. Research doesn't seem to be there for it. What is your opinion on this? Too many unknown factors for me. Thank you.
The covet shot causes very bad inflammation I would weigh your consideration of taking it I wish I didn't my daughter's been through it naturally with their family and they're fine I wish I did. I have reactivated as team-barr virus that's over the normal levels and that wasn't good to add to that. I'm not taking booster shots on any more issues with chronic pain I might have fibro but anything that causes inflammation I don't think you want it
Those symptoms sound like they could be precursors to autoimmune disease. Particularly lots of gastro symptoms, and frequent infections (immunodeficiency)
You mentioned that cgrp plays a role in wound healing do we know what role it plays in that process? Because if it's a vital role in that we really don't want to block cgrp especially for decades because we don't know if we're going to get hurt in that time.
I took my first loading dose after a week or less I had a cut and a burn on my arm that took 3 weeks till now I know why cuz I couldn't figure out why it's almost 28 days from not taking my second shot hell no I'm feeling all kinds of strange things going on it may be light or very slight but I noticed them now I don't need more complications that I already have it's always about the money and the pharmaceuticals pushing things but I've seen different more natural things that my neurologist had in her office she didn't really want to talk about it I was like damn I'm going to push it when I see her my next appointment
I have been suffering through more than fourteen migraines and cluster migraines within a month for the last twelve years and the only medications ever prescribed have been the Topomax and Imitrex until a new doctor recommended the Ubrevely. It took almost six months for the preauthoriztion to go through and be paid for by my insurance at a cost of close to $2, 000 for 16 pills only after taking the first (last) pill there was not only a lot of nausea, but a very dry mouth and horrible allergic reaction that included burning and itching with large welt hives all throughout my body, head, face, around the mouth and eyes. Never again.
How terrifying!! That is horrible I'm so sorry 😞 have you recovered? A couple things you can ask your doctor about - Wonder if something like ginger (generally well tolerated) or non-med CEFALY device would help you if you tend to be sensitive to medicines? (Don't pay full price, Code Mommingwithmigraine gets you a discount). I use ginger and cefaly both acutely and preventatively. The prescriptions were too rough on me too, but I did not endure what you did. Can't imagine choosing that or migraine 🥺💜
I've just started treatment with Aimovig. I am pretty critical of medicine in general. But i'm willing to try these CGRP inhibitors. I am obviously worried about the side effects, as i'm a healthy 33 year old male.
Thanks for sharing, and dont worry you are not controversial. Taking the side effects into a account, by reading the label and even going as far as checking up on which grounds the medicine was approved. Is just due diligence.
Also, i have that same chair.... :p
There were also many instances of patients reporting mood disturbance, anxiety depression & insomnia.
oh really?? dang =/
HI THERE,
CAN YOU DO A VIDEO ON AJOVY, WHAT ARE THE RISKS OF STROKE WITH PEOPLE WITH A FAMILY HISTORY OF STROKE.
THANKS