I constantly get “let’s give it another 6 weeks or months and see how you’re doing” between guesses at diagnoses. I’m just like “it’s been over a decade, but okay” 🙄
I got tired of that as well. Finally, I started finding medications that could treat multiple symptoms or health issues I have, I put together a good case for each medication, and my doctor tried them since one medication treating multiple health issues was definitely worth a try. That finally got me much better treatment for my health issues. It's ridiculous that I essentially had to study pharmacology so much to get it done.
I love what you said about pots. Literally some days my heart rate will hit 180 and I won't even blackout, it's always when my heart rate just jumps to 120 or smth where all of a sudden I'm on the ground.
I can relate to that. Some people with POTS experience the heart rate spike and can generally be okay at that point, but then their bodies overreact to that by abruptly crashing their heart rate too low. This is when the blackouts and/or fainting happens. Then their bodies overreact by causing their heart rate to spike again, and can then overreact by crashing the heart rate again. This back and forth cycle puts a lot of stress on the body and can cause a lot of fatigue.
I have ME/CFS and I experiences Torsade de Pointe after two trials of amitryptaline in which my heart rate would jump to 120 at rest. It was nightmarish! Fortunately it only lasted two years each time. Dealing with chronic health issues is never fun. I have had ME/CFS for 28 years and I have been lucky that I have had good fortune with medications and many of the worst symptoms are controlled. But it’s still a struggle.
@@keirfarnum6811 Amitriptyline increases norepinephrine, which is what fuels the "fight or flight" response and increases heart rate. The extra norepinephrine overstimulates the sympathetic nervous system and often makes POTS much worse. Amitriptyline also increases serotonin, which also often aggravates dysautonomia issues. In contrast, POTS medications like Atenolol, Propranolol, Guanfacine, and Clonidine reduce or dampen the effects of norepinephrine. Have they tried you on Mestinon (Pyridostigmine) to treat your ME/CFS? It's currently in clinical trials to treat ME/CFS and exercise intolerance, and is currently an off-label treatment for it. It's also an emerging repurposed treatment option for POTS and digestive motility issues. It doesn't increase heart rate, since it stimulates the vagus nerve and parasympathetic nervous system, which in turn calms the sympathetic nervous system.
I tell the doctor I have dysautonomia and had a positive tilt table test and they’re like you’re young this can’t possibly be your heart rate and I’m like I have dysautonomia it’s all over the place. Or your young you can’t have pain. I’m 29 and have known about my Ehlers Danlos since I was 23. Or it gets brushed off as anxiety when I’m in so much pain I vomit.
Great point around 9:20 about how people feel it’s taboo to bring up or discuss someone else’s illness, but the truth is nothing feels better than someone just understanding what you’re going through! Love this video!
I remember this was something I was taught as a kid in the 90s, “if you see a person in a wheel chair, pretend like you don’t see the wheel chair, because we’re all just the same!” I’m sure it was well-intentioned, but not actually helpful, because we aren’t all the same.
The medical establishment's insistence on performing my pain & illnesses for them to "prove" it to them really ticks me off. Most of the time it's the clueless ER docs who can be more useless than skin tags. It's enraging.
Emergency rooms are good at treating heart attacks, strokes, gunshots, and car accidents. Anything not extremely common and not causing you to bleed out all over the place, they'll triage you, and send you home.
When I was diagnosed with my neurological condition,the doctor literally told me to Google it+decide if I want brain surgery 😂 I was a minor with no internet access,money or support so I just agreed to brain surgery
I like the advice to look it up when a friend tells you they have something. This is second nature to me, I think because my dad was diagnosed with MS when I was a child, and the hospital so kindly gave me a book made for kids to help explain it. It's hard for me to imagine not wanting to know more about what a friend or family member is going through--it shows you care! Best wishes as you start grad school, Izzy! Don't push yourself too hard with TH-cam!
On the comment about not noticing when you're not in pain even though pain is your baseline, I have the same experience typically, and I think it is just because I dissociate from the pain to be able to numb out/tap out of my body's pain and push through life because I have to in order to manage to survive it and adapt to life as best as possible.
Each other..Do you think shes crazy? I've had it with medical professionals. I have fibromyalgia, RA, chronic fatigue had liver cancer got a transplant but no one treats fibromyalgia in the area I live in even though I travel back & forth to SLC, UT for transplant team & cancer checks.
Thank you! For this pain statement...and medical doctors w/degrees have ask me things like; What do you want, a magic wand? My reply was Sure if that will help I will take it!, After over dosed on pain meds and still seeing things in my face nurses and aides were commenting
I have had ER staff question me having EDS. Thankfully I have pictures on my phone of my genetic testing results from when I sent them to my parents that live across the country. Still it’s really insulting and frustrating when they interrogate me like that.
The ER is one of the worst places to go for people who have EDS. The ER staff would have obsolete and inaccurate knowledge of EDS, due to the classification system being revamped in 2017 and the 13 different types of EDS being so confusing to medical personnel who only have rudimentary knowledge of the group of EDS types and related collagen disorders such as Marfan and Loeys-Dietz.
@@Dulcimerist yeah I try to go to my doctor first but sometimes she sends me to the ER. I have a tendency to get pericardial effusions and some not great allergic reactions so sometimes I don’t have a choice.
I keep every test result: blood work, MRIs, CTs, everything in a file. It's also helpful because you will notice when your levels may be changing for better or worse before the doctors do. They are mainly just looking if it is out of range. But some doctors understand like "the low end of normal" because some of those ranges on tests are very large. But good on you, lots of mistakes happen in the ER, you need to be on top of backing up what you have!
I think the point about people feeling it’s taboo to bring up illness/disability explains why some of my friends seem uncomfortable when I talk about my illness.
Yep thats exactly it. Disabilities are still treated as smth to be quiet and ashamed about. Its bs but until people start listening to disabled peoples its prolly not gonna change.
I personally struggle with the anxiety of "How do I explain this without being TMI?" or "How do I explain to my teacher why I need to use the restroom a lot without other students hearing?" I have a chronic digestive illness. It also puts a lot of pressure on my bladder. It's so godamn embarrassing to have to ask to use the restroom constantly. I wish there was a way for me to exist without other people knowing what's happening with my body
@@nebbula7897 that’s rough. I’m sorry that you’re dealing with that. While obviously, I don’t understand completely, because everyone’s circumstances are different, and everyone reacts on different ways, I can definitely relate to the feeling of not wanting to share too much about my health issues, because I don’t know if people will be like, “Gross, why would you say that. I don’t need to know that,” or if they’ll understand that this is just my life, this is what I deal with, and this is what I need to do to deal with it
@@sarahorme9415 Yeah, and I'm sure I can't completely understand what you're going through either, but we're all on that chronic pain train. I wish more people would understand that some of us can't help being "gross." Our conditions are not punchlines
OMG. I was laughing so hard at "you're not vibing, you're vibrating" that is so me. "oh two ribs just fully dislocated but I'm fine. Just give me a sec" or "oh the entire side of my rib cage is immobile. No worries I'm fine"
Not only the wave of nausea and heat and like cold sweats… but also the instant “all of the saliva disappears from my mouth and I cannot swallow this bite that is in my mouth” that hits me, too! It is SO weird and horrible.
This is me just before a sesion with my physical therapis this week. "Uhm, I don't feel really well today. Wow, my balance sucks with this heat. I should tell the PT. 2 minutes later: PT: " How are you? Me: I'm fine I have to learn that "I'm fine" is the correct answer when you cross paths with your neighbour, it's not the correct answer to give to the professionals that are treating you.
Hm, reminds me of when I subconsciously tried to hide the fact I was lightheaded and reeling when getting off the cardiologist's exam table. The nurse was perceptive though I saw him write a little note down haha. It's the office that finally figured out what was wrong with me.
This video, really relatable. My sister when she used to see me shivering in 30°c weather in the early summer evenings or limping & needing my husband to carry me to her bathroom she always heard from her lil sis "yeah, I'm sorry, it's just my body, I'm sorry, I'm fine." 🤦🏽♀️🤷🏽♀️🤦🏽♀️Smh! I still apologize for my pain when I'm struggling to explain my mobility issues with the amount of pain I've always felt, to dr's.🤦🏽♀️ it changes levels and frequency but the location has been there mildly since birth. So it's hard to recognise because it really is apart of us. Pain has grown with us, thanks to the dr's dismissing it as "growing pains" 😩
This video is so great for a lot of reasons, but an unexpected one is the way you demonstrated pacing and spoon awareness. The way you recognized the drop in energy and didn’t push yourself to keep going and going. But most of all, you were open and honest about your fatigue… That kind of thing is impactful to watch ❤ especially when the rest of the (able) world tells you to push through
I love coming across videos like this. I was diagnosed with young onset parkinsons at the age of 32. 90% of people I tell that I have young onset don't believe me. They think i'm faking it. Three different people at jobs i've had (they were ALL nurses!!) did not believe me. One nurse made me show her my medication i am taking to "prove to her" that I have it. Another said I was faking it because when I reached for something, My hand was not shaking at the time...Yeah, because I had medication in my system. It is frustrating as HELL having to deal with this disease at such a young age and also having to deal with people accusing you of faking it..Because it is only an "old persons disease". Glad to know these people know more than my movement disorder specialist!
You nailed it on the nose when it comes to having to “ hide our pain “ or not talking about our Chronic conditions because we are given no choice but to, especially when you’re at work because you are asked “ are you sure you’re going to be able to do your job?” Constantly and it gets annoying! I have POTS, too even though I have cEDS and I have CCI , too. But I have felt like I was going to blackout before at work and it slammed me into the circuit box and another time into my housekeepers cart.
I always struggle between downplaying my pain and symptoms to not be making it all about me, and trying to up-play them so I'm taken seriously if that makes sense...
It feels great to have finally found a supportive few people who have heard my complicated story of the health challenges I face daily. Instead of testing me to make sure I have the symptoms of the list of conditions that I am diagnosed with they simply said "I believe you". Those 3 words are life changing comfort to me. I hope we all find people who can say them to us, who are willing to be part of our team. Blessings from South Eastern Australia, Dot
Haha I had things I wanted to say but I can’t remember them because brain fog! These were all really relatable tho, even if I don’t have pots. Oh! I remembered! I basically always now go into a doctors appointment having done my own research and knowing what a diagnosis/treatment should be. And usually the doctor is like “yeah whatever you researched sounds fine, we’ll do that.” Or in the past I’ve asked for a new plan bc nothing I’m doing is working and I’ve had doctors tell me “no keep doing that thing that isn’t working, because I don’t believe you that it isn’t working.” So most of the time I know more about my conditions than the doctors, and I’m sure others find this relatable.
Omg the random doctors that make you “prove” your pots dx!! I get the “poor mans tilt table” constantly and also for EDS “well can you touch your thumb to your arm?!” And I’m like “yeah but I’m not going to show you and hurt myself lol”
I’ve had doctors do that too and the one time my feet were literally blood pooling as I was sitting there and the doctor was like I can see your feet blood pooling from here and I almost cried because she actually believed me when other doctors don’t even when it’s literally in my file.
I cant seem to do the thumb one with one of my hands anymore. Which I was warned by the physio can happen as we get older. So my last Dr said I didn't have EDS...OK buddy you tell that too all my previous Dr's, physiotherapists and rheumatologist 😒
@@dizzydozdb If you can have a "good day" when you can do it, have someone help you take photos of you doing the thumb thing and other EDS things. That way you have permanent documentation.
Tiktok #2 was something I understand so much! I have chronic headaches/migraines but a few months ago my arm and joints started hurting, so I kept a pain diary for a while. Turns out I was having severe all-body pain and just not noticing it because my headaches were worse 😳. Now I'm going through the diagnosis process for fibromyalgia or something similar.
yes! me and my partner absolutely talked about not noticing your pain has gone away, kind of in relation to how i have low level consistent pain but i dont realise its there sometimes but its draining me anyway
Everything you said in this video reflects me 110%. It’s like we experience the same in regards to our behavior and attitude towards eds and pain. It’s nice boy to feel so alone in being young and chronically ill 💗
I went to the hospital last week because my heart rate went from 120, to 50 then up to 180 in 30 seconds. I’m on my way to being diagnosed with POTS (possibly also have hEDS but not confirmed yet). It was so scary but I’m glad it was finally caught! Good luck in school! I’m happy to watch your videos whenever you have time/energy to post.
I'm so glad to hear you're on your way to a diagnosis. I hope that they can give you something to help the symptoms. I know for me, my diagnosis played a big role in me feeling better since it led me to new medications that really help
I did the same with my gastroparesis dx. My Dr didn’t tell me anything except “here take Reglan up to 3 times per day”. I didn’t realize for years it caused me so many issues and that my food choices could make me feel worse.
Reglan can have a lot of side effects. Lactation is the weirdest, but that type of drug causes muscle issues, sleep issues, and depression for me. Hopefully it's working well for you, with little or no side effects. I take Mestinon three times per day for my gastroparesis, and that medication has no side effects for me - and it also treats my POTS and fatigue. It's an older medication, but is an emerging repurposed treatment option for digestive motility issues and POTS. Mayo Clinic and Vanderbilt Autonomic Dysfunction Center are a couple of research facilities that pioneered Mestinon for these new uses, due to its beneficial effect on the vagus nerve and parasympathetic nervous system.
@@Dulcimerist very interesting! I’ll talk to my dr as I’m going to be tested for POTS or dysautonomia myself. The excessive sweating is worse then the almost passing out for me.
@@Pixel8d72 Excessive sweating sometimes accompanies the hyperadrenergic type of POTS, where the body overreacts and releases too much norepinephrine and adrenaline into circulation. Medications like Clonidine or Guanfacine can treat POTS and excessive sweating by signalling the body not to dump so much norepinephrine and adrenaline into circulation. Mestinon might be able to reduce sweating in a roundabout way, but it's not known for profoundly reducing sweating. The good news is that there are quite a few treatment options available for POTS. Other good POTS medications include Ivabradine, Atenolol, or Propranolol.
@@Dulcimerist my niece has POTS and takes propranolol. My heart monitor got delayed because my sons have covid. But once I have an answer I’ll discuss these meds with my drs. Thank you so much for this information. I greatly appreciate it.
