Edit: just remembered, sleeping with a cervical collar has helped me stay drained!! Mine is similar to this: amzn.to/3Mg9bt6 and is 2" but I may increase to 3". I wear it loose so it can actually go over my head without un-velcro-ing... otherwise I'm too claustrophobic! I wake up less stuffed. Wish I'd said it in the video, but I think that full throat feeling might also be an IIH symptom; sensation of physical pushing from the high pressure? I dunno. The neck/head pain tend to happen together and it's just all on fire in pain. Any other guesses, insights, thoughts on this whole thing are more than welcome!
Hope after head injury (on youtube) just put up a video yesterday where she had a functional neurologist who specializes in migraines discussing helpful info. You might find some relatable information on that. I was going somewhere with that, but I totally lost the thought. Ill still post this comment so you can check it out if you want.
I definitely get the throat closing in sensation often with IIH and csf leak, it's one of my least favorite symptoms! I also have bilateral trigeminal neuralgia, occipital neuralgia, and glossopharyngeal neuralgia (they all suck). if you haven't checked out all of the info on the IIH and CSF Leak reddit forums, I highly recommend you do! it's helped me so much.
Prolotherapy helped so much with my CCI as well as a well trained Ed’s PT. You can get a DMX scan that measures your neck at all angles in real time and with that they check vagus nerve size and the size of the major blood vessels feeding the brain. Check out dr hauler at caring medical and the tuber Rachel Elizabeth who has similar issues does a video all about it. They realign you and try to normalize your neck vitals and specialize in eds and CCI
Have you had a CTV of your head and neck? Sounds like your IJV(s) may be compressed. Similar to eagle syndrome but compressed by C1/2 and/or S styloid. I had surgery for this after my IIH brain stents.
Oh my gosh! I started doing this too a couple months ago and it has helped SO MUCH. Definitely hasn't made my migraines go away by any means, but there is DEFINITELY an improvement. There have even been times where I could tell a nasty migraine attack was coming on and, just from that _small_ little push during the adjustent, I could feel my head start to throb as blood was rushing there, and that SAME NIGHT, I felt better. The next day, I felt okay. I wasn't down with a migraine for four days. I was okay. And doing this every week/every two weeks has improved my overall health. I'm so grateful I found it.
I just want you to know how much I appreciate your videos, Jen. When you were having "word reaches" I could really relate. It's the kind of thing that happens and people think I'm just being ditzy. I send your videos as explanations. "Here, watch this." Trying to explain it is sometimes just too much. To quote a friend of mine, "It reeks of effort!" So THANK YOU! 🙂
This comment almost got me crying! It means so much that you're becoming more understood. I know how much that means 😭 I'm so humbled & honored that I had anything to do with it
I love watching your videos because I feel less alone in my IIH journey. You talk about so many of the things I am experiencing, and just your process of constantly searching for the answer feels so familiar. Thank you for sharing your journey.
Thanks for this video. I'm so glad that you're getting somewhere with this and getting proper care now. I wish I had known about this stuff and was able to get this type of help you are back when things started with me. Unfortunately in my case I lost my job, went through my lifesavings, lost my home and everything trying to get proper care being gaslit alng the way until there's no way I can afford these things.
Especially when it comes to neck issues, I would encourage everyone to do a lot of research into any chiropractor that you want to visit! Many are super good and knowledgeable, but there have been cases of chiropractors killing people by breaking their neck or injuring arteries. So be careful and informed!
While it is absolutely important to do your research before finding the right chiropractor for you and your issues, I can't help but wonder how many people allopathic Drs have killed with their therapies?
Omg you’re literally describing the exact same thing I’ve been having!! (not to mention I have literally ALL of the same health issues you’re having). Some nights it’s hard to sleep (especially if I use my curved memory foam pillow) because sometimes it feels like my whole c-spine is pushing into the back of my throat and esophagus and mildly choking me. It feels like someone is trying to poke me in the back of my throat and activate my gag reflex. I’ve also had random moments where the back of my mouth goes numb, so weird! I’ll definitely be looking into a NUCCA provider and see what I find 👍🏻. I look forward to seeing the other videos, Jen!
I see myself in you and it makes me laugh and cry while I see the same smile even though... well you know. Some days I wonder why I am happy or smile and make people laugh and insulate the world from my world, I am sure it is confusing to anyone who knows me but ... I don't care. It is good to see you able to communicate so effectively on I assume autopilot ish and I would say you are on the right track if you are getting such dramatic changes, I look forward to knowing how your treatments go and frequency, changes as time goes and see your progress. Thank you for sharing.
Perhaps already discussed but putting here for posterity. Hyper mobility is tied to neurodivergence. Adhd, autism and more. Which all look different in women. As is irritable bowel, other digestive stuff, Rashes, allergic reactions, migraines, and hormones affect it all. Finally all the things are coming together for me, as I always suspected they would. “Only” took 57 years! I SO appreciate your videos.