@@Dulcimerist Do you happen to know what are the actual drug names of the medications you mention in your comments please, specifically: *Reglan*, *Mestinon* (from this comment i'm replying to) and *Clonidine*, *Guanfacine* (from your 2nd comment, further down in this thread)? These are not names of any medicines that I am familiar with. So now I am not sure 1. Whether they are a particular brand name of those medicines, and I might know the actual drug name/generic name/etc, just hadn't heard those brands, or 2. If they are just non-UK names and I know them by a different name, or 3. If they are not available in the UK, hence why I wouldn't know them, or 4. If they are simply medications that I just haven't come across before! Any help appreciated thanks, having a rough time at present, so anything that I can look into etc is good, it can just be confusing sometimes with medicine names. Thanks 👍🏽🙂
I think the downplaying and focusing on other small stuff is a coping mechanism for us because I feel like non chronic pain sufferers will never understand what it is to hurt ALL the time, all the time, so you have to vibe…like what else?
I've learned not to down play as much because my parents will think I'm fine if I don't outwardly express I'm not which means I don't get the help I need unless I speak up.
I want to deeply thank you for your videos. It has been confirmed I don't have EDS but instead have CFS/ME and very high possibility I have POTS (just waiting for insurance to let me get tested). Your videos have helped me so much throughout the past 2 years. I didn't even know what POTS really was until I saw your videos. Our symptoms may be different but there's also so much overlap that I never felt alone. Even when doctors kept dismissing me I knew by these videos and the lovely comment section that I was not alone and that there was hope.
I'm so happy that my videos have been helpful for you and it's awesome to hear that you're on your way to figuring out what's going on healthwise! Connecting with others and seeing other people going through a similar journey has also been extremely helpful for me. Sending hugs!!
I can really relate to the 'getting sent away with no information' one especially. I've been rushed to hospital 3 times in the last few months for collapsing, seizures and each time I was unconscious for over an hour and bedridden for a few days after. I also have chronic pain and struggled to walk after because of hip and knee dislocations. But each time it happened, I got sent home a few hours later, once my vitals were stable and told to drink, get some rest and come back if it happens again (which it did but I got told the same thing again). My latest one was extra scary as it happened in public and my mum was called and saw me in a bad state. Apparently I had a few seizures and was mostly unconscious for hours, it was by far the worst one. I've been terrified to leave the house ever since as I don't want it to happen again but I don't want anyone to worry so I just pretend that everything is fine. I just got told by my GP that the tests that I got a year and a half ago, confirmed that I definitely have POTS but I was never told and there wasn't any follow up so I'm now waiting for my next appointment. I also apparently qualified for hEDS but was told that there is nothing they can do so 'don't overdo it' was the best advice on that one. Sorry, that was really long but that's my story. I know so many of us go unnoticed and ignored for years but after almost 11 years of chronic pain, faints and so many other problems, I'm finally getting answers.😊
Oh gosh that sounds really scary, and I'm sorry to hear that you're feeling scared to leave the house and also to let friends know what's happening. I hope a doctor can figure out what's causing this. Sometimes it really just takes one good and knowledgeable doctor, but to find that doctor can really be a journey...
@@OneOfUs- Sorry you're experiencing symptoms that severe! Have they run an upright MRI to follow up on your hEDS diagnosis? This would check for Chiari malformation and cervical spinal issues such as thoracic outlet syndrome. Issues like these can factor into POTS and seizure activity, and are often secondary effects of Ehlers Danlos syndrome. Are you on any medications or over-the-counter health supplements? Some of those can aggravate POTS and seizure activity - especially if you happen to have hyperadrenergic POTS.
@@Dulcimerist I haven't had any more follow ups on my EDS and I just got an appointment booked today with cardiology to discuss my POTS and the options going forward. I'm not on any medication at the moment as they don't want to start me on the usual medication because my resting heart rate can drop to 30bpm or below but jump to 200bpm and they don't know why this is happening to these extremes.
Doctor: “I think you might have EDS Type III, and very likely POTS…. ok, so that’s all we have time for, I’ll see you in 3 months” Me frantically googling what the hell EDS and POTS is and freaking out! Found your channel and you have helped me so much!! ❤️❤️
Did they recently tell you "Type III"? That whole classification system became obsolete in 2017. If your doctor is still using the outdated system, they're definitely way behind the times on managing EDS symptoms and treating EDS patients. Did they at least try you on any of the main POTS medications for EDS patients? They usually try a beta blocker (Atenolol or Propranolol) first. If they doesn't work, they then try Ivabradine, Guanfacine, Clonidine, or Mestinon. If gastroparesis or chronic constipation is present, they often start with Mestinon since Mestinon can treat both POTS and digestive motility issues.
@@Dulcimerist He is an orthopeadic surgeon (hip), and alternated between Type III and hEDS. I passed hEDS criteria (other than ruling out other forms, which seem unlikely!) and his suggestion of POTS was based on history of fatigue and weird HR stuff. I spoke with him again last week, and he actually seems rather knowledgeable on protocals pre-op/post-op, POTS, dysautonomia and he refused to operate within 12 months of my last surgery. I went away and did a heap of research (although still so much to learn!). hEDS - meet full criteria, although no known family history and haven’t ruled out other forms POTS - did laying to standing test at home with a HR increase from 52-141, felt like I was gonna pass out! So he could be right on that one too but I haven’t seen a cardiologist yet.
@@kathrynbrooks7091 Some healthcare facilities have neurologists in charge of managing POTS/dysautonomia patients, so double check to see if you need a cardiologist or neurologist to manage it. You'll likely start with Atenolol or Propranolol. If it crashes your blood pressure too much or you react badly to one of those, they'd likely try you on Ivabradine. Another option is Guanfacine or Clonidine. If you happen to also have digestive motility issues, Mestinon can treat both that and POTS. There are quite a few treatment options out there, and hopefully your doctor will be able to figure out which works best for you.
@@Dulcimerist thanks for the info! His team of nurses are well informed but I definitely will be asking if the hospital has protocols/specialist. If it wasn’t for the surgeon, I would have gone on thinking that my POTS/dysautonomia symptoms were completely normal! I’ve learned to live with them. As for digestive stuff, as I’m only new to the diagnosis and working out what’s normal and not I haven’t explored answers to some weird symptoms I have. Things like unexplained nausea after eating in the morning, or simply not eating for days because I just don’t get hungry. It’s something I am yet to discuss to with my GP.
@@kathrynbrooks7091 Yeah, your GP can refer you to a gastroenterologist, and you'll likely get a gastric emptying study where you eat eggs with radioactive dye and they take some periodic X-rays for a couple of hours to see how it moves through. I used to experience the nausea after eating in the morning (sometimes even puking), and periods of days without getting hungry. After starting Mestinon to treat my digestive motility issues, I'm still getting used to actually feeling hungry like a "normal" person. Feeling hungry feels so weird after finally getting my digestive issues properly treated! lol
"Even if they do know you just pretend it isn't happening" THIS I'm so ashamed of how badly I'm hurting and how I react, I feel like a HUGE burden and like nobody wants to deal with me so I suck it up and pretend I'm fine. And so now everybody pretty much thinks I'm fine. So I'm afraid to talk about it at all. It's such a mess. Thank you for talking about this.
When I got my HSD diagnosis my doctor said there was no treatment and that was it. I left feeling rather let down and abandoned. It wasn’t like I suddenly felt better than before being diagnosed.
Physical therapy to strengthen/stabilize hypermobile joints can be a big help. It sounds like you should look for a better doctor. 😑 Idk why so many doctors have to be so arrogant that they forget they don't know everything.
Check national and international nonprofits about your condition to see if they have a list of doctors who do actually know about and how to treat it. Also check for local support groups. They might also have a list of doctors and group members to get feedback from about those doctors.
Treatment of HSD is symptom management. That doctor is lazy, and doesn't want to bother providing treatment. Definitely look for another doctor who can help you to manage your symptoms. An internal medicine primary care physician might be your best bet to coordinate your care with any specialists he or she deems necessary for your medical care.
Yea my doctor said the same thing. He diagnosed me and then said that the PT and pain med I was taking was all that I could do to help and it would just be an "annoying thing" that I'd have to deal with 🙄 I understand there's no cure, but I'd like something else to try!
I have amnesia once I get to the doctor even when I write notes down. And if they ask about symptoms I don't have written down I'm like "No... I don't have GI issues" forgetting I woke up the night before with choking reflux and nausea.
100% makes sense about the pain you were describing. I’ve been in a neck pain flare all week (which is great - not really - because it’s finals week) and it makes all the other days seem like it’s no pain when it’s still a 3-4, or what I would imagine a 3-4 would be. I hate rating pain. And my leg burning pain hasn’t been as noticeable since my neck is taking the cake in pain this week. But anyway. Yes, I 100% get it and I love when you talk about it because it’s so relatable.
Omg it's so frustrating when doctors don't have a plan! Like I was left with untreated type 2 diabetes for a year and it was horrible because the doctor wanted to "wait and see what happens" while I was clearly suffering from diabetes symptoms. Now I'm finally getting treatment and doing well though.
i also fully agree with the not noticing when it doesn’t hurt. like i’ll start not limping or complaining as much and my parents are like “she’s healed!” like uh nope
Congrats on starting grad school! I’m doing my PhD at the moment, so it’ll be great to “ know” someone else going through what I’m going through. And one of the best feelings for me was when one of my friends made a funny joke about my illness. It made me feel like she understood what I was going through and that she wasn’t going to shy away from the topic just because some people find it awkward. So ironically, her making a joke actually made me feel safe (but she’s one of my closest friends, it’s not like a random making an ableist joke about you, very different!). Thanks for the fun video, Izzy!
One really frustrating experience i had with my GI doctor recently was him saying I had "functional dyspepsia" without actually explaining it and then immediately prescribing me cyproheptadine and closing up the appointment without really allowing us a chance to say anything. When I looked it up later, i realized he had basically told me i had gastroparesis, but didn't schedule me for a gastric emptying test or even mention the possibility of gastroparesis. I figure it's probably because i don't vomit(which is more because I hate puking than because I don't 'need' to), even though only a small portion of people with GP actually experience cyclic vomiting. Just really frustrating, and my mom and i are talking about possibly switching doctors if the next appointment doesn't resolve anything.
@@Dulcimerist i haven't been officially diagnosed(my genetics appointment is in september), but i do have g-hsd, so he should be open to the possibility, especially since I also have POTS.
@@harleywithacane8674 Yeah, your doctor should be keeping that in mind that your digestive issues could very well be secondary to HSD/EDS. POTS possibly secondary to that as well. The good news is that Mestinon (Pyridostigmine) is an emerging repurposed treatment for POTS/dysautonomia as well as gastroparesis/IBS-C. It's an older medication, but its effects with the vagus nerve and parasympathetic nervous system prompted research facilities like Mayo Clinic and Vanderbilt to run studies and prescribe it to patients for treating these issues. It's worked really well for treating my POTS and digestive motility issues.
I got diagnosed with EDS seven years ago and I’m still asking for a plan. I am now 44 years old and it’s disseminated into multiple other additional diagnoses and they still have no idea what to do and I am at the end of my rope.
This is so scary and frustrating. I wish there was a better EDS treatment plan, or even just that doctors were more knowledgeable about EDS. I hate that sometimes you need to go to so many doctors until one finally suggests something else that might help.
Try to find an internal medicine doctor as a primary physician to help coordinate your care. Ensure that EDS if listed as the unifying diagnosis, and that all of your other relevant health issues are listed as "secondary to EDS". I ran into this, and finally decided to learn pharmacology and find medications that could be prescribed for multiple symptoms and health conditions I have. I was able to make a good case to try them, and my doctors decided it would be worth trying any medication that had the potential to treat multiple issues with a single medication.
I have such an issue with my husband not giving a shit about my mental and physical health issues. And if I post about it, he gets mad and says I'm annoying or being negative by talking about it. I'm hurting so much that I can't tell anyone about what I'm going through. Not even him.
That's awful. Your husband should be your support system, if he isn't, you guys may need to get some counseling. Maybe he just can't face the reality of your pain because it hurts him (best case). Or maybe he just doesn't want to deal with having to help with things (worst case is he is a jerk).
Ugh the amount of times I've had doctors literally say "I don't know what to tell you" or " I don't know how to help/advise you from here". Like ok, I have my diagnoses now, which is AWESOME... but even WITHOUT the diagnoses, are they seriously telling me they can't advise me how to proceed to look after my lymphoedema, my nausea, my chronic pain etc. I"m not expecting a miracle, but their LITERAL job is to help me help myself to maintain the best quality of life still left to me. Knowing what's wrong doesn't help at all if they tell me how delicate my poor body is - how close I am to having horrific problems like ulcers etc. then give me absolutely no help to look after myself!! 😥 Also, that "massive wave of nausea". Ugh so very relatable!
I am so glad I found your channel. At 56 finally have diagnosis of EDS was told look up info on EDS UK as I read I was like GI and Pots symptoms are what I have been banging on about for years. I have to decide if I have a day I eat or day I drink as full feeling and nausea so bad however on a previous vlog showing you following a shower and how short of breath you were you included a picture of your feet and described need to sit or preferably lay down. My husband is OMG that is exactly what happens to you. I would not wish this on anyone but glad to actually see I am not on my own, it is not in my head. I also have Oestogenis Imperfecta, Adrenal Insufficiency, Fybromyalgia, Oesteoarthritis Hypothyroidism, Hamecrania Continua, Migraines Brittle Asthma and Malabsorbtion issues but now understanding more about EDS I can see how so much is linked. I am at best when laying down but as soon as standing it is horrendous and pass-out and now wheelchair dependent when out.. Not that anywhere to go with Covid on loose. TQ for presenting complex condition in easy to understand way.
Sorry you have those issues. I have them, too. Have they tried you on Mestinon (Pyridostigmine) to treat both your digestive dysmotility and your POTS? It's an older medication with a 75 year track record for safety, and is a new repurposed treatment option for POTS and digestive dysmotility. It stimulates the vagus nerve and parasympathetic nervous system, which is in charge of digestion and autonomic functions.
I've been using a cane for a month now for my leg pain, and I'm finally going to the doctor in 3 days! But I'm scared that they're going to just say that it's growing pains and shove me off to never figuring out what it is. (Edit, ummm... my Lyme disease cause something close to chronic fatigue syndrome. Also, I have crutches now!)