@@zaeblet_ How tall are you? Taller than average? Is your arm length when arms are stretched out longer from fingertip to fingertip than your height? Can you stretch your thumb across your palm, (on it's own), and close your fingers over your thumb and look to see if the end of your thumb sticks out, If so, you may have Marfan's, it is a weakening of the connective tissue and causes loose joints...and many other things. EDS is similar, not sure what classifies it though.
I have Marfan's and survived a dissected aorta when I was 45, most do not survive and life isn't the same as it was. There are NO warning signs other than the measurements they can do with an echo-cardiogram and CT check ups, (which I wasn't doing at the time). So I can't advocate enough that you find a genetic specialist that can definitively check if you suspect you have anything in the Marfan's/EDS category. Coincidentally, I am also celiac and anemic, but I don't think that is necessarily part of the Marfan's. If I had to guess those are more from GI issues that were ignored by my doc's until it caused things like the celieac, anemia and several other auto-immune issues. Dr. Berg has great videos on GI issues and a TON of other health issues. His info has changed my life, and many others for the better.
@@zaeblet_ One more thing, the last time I was at a genetics office it seemed they suggested there are more hyper-mobility disorders that have been classified than just the Marfan's and EDS of the old days. Often those with these disorders do have other things that kind of go along with it. Marfan's runs in my family and a few members have ADHD, one had a developemental disorder, another has bipolar, one got Alzheimer's, another dementia, I was diagnosed with POTs, but I also have a CSF leak so the POTs may have been a misdiagnosis. Anyway, I just mean that issues that do not seem related sort of are sometimes. So if you have hyperflexibility and hit some of the other things on the check list...if it was me, I'd make an appointment with the top geneticist in the area. (US News has a list of the top hospitals in the nation/and states). If you can do that thumb test, as odd as it is, you should definitely be evaluated for Marfan's or EDS since they come with a potential life threatening risk that if known about, can be caught in time. It is one of the few times I would use a doctor at this point...for evaluation and testing...but I turn to Dr. Berg to be healthy.
@@zaeblet_ no problem, I am more than happy to help, if I can in any way. The thumb test is a big flag for Marfan's, most people can't do that. And assume you know but just in case, for the anemia take iron. The iron will help pull the oxygen in your blood and bring the blood counts back into range and prevent damage even though it won't actually "fix" the anemia. And don't feel bad if you're not in a position to see a doctor at the moment. I've seen the very top doctors in the United States literally, at the Mayo Clinic in Minnesota. They have not been helpful, maybe if I ever need surgery on the dissection again. But as far as actually diagnosing issues, they have not been successful at all. It still took work with the info that Dr Berg offered on TH-cam. But it's amazing the progress from just some herbs and changing my diet made. Dr Berg truly understands how the body works and he's more than willing to explain it in a way that is easy to understand. From there you'll just have to do trial and error and tweak the methods as you go. My tip on that, get a notebook that's dedicated to your health Journey. Log what you try when you tried it and how it affected things and how you felt. When it comes down to it I don't think the medical field is much good anymore but it will definitely help if you can find a doctor willing to join you on the journey to getting healthy. Best of luck to you. Leave a message if you have any other questions. If I don't get back to it in a couple days leave another one sometimes I miss them. And try to see a doc about genetic testing, if you have it you'll want to monitor the size of the aorta every few years so you don't have an emergency dissection like I did. That was no fun!
@@zaeblet_ Sleepless night here and in getting ready for an upcoming appointment I watched a video that mentions things that you also mentioned. Thought you might be interested so here is the link th-cam.com/video/El5-Ox6NJB0/w-d-xo.html It is a talk about CFS Leaks and connective tissue disorders by Dr. Ian Carroll Lots of other good info in there too, including citing studies about just how often this is missed in diagnosis...even when they are looking for it.
Jen Jessica Kellgren-Fozard is an English influencer can has connective tissues issues. She has frequent migraines. The migraines have been so bad she is blind in one eye and deaf. I personally have arthritis at the base of my skull. I have migraines when muscles tense up in pain an restrict blood flow. The body was to be treated as a whole and not separate issues. There is so much connections between all the systems. For me I ha severe eating issues after a major car accident. Come to find out the pain was due to increase in allergies. My gut health suffered. Keep in mind that new research shows that there is brain cells in the gut. Think this issue added to the results of me developing MS
I see an atlas orthogonal chiropractor. They adjust the same vertebrae in a similarly gentle manner (no cracking from my chiro at least). It has helped with pain and symptoms pretty significantly. Thought I’d mention in case someone out there can find an atlas chiro but not a NUCCA in their area.
Both the physical therapist I had for years do to migraines and the chiropractor I currently, say my body has to unwind. I good chiropractor can make a world of difference
I wish there were more information in this video. I live in EU and we don't have chiropractors here So I am gonna have to go with "find someone to fix your neck". I will try but the shared knowledge of the physio people is very dependent on the place if I understand it correctly.
The vagus nerve also plays a huge role in anxiety and mental health. Possibly connected to why so many people get gaslighted to go to psych instead of getting medical help.