Just found this channel. After a long process of being passed from doctor to doctor, physiotherapist to physiotherapist and back to a doctor, I have finally got a diagnosis of JHS which I have suspected since I was a child. Currently waiting for an MRI on my skin and pelvis to see what is going on there and going to also be checked for scoliosis as they believe I may have a small case but would like to confirm through the scan. Doctors haven't been much help, but thankfully I have an aunt who has been supportive and gives great advice because she unfortunately has MS
“I don’t really have anything else for you. Why don’t you come back in six months.” And that was from the best doctor I’d found. Who correctly diagnosed me, thankfully. But… uh… what? Now, 9 months later, I finally got in to see a specialist who has me seeing 3 more specialists. When I could have done this a year ago. Oh, but no. Instead I had to put myself through TH-cam medical school & figure everything out on my own. Because that first doc didn’t / couldn’t / wouldn’t make a plan for me. What?
Glad that you seem to be on the right track now, though! In order to receive proper medical care, those of us with less common medical conditions need to learn all we can about our health issues and then advocate for ourselves to ensure we receive proper medical care. If a doctor says they can't do the job, patients have the power to "fire" the nonperforming doctor and "hire" a new doctor who will provide the services the patient needs.
Im not sure why it is relieving but, watching another young sick and attractive female like myself ( lol ) talk about the realities of my current life, it made me feel much better. I'm glad your video was the first I watched today. Great change for the start up of my day. Thanks for taking the time to reach out even though I totally understand how exhausting even talking can be, much less putting the brain power into coordinating the video and structure of your content. I get tired just feeding my animals and taking meds so cheers to all of us lmao. Hugs, have an amazing day!
I had a doctor recommend me for an unnecessary vein ablation in my legs when I told her I had POTS ... she didn't even know what it was an looked it up in front of me, got a quick google summary and then tried to explain this illness that i'd researched extensively because I related and then matched a lot of the symptoms. I don't faint, but vertigo is ALWAYS extreme from sitting to standing, just sitting down in a chair I can feel my heart pounding to keep my blood from leaving my head, and I have to keep my legs up all the time, lay down 24/7, or wear compression socks if I have to walk around at all. I eat salt out of my palm all day now because it's the only way I can get my BP up. Nothing else helps. My heart rate jumped to 120bpm the other day in the doctor's office while I was getting my pulse and BP taken, just from me talking. The nurse looked me like "... um...?" My current cardio was SO PISSED when he found out I'd been referred for vein ablation by another cardio when I don't have spider veins or any history of enlarged veins. My issue is that my heart isn't strong enough to keep my BP up, so the vein ablation was literally pointless and did NOTHING for my symptoms. current cardio did my BP while I was standing and while laying down after I described my symptoms, and that was that, shows over, diagnosed with POTS and then given recommendations for get my BP up and proper compression socks. Currently he's considering adding a medication to artificially raise my BP because the compression socks just aren't doing enough day-to-day and cardio exercise isn't an option because of other things.
i’ve been struggling with heart rate and chronic pain issues for a while now but i haven’t been able to make it to a doctor and that’s taking a toll but there isn’t much i can do about it
one of the reasons my pots wasn't diagnosed for years despite the tilt test showing that hi, yes, I do have pots (both my blood pressure and heart rate are affected when I have syncopes. I literally went into asystole, but everything was fine according to that cardiologist), is because my base heart rate is incredibly slow. no one thinks that 80 or 90 bpms is tachycardia. except, it kind of is when my regular heart rate is at 40 bmp. thankfully one of my current doctors is a specialist in dysautonomia and she knows better than those doctors I had years ago who wouldn't listen to me or believe me and just said it was probably anxiety.
I have found physical therapy, acupuncture and sleep, when it is attainable to be helpful. But there is nothing to remove my pain. As I am nearing 6 decades it is getting worse. When something doesn't hurt I don't necessarily notice either because something else hurts to make up for it. My brain always goes to the worst pain at the moment. However, when my hip stopped hurting for almost 24 hours since 1996 I did notice that and I felt bliss.
Every med review I have, I have to explain POTS to the doctor or nurse because they see ivabradine and thing 'young healthy looking woman on angina meds?!'. And last time, the doctor asked me some questions like she was checking the criteria with me and I was thinking 'I was diagnosed in 2016, nothing's changed so stop questioning me!'
Chronic illness with pain and a sensory processing disorder make for fun doctors appointments (ironic mode on). I never get enough time to translate my internal feeling towards being touch averse and the doctor palpating and moving me or my joints around. Jumping from one to the other in hypersonic speed for me and when my responses come delayed the doc accuses me of making things up. I get the "we wait a while and see, if things go away" "we deal with it, when it does not go away"and when I come again and again with my complaint, they pretend it is the first time, I tell them about this particular problem. It is so tiring.
I can relate to that. My appointments go better when I write or type everything on paper so that a detailed description is available for the doctor. Doing that also ensures that i don't forget to mention anything. Bringing a friend or family member with you to appointments is also a huge help. That person helps to remember and describe details, advocates for me, and makes the appointments go much better and be much more productive. It sounds like you really need to bring someone with you to appointments.
@@Dulcimerist in present times, they do not allow someone in my appointments, this is problematic. Hope, times will get less restrictive again. Patient services are not sufficient at the moment. I deal with a handfull of rare diseases, and each one of them interfrres with the others. Finding a balance is really Hard. As soon as costs are covered, I will be able to get an Assistant again.
@@NickUncommon Yeah, the restrictions have had a negative impact on people who need an advocate with them at appointments, due to disabilities. With restrictions easing, the Americans with Disabilities Act might give you a lot of traction against the remaining restrictions, in order to bring an advocate/assistant with you to appointments as a reasonable accommodation. Just tell them that you have an Autistic Spectrum Disorder which can affect communication and other cognitive abilities; and if they want you to understand, remember, and follow doctors' instructions, they need to allow you to bring an assistant to all of your appointments. Since you never know if you'll be having a good or bad day with all of your medical conditions, describe how you are on your worst days and assume you'll have a worst day at all of your appointments. That way, the person you're talking with will be able to see the real need for an assistant, and will be less likely to just dismiss your request and needs.
@@Dulcimerist in Germany, the American disability rights regulations do not apply, unfortunately. And our Teilhabegesetz just changed. It looks good on paper, but is too New to be taken for granted ihn every day situations. As soon as my request for an Assistant has gone through, things will be better. For now, I need to fend for myself. This corona virus has come at a time, after my move, where things still were not settled into New routines, and I am not sure who I will get to support me in Independent living. So it is a work in progress.
I was diagnosed with IST, neurocardiogenic syncope and oesophageal dystonia on the same day, given no information about it and was prescribed meds. I was like oh okay sure. Looked into them and I’m like OH. Thankfully now I have a plan for these few things and can deal with them most of the time
I had to stop my Plaquenil for my arthritis because an antibiotic I'm on reacts with it. I then noticed how well it actually was working on my pain, because of how it came back about a week after quitting it. It didn't feel like it was doing anything until I quit taking it, I guess the improvement was so gradual. But most of the time, I do not notice my discomfort until it is gone for a bit, because I have to work and do things anyway, I really force myself through it. Today at the doctor, the nurse asked me where I am having pain, and I just said a stomach ache of about a 2. I totally forgot the headache that had been stabbing my temple every morning for two weeks. And this might sound morbid, well it is. I have had some things very wrong with my health for about the last 15-20 years. Tests rule out more things than they actually find. This summer I was diagnosed with a terminal lung disease, it actually shows up on CT scans, and my lung biopsy was positive, so like no denying that this illness is real! A part of me was actually happy that maybe now I will actually be validated, because I have an illness that shows up on tests. But it's terminal, so of course that is devastating. People act like it's great when a test come back "normal", but for me, it just means they didn't do the right test, because I know something is wrong. Doctors gaslighting, not investigating further, saying my illnesses are in my head or just stress and anxiety has been the norm for so long. It is sad that it takes a terminal disease to finally be taken seriously, and still even not so much, because the pandemic is more on doctor's minds than anything else. Hint to doctors and politicians: Other illnesses besides Covid are still happening 👀
Hi Jessica! Please respond :) I am really curious to what lung problem they diagnosed you with because I feel something is wrong with me too. I need to get it checked and every time they’d done an x ray it comes back normal but I know that a CT scan will show much more.
I went to a specialist and got diagnosed essentially as having "some sort of hypermobility" and to do my own research. Upon doing my own research I meet all the criteria for hEDS and she was the exact person who would've been able to diagnose me, but she didn't. To clarify, the pediatrician was significantly more helpful because she worked with me and got me diagnosed with something else I had (lyme disease) and got me set up to figure out the other problems (the theory that me, her, and my mom all had was that there were multiple different problems at once) So were working towards a rheumatoid arthritis diagnosis as well as an official hEDS diagnosis. We're getting through the diagnoses little by little, but its absurd how long this process takes and its absurd how unhelpful the actual specialists that you were told to go to are
Hi, I have severe r.a and one kidney, and hashimoto's, I was four years old and diagnosed with rheumatic fever, and spent a year in the hospital. The doctors I see 5 of them, are the best. Learn stuff,be positive, and always make sure your own and your doctor's research is correct. Do not get discouraged, keep trying, get many opinions from drs. ,research drugs,and symptoms. My r.a. is so much, that I had no choice but to have neuro spinal surgery. I refuse to take pain medication. Reinvent yourself, be sarcastic and funny. So much more healing than being depressed about your health...
3:18 omg so me!!! Today I was literally like this, I didn't sleep because of my neighbors and I was overloaded (autistic thing, it sucks!!) and my heart rate was at 140 and I couldn't even hold my breakfast and I was like "I'm fine, mom, thanks" but I definitely was not!! But since today is father's day here I really wanted to be awake for him as he's not feeling well this past weeks, and I did it, I stayed awake for about 4 hours feeling like shit and hiding it from him. He knew something was off with me, but didn't notice how bad it was (as almost everyday something is bothering me), and it's an ability we shouldn't need to have, but we do! (Ps: I have no diagnosis other than asd, so I can't even say "oh, today it's this" or "yeah, it's just a flare up" because we don't know the cause of anything)
Sorry you're experiencing that. Having Autistic Spectrum Disorder is probably especially frustrating, as that can interfere with interacting with doctors. Although I don't know whether or not you have POTS, the POTS medications Guanfacine or Clonidine might be of interest to you. They're both FDA-approved to treat ADHD, a condition which sometimes accompanies ASD. These two medications signal the body to not release so much norepinephrine and adrenaline into circulation, which in turn calms the "fight or flight" panic and anxiety response and prevents the heart rate from skyrocketing. Due to the specific manner in which these two medications work, they're also often prescribed off-label to treat anxiety and PTSD. My daughter and I both take Guanfacine at night, and it successfully treats our insomnia and restless leg syndrome in addition to eliminating our anxiety issues.
Izzy, Can you do a video on treatments we should be looking into or signs that we need to seek treatment instead of tough it out? I have a hard time getting myself to believe I need to see a doctor. Or also it would help when a doctor is too dissmissive? Thank you so much for all of your videos!
I tend to tear up and cry a little when I’m in less pain. So in the ER and I need some help because I’ve been dealing with level 8-9 pain for like a week now with no breaks and they jab me with some morphine and a muscle relaxer. I only start to cry a few minutes later. I cry because I feel some relief and I’m just so thankful I tear up 🤷🏻♀️. It freaks the doctor and nurses out. They think it would be the opposite I’d be crying in pain but really I cry when I’m “without.”
I keep zofram on me at all times for any kind of nausea. I get nauseated if I eat too much or too fast. I get nauseated if my back sublaxed, I get nauseated if I get bloated.
I actually found out my diagnosis of MECFS and fibromyalgia from a written referral to a physiotherapist. My doctor never said a word about it, let alone discuss any strategy to keep going 🤦🏻♀️
I have PsA, gastroparesis, and now I have been diagnosed with Hypermobile Joint Syndrome. My pain doc says that there is now way I could have Heds, because my skin is not loose although I have all the other criteria for Heds.
That pain doctor has obsolete and inaccurate knowledge about the 13 different types of EDS. Doctors who get hung up on the skin thing are getting confused with classical type Ehlers Danlos syndrome. A patient with hypermobile type Ehlers Danlos syndrome doesn't need to have any skin involvement at all. Print off the new 2017 hEDS diagnostic criteria and have the doctor go through it with you if they don't believe the hEDS diagnosis. Or simply tell that doctor that you do have it, and that the doctor is going beyond their scope of practice by dismissing your hEDS diagnosis since they are not a geneticist.
@@Dulcimerist thank you. I have been to some many docs. For the first couple of years they tried to tell me it was all in my head, I fought to get into different docs and unfortunately in Alaska there is just not alot to choose from.
@@amandarumfelt I experienced that as well, and had bad reactions to psych types of drugs. I live in Montana, which is almost as bad as Alaska for not much to choose from. Hoping you can get some better care. Learn all you can about your health issues and the various treatment options, and advocate for yourself. It often helps to bring a family member or friend with you to doctor appointments for support and as an advocate.
@@Dulcimerist what part of Montana I was born in Lewistown, my sister was born in Bozeman, and my brother was born in Kalispell. I have family all over the state. I do learn all I can. I had a really bad reaction to trazadone and Zyprexa. My pcp will no longer put me or allow me to take certain ssri's. Is there a place where I cN message you instead of on TH-cam?
@@amandarumfelt SSRI drugs messed me up really bad, too. I'm around the Billings area, but my sister lives in Bozeman. I listed my email address in a comment here, and hope that you grabbed it before I deleted it to avoid having spammers find it.
8:54 let me think of one... ankylosing spondylitus pops into my head... picturing it in my head as a hunched over person waddling like a penguin everything stiff and locked up.
Last week, i was in the hospital for my endometriosis, and when i mentioned to the dr that i had POTS she said, "they diagnose everyone with that these days"
i see this kind of response commonly about adhd and autism too because the amount of people getting diagnosed has risen over years. but it is so weird to me because these things are increasing because people are being educated and idk how that could bother any doctor?? they’re literally upset about their field improving and advancing. makes no sense
Those are fightin’ words. I would have just stood up fast and fainted right there and then. Then when I come to I’d look her in the eye and call her a bitch very mater of factly.
That's so irresponsible of that doctor just dismissing your diagnosis! Using that logic, I guess that doctor doesn't need to wear a mask or receive a vaccine because "they diagnose everyone with that virus these days".
no but the downplaying is too real 😭 my arms have been paralyzing recently and i'm always like "it's fine though don't even worry" while im trying to literally just move my arms HDHDJFH
literally i had surgery 2 months ago, was meant to be day surgery and i was first in at 8am, was in recovery until 8pm and was only discharged as they couldnt find a urology bed for me but that GA was the worst ive ever had and ive had 31! I went home that day with zero information thats including how to get my SPC supplies! my first appt afterwards was meant to be on the 21st august but it got cancelled and its now not until next tuesday?!? Ive had 3 seets of antibiotics already for bladder infections which i kinda knew would happen but thank god my mums a nurse and has been able to get catheter supplies for me where she works but its been a shit show, ive only left home 5 times since surgery and that was the first week of august….
I had a positive tilt table test and the nurse was like it was positive you passed out so drink a lot of Gatorade and carry around cheese because cheese has a lot of salt. They were going to send in a cardiologist but said it was going to take too long so they just basically said it was positive and sent me on my way with no real helpful info just pumped me with saline and sent me home still feeling sick and dizzy.
That's ridiculous! A cardiologist conducted and was present for my tilt table test. He had me try the extra salt and sports drinks at first, but then set up a return appointment where we began to try various medications. Atenolol, Propranolol, Ivabradine, Guanfacine, Clonidine, or Mestinon are very popular for treating POTS. It might take time to find which one works best for you.
@@Dulcimerist I threw up bile and went unconscious and the lady that did it when I came back to was literally laughing and was like hahaha I knew it was going to be positive and I was like yeah I figured and she was like how do you know and I was like I feel like complete crap. Then they rushed me out. I felt immensely sick during and after but I almost want to re do that horrible experience because where I got it done didn’t help me or explain anything to me they just said it was definitely positive, told me to eat more salt and sent me on my way.
Don't stress if you can't post every week that you'd like to! Living with chronic illness by itself is exhausting, but factoring in all the stress of a world that for the most part doesn't get us because unfortunately a lot of folks see the world through the capitalist lense we're taught in school (in the US, from my experience, anyway, not sure about elsewhere). So if we don't 'contribute' to society the way we're expected to, we're lazy or whatever. But thank you for sharing info about your experiences and I'm going to be looking into POTS more because...reasons. I hope you have a good day!
Chronic pain is such a weird thing once you get used to it. I have to go to the chiropractor weekly. If I miss one week I feel like I’ve been hit by a train. At the start of 2020 My insurance made me go to a new chiropractor and I had to wait a week in between my last appointment with my old chiro and my new one. They knew each other and all of my info was transferred over. Most of my scans would be in the red or the black (very bad) but I’m apparently really good at not showing that I’m in pain? I get to my first appointment with my new chiro and exchange the typical “how are you?” “Feeling pretty good today” and he starts adjusting me and stops and says holy shit when was your last adjustment? I say two weeks ago. And he said “well if this is your back on a good day I can’t imagine WHAT it would look like on a bad one!” Every time I go in after a week off he tells me to stop doing backflips (his way of saying take it easy) but jokes on him I’m always taking it easy. And it’s always nice seeing him because he actually takes time to ask questions about my POTs and see how I’m feeling that day POTs wise. And every time I get up from the table he reminds me to get up slowly. A very stark contrast from an ex friend who used to talk down to me and tell me I complain too much or talk to much about medical stuff in general. Long story short she was extremely ableist and wanted to end our friendship because I “wouldn’t be able to keep up with her because of my disability” big yikes 😬
This is so embarrassing I was at the grocery store a few months ago and had a pots episode and fainted and a stranger called 911 and I had to explain to the emts I had POTS and I was fine and I wanted to finish shopping. I now refuse to go to the grocery store alone
Oh God I really hope you don’t get a bill for that! That’s one of my biggest worries with POTs. I need a bracelet or something that says not to call 911. I’m not trying to go into debt!
@@lexbaier6393 No, they only bill you if you go with the EMT to the hospital. Just refuse care/treatment and don't go with them. Businesses are required by their insurance companies to phone an ambulance when someone faints on their property, in order to reduce liability and to not have their insurance revoked. They have to do it.
Thanks Izzy for your videos. I have learned so much. We’re trying to figure out what our 15 year old daughter is going through. (She has an appointment in a week.) You’re so helpful and fun to watch at the same time. Good luck at grad school!
I’ve never related to video so much I’ve had undiagnosed problems for years until they found my pots and now im scheduled to see the geneticist for Eds for hypermobilty but I never get any good info for my chronic pain, horrible fatigue, or any of my many problems.
You get a heat wave at the same time? Me too, I always connected the heat wave to a hot flash but it didn’t make sense because I was literally just nauseated or in pain.
the pots thing is so real, like some days ill be walking around with a heartrate in the 180s with no problems and other days itll only be like 100-120 and i feel like theres a racehorse in my chest😭 theres truely no rhyme nor reason to pots
The 2nd one is soooo true sadly. And only chronic pain warriors know why or how that is! It probably don't make sense to those without daily chronic pain!
When I got a MALS diagnosis (randomly from a POTS specialist/diagnostician) after having so many stomach issues and getting like 5 other diagnosis at the same time for various things, I literally was given zero information about any of them and what treatments there were. Didn’t know how serious MALS was until I saw others talking about it online 😅 I thought it was a random throw away diagnosis that didn’t matter 😂💀 but lol no it’s my main stomach dx other than ibs (which is actually my throw away dx)
Izzy, did you have a Tibial Tubercle Transfer on your knee? I had this done in 1995. Before the surgery, my knee would sublux frequently and the pain was awful.
Gastroparesis plan for me: there are these meds, but they are very risky and probably don't help, OH and the meds can cause an uncurable muscle movement disorder. Well that's it, that's the plan...l
You might want to dig up the studies at Mayo Clinic for the emerging repurposed treatment option Mestinon (Pyridostigmine) for treating gastroparesis and other digestive motility issues. Mestinon doesn't have the nasty side effects of the dopamine blockers that you're describing.
One bonus of Chronic Pain… your car can be sold as low mileage… VERY low mileage… (my current car has done under 1,300 miles… and it’s 3.5 years old lol).
I hear you about not getting any plan on what do to. You basically have to demand any sort of attention, tests or treatment. Also yeah POTS is so weird like how do I explain to a doctor I literally cannot stand for longer than two seconds without being uncomfortable but I can walk okay. Although any exercise also makes me really tired. Is that a POTS thing too?
Yes, exercise intolerance often accompanies POTS. Researchers are even running trials with the POTS medication Mestinon to treat exercise intolerance and fatigue in patients who have ME/CFS. It sounds like you're experiencing blood pooling in the legs. Keeping your legs moving helps to keep the blood moving properly. However, as soon as you stand still, it's not moving properly. Perhaps if you explained your situation that way to the doctors, they'd understand better?
@@specialagentA The first line treatment of POTS is to try drinking more fluids, salt, compression calf sleeves, physical therapy to build more leg muscle, and perhaps occasional IV saline fluids. When those aren't effective enough; Atenolol or Propranolol, Guanfacine or Clonidine, Ivabradine, and Mestinon are the top medications for POTS. Some POTS patients respond okay to Florinef or Midodrine, but those simply treat POTS by jacking up the blood pressure by brute force - which isn't generally good for long-term health and can be dangerous for patients who have underlying health conditions like Ehlers Danlos syndrome, Marfan syndrome, Loeys-Dietz syndrome, etc. If your symptoms aren't being managed adequately enough, advocate for yourself to try the various types of medications until you find which one works for your body. Every patient is different, so it might take time and an open minded doctor to find your best treatment option. For me, it's Mestinon during the day and a small dose of Guanfacine at night. (Guanfacine also treats my migraines, insomnia, restless leg syndrome, and anxiety.) Also, Doxazosin has actually helped really well for my POTS, but that medication class on paper looks like it could make POTS worse - like I mentioned, every patient is different. I reacted badly to the two beta blockers I mentioned, but some people do really well on them; and beta blockers are usually what they try first. If you don't do well on the first medication you try, don't give up - one of the other medications I mentioned (or a combination of them) might be much better for you!
@@Dulcimerist Thank you for all this info, hoping to find a doctor I can work with. :D It's a challenge living in the middle of nowhere and just seeing different doctors every time.
@@specialagentA I can relate to the living in the middle of nowhere. It might be helpful to print out research articles on treating POTS, to give the doctor more confidence on how to treat it. I was able to get on Mestinon by finding a great research article by Dr. Satish Raj of Vanderbilt Autonomic Dysfunction Center - one of the leading researchers and research facilities on POTS and dysautonomia. My doctor had actually attended seminars by Dr. Raj, and was already a fan of his work.
I was wondering what your opinion is about if POTS and OH can occur at the same time. A few months ago I went to the doctor because I thought I have POTS. I did a lot of tests at home and every time I stood up, my heart rate would go from like 55 to 140. Luckily my doctor took is seriously and said I should go to the neurologist. I did a test at the hospital (not the tilt table test, because the neurologist said it was better if I had to stand up myself..?) and when I got the results the neurologist said: 'you don't have POTS but OH, because your blood pressure dropped to 60/40 when you stood up. And one of the criteria for POTS is that your blood pressure stays the same.' But I was so confused, because during the test, my heart rate increased by 43. So that means I have criteria related to POTS, but obviously OH too. I read on the internet that some doctors say that POTS and OH can occur at one person, and some say it can't. Anyway, I was just curious what you think about this... Also: the neurologist wasn't very understanding unfortunately.. She just sent me away with the advice: drink lots of water, eat lots of salt and buy compression socks... I've been trying that for four months now, but there isn't any improvement. It's only getting worse tbh. And so I've been reading on the internet about medication that stimulates the constriction of the blood vessels and that it can help with OH. But the neurologist didn't mention any medication. She only said that I can't take medication that lowers your heart rate (often given for POTS) because the increase in my heart rate prevents me from passing out due to the extremely low blood pressure.. Do you have any experience with the medication I mentioned earlier (for the constriction of blood vessels)? Anyway, sorry for this long story hahaha
My body is a bit similar, which is why beta blockers (lower heart rate) actually made my dysautonomia worse. I do carry a POTS diagnosis, but also a neurally mediated hypotension (similar to OH) diagnosis. I've been on some of the vasocontricting medications, which are often ADHD types of medications like Adderall and Dexedrine CR. I reacted horribly to Adderall. The best one for me has been Amantadine, which has some of the same properties of those amphetamines, but without the side effects and without being a controlled substance. Midodrine is another vasoconstrictor, but I haven't tried it since it could aggravate my Raynaud's. I've done best with the vagus nerve stimulating medication Mestinon to manage my dysautonomia and POTS symptoms. It also treats my digestive motility issues.
Had a "doctor" that I was referred to, by the way, look at my previous mri (which clearly showed the problem), look at a recent mri with the radiologist's notes (which clearly stated "DEGENERATIVE") and had the absolute f***ing gall to tell me he didn't see anything wrong with me and that the radiologist didn't know what they were talking about. 😵WTF?!
I very much relate to the not noticing when a symptom has gone away. Normally it's not until it comes back and I'll think, oh that's right, I haven't had that for a couple of days. Either that, or thinking something is wrong because a symptom has gone away haha. When I started on meds, the whole first day I had this weird feeling in my chest and was considering going to hospital cause I didn't know what was going on. I eventually figured out that I wasn't getting heart palpitations and that was so abnormal for me that it felt uncomfortable in my chest. As far as downplaying my symptoms, it can lead to some funny statements. When I am not looking the best and my coworkers ask "is everything ok?" And I'll reply "oh yeah, it's just my heart, nothing major" or "it's all good, I'm just having trouble breathing". Apparently those statements aren't as reassuring as I intended them to be.
I know I have to have some type of Chronic Illness..but no one's given me a diagnosis..I'm constantly in pain (bowl issues..) heat issues etc the list could go on..I need a super smart doctor lol..
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I constantly get “let’s give it another 6 weeks or months and see how you’re doing” between guesses at diagnoses. I’m just like “it’s been over a decade, but okay” 🙄
RIGHT?! Ugh so frustrating!!!!!
Same here. Now I’m 68 y o and I tell them I’d like some help BEFORE I DIE‼️
I got tired of that as well. Finally, I started finding medications that could treat multiple symptoms or health issues I have, I put together a good case for each medication, and my doctor tried them since one medication treating multiple health issues was definitely worth a try. That finally got me much better treatment for my health issues. It's ridiculous that I essentially had to study pharmacology so much to get it done.
OMG, SAAAAAMMME!!!! Ugh, why?! 😑
@@nancymueller6206 from how many years u have pots
I love what you said about pots. Literally some days my heart rate will hit 180 and I won't even blackout, it's always when my heart rate just jumps to 120 or smth where all of a sudden I'm on the ground.
I can relate to that. Some people with POTS experience the heart rate spike and can generally be okay at that point, but then their bodies overreact to that by abruptly crashing their heart rate too low. This is when the blackouts and/or fainting happens. Then their bodies overreact by causing their heart rate to spike again, and can then overreact by crashing the heart rate again. This back and forth cycle puts a lot of stress on the body and can cause a lot of fatigue.
I have ME/CFS and I experiences Torsade de Pointe after two trials of amitryptaline in which my heart rate would jump to 120 at rest. It was nightmarish! Fortunately it only lasted two years each time.
Dealing with chronic health issues is never fun. I have had ME/CFS for 28 years and I have been lucky that I have had good fortune with medications and many of the worst symptoms are controlled. But it’s still a struggle.
@@keirfarnum6811 Amitriptyline increases norepinephrine, which is what fuels the "fight or flight" response and increases heart rate. The extra norepinephrine overstimulates the sympathetic nervous system and often makes POTS much worse. Amitriptyline also increases serotonin, which also often aggravates dysautonomia issues.
In contrast, POTS medications like Atenolol, Propranolol, Guanfacine, and Clonidine reduce or dampen the effects of norepinephrine.