My heart goes out to all of you that have these issues. I have been miserable for years with a variety of different symptoms. I tried diet, supplements, fasting. I couldn’t get relief…unless I was laying down. Come to find out I have cervical instability, vagus nerve and jugular vein compression. It certainly explains what I’ve been going through. Just had my first treatment a few weeks ago. Still no improvement yet. My next treatment is in April. I’m hopeful I will begin to get relief. Good luck to all
Im finding myself in this situation! I can't get relief lately without laying down 😔. My doctor is talking about surgery because my pressure is now so high & I didn't want it to come to this but now I'm about all out of fight!!! I did manage to get a okay nights rest for the 1st time last night with the combination of taking berberine & turmeric! Idk why that worked but it worked wonders for me!!! So thought Id share and I was even able to get a nap in today with that combo. I think maybe because it got down some inflammation or something maybe. I wish you look this condition sucks!
@@tasha9650 Berberine and turmeric are known for reducing inflammation. That might be the answer for you. Look into anti inflammatory diets as well. Maybe you can avoid surgery. Keep us posted
I watched enough of ur vids to figure out we have the same issue. What u describe is word for word how I’d describe my stuff. I’ve been diagnosed with complex migraine syndrom but I know it’s not that
You're on a roll!! I too have a myofacial release therapist; seeing a new PT next week (about my CCI) who understands EDS; My EDS specialist agrees that I have signs of CSF leak and/or high pressure (now to get the new neurologist on board)! I haven't seen my chiropractor in a while...I'll have to figure out who knows about NUCCA but I'm wondering if my MFR therapist might do that. Your description of how you let go of the vertigo is exactly what I try to do every night before sleeping, but as soon as I'm asleep I mess it up. I'll try that neck brace I have in a box tonight and see if I can sleep with it on.
Has anyone looked at an MRI for chiari malformation type 1 for you? I have this and it's linked to my POTS, hypermobility, ADHD, orthostatic intolerance and migraines. Is also responsible for corrupting CSF flow, causing low AND high pressure symptoms. CM1 causes me untold neck and shoulder pain as well has migraines.
My c2 is rotated to the left by 14 degrees … I had to stop NUCCA is 2021 because the alignment did something to my shoulder which felt frozen and uncomfortable pain for months. Vertigo started again recently so I’m trying to get into NUCCA again…only one practioner here and she not available until end of April .😢
Aw im so sorry!! Keep an eye out for one of my next few videos on myofascial counterstrain. The vid is almost ready to film so itll be soon. If I do this therapy instead of nucca now! I hope it helps you! It's part 5 of the 5 part series that I never finished
TLDR: the I in IIH is for idiopathic which is code for doctors have no clue Haven't finished the video yet, am commenting 3 min in, but I just had one of those scans the other week! I had an mri not an xray, but the flexsion and extension for CCI. I asked my neurologist to order it because he kept telling me its just migraine for a year and half (even though he is the one who diagnosed me with IIH based off of palpilaedema at the start of 2021)(Also I didn't ask just based on headache but a bunch of other symptoms including POTS and OH). My test showed I do not have CCI, but whilst I was waiting for my next appointment with the neurologist who for some reason has a wait time of 3 months for existing patients I went and got a second opinion, and so now I have a positive screening test for whipples serology and had a lumbar puncture last week to check for the pcr in my csf to confirm, fingers crossed for the results. Also, the first neurologist never did a lumbar puncture becasue they said "it would just tell us the exact pressure but we already know you have iih because of the optic nerve so theres no need". My opening pressure was 28 cm 🙃. (side note I tried topamax for a month and had bad side effects so he wasnt giving me any treatment for the IIH either, just a bunch of migraine treatments, and my papillaedema was grade 2 when I first saw him and went down to grade 1 six months later on its own, hate to think what my opening pressure would have been had we done the puncture earlier lol) Anyways, my point is that I guess we are learning here that the I in IIH stands for idiopathic which is code for "i dont know what test I should be running even though I'm the doctor so I'm just gonna say it has no cause and not give you the proper treatment you need" 🙃
Ok, looking for some advice. I have IIH and I’m being told it is managed because I have 2 shunts AND a stent. But I still have chronic migraine. What doctor can help diagnose the vertebrae issues? I have had the theory that some of my issues stem from spine problems (40+ LP’s during early days of IIH) but I can’t find the right doctor to look at it and tell me if there’s any merit.
I'm not sure who usually diagnoses CCI but the doctor who measured my misalignment and does these adjustments for me is a board certified NUCCA chiropractor.
This is crazy I have pots and CFS I always have head pressure it makes me out of my mind where I can barely move and I get extreme emotional instability I get weakness in my limbs. And I do the same thing where I turn my head and let the vertigo out. I’ve never heard anyone else say that. That makes me think that I might have the high-pressure as well. But I don’t have neck pain and I don’t have migraines per se that I know of but maybe I am. Where is the first place to start to figure this out? I’ve been diagnosed with pots and CFS
I used to click my neck to relieve my tension headache/pain but now it makes no difference. I feel the pressure build up when I'm sitting/standing, when I'm lying down it doesn't feel as bad. It all just sucks reallu.
The kind of journey you describe is suppose to be the connections a diagnostician should be doing. But I suspect most of those, don't have the breadth of information you acquired so painstakingly over the years. It looks like you are reaching for the roots of your symptoms. If you really get there, this would be an enormous benefit for a lot of people. Maybe you'll get to educate several doctors about the WHY things are manifesting in their patients. And HOW to treat it. Maybe, the first step is to really LISTEN.
Is CFS leak always a pretty good amount of fluid? My right nostril will spontaneously drip clear fluid. I assume allergies. It never gushes, just a good drip down to my lips.
While watching this, I attempted to follow your demonstration and in doing so, made myself drip at almost the exact same time you did. Some additional research I've been doing says this might be lymphatic fluid, not csf, if we have spinal leaks. Not sure though.
Oh wow, we are 2 peas in a pod aren't we? I'm not sure whether it's CSF... I might not even be leaking cranially. My doctor thinks my leak is spinal. Would lymph have a positive glucometer reading? Idk what it is, just know I don't like it in there 😆
@@MommingwithMigraine According to some research, yes, it does, and it might even be as much as we would expect from CSF. But information is limited, so who knows for sure. I first learned of this from a facebook Spinal leak group. I guess spinal leaks often cause lymph fluid due to cranial nerve irritation. Like you, I don't know what it is for sure, but Im pretty sure it has to do with my neck, know it relates to my other symptoms, and I 100% don't like it!
@@qtipextra You are spot the heck ON!! 💜 More to come. My full spine mri is done and my case is going to be reviewed by top specialists at a leak conference in late April to determine next steps 🤞🤞🤞
I really need help I’m so over my migraines no one has been able to help me at all, I have done it all injections, pills you name it. Nothing I am losing hope and it’s neck pain in the areas you have and migraines just awful😢
I’m so sorry you are suffering. Migraines suck. You are not alone, and there is hope. If you don’t already, take your tracking seriously. For most of us eventually tracking starts to yield patterns for triggers that if avoided will help reduce frequency and severity. They vary drastically and are not limited to the dozen or so “common triggers” all the doctors cite. You also might need to look further back than you think, textbook is often less than 24hrs, but I find most of the time for me it’s more like 30-48hrs. No matter how tiny keep track of everything. It might take months, but it is often worth it. For me, staying extremely well hydrated (3-4 qts of water a day), avoiding onions, and avoiding blue light by wearing FL-41 tinted glasses indoors and sunglasses outdoors has been hugely helpful. For my friend none of that helped, and she was getting frequent flier miles at the ER. What finally helped her was getting in touch with a neuro-allergist (yeah I didn’t know that was a thing either) who figured out that anything chicken or cow derived sets her off. So no beef, chicken, eggs, or milk products. She went 3 weeks without a migraine after months of migraines 9 days out of 10.
@@mylifewithmarmalade4624 thank you so much I will continue to try and keep track I do have an app on my phone, but it is hard because my migraines are with me every single day. It is rare that the level of pain goes down or I have no migraines at all. Which I can’t even remember the last time I went without one. I struggle everyday but i try and push through as much but I eventually break down. Again thank you I will continue to keep track of what I can take care.
@@MommingwithMigraine yes the western blot test that the CDC recommends is not accurate. I would highly recommend look into a parasite cleanse. I’m doing a DesBio comprehensive cleanse right now. I’m blown away that I have parasites coming out of me.
You need to be really careful with letting your vertigo out because it can kill you. If you happen to be flying an airplane and you get vertigo it can make you feel like you are in a bank. If you try to correct the bank it just makes the feeling worse which makes you try more to correct. Pilots have literally pulled the wings off their airplane and even if that doesn't happen, because you have lost spatial orientation you get confused and enter what is called a "death spiral" If you get vertigo concentrate on your attitude indicator. That will tell you if your wings are level. But considering your other medical issues, maybe it's a better that you don't fly airplanes at all.
Edit: just remembered, sleeping with a cervical collar has helped me stay drained!! Mine is similar to this: amzn.to/3Mg9bt6 and is 2" but I may increase to 3". I wear it loose so it can actually go over my head without un-velcro-ing... otherwise I'm too claustrophobic! I wake up less stuffed.
Wish I'd said it in the video, but I think that full throat feeling might also be an IIH symptom; sensation of physical pushing from the high pressure? I dunno. The neck/head pain tend to happen together and it's just all on fire in pain. Any other guesses, insights, thoughts on this whole thing are more than welcome!
Thanks for the link to the neck brace!
Hope after head injury (on youtube) just put up a video yesterday where she had a functional neurologist who specializes in migraines discussing helpful info. You might find some relatable information on that. I was going somewhere with that, but I totally lost the thought. Ill still post this comment so you can check it out if you want.
I definitely get the throat closing in sensation often with IIH and csf leak, it's one of my least favorite symptoms! I also have bilateral trigeminal neuralgia, occipital neuralgia, and glossopharyngeal neuralgia (they all suck). if you haven't checked out all of the info on the IIH and CSF Leak reddit forums, I highly recommend you do! it's helped me so much.