Have they tried you on Mestinon (Pyridostigmine) to treat your ME/CFS? It's currently in clinical trials to treat ME/CFS and exercise intolerance, and is currently an off-label treatment for it. It's also an emerging repurposed treatment option for POTS and digestive motility issues. It doesn't increase heart rate, since it stimulates the vagus nerve and parasympathetic nervous system, which in turn calms the sympathetic nervous system.
I tell the doctor I have dysautonomia and had a positive tilt table test and they’re like you’re young this can’t possibly be your heart rate and I’m like I have dysautonomia it’s all over the place. Or your young you can’t have pain. I’m 29 and have known about my Ehlers Danlos since I was 23. Or it gets brushed off as anxiety when I’m in so much pain I vomit.
Me too!
Great point around 9:20 about how people feel it’s taboo to bring up or discuss someone else’s illness, but the truth is nothing feels better than someone just understanding what you’re going through! Love this video!
Yes, totally!
I remember this was something I was taught as a kid in the 90s, “if you see a person in a wheel chair, pretend like you don’t see the wheel chair, because we’re all just the same!” I’m sure it was well-intentioned, but not actually helpful, because we aren’t all the same.
The medical establishment's insistence on performing my pain & illnesses for them to "prove" it to them really ticks me off. Most of the time it's the clueless ER docs who can be more useless than skin tags. It's enraging.
Had an addisons crisis this week... er, mid me passing out, everyone was asking what Ed's and addison's wwas.... useless....
Emergency rooms are good at treating heart attacks, strokes, gunshots, and car accidents. Anything not extremely common and not causing you to bleed out all over the place, they'll triage you, and send you home.
When I was diagnosed with my neurological condition,the doctor literally told me to Google it+decide if I want brain surgery 😂 I was a minor with no internet access,money or support so I just agreed to brain surgery
I like the advice to look it up when a friend tells you they have something. This is second nature to me, I think because my dad was diagnosed with MS when I was a child, and the hospital so kindly gave me a book made for kids to help explain it. It's hard for me to imagine not wanting to know more about what a friend or family member is going through--it shows you care!
Best wishes as you start grad school, Izzy! Don't push yourself too hard with TH-cam!
On the comment about not noticing when you're not in pain even though pain is your baseline, I have the same experience typically, and I think it is just because I dissociate from the pain to be able to numb out/tap out of my body's pain and push through life because I have to in order to manage to survive it and adapt to life as best as possible.
Each other..Do you think shes crazy? I've had it with medical professionals. I have fibromyalgia, RA, chronic fatigue had liver cancer got a transplant but no one treats fibromyalgia in the area I live in even though I travel back & forth to SLC, UT for transplant team & cancer checks.
Thank you! For this pain statement...and medical doctors w/degrees have ask me things like; What do you want, a magic wand? My reply was Sure if that will help I will take it!, After over dosed on pain meds and still seeing things in my face nurses and aides were commenting
Obviously my right hand has nerve damage from neck rebuild and dang fingers get in the way. I can't text and the brain fog only adds
I have had ER staff question me having EDS. Thankfully I have pictures on my phone of my genetic testing results from when I sent them to my parents that live across the country. Still it’s really insulting and frustrating when they interrogate me like that.
The ER is one of the worst places to go for people who have EDS. The ER staff would have obsolete and inaccurate knowledge of EDS, due to the classification system being revamped in 2017 and the 13 different types of EDS being so confusing to medical personnel who only have rudimentary knowledge of the group of EDS types and related collagen disorders such as Marfan and Loeys-Dietz.
@@Dulcimerist yeah I try to go to my doctor first but sometimes she sends me to the ER. I have a tendency to get pericardial effusions and some not great allergic reactions so sometimes I don’t have a choice.
I keep every test result: blood work, MRIs, CTs, everything in a file. It's also helpful because you will notice when your levels may be changing for better or worse before the doctors do. They are mainly just looking if it is out of range. But some doctors understand like "the low end of normal" because some of those ranges on tests are very large. But good on you, lots of mistakes happen in the ER, you need to be on top of backing up what you have!
I think the point about people feeling it’s taboo to bring up illness/disability explains why some of my friends seem uncomfortable when I talk about my illness.
Yep thats exactly it. Disabilities are still treated as smth to be quiet and ashamed about. Its bs but until people start listening to disabled peoples its prolly not gonna change.
I personally struggle with the anxiety of "How do I explain this without being TMI?" or "How do I explain to my teacher why I need to use the restroom a lot without other students hearing?" I have a chronic digestive illness. It also puts a lot of pressure on my bladder. It's so godamn embarrassing to have to ask to use the restroom constantly. I wish there was a way for me to exist without other people knowing what's happening with my body
@@nebbula7897 that’s rough. I’m sorry that you’re dealing with that. While obviously, I don’t understand completely, because everyone’s circumstances are different, and everyone reacts on different ways, I can definitely relate to the feeling of not wanting to share too much about my health issues, because I don’t know if people will be like, “Gross, why would you say that. I don’t need to know that,” or if they’ll understand that this is just my life, this is what I deal with, and this is what I need to do to deal with it
@@sarahorme9415 Yeah, and I'm sure I can't completely understand what you're going through either, but we're all on that chronic pain train. I wish more people would understand that some of us can't help being "gross." Our conditions are not punchlines
@@nebbula7897 !!!! “Our conditions are not punchlines” bruhhhh. That’s THE most profound thing I’ve heard all day.
"When it suddenly stops hurting"
I call that the good pops
The bad pops dont hurt as much as the good pops cause relief
If that makes any sense
OMG. I was laughing so hard at "you're not vibing, you're vibrating" that is so me. "oh two ribs just fully dislocated but I'm fine. Just give me a sec" or "oh the entire side of my rib cage is immobile. No worries I'm fine"
Yes 😅 'my whole leg is numb rn but don't worry about stopping, il catch up in a bit I'm fine'
*cracks entire body* yeah I’m good now
Not only the wave of nausea and heat and like cold sweats… but also the instant “all of the saliva disappears from my mouth and I cannot swallow this bite that is in my mouth” that hits me, too! It is SO weird and horrible.
This is me just before a sesion with my physical therapis this week.
"Uhm, I don't feel really well today. Wow, my balance sucks with this heat. I should tell the PT.
2 minutes later:
PT: " How are you?
Me: I'm fine
I have to learn that "I'm fine" is the correct answer when you cross paths with your neighbour, it's not the correct answer to give to the professionals that are treating you.
Hm, reminds me of when I subconsciously tried to hide the fact I was lightheaded and reeling when getting off the cardiologist's exam table. The nurse was perceptive though I saw him write a little note down haha. It's the office that finally figured out what was wrong with me.
This video, really relatable. My sister when she used to see me shivering in 30°c weather in the early summer evenings or limping & needing my husband to carry me to her bathroom she always heard from her lil sis "yeah, I'm sorry, it's just my body, I'm sorry, I'm fine." 🤦🏽♀️🤷🏽♀️🤦🏽♀️Smh! I still apologize for my pain when I'm struggling to explain my mobility issues with the amount of pain I've always felt, to dr's.🤦🏽♀️ it changes levels and frequency but the location has been there mildly since birth. So it's hard to recognise because it really is apart of us. Pain has grown with us, thanks to the dr's dismissing it as "growing pains" 😩
This video is so great for a lot of reasons, but an unexpected one is the way you demonstrated pacing and spoon awareness. The way you recognized the drop in energy and didn’t push yourself to keep going and going. But most of all, you were open and honest about your fatigue…
That kind of thing is impactful to watch ❤ especially when the rest of the (able) world tells you to push through
I love coming across videos like this. I was diagnosed with young onset parkinsons at the age of 32. 90% of people I tell that I have young onset don't believe me. They think i'm faking it. Three different people at jobs i've had (they were ALL nurses!!) did not believe me. One nurse made me show her my medication i am taking to "prove to her" that I have it. Another said I was faking it because when I reached for something, My hand was not shaking at the time...Yeah, because I had medication in my system. It is frustrating as HELL having to deal with this disease at such a young age and also having to deal with people accusing you of faking it..Because it is only an "old persons disease". Glad to know these people know more than my movement disorder specialist!
You nailed it on the nose when it comes to having to “ hide our pain “ or not talking about our Chronic conditions because we are given no choice but to, especially when you’re at work because you are asked “ are you sure you’re going to be able to do your job?” Constantly and it gets annoying! I have POTS, too even though I have cEDS and I have CCI , too. But I have felt like I was going to blackout before at work and it slammed me into the circuit box and another time into my housekeepers cart.
As an endo sister, I'm exhausted ALL the time, my body is attacking itself, so even during my nonpain days, I'm so tired I just can't life.
I always struggle between downplaying my pain and symptoms to not be making it all about me, and trying to up-play them so I'm taken seriously if that makes sense...
It feels great to have finally found a supportive few people who have heard my complicated story of the health challenges I face daily. Instead of testing me to make sure I have the symptoms of the list of conditions that I am diagnosed with they simply said "I believe you".
Those 3 words are life changing comfort to me.
I hope we all find people who can say them to us, who are willing to be part of our team.
Blessings from South Eastern Australia, Dot
Haha I had things I wanted to say but I can’t remember them because brain fog! These were all really relatable tho, even if I don’t have pots.
Oh! I remembered! I basically always now go into a doctors appointment having done my own research and knowing what a diagnosis/treatment should be. And usually the doctor is like “yeah whatever you researched sounds fine, we’ll do that.” Or in the past I’ve asked for a new plan bc nothing I’m doing is working and I’ve had doctors tell me “no keep doing that thing that isn’t working, because I don’t believe you that it isn’t working.” So most of the time I know more about my conditions than the doctors, and I’m sure others find this relatable.
Omg the random doctors that make you “prove” your pots dx!! I get the “poor mans tilt table” constantly and also for EDS “well can you touch your thumb to your arm?!” And I’m like “yeah but I’m not going to show you and hurt myself lol”
I’ve had doctors do that too and the one time my feet were literally blood pooling as I was sitting there and the doctor was like I can see your feet blood pooling from here and I almost cried because she actually believed me when other doctors don’t even when it’s literally in my file.
I cant seem to do the thumb one with one of my hands anymore. Which I was warned by the physio can happen as we get older. So my last Dr said I didn't have EDS...OK buddy you tell that too all my previous Dr's, physiotherapists and rheumatologist 😒
@@dizzydozdb you don’t have to have a perfect score on the scale to have EDS
@@dizzydozdb lol good thing you can’t technically “loose” EDS dx! My joints are getting stiffer from the damages of EDS too
@@dizzydozdb If you can have a "good day" when you can do it, have someone help you take photos of you doing the thumb thing and other EDS things. That way you have permanent documentation.
Omg I get the “heat wave” thing with nausea too!! And the back of my neck tingles and stuff. Thank goodness for zofran lol
Tiktok #2 was something I understand so much! I have chronic headaches/migraines but a few months ago my arm and joints started hurting, so I kept a pain diary for a while. Turns out I was having severe all-body pain and just not noticing it because my headaches were worse 😳. Now I'm going through the diagnosis process for fibromyalgia or something similar.
yes! me and my partner absolutely talked about not noticing your pain has gone away, kind of in relation to how i have low level consistent pain but i dont realise its there sometimes but its draining me anyway
Everything you said in this video reflects me 110%. It’s like we experience the same in regards to our behavior and attitude towards eds and pain. It’s nice boy to feel so alone in being young and chronically ill 💗
I went to the hospital last week because my heart rate went from 120, to 50 then up to 180 in 30 seconds. I’m on my way to being diagnosed with POTS (possibly also have hEDS but not confirmed yet). It was so scary but I’m glad it was finally caught!
Good luck in school! I’m happy to watch your videos whenever you have time/energy to post.
I'm so glad to hear you're on your way to a diagnosis. I hope that they can give you something to help the symptoms. I know for me, my diagnosis played a big role in me feeling better since it led me to new medications that really help
I did the same with my gastroparesis dx. My Dr didn’t tell me anything except “here take Reglan up to 3 times per day”. I didn’t realize for years it caused me so many issues and that my food choices could make me feel worse.
Reglan can have a lot of side effects. Lactation is the weirdest, but that type of drug causes muscle issues, sleep issues, and depression for me. Hopefully it's working well for you, with little or no side effects.
I take Mestinon three times per day for my gastroparesis, and that medication has no side effects for me - and it also treats my POTS and fatigue. It's an older medication, but is an emerging repurposed treatment option for digestive motility issues and POTS. Mayo Clinic and Vanderbilt Autonomic Dysfunction Center are a couple of research facilities that pioneered Mestinon for these new uses, due to its beneficial effect on the vagus nerve and parasympathetic nervous system.
@@Dulcimerist very interesting! I’ll talk to my dr as I’m going to be tested for POTS or dysautonomia myself. The excessive sweating is worse then the almost passing out for me.
@@Pixel8d72 Excessive sweating sometimes accompanies the hyperadrenergic type of POTS, where the body overreacts and releases too much norepinephrine and adrenaline into circulation. Medications like Clonidine or Guanfacine can treat POTS and excessive sweating by signalling the body not to dump so much norepinephrine and adrenaline into circulation. Mestinon might be able to reduce sweating in a roundabout way, but it's not known for profoundly reducing sweating.
The good news is that there are quite a few treatment options available for POTS. Other good POTS medications include Ivabradine, Atenolol, or Propranolol.
@@Dulcimerist my niece has POTS and takes propranolol. My heart monitor got delayed because my sons have covid. But once I have an answer I’ll discuss these meds with my drs. Thank you so much for this information. I greatly appreciate it.
@@Dulcimerist Do you happen to know what are the actual drug names of the medications you mention in your comments please, specifically:
*Reglan*, *Mestinon* (from this comment i'm replying to) and
*Clonidine*, *Guanfacine* (from your 2nd comment, further down in this thread)?
These are not names of any medicines that I am familiar with. So now I am not sure
1. Whether they are a particular brand name of those medicines, and I might know the actual drug name/generic name/etc, just hadn't heard those brands, or
2. If they are just non-UK names and I know them by a different name, or
3. If they are not available in the UK, hence why I wouldn't know them, or
4. If they are simply medications that I just haven't come across before!
Any help appreciated thanks, having a rough time at present, so anything that I can look into etc is good, it can just be confusing sometimes with medicine names. Thanks 👍🏽🙂
I think the downplaying and focusing on other small stuff is a coping mechanism for us because I feel like non chronic pain sufferers will never understand what it is to hurt ALL the time, all the time, so you have to vibe…like what else?