Prolotherapy helped so much with my CCI as well as a well trained Ed’s PT. You can get a DMX scan that measures your neck at all angles in real time and with that they check vagus nerve size and the size of the major blood vessels feeding the brain. Check out dr hauler at caring medical and the tuber Rachel Elizabeth who has similar issues does a video all about it. They realign you and try to normalize your neck vitals and specialize in eds and CCI
Have you had a CTV of your head and neck? Sounds like your IJV(s) may be compressed. Similar to eagle syndrome but compressed by C1/2 and/or S styloid. I had surgery for this after my IIH brain stents.
Oh my gosh! I started doing this too a couple months ago and it has helped SO MUCH. Definitely hasn't made my migraines go away by any means, but there is DEFINITELY an improvement. There have even been times where I could tell a nasty migraine attack was coming on and, just from that _small_ little push during the adjustent, I could feel my head start to throb as blood was rushing there, and that SAME NIGHT, I felt better. The next day, I felt okay. I wasn't down with a migraine for four days. I was okay. And doing this every week/every two weeks has improved my overall health. I'm so grateful I found it.
I just want you to know how much I appreciate your videos, Jen. When you were having "word reaches" I could really relate. It's the kind of thing that happens and people think I'm just being ditzy. I send your videos as explanations. "Here, watch this." Trying to explain it is sometimes just too much. To quote a friend of mine, "It reeks of effort!" So THANK YOU! 🙂
This comment almost got me crying! It means so much that you're becoming more understood. I know how much that means 😭 I'm so humbled & honored that I had anything to do with it
I love watching your videos because I feel less alone in my IIH journey. You talk about so many of the things I am experiencing, and just your process of constantly searching for the answer feels so familiar. Thank you for sharing your journey.
Thanks for this video. I'm so glad that you're getting somewhere with this and getting proper care now. I wish I had known about this stuff and was able to get this type of help you are back when things started with me. Unfortunately in my case I lost my job, went through my lifesavings, lost my home and everything trying to get proper care being gaslit alng the way until there's no way I can afford these things.
Especially when it comes to neck issues, I would encourage everyone to do a lot of research into any chiropractor that you want to visit! Many are super good and knowledgeable, but there have been cases of chiropractors killing people by breaking their neck or injuring arteries. So be careful and informed!
I saw one for 18 yrs.
While it is absolutely important to do your research before finding the right chiropractor for you and your issues, I can't help but wonder how many people allopathic Drs have killed with their therapies?
Omg you’re literally describing the exact same thing I’ve been having!! (not to mention I have literally ALL of the same health issues you’re having). Some nights it’s hard to sleep (especially if I use my curved memory foam pillow) because sometimes it feels like my whole c-spine is pushing into the back of my throat and esophagus and mildly choking me. It feels like someone is trying to poke me in the back of my throat and activate my gag reflex. I’ve also had random moments where the back of my mouth goes numb, so weird! I’ll definitely be looking into a NUCCA provider and see what I find 👍🏻. I look forward to seeing the other videos, Jen!
Hey may I ask you are doing now did you try NUCCA?
I see myself in you and it makes me laugh and cry while I see the same smile even though... well you know. Some days I wonder why I am happy or smile and make people laugh and insulate the world from my world, I am sure it is confusing to anyone who knows me but ... I don't care. It is good to see you able to communicate so effectively on I assume autopilot ish and I would say you are on the right track if you are getting such dramatic changes, I look forward to knowing how your treatments go and frequency, changes as time goes and see your progress. Thank you for sharing.
Perhaps already discussed but putting here for posterity. Hyper mobility is tied to neurodivergence. Adhd, autism and more. Which all look different in women. As is irritable bowel, other digestive stuff, Rashes, allergic reactions, migraines, and hormones affect it all. Finally all the things are coming together for me, as I always suspected they would. “Only” took 57 years! I SO appreciate your videos.
@@zaeblet_ How tall are you? Taller than average? Is your arm length when arms are stretched out longer from fingertip to fingertip than your height? Can you stretch your thumb across your palm, (on it's own), and close your fingers over your thumb and look to see if the end of your thumb sticks out, If so, you may have Marfan's, it is a weakening of the connective tissue and causes loose joints...and many other things. EDS is similar, not sure what classifies it though.
I have Marfan's and survived a dissected aorta when I was 45, most do not survive and life isn't the same as it was. There are NO warning signs other than the measurements they can do with an echo-cardiogram and CT check ups, (which I wasn't doing at the time). So I can't advocate enough that you find a genetic specialist that can definitively check if you suspect you have anything in the Marfan's/EDS category.
Coincidentally, I am also celiac and anemic, but I don't think that is necessarily part of the Marfan's. If I had to guess those are more from GI issues that were ignored by my doc's until it caused things like the celieac, anemia and several other auto-immune issues. Dr. Berg has great videos on GI issues and a TON of other health issues. His info has changed my life, and many others for the better.
@@zaeblet_ One more thing, the last time I was at a genetics office it seemed they suggested there are more hyper-mobility disorders that have been classified than just the Marfan's and EDS of the old days.
Often those with these disorders do have other things that kind of go along with it. Marfan's runs in my family and a few members have ADHD, one had a developemental disorder, another has bipolar, one got Alzheimer's, another dementia, I was diagnosed with POTs, but I also have a CSF leak so the POTs may have been a misdiagnosis. Anyway, I just mean that issues that do not seem related sort of are sometimes. So if you have hyperflexibility and hit some of the other things on the check list...if it was me, I'd make an appointment with the top geneticist in the area. (US News has a list of the top hospitals in the nation/and states). If you can do that thumb test, as odd as it is, you should definitely be evaluated for Marfan's or EDS since they come with a potential life threatening risk that if known about, can be caught in time.
It is one of the few times I would use a doctor at this point...for evaluation and testing...but I turn to Dr. Berg to be healthy.
@@zaeblet_ no problem, I am more than happy to help, if I can in any way. The thumb test is a big flag for Marfan's, most people can't do that. And assume you know but just in case, for the anemia take iron. The iron will help pull the oxygen in your blood and bring the blood counts back into range and prevent damage even though it won't actually "fix" the anemia.
And don't feel bad if you're not in a position to see a doctor at the moment. I've seen the very top doctors in the United States literally, at the Mayo Clinic in Minnesota. They have not been helpful, maybe if I ever need surgery on the dissection again. But as far as actually diagnosing issues, they have not been successful at all.
It still took work with the info that Dr Berg offered on TH-cam. But it's amazing the progress from just some herbs and changing my diet made. Dr Berg truly understands how the body works and he's more than willing to explain it in a way that is easy to understand. From there you'll just have to do trial and error and tweak the methods as you go. My tip on that, get a notebook that's dedicated to your health Journey. Log what you try when you tried it and how it affected things and how you felt. When it comes down to it I don't think the medical field is much good anymore but it will definitely help if you can find a doctor willing to join you on the journey to getting healthy. Best of luck to you. Leave a message if you have any other questions. If I don't get back to it in a couple days leave another one sometimes I miss them. And try to see a doc about genetic testing, if you have it you'll want to monitor the size of the aorta every few years so you don't have an emergency dissection like I did. That was no fun!
@@zaeblet_ Sleepless night here and in getting ready for an upcoming appointment I watched a video that mentions things that you also mentioned. Thought you might be interested so here is the link
th-cam.com/video/El5-Ox6NJB0/w-d-xo.html
It is a talk about CFS Leaks and connective tissue disorders by Dr. Ian Carroll Lots of other good info in there too, including citing studies about just how often this is missed in diagnosis...even when they are looking for it.
Jen, thank you SO MUCH for all the extremely precious infos you share on your channel! 🙏🏻🙏🏻🙏🏻 I'm so happy to have come across it today! ❤
Jen Jessica Kellgren-Fozard is an English influencer can has connective tissues issues. She has frequent migraines. The migraines have been so bad she is blind in one eye and deaf. I personally have arthritis at the base of my skull. I have migraines when muscles tense up in pain an restrict blood flow. The body was to be treated as a whole and not separate issues. There is so much connections between all the systems. For me I ha severe eating issues after a major car accident. Come to find out the pain was due to increase in allergies. My gut health suffered. Keep in mind that new research shows that there is brain cells in the gut. Think this issue added to the results of me developing MS
You should try NUCCA but if there is someone that does atlas orthogonal you can see I found them to be better.
I have been gettint this treatment for the past 20 years and it is a blessing. I love my NUCCA chiro.
It is a life changer! Did you see my follow up video for what I do now instead?
I see an atlas orthogonal chiropractor. They adjust the same vertebrae in a similarly gentle manner (no cracking from my chiro at least). It has helped with pain and symptoms pretty significantly. Thought I’d mention in case someone out there can find an atlas chiro but not a NUCCA in their area.
PS I also suspect CCI as does my doctor (waiting for imaging to get it diagnosed)
AO is better then NUCCA I did them both.
I get AO too. @@wesporter2176
Both the physical therapist I had for years do to migraines and the chiropractor I currently, say my body has to unwind. I good chiropractor can make a world of difference
Great information Jen! 😊😊
Thank you for sharing your journey.
I wish there were more information in this video. I live in EU and we don't have chiropractors here So I am gonna have to go with "find someone to fix your neck". I will try but the shared knowledge of the physio people is very dependent on the place if I understand it correctly.
"Hold on to your seatbelts, friends!". 😆
The vagus nerve also plays a huge role in anxiety and mental health. Possibly connected to why so many people get gaslighted to go to psych instead of getting medical help.
My heart goes out to all of you that have these issues. I have been miserable for years with a variety of different symptoms. I tried diet, supplements, fasting. I couldn’t get relief…unless I was laying down. Come to find out I have cervical instability, vagus nerve and jugular vein compression. It certainly explains what I’ve been going through. Just had my first treatment a few weeks ago. Still no improvement yet. My next treatment is in April. I’m hopeful I will begin to get relief. Good luck to all
Did you have surgery?