4:45 yes!!!! oh my gosh i had that happen all the time when i was still getting diagnosed with EDS and POTS
I've learned not to down play as much because my parents will think I'm fine if I don't outwardly express I'm not which means I don't get the help I need unless I speak up.
I want to deeply thank you for your videos. It has been confirmed I don't have EDS but instead have CFS/ME and very high possibility I have POTS (just waiting for insurance to let me get tested). Your videos have helped me so much throughout the past 2 years. I didn't even know what POTS really was until I saw your videos. Our symptoms may be different but there's also so much overlap that I never felt alone. Even when doctors kept dismissing me I knew by these videos and the lovely comment section that I was not alone and that there was hope.
I'm so happy that my videos have been helpful for you and it's awesome to hear that you're on your way to figuring out what's going on healthwise! Connecting with others and seeing other people going through a similar journey has also been extremely helpful for me. Sending hugs!!
@@IzzyKDNA Exactly how I feel as well. Hugs to you too
I can really relate to the 'getting sent away with no information' one especially. I've been rushed to hospital 3 times in the last few months for collapsing, seizures and each time I was unconscious for over an hour and bedridden for a few days after. I also have chronic pain and struggled to walk after because of hip and knee dislocations. But each time it happened, I got sent home a few hours later, once my vitals were stable and told to drink, get some rest and come back if it happens again (which it did but I got told the same thing again).
My latest one was extra scary as it happened in public and my mum was called and saw me in a bad state. Apparently I had a few seizures and was mostly unconscious for hours, it was by far the worst one. I've been terrified to leave the house ever since as I don't want it to happen again but I don't want anyone to worry so I just pretend that everything is fine.
I just got told by my GP that the tests that I got a year and a half ago, confirmed that I definitely have POTS but I was never told and there wasn't any follow up so I'm now waiting for my next appointment. I also apparently qualified for hEDS but was told that there is nothing they can do so 'don't overdo it' was the best advice on that one.
Sorry, that was really long but that's my story. I know so many of us go unnoticed and ignored for years but after almost 11 years of chronic pain, faints and so many other problems, I'm finally getting answers.😊
Oh gosh that sounds really scary, and I'm sorry to hear that you're feeling scared to leave the house and also to let friends know what's happening. I hope a doctor can figure out what's causing this. Sometimes it really just takes one good and knowledgeable doctor, but to find that doctor can really be a journey...
@@IzzyKDNA Hopefully. I love your videos, they really help me feel less alone so thank you.💖
@@IzzyKDNA quick question, what markers do you look for in genetic testing for EDS? I got mine done but don’t know how to read it😅
@@OneOfUs- Sorry you're experiencing symptoms that severe! Have they run an upright MRI to follow up on your hEDS diagnosis? This would check for Chiari malformation and cervical spinal issues such as thoracic outlet syndrome. Issues like these can factor into POTS and seizure activity, and are often secondary effects of Ehlers Danlos syndrome.
Are you on any medications or over-the-counter health supplements? Some of those can aggravate POTS and seizure activity - especially if you happen to have hyperadrenergic POTS.
@@Dulcimerist I haven't had any more follow ups on my EDS and I just got an appointment booked today with cardiology to discuss my POTS and the options going forward. I'm not on any medication at the moment as they don't want to start me on the usual medication because my resting heart rate can drop to 30bpm or below but jump to 200bpm and they don't know why this is happening to these extremes.
I got diagnosed with AMPS today, and POTS you are a big impact in my life I love your vids and I watch you alot because the doctors never believe me!
Doctor: “I think you might have EDS Type III, and very likely POTS…. ok, so that’s all we have time for, I’ll see you in 3 months”
Me frantically googling what the hell EDS and POTS is and freaking out! Found your channel and you have helped me so much!! ❤️❤️
Did they recently tell you "Type III"? That whole classification system became obsolete in 2017. If your doctor is still using the outdated system, they're definitely way behind the times on managing EDS symptoms and treating EDS patients.
Did they at least try you on any of the main POTS medications for EDS patients? They usually try a beta blocker (Atenolol or Propranolol) first. If they doesn't work, they then try Ivabradine, Guanfacine, Clonidine, or Mestinon. If gastroparesis or chronic constipation is present, they often start with Mestinon since Mestinon can treat both POTS and digestive motility issues.
@@Dulcimerist He is an orthopeadic surgeon (hip), and alternated between Type III and hEDS. I passed hEDS criteria (other than ruling out other forms, which seem unlikely!) and his suggestion of POTS was based on history of fatigue and weird HR stuff. I spoke with him again last week, and he actually seems rather knowledgeable on protocals pre-op/post-op, POTS, dysautonomia and he refused to operate within 12 months of my last surgery.
I went away and did a heap of research (although still so much to learn!).
hEDS - meet full criteria, although no known family history and haven’t ruled out other forms
POTS - did laying to standing test at home with a HR increase from 52-141, felt like I was gonna pass out! So he could be right on that one too but I haven’t seen a cardiologist yet.
@@kathrynbrooks7091 Some healthcare facilities have neurologists in charge of managing POTS/dysautonomia patients, so double check to see if you need a cardiologist or neurologist to manage it.
You'll likely start with Atenolol or Propranolol. If it crashes your blood pressure too much or you react badly to one of those, they'd likely try you on Ivabradine. Another option is Guanfacine or Clonidine. If you happen to also have digestive motility issues, Mestinon can treat both that and POTS. There are quite a few treatment options out there, and hopefully your doctor will be able to figure out which works best for you.
@@Dulcimerist thanks for the info! His team of nurses are well informed but I definitely will be asking if the hospital has protocols/specialist.
If it wasn’t for the surgeon, I would have gone on thinking that my POTS/dysautonomia symptoms were completely normal! I’ve learned to live with them.
As for digestive stuff, as I’m only new to the diagnosis and working out what’s normal and not I haven’t explored answers to some weird symptoms I have. Things like unexplained nausea after eating in the morning, or simply not eating for days because I just don’t get hungry. It’s something I am yet to discuss to with my GP.
@@kathrynbrooks7091 Yeah, your GP can refer you to a gastroenterologist, and you'll likely get a gastric emptying study where you eat eggs with radioactive dye and they take some periodic X-rays for a couple of hours to see how it moves through.
I used to experience the nausea after eating in the morning (sometimes even puking), and periods of days without getting hungry. After starting Mestinon to treat my digestive motility issues, I'm still getting used to actually feeling hungry like a "normal" person. Feeling hungry feels so weird after finally getting my digestive issues properly treated! lol
"Even if they do know you just pretend it isn't happening"
THIS
I'm so ashamed of how badly I'm hurting and how I react, I feel like a HUGE burden and like nobody wants to deal with me so I suck it up and pretend I'm fine. And so now everybody pretty much thinks I'm fine. So I'm afraid to talk about it at all. It's such a mess. Thank you for talking about this.
Please do more of these videos I love them
yay I'm glad you like them!!!
@@IzzyKDNA ooh 😯
When I got my HSD diagnosis my doctor said there was no treatment and that was it. I left feeling rather let down and abandoned. It wasn’t like I suddenly felt better than before being diagnosed.
SO frustrating. I'm sorry to hear the doc legt you with no treatment plan or anything
Physical therapy to strengthen/stabilize hypermobile joints can be a big help. It sounds like you should look for a better doctor. 😑 Idk why so many doctors have to be so arrogant that they forget they don't know everything.
Check national and international nonprofits about your condition to see if they have a list of doctors who do actually know about and how to treat it. Also check for local support groups. They might also have a list of doctors and group members to get feedback from about those doctors.
Treatment of HSD is symptom management. That doctor is lazy, and doesn't want to bother providing treatment. Definitely look for another doctor who can help you to manage your symptoms. An internal medicine primary care physician might be your best bet to coordinate your care with any specialists he or she deems necessary for your medical care.
Yea my doctor said the same thing. He diagnosed me and then said that the PT and pain med I was taking was all that I could do to help and it would just be an "annoying thing" that I'd have to deal with 🙄 I understand there's no cure, but I'd like something else to try!
I have amnesia once I get to the doctor even when I write notes down. And if they ask about symptoms I don't have written down I'm like "No... I don't have GI issues" forgetting I woke up the night before with choking reflux and nausea.
100% makes sense about the pain you were describing. I’ve been in a neck pain flare all week (which is great - not really - because it’s finals week) and it makes all the other days seem like it’s no pain when it’s still a 3-4, or what I would imagine a 3-4 would be. I hate rating pain. And my leg burning pain hasn’t been as noticeable since my neck is taking the cake in pain this week. But anyway. Yes, I 100% get it and I love when you talk about it because it’s so relatable.
I hate rating pain too. Esp when it's not so bad that you can't do stuff through it, but it just makes life unenjoyable and suck.
@@sundoesshine8800 yes, exactly. I would love to experience one day without pain. Just one. Because I have no clue what that’s like.
When I'm really bad, I blame other things...the weather, traffic, whatever, when all I'm doing is complaining about pain that I can't complain about.
Omg it's so frustrating when doctors don't have a plan! Like I was left with untreated type 2 diabetes for a year and it was horrible because the doctor wanted to "wait and see what happens" while I was clearly suffering from diabetes symptoms. Now I'm finally getting treatment and doing well though.
i also fully agree with the not noticing when it doesn’t hurt. like i’ll start not limping or complaining as much and my parents are like “she’s healed!” like uh nope
Congrats on starting grad school! I’m doing my PhD at the moment, so it’ll be great to “ know” someone else going through what I’m going through.
And one of the best feelings for me was when one of my friends made a funny joke about my illness. It made me feel like she understood what I was going through and that she wasn’t going to shy away from the topic just because some people find it awkward. So ironically, her making a joke actually made me feel safe (but she’s one of my closest friends, it’s not like a random making an ableist joke about you, very different!). Thanks for the fun video, Izzy!
One really frustrating experience i had with my GI doctor recently was him saying I had "functional dyspepsia" without actually explaining it and then immediately prescribing me cyproheptadine and closing up the appointment without really allowing us a chance to say anything. When I looked it up later, i realized he had basically told me i had gastroparesis, but didn't schedule me for a gastric emptying test or even mention the possibility of gastroparesis. I figure it's probably because i don't vomit(which is more because I hate puking than because I don't 'need' to), even though only a small portion of people with GP actually experience cyclic vomiting. Just really frustrating, and my mom and i are talking about possibly switching doctors if the next appointment doesn't resolve anything.
You don't have Ehlers Danlos syndrome? It's just the digestive issues with no known cause? That's what "functional" indicates.
@@Dulcimerist i haven't been officially diagnosed(my genetics appointment is in september), but i do have g-hsd, so he should be open to the possibility, especially since I also have POTS.
@@harleywithacane8674 Yeah, your doctor should be keeping that in mind that your digestive issues could very well be secondary to HSD/EDS. POTS possibly secondary to that as well.
The good news is that Mestinon (Pyridostigmine) is an emerging repurposed treatment for POTS/dysautonomia as well as gastroparesis/IBS-C. It's an older medication, but its effects with the vagus nerve and parasympathetic nervous system prompted research facilities like Mayo Clinic and Vanderbilt to run studies and prescribe it to patients for treating these issues. It's worked really well for treating my POTS and digestive motility issues.
I got diagnosed with EDS seven years ago and I’m still asking for a plan. I am now 44 years old and it’s disseminated into multiple other additional diagnoses and they still have no idea what to do and I am at the end of my rope.
This is so scary and frustrating. I wish there was a better EDS treatment plan, or even just that doctors were more knowledgeable about EDS. I hate that sometimes you need to go to so many doctors until one finally suggests something else that might help.
@@IzzyKDNA I got diagnosed at 25 officially. I'm 29 now and have arthritis and tendonitis mixed in officially too. Doctors sucks ass sometimes
Try to find an internal medicine doctor as a primary physician to help coordinate your care. Ensure that EDS if listed as the unifying diagnosis, and that all of your other relevant health issues are listed as "secondary to EDS". I ran into this, and finally decided to learn pharmacology and find medications that could be prescribed for multiple symptoms and health conditions I have. I was able to make a good case to try them, and my doctors decided it would be worth trying any medication that had the potential to treat multiple issues with a single medication.
I have such an issue with my husband not giving a shit about my mental and physical health issues. And if I post about it, he gets mad and says I'm annoying or being negative by talking about it. I'm hurting so much that I can't tell anyone about what I'm going through. Not even him.
That's awful. Your husband should be your support system, if he isn't, you guys may need to get some counseling. Maybe he just can't face the reality of your pain because it hurts him (best case). Or maybe he just doesn't want to deal with having to help with things (worst case is he is a jerk).
@@angiect3791 I recommend counseling constantly. And of course he refuses.
Ugh the amount of times I've had doctors literally say "I don't know what to tell you" or " I don't know how to help/advise you from here". Like ok, I have my diagnoses now, which is AWESOME... but even WITHOUT the diagnoses, are they seriously telling me they can't advise me how to proceed to look after my lymphoedema, my nausea, my chronic pain etc. I"m not expecting a miracle, but their LITERAL job is to help me help myself to maintain the best quality of life still left to me. Knowing what's wrong doesn't help at all if they tell me how delicate my poor body is - how close I am to having horrific problems like ulcers etc. then give me absolutely no help to look after myself!! 😥
Also, that "massive wave of nausea". Ugh so very relatable!
I am so glad I found your channel.
At 56 finally have diagnosis of EDS was told look up info on EDS UK as I read I was like GI and Pots symptoms are what I have been banging on about for years.
I have to decide if I have a day I eat or day I drink as full feeling and nausea so bad however on a previous vlog showing you following a shower and how short of breath you were you included a picture of your feet and described need to sit or preferably lay down. My husband is OMG that is exactly what happens to you.
I would not wish this on anyone but glad to actually see I am not on my own, it is not in my head.
I also have Oestogenis Imperfecta, Adrenal Insufficiency, Fybromyalgia, Oesteoarthritis Hypothyroidism, Hamecrania Continua, Migraines Brittle Asthma and Malabsorbtion issues but now understanding more about EDS I can see how so much is linked.