@@wildwhispers001 prolotherapy
Im finding myself in this situation! I can't get relief lately without laying down 😔. My doctor is talking about surgery because my pressure is now so high & I didn't want it to come to this but now I'm about all out of fight!!! I did manage to get a okay nights rest for the 1st time last night with the combination of taking berberine & turmeric! Idk why that worked but it worked wonders for me!!! So thought Id share and I was even able to get a nap in today with that combo. I think maybe because it got down some inflammation or something maybe. I wish you look this condition sucks!
@@tasha9650 Berberine and turmeric are known for reducing inflammation. That might be the answer for you. Look into anti inflammatory diets as well. Maybe you can avoid surgery. Keep us posted
Hey! Wishing you lots of healing on your way.
Do you mind sharing where you’re getting the neck treatment at?
I watched enough of ur vids to figure out we have the same issue. What u describe is word for word how I’d describe my stuff. I’ve been diagnosed with complex migraine syndrom but I know it’s not that
I'm bummed to hear you're going through this too 😔 keep me posted on your journey & lmk if you figure out things that help with symptoms!
You're on a roll!! I too have a myofacial release therapist; seeing a new PT next week (about my CCI) who understands EDS; My EDS specialist agrees that I have signs of CSF leak and/or high pressure (now to get the new neurologist on board)! I haven't seen my chiropractor in a while...I'll have to figure out who knows about NUCCA but I'm wondering if my MFR therapist might do that. Your description of how you let go of the vertigo is exactly what I try to do every night before sleeping, but as soon as I'm asleep I mess it up. I'll try that neck brace I have in a box tonight and see if I can sleep with it on.
These chiris are bunk. Go to Gonstead
Wishing you the best ❤
Has anyone looked at an MRI for chiari malformation type 1 for you? I have this and it's linked to my POTS, hypermobility, ADHD, orthostatic intolerance and migraines. Is also responsible for corrupting CSF flow, causing low AND high pressure symptoms. CM1 causes me untold neck and shoulder pain as well has migraines.
My c2 is rotated to the left by 14 degrees … I had to stop NUCCA is 2021 because the alignment did something to my shoulder which felt frozen and uncomfortable pain for months. Vertigo started again recently so I’m trying to get into NUCCA again…only one practioner here and she not available until end of April .😢
Aw im so sorry!! Keep an eye out for one of my next few videos on myofascial counterstrain. The vid is almost ready to film so itll be soon. If I do this therapy instead of nucca now! I hope it helps you! It's part 5 of the 5 part series that I never finished
@@MommingwithMigraine where you able to get your vertabraes aligned with myofacial? Also looking into osteopathy
TLDR: the I in IIH is for idiopathic which is code for doctors have no clue
Haven't finished the video yet, am commenting 3 min in, but I just had one of those scans the other week! I had an mri not an xray, but the flexsion and extension for CCI. I asked my neurologist to order it because he kept telling me its just migraine for a year and half (even though he is the one who diagnosed me with IIH based off of palpilaedema at the start of 2021)(Also I didn't ask just based on headache but a bunch of other symptoms including POTS and OH). My test showed I do not have CCI, but whilst I was waiting for my next appointment with the neurologist who for some reason has a wait time of 3 months for existing patients I went and got a second opinion, and so now I have a positive screening test for whipples serology and had a lumbar puncture last week to check for the pcr in my csf to confirm, fingers crossed for the results. Also, the first neurologist never did a lumbar puncture becasue they said "it would just tell us the exact pressure but we already know you have iih because of the optic nerve so theres no need". My opening pressure was 28 cm 🙃. (side note I tried topamax for a month and had bad side effects so he wasnt giving me any treatment for the IIH either, just a bunch of migraine treatments, and my papillaedema was grade 2 when I first saw him and went down to grade 1 six months later on its own, hate to think what my opening pressure would have been had we done the puncture earlier lol)
Anyways, my point is that I guess we are learning here that the I in IIH stands for idiopathic which is code for "i dont know what test I should be running even though I'm the doctor so I'm just gonna say it has no cause and not give you the proper treatment you need" 🙃
Have you tried PRP or Stem cells injection for ligament laxity?
Ok, looking for some advice.
I have IIH and I’m being told it is managed because I have 2 shunts AND a stent. But I still have chronic migraine. What doctor can help diagnose the vertebrae issues? I have had the theory that some of my issues stem from spine problems (40+ LP’s during early days of IIH) but I can’t find the right doctor to look at it and tell me if there’s any merit.
I'm not sure who usually diagnoses CCI but the doctor who measured my misalignment and does these adjustments for me is a board certified NUCCA chiropractor.
This is crazy I have pots and CFS I always have head pressure it makes me out of my mind where I can barely move and I get extreme emotional instability I get weakness in my limbs. And I do the same thing where I turn my head and let the vertigo out. I’ve never heard anyone else say that. That makes me think that I might have the high-pressure as well. But I don’t have neck pain and I don’t have migraines per se that I know of but maybe I am. Where is the first place to start to figure this out? I’ve been diagnosed with pots and CFS
😮boy I sure would like to know
I used to click my neck to relieve my tension headache/pain but now it makes no difference. I feel the pressure build up when I'm sitting/standing, when I'm lying down it doesn't feel as bad. It all just sucks reallu.
🥺💜
How are u now
Does your C2 still feel like it's to the right or does it feel like the alignment was actually corrected?
The kind of journey you describe is suppose to be the connections a diagnostician should be doing. But I suspect most of those, don't have the breadth of information you acquired so painstakingly over the years. It looks like you are reaching for the roots of your symptoms. If you really get there, this would be an enormous benefit for a lot of people.
Maybe you'll get to educate several doctors about the WHY things are manifesting in their patients. And HOW to treat it.
Maybe, the first step is to really LISTEN.
Is CFS leak always a pretty good amount of fluid? My right nostril will spontaneously drip clear fluid. I assume allergies. It never gushes, just a good drip down to my lips.
Same. Ive had an mri come back clear. I also have tinnitus, tmj, visual snow, headaches, etc
love it thank you ♥
While watching this, I attempted to follow your demonstration and in doing so, made myself drip at almost the exact same time you did. Some additional research I've been doing says this might be lymphatic fluid, not csf, if we have spinal leaks. Not sure though.
Oh wow, we are 2 peas in a pod aren't we? I'm not sure whether it's CSF... I might not even be leaking cranially. My doctor thinks my leak is spinal. Would lymph have a positive glucometer reading? Idk what it is, just know I don't like it in there 😆
@@MommingwithMigraine According to some research, yes, it does, and it might even be as much as we would expect from CSF. But information is limited, so who knows for sure. I first learned of this from a facebook Spinal leak group. I guess spinal leaks often cause lymph fluid due to cranial nerve irritation. Like you, I don't know what it is for sure, but Im pretty sure it has to do with my neck, know it relates to my other symptoms, and I 100% don't like it!
@@qtipextra You are spot the heck ON!! 💜 More to come. My full spine mri is done and my case is going to be reviewed by top specialists at a leak conference in late April to determine next steps 🤞🤞🤞
5:00 You are so scientific. (That's a compliment *NOT* an insult)
The vertigo thing happens to me too!!! Omg !!
I really need help I’m so over my migraines no one has been able to help me at all, I have done it all injections, pills you name it. Nothing I am losing hope and it’s neck pain in the areas you have and migraines just awful😢
I’m so sorry you are suffering. Migraines suck. You are not alone, and there is hope.
If you don’t already, take your tracking seriously. For most of us eventually tracking starts to yield patterns for triggers that if avoided will help reduce frequency and severity. They vary drastically and are not limited to the dozen or so “common triggers” all the doctors cite. You also might need to look further back than you think, textbook is often less than 24hrs, but I find most of the time for me it’s more like 30-48hrs. No matter how tiny keep track of everything. It might take months, but it is often worth it.
For me, staying extremely well hydrated (3-4 qts of water a day), avoiding onions, and avoiding blue light by wearing FL-41 tinted glasses indoors and sunglasses outdoors has been hugely helpful. For my friend none of that helped, and she was getting frequent flier miles at the ER. What finally helped her was getting in touch with a neuro-allergist (yeah I didn’t know that was a thing either) who figured out that anything chicken or cow derived sets her off. So no beef, chicken, eggs, or milk products. She went 3 weeks without a migraine after months of migraines 9 days out of 10.
@@mylifewithmarmalade4624 thank you so much I will continue to try and keep track I do have an app on my phone, but it is hard because my migraines are with me every single day. It is rare that the level of pain goes down or I have no migraines at all. Which I can’t even remember the last time I went without one. I struggle everyday but i try and push through as much but I eventually break down. Again thank you I will continue to keep track of what I can take care.
Seriously find a NUCCA chiropractor or even better is atlas orthogonal they helped me out so much it's amazing.
Jen, dripping is a symptom of a CSF leak...
Did they ever test you for Lyme Disease or have you ever done a complete parasite cleanse?
Lyme negative (which is not 100% certainty), I haven't ever done a cleanse
@@MommingwithMigraine yes the western blot test that the CDC recommends is not accurate. I would highly recommend look into a parasite cleanse. I’m doing a DesBio comprehensive cleanse right now. I’m blown away that I have parasites coming out of me.
What kind of parasite cleanse are you doing?
I get all this , it's horrendous
That's awful I'm sorry 😞
You need to be really careful with letting your vertigo out because it can kill you. If you happen to be flying an airplane and you get vertigo it can make you feel like you are in a bank. If you try to correct the bank it just makes the feeling worse which makes you try more to correct. Pilots have literally pulled the wings off their airplane and even if that doesn't happen, because you have lost spatial orientation you get confused and enter what is called a "death spiral"
If you get vertigo concentrate on your attitude indicator. That will tell you if your wings are level.
But considering your other medical issues, maybe it's a better that you don't fly airplanes at all.
They’re not called a NUCCA lol. NUCCA is one of the associations they’re just called upper cervical chiropractors.