I am at best when laying down but as soon as standing it is horrendous and pass-out and now wheelchair dependent when out.. Not that anywhere to go with Covid on loose.
TQ for presenting complex condition in easy to understand way.
Sorry you have those issues. I have them, too. Have they tried you on Mestinon (Pyridostigmine) to treat both your digestive dysmotility and your POTS? It's an older medication with a 75 year track record for safety, and is a new repurposed treatment option for POTS and digestive dysmotility. It stimulates the vagus nerve and parasympathetic nervous system, which is in charge of digestion and autonomic functions.
I've been using a cane for a month now for my leg pain, and I'm finally going to the doctor in 3 days! But I'm scared that they're going to just say that it's growing pains and shove me off to never figuring out what it is.
(Edit, ummm... my Lyme disease cause something close to chronic fatigue syndrome. Also, I have crutches now!)
Just found this channel. After a long process of being passed from doctor to doctor, physiotherapist to physiotherapist and back to a doctor, I have finally got a diagnosis of JHS which I have suspected since I was a child. Currently waiting for an MRI on my skin and pelvis to see what is going on there and going to also be checked for scoliosis as they believe I may have a small case but would like to confirm through the scan. Doctors haven't been much help, but thankfully I have an aunt who has been supportive and gives great advice because she unfortunately has MS
“I don’t really have anything else for you. Why don’t you come back in six months.” And that was from the best doctor I’d found. Who correctly diagnosed me, thankfully. But… uh… what? Now, 9 months later, I finally got in to see a specialist who has me seeing 3 more specialists. When I could have done this a year ago. Oh, but no. Instead I had to put myself through TH-cam medical school & figure everything out on my own. Because that first doc didn’t / couldn’t / wouldn’t make a plan for me. What?
Glad that you seem to be on the right track now, though! In order to receive proper medical care, those of us with less common medical conditions need to learn all we can about our health issues and then advocate for ourselves to ensure we receive proper medical care. If a doctor says they can't do the job, patients have the power to "fire" the nonperforming doctor and "hire" a new doctor who will provide the services the patient needs.
Im not sure why it is relieving but, watching another young sick and attractive female like myself ( lol ) talk about the realities of my current life, it made me feel much better. I'm glad your video was the first I watched today. Great change for the start up of my day. Thanks for taking the time to reach out even though I totally understand how exhausting even talking can be, much less putting the brain power into coordinating the video and structure of your content. I get tired just feeding my animals and taking meds so cheers to all of us lmao. Hugs, have an amazing day!
It can feelso lonely holding in or over explaining hiding or fearing vulnerability its brought me exploring the online world more...
I had a doctor recommend me for an unnecessary vein ablation in my legs when I told her I had POTS ... she didn't even know what it was an looked it up in front of me, got a quick google summary and then tried to explain this illness that i'd researched extensively because I related and then matched a lot of the symptoms. I don't faint, but vertigo is ALWAYS extreme from sitting to standing, just sitting down in a chair I can feel my heart pounding to keep my blood from leaving my head, and I have to keep my legs up all the time, lay down 24/7, or wear compression socks if I have to walk around at all. I eat salt out of my palm all day now because it's the only way I can get my BP up. Nothing else helps.
My heart rate jumped to 120bpm the other day in the doctor's office while I was getting my pulse and BP taken, just from me talking. The nurse looked me like "... um...?" My current cardio was SO PISSED when he found out I'd been referred for vein ablation by another cardio when I don't have spider veins or any history of enlarged veins. My issue is that my heart isn't strong enough to keep my BP up, so the vein ablation was literally pointless and did NOTHING for my symptoms. current cardio did my BP while I was standing and while laying down after I described my symptoms, and that was that, shows over, diagnosed with POTS and then given recommendations for get my BP up and proper compression socks.
Currently he's considering adding a medication to artificially raise my BP because the compression socks just aren't doing enough day-to-day and cardio exercise isn't an option because of other things.
i’ve been struggling with heart rate and chronic pain issues for a while now but i haven’t been able to make it to a doctor and that’s taking a toll but there isn’t much i can do about it
one of the reasons my pots wasn't diagnosed for years despite the tilt test showing that hi, yes, I do have pots (both my blood pressure and heart rate are affected when I have syncopes. I literally went into asystole, but everything was fine according to that cardiologist), is because my base heart rate is incredibly slow. no one thinks that 80 or 90 bpms is tachycardia. except, it kind of is when my regular heart rate is at 40 bmp. thankfully one of my current doctors is a specialist in dysautonomia and she knows better than those doctors I had years ago who wouldn't listen to me or believe me and just said it was probably anxiety.
I have found physical therapy, acupuncture and sleep, when it is attainable to be helpful. But there is nothing to remove my pain. As I am nearing 6 decades it is getting worse. When something doesn't hurt I don't necessarily notice either because something else hurts to make up for it. My brain always goes to the worst pain at the moment. However, when my hip stopped hurting for almost 24 hours since 1996 I did notice that and I felt bliss.
Every med review I have, I have to explain POTS to the doctor or nurse because they see ivabradine and thing 'young healthy looking woman on angina meds?!'. And last time, the doctor asked me some questions like she was checking the criteria with me and I was thinking 'I was diagnosed in 2016, nothing's changed so stop questioning me!'
Chronic illness with pain and a sensory processing disorder make for fun doctors appointments (ironic mode on). I never get enough time to translate my internal feeling towards being touch averse and the doctor palpating and moving me or my joints around. Jumping from one to the other in hypersonic speed for me and when my responses come delayed the doc accuses me of making things up.
I get the "we wait a while and see, if things go away" "we deal with it, when it does not go away"and when I come again and again with my complaint, they pretend it is the first time, I tell them about this particular problem.
It is so tiring.
I can relate to that. My appointments go better when I write or type everything on paper so that a detailed description is available for the doctor. Doing that also ensures that i don't forget to mention anything.
Bringing a friend or family member with you to appointments is also a huge help. That person helps to remember and describe details, advocates for me, and makes the appointments go much better and be much more productive. It sounds like you really need to bring someone with you to appointments.
@@Dulcimerist in present times, they do not allow someone in my appointments, this is problematic. Hope, times will get less restrictive again. Patient services are not sufficient at the moment. I deal with a handfull of rare diseases, and each one of them interfrres with the others. Finding a balance is really Hard. As soon as costs are covered, I will be able to get an Assistant again.
@@NickUncommon Yeah, the restrictions have had a negative impact on people who need an advocate with them at appointments, due to disabilities. With restrictions easing, the Americans with Disabilities Act might give you a lot of traction against the remaining restrictions, in order to bring an advocate/assistant with you to appointments as a reasonable accommodation. Just tell them that you have an Autistic Spectrum Disorder which can affect communication and other cognitive abilities; and if they want you to understand, remember, and follow doctors' instructions, they need to allow you to bring an assistant to all of your appointments. Since you never know if you'll be having a good or bad day with all of your medical conditions, describe how you are on your worst days and assume you'll have a worst day at all of your appointments. That way, the person you're talking with will be able to see the real need for an assistant, and will be less likely to just dismiss your request and needs.
@@Dulcimerist in Germany, the American disability rights regulations do not apply, unfortunately. And our Teilhabegesetz just changed. It looks good on paper, but is too New to be taken for granted ihn every day situations. As soon as my request for an Assistant has gone through, things will be better. For now, I need to fend for myself. This corona virus has come at a time, after my move, where things still were not settled into New routines, and I am not sure who I will get to support me in Independent living. So it is a work in progress.
I was diagnosed with IST, neurocardiogenic syncope and oesophageal dystonia on the same day, given no information about it and was prescribed meds. I was like oh okay sure. Looked into them and I’m like OH. Thankfully now I have a plan for these few things and can deal with them most of the time
I had to stop my Plaquenil for my arthritis because an antibiotic I'm on reacts with it. I then noticed how well it actually was working on my pain, because of how it came back about a week after quitting it. It didn't feel like it was doing anything until I quit taking it, I guess the improvement was so gradual. But most of the time, I do not notice my discomfort until it is gone for a bit, because I have to work and do things anyway, I really force myself through it. Today at the doctor, the nurse asked me where I am having pain, and I just said a stomach ache of about a 2. I totally forgot the headache that had been stabbing my temple every morning for two weeks.
And this might sound morbid, well it is. I have had some things very wrong with my health for about the last 15-20 years. Tests rule out more things than they actually find. This summer I was diagnosed with a terminal lung disease, it actually shows up on CT scans, and my lung biopsy was positive, so like no denying that this illness is real! A part of me was actually happy that maybe now I will actually be validated, because I have an illness that shows up on tests. But it's terminal, so of course that is devastating. People act like it's great when a test come back "normal", but for me, it just means they didn't do the right test, because I know something is wrong. Doctors gaslighting, not investigating further, saying my illnesses are in my head or just stress and anxiety has been the norm for so long. It is sad that it takes a terminal disease to finally be taken seriously, and still even not so much, because the pandemic is more on doctor's minds than anything else. Hint to doctors and politicians: Other illnesses besides Covid are still happening 👀
Hi Jessica! Please respond :) I am really curious to what lung problem they diagnosed you with because I feel something is wrong with me too. I need to get it checked and every time they’d done an x ray it comes back normal but I know that a CT scan will show much more.
I went to a specialist and got diagnosed essentially as having "some sort of hypermobility" and to do my own research. Upon doing my own research I meet all the criteria for hEDS and she was the exact person who would've been able to diagnose me, but she didn't. To clarify, the pediatrician was significantly more helpful because she worked with me and got me diagnosed with something else I had (lyme disease) and got me set up to figure out the other problems (the theory that me, her, and my mom all had was that there were multiple different problems at once) So were working towards a rheumatoid arthritis diagnosis as well as an official hEDS diagnosis. We're getting through the diagnoses little by little, but its absurd how long this process takes and its absurd how unhelpful the actual specialists that you were told to go to are
Hi, I have severe r.a and one kidney, and hashimoto's, I was four years old and diagnosed with rheumatic fever, and spent a year in the hospital. The doctors I see 5 of them, are the best. Learn stuff,be positive, and always make sure your own and your doctor's research is correct. Do not get discouraged, keep trying, get many opinions from drs. ,research drugs,and symptoms. My r.a. is so much, that I had no choice but to have neuro spinal surgery. I refuse to take pain medication. Reinvent yourself, be sarcastic and funny. So much more healing than being depressed about your health...
3:18 omg so me!!! Today I was literally like this, I didn't sleep because of my neighbors and I was overloaded (autistic thing, it sucks!!) and my heart rate was at 140 and I couldn't even hold my breakfast and I was like "I'm fine, mom, thanks" but I definitely was not!! But since today is father's day here I really wanted to be awake for him as he's not feeling well this past weeks, and I did it, I stayed awake for about 4 hours feeling like shit and hiding it from him. He knew something was off with me, but didn't notice how bad it was (as almost everyday something is bothering me), and it's an ability we shouldn't need to have, but we do!
(Ps: I have no diagnosis other than asd, so I can't even say "oh, today it's this" or "yeah, it's just a flare up" because we don't know the cause of anything)
Sorry you're experiencing that. Having Autistic Spectrum Disorder is probably especially frustrating, as that can interfere with interacting with doctors.
Although I don't know whether or not you have POTS, the POTS medications Guanfacine or Clonidine might be of interest to you. They're both FDA-approved to treat ADHD, a condition which sometimes accompanies ASD. These two medications signal the body to not release so much norepinephrine and adrenaline into circulation, which in turn calms the "fight or flight" panic and anxiety response and prevents the heart rate from skyrocketing. Due to the specific manner in which these two medications work, they're also often prescribed off-label to treat anxiety and PTSD. My daughter and I both take Guanfacine at night, and it successfully treats our insomnia and restless leg syndrome in addition to eliminating our anxiety issues.
Izzy, Can you do a video on treatments we should be looking into or signs that we need to seek treatment instead of tough it out? I have a hard time getting myself to believe I need to see a doctor. Or also it would help when a doctor is too dissmissive? Thank you so much for all of your videos!
I tend to tear up and cry a little when I’m in less pain. So in the ER and I need some help because I’ve been dealing with level 8-9 pain for like a week now with no breaks and they jab me with some morphine and a muscle relaxer. I only start to cry a few minutes later. I cry because I feel some relief and I’m just so thankful I tear up 🤷🏻♀️. It freaks the doctor and nurses out. They think it would be the opposite I’d be crying in pain but really I cry when I’m “without.”
I have crohnes disease I was diagnosed in 2018 and then in 2020 my 13 year old daughter got diagnosed with junior arthritis.
I keep zofram on me at all times for any kind of nausea. I get nauseated if I eat too much or too fast. I get nauseated if my back sublaxed, I get nauseated if I get bloated.
I actually found out my diagnosis of MECFS and fibromyalgia from a written referral to a physiotherapist. My doctor never said a word about it, let alone discuss any strategy to keep going 🤦🏻♀️
I have PsA, gastroparesis, and now I have been diagnosed with Hypermobile Joint Syndrome. My pain doc says that there is now way I could have Heds, because my skin is not loose although I have all the other criteria for Heds.
That pain doctor has obsolete and inaccurate knowledge about the 13 different types of EDS. Doctors who get hung up on the skin thing are getting confused with classical type Ehlers Danlos syndrome. A patient with hypermobile type Ehlers Danlos syndrome doesn't need to have any skin involvement at all. Print off the new 2017 hEDS diagnostic criteria and have the doctor go through it with you if they don't believe the hEDS diagnosis. Or simply tell that doctor that you do have it, and that the doctor is going beyond their scope of practice by dismissing your hEDS diagnosis since they are not a geneticist.
@@Dulcimerist thank you. I have been to some many docs. For the first couple of years they tried to tell me it was all in my head, I fought to get into different docs and unfortunately in Alaska there is just not alot to choose from.
@@amandarumfelt I experienced that as well, and had bad reactions to psych types of drugs. I live in Montana, which is almost as bad as Alaska for not much to choose from. Hoping you can get some better care. Learn all you can about your health issues and the various treatment options, and advocate for yourself. It often helps to bring a family member or friend with you to doctor appointments for support and as an advocate.
@@Dulcimerist what part of Montana I was born in Lewistown, my sister was born in Bozeman, and my brother was born in Kalispell. I have family all over the state.
I do learn all I can. I had a really bad reaction to trazadone and Zyprexa. My pcp will no longer put me or allow me to take certain ssri's. Is there a place where I cN message you instead of on TH-cam?
@@amandarumfelt SSRI drugs messed me up really bad, too. I'm around the Billings area, but my sister lives in Bozeman. I listed my email address in a comment here, and hope that you grabbed it before I deleted it to avoid having spammers find it.
8:54 let me think of one... ankylosing spondylitus pops into my head... picturing it in my head as a hunched over person waddling like a penguin everything stiff and locked up.
hahaha
Now add EDS and POTS on top of that and you have me!!!!
I think that POTS should have its own mascot the "Fainting Goat"!
Last week, i was in the hospital for my endometriosis, and when i mentioned to the dr that i had POTS she said, "they diagnose everyone with that these days"
i see this kind of response commonly about adhd and autism too because the amount of people getting diagnosed has risen over years. but it is so weird to me because these things are increasing because people are being educated and idk how that could bother any doctor?? they’re literally upset about their field improving and advancing. makes no sense
Those are fightin’ words. I would have just stood up fast and fainted right there and then. Then when I come to I’d look her in the eye and call her a bitch very mater of factly.
That's so irresponsible of that doctor just dismissing your diagnosis! Using that logic, I guess that doctor doesn't need to wear a mask or receive a vaccine because "they diagnose everyone with that virus these days".
no but the downplaying is too real 😭 my arms have been paralyzing recently and i'm always like "it's fine though don't even worry" while im trying to literally just move my arms HDHDJFH
literally i had surgery 2 months ago, was meant to be day surgery and i was first in at 8am, was in recovery until 8pm and was only discharged as they couldnt find a urology bed for me but that GA was the worst ive ever had and ive had 31! I went home that day with zero information thats including how to get my SPC supplies! my first appt afterwards was meant to be on the 21st august but it got cancelled and its now not until next tuesday?!? Ive had 3 seets of antibiotics already for bladder infections which i kinda knew would happen but thank god my mums a nurse and has been able to get catheter supplies for me where she works but its been a shit show, ive only left home 5 times since surgery and that was the first week of august….
I had a positive tilt table test and the nurse was like it was positive you passed out so drink a lot of Gatorade and carry around cheese because cheese has a lot of salt. They were going to send in a cardiologist but said it was going to take too long so they just basically said it was positive and sent me on my way with no real helpful info just pumped me with saline and sent me home still feeling sick and dizzy.
That's ridiculous! A cardiologist conducted and was present for my tilt table test. He had me try the extra salt and sports drinks at first, but then set up a return appointment where we began to try various medications. Atenolol, Propranolol, Ivabradine, Guanfacine, Clonidine, or Mestinon are very popular for treating POTS. It might take time to find which one works best for you.
@@Dulcimerist I threw up bile and went unconscious and the lady that did it when I came back to was literally laughing and was like hahaha I knew it was going to be positive and I was like yeah I figured and she was like how do you know and I was like I feel like complete crap. Then they rushed me out. I felt immensely sick during and after but I almost want to re do that horrible experience because where I got it done didn’t help me or explain anything to me they just said it was definitely positive, told me to eat more salt and sent me on my way.
I have Ehlers Danlos and dysautonomia.
Don't stress if you can't post every week that you'd like to! Living with chronic illness by itself is exhausting, but factoring in all the stress of a world that for the most part doesn't get us because unfortunately a lot of folks see the world through the capitalist lense we're taught in school (in the US, from my experience, anyway, not sure about elsewhere). So if we don't 'contribute' to society the way we're expected to, we're lazy or whatever. But thank you for sharing info about your experiences and I'm going to be looking into POTS more because...reasons. I hope you have a good day!
Chronic pain is such a weird thing once you get used to it. I have to go to the chiropractor weekly. If I miss one week I feel like I’ve been hit by a train. At the start of 2020 My insurance made me go to a new chiropractor and I had to wait a week in between my last appointment with my old chiro and my new one. They knew each other and all of my info was transferred over. Most of my scans would be in the red or the black (very bad) but I’m apparently really good at not showing that I’m in pain? I get to my first appointment with my new chiro and exchange the typical “how are you?” “Feeling pretty good today” and he starts adjusting me and stops and says holy shit when was your last adjustment? I say two weeks ago. And he said “well if this is your back on a good day I can’t imagine WHAT it would look like on a bad one!” Every time I go in after a week off he tells me to stop doing backflips (his way of saying take it easy) but jokes on him I’m always taking it easy. And it’s always nice seeing him because he actually takes time to ask questions about my POTs and see how I’m feeling that day POTs wise. And every time I get up from the table he reminds me to get up slowly. A very stark contrast from an ex friend who used to talk down to me and tell me I complain too much or talk to much about medical stuff in general. Long story short she was extremely ableist and wanted to end our friendship because I “wouldn’t be able to keep up with her because of my disability” big yikes 😬
This is so embarrassing I was at the grocery store a few months ago and had a pots episode and fainted and a stranger called 911 and I had to explain to the emts I had POTS and I was fine and I wanted to finish shopping. I now refuse to go to the grocery store alone
Oh God I really hope you don’t get a bill for that! That’s one of my biggest worries with POTs. I need a bracelet or something that says not to call 911. I’m not trying to go into debt!
@@lexbaier6393 No, they only bill you if you go with the EMT to the hospital. Just refuse care/treatment and don't go with them. Businesses are required by their insurance companies to phone an ambulance when someone faints on their property, in order to reduce liability and to not have their insurance revoked. They have to do it.
Yup, at work this happened. I just said I respectfully decline :)
Thanks Izzy for your videos. I have learned so much. We’re trying to figure out what our 15 year old daughter is going through. (She has an appointment in a week.) You’re so helpful and fun to watch at the same time. Good luck at grad school!
I’m so glad my videos could be helpful! Good luck at the appointment ❤️
I love your videos. They make my day, especially when I have such a bad day. Good luck with your first semester of grad school!!!
I'm so glad you like them! And thank you for the good luck wishes. I'm super excited but also very nervous
@@IzzyKDNA You're welcome.
When I notice a different pain instead of the usual it is usually because the noisy one is just worse than the constant, usual spots.
I’ve never related to video so much I’ve had undiagnosed problems for years until they found my pots and now im scheduled to see the geneticist for Eds for hypermobilty but I never get any good info for my chronic pain, horrible fatigue, or any of my many problems.
Is great when they don’t know what you have and start throwing you meds to see if they hit the jackpot
You get a heat wave at the same time? Me too, I always connected the heat wave to a hot flash but it didn’t make sense because I was literally just nauseated or in pain.
the pots thing is so real, like some days ill be walking around with a heartrate in the 180s with no problems and other days itll only be like 100-120 and i feel like theres a racehorse in my chest😭 theres truely no rhyme nor reason to pots
The 2nd one is soooo true sadly. And only chronic pain warriors know why or how that is! It probably don't make sense to those without daily chronic pain!
When I got a MALS diagnosis (randomly from a POTS specialist/diagnostician) after having so many stomach issues and getting like 5 other diagnosis at the same time for various things, I literally was given zero information about any of them and what treatments there were. Didn’t know how serious MALS was until I saw others talking about it online 😅 I thought it was a random throw away diagnosis that didn’t matter 😂💀 but lol no it’s my main stomach dx other than ibs (which is actually my throw away dx)
Izzy, did you have a Tibial Tubercle Transfer on your knee? I had this done in 1995. Before the surgery, my knee would sublux frequently and the pain was awful.
Gastroparesis plan for me: there are these meds, but they are very risky and probably don't help, OH and the meds can cause an uncurable muscle movement disorder.
Well that's it, that's the plan...l
You might want to dig up the studies at Mayo Clinic for the emerging repurposed treatment option Mestinon (Pyridostigmine) for treating gastroparesis and other digestive motility issues. Mestinon doesn't have the nasty side effects of the dopamine blockers that you're describing.
I love your videos! Thanks for toughing it out for us.
One bonus of Chronic Pain… your car can be sold as low mileage… VERY low mileage… (my current car has done under 1,300 miles… and it’s 3.5 years old lol).
I hear you about not getting any plan on what do to. You basically have to demand any sort of attention, tests or treatment.
Also yeah POTS is so weird like how do I explain to a doctor I literally cannot stand for longer than two seconds without being uncomfortable but I can walk okay. Although any exercise also makes me really tired. Is that a POTS thing too?
Yes, exercise intolerance often accompanies POTS. Researchers are even running trials with the POTS medication Mestinon to treat exercise intolerance and fatigue in patients who have ME/CFS.
It sounds like you're experiencing blood pooling in the legs. Keeping your legs moving helps to keep the blood moving properly. However, as soon as you stand still, it's not moving properly. Perhaps if you explained your situation that way to the doctors, they'd understand better?
@@Dulcimerist This is a good point. I didn't know there was any medication for POTS! I've just been heard drink and have salt as treatment.
@@specialagentA The first line treatment of POTS is to try drinking more fluids, salt, compression calf sleeves, physical therapy to build more leg muscle, and perhaps occasional IV saline fluids. When those aren't effective enough; Atenolol or Propranolol, Guanfacine or Clonidine, Ivabradine, and Mestinon are the top medications for POTS. Some POTS patients respond okay to Florinef or Midodrine, but those simply treat POTS by jacking up the blood pressure by brute force - which isn't generally good for long-term health and can be dangerous for patients who have underlying health conditions like Ehlers Danlos syndrome, Marfan syndrome, Loeys-Dietz syndrome, etc.
If your symptoms aren't being managed adequately enough, advocate for yourself to try the various types of medications until you find which one works for your body. Every patient is different, so it might take time and an open minded doctor to find your best treatment option. For me, it's Mestinon during the day and a small dose of Guanfacine at night. (Guanfacine also treats my migraines, insomnia, restless leg syndrome, and anxiety.) Also, Doxazosin has actually helped really well for my POTS, but that medication class on paper looks like it could make POTS worse - like I mentioned, every patient is different. I reacted badly to the two beta blockers I mentioned, but some people do really well on them; and beta blockers are usually what they try first. If you don't do well on the first medication you try, don't give up - one of the other medications I mentioned (or a combination of them) might be much better for you!
@@Dulcimerist Thank you for all this info, hoping to find a doctor I can work with. :D It's a challenge living in the middle of nowhere and just seeing different doctors every time.
@@specialagentA I can relate to the living in the middle of nowhere. It might be helpful to print out research articles on treating POTS, to give the doctor more confidence on how to treat it. I was able to get on Mestinon by finding a great research article by Dr. Satish Raj of Vanderbilt Autonomic Dysfunction Center - one of the leading researchers and research facilities on POTS and dysautonomia. My doctor had actually attended seminars by Dr. Raj, and was already a fan of his work.
I was wondering what your opinion is about if POTS and OH can occur at the same time. A few months ago I went to the doctor because I thought I have POTS. I did a lot of tests at home and every time I stood up, my heart rate would go from like 55 to 140. Luckily my doctor took is seriously and said I should go to the neurologist. I did a test at the hospital (not the tilt table test, because the neurologist said it was better if I had to stand up myself..?) and when I got the results the neurologist said: 'you don't have POTS but OH, because your blood pressure dropped to 60/40 when you stood up. And one of the criteria for POTS is that your blood pressure stays the same.' But I was so confused, because during the test, my heart rate increased by 43. So that means I have criteria related to POTS, but obviously OH too. I read on the internet that some doctors say that POTS and OH can occur at one person, and some say it can't. Anyway, I was just curious what you think about this... Also: the neurologist wasn't very understanding unfortunately.. She just sent me away with the advice: drink lots of water, eat lots of salt and buy compression socks... I've been trying that for four months now, but there isn't any improvement. It's only getting worse tbh. And so I've been reading on the internet about medication that stimulates the constriction of the blood vessels and that it can help with OH. But the neurologist didn't mention any medication. She only said that I can't take medication that lowers your heart rate (often given for POTS) because the increase in my heart rate prevents me from passing out due to the extremely low blood pressure.. Do you have any experience with the medication I mentioned earlier (for the constriction of blood vessels)? Anyway, sorry for this long story hahaha
My body is a bit similar, which is why beta blockers (lower heart rate) actually made my dysautonomia worse. I do carry a POTS diagnosis, but also a neurally mediated hypotension (similar to OH) diagnosis.
I've been on some of the vasocontricting medications, which are often ADHD types of medications like Adderall and Dexedrine CR. I reacted horribly to Adderall. The best one for me has been Amantadine, which has some of the same properties of those amphetamines, but without the side effects and without being a controlled substance. Midodrine is another vasoconstrictor, but I haven't tried it since it could aggravate my Raynaud's.
I've done best with the vagus nerve stimulating medication Mestinon to manage my dysautonomia and POTS symptoms. It also treats my digestive motility issues.
Watching this while trying to ignore a flare up that just started
Had a "doctor" that I was referred to, by the way, look at my previous mri (which clearly showed the problem), look at a recent mri with the radiologist's notes (which clearly stated "DEGENERATIVE") and had the absolute f***ing gall to tell me he didn't see anything wrong with me and that the radiologist didn't know what they were talking about.
😵WTF?!
YOU CAN HEAL YOURSELF! THE MIND IS THE BEST HEALER IN THE WORLD!
I very much relate to the not noticing when a symptom has gone away. Normally it's not until it comes back and I'll think, oh that's right, I haven't had that for a couple of days. Either that, or thinking something is wrong because a symptom has gone away haha. When I started on meds, the whole first day I had this weird feeling in my chest and was considering going to hospital cause I didn't know what was going on. I eventually figured out that I wasn't getting heart palpitations and that was so abnormal for me that it felt uncomfortable in my chest.
As far as downplaying my symptoms, it can lead to some funny statements. When I am not looking the best and my coworkers ask "is everything ok?" And I'll reply "oh yeah, it's just my heart, nothing major" or "it's all good, I'm just having trouble breathing". Apparently those statements aren't as reassuring as I intended them to be.
Ditto! So many similarities!
I know I have to have some type of Chronic Illness..but no one's given me a diagnosis..I'm constantly in pain (bowl issues..) heat issues etc the list could go on..I need a super smart doctor lol..