Barometric Pressure Changes With Intracranial Hypertension and Chiari Malformation (My experience)!

[@desireeprince7710]

Glad I found this video. For more than five years now, I've been diagnosed as having psuedoseizures or having no diagnosis at all except to say that I have "transient altered awareness." My trouble first started when I went to ABQ, NM for a month, and I just could not seem to acclimate to the altitude of 5200 - 5300 ft, though I have had some trouble at sea level since, just not as severe with "seizures" from one day to the next. Last month, they just told me I have CM1. Understanding quite well how pressure works, I was just looking for someone else to say that they've had such trouble at elevation. Perhaps now my doctors will listen to me and stop sending me home from the hospital with the advice to see a mental health professional. Perhaps, too, someone will do something about my headaches. :)

[@HealingWithRachael]

So sorry you are struggling with that! You certainly aren't alone.

[@jennifermadrigal2652]

Just realized... I have spent 4 months trying to figure out why I seem to deteriorate so much faster at work. I've meticulously documented symptoms and behaviors etc and couldn't figure out what the correlation was... there is a 750 ft elevation jump.

[@jpoling7898]

I am a chiari warrior. I am 6 years post decompression. I am experiencing similar episodes & have been made to think I'm crazy. You conformed that I'm not. Thank you so very much!!!

[@HealingWithRachael]

You are definitely not crazy! Sending love, fellow chiari warrior!

[@veronicareynolds372]

How are you doing now?

[@Atleastihavemydog]

You have a good family.

[@MrSemglory]

Helloo

[@mountainmolerat]

Welp, I have IIH (and IJVS and probably a csf leak) and I live at 7,000ft. I never travel, so I have no idea if I'd feel better at a lower elevation. I have no way to move anyway. We had a rare fully-day rainy day here and my cognitive impairment (diminished consciousness) has increased significantly. My pressure-pain is worse, but it waxes and wanes so it's hard to know if it's bc of the thunderstorm or not. (We don't have enough of these days for me to have enough data to know. But, seems likely that it is.)

How high is the place you live yet? I feel the pain in my back. Think about how low the place must be?

[@heatherwells6507]

Thank you SO much for this video! My 14 yr old daughter was dx'd in 2018. She comes out of remission about every 6 months. We live at 1,300 ft, but made the discovery today about the correlation. We have had a crazy storm for days and she started having symptoms today. She had a lumbar puncture only 3 weeks ago. She is very sensory based, so her recovery from each episode can last up to 2 months. Your video is a continued aha! moment for us. Thank you so much for sharing!

[@HealingWithRachael]

Thank you for your kind words, Heather! Wishing you the best with your daughters journey! She isn't alone. :)

[@chantellemyers81]

I was thinking I was crazy associating being at 4000’ vs being in south Louisiana as a reason that I was relapsing! I was in remission for almost 6 years until I traveled (flew) to higher elevations like Denver, and Mt Rainier. Flew 8 times in 3 months twice to Denver (layover to Seattle) in 3 weeks time. And twice to New Hampshire. I am so thankful for this video, thank you!! I do not have Chiari. My IH is Idiopathic.

[@christybaker8876]

Thanks so much for this video! I have EDS and have had surgeries for CCI, cervical instability, and tethered cord and had dealt with fluctuations in head pressure throughout as well as intermittent leaking out my right nostril as far back as 2015, before I was diagnosed with EDS. I would only leak when the pressure was high and it was always triggered by leaning forward and bending over, but I would get relief from it. I couldn’t get any of my doctors to listen to me about any of this, but after being fused C4-C7 last year the pressure got much worse and I’m no longer able to bend over to trigger the leaking. When it gets high I’ll feel it in my right nostril and running down my throat and it burns and tastes metallic. I finally went back to my neurosurgeon and told him I know what’s going on with my body and I need guidance on getting this diagnosed. My PCP already had me on Diamox and it was helping, but we’ve had to steadily increase the dosage and I’m now on 2500 mg a day and it’s not helping as well as it did. I’m finally seeing specialists and the ENT informed me that I had a partially empty sella back in 2019 that wasn’t even noted on the radiology report. It’s so frustrating when things like that happen. I live in central South Carolina and haven’t traveled to any higher elevations, but thunderstorms and rain do affect my head pressure greatly!

[@HealingWithRachael]

Thanks for sharing a bit of your story! Pressure issues are so tricky (especially when fluctuating between high/low pressure). Hopefully more doctors will become aware as time goes on! Totally agree that storms are brutal. Wishing you the best! ❤️️

[@veronicareynolds372]

Would you still feel this pressure when you were upright too?

[@staceylowe3737]

I have Chiari and IIH. High barometric pressure causes me misery. I go for a lumbar puncture this next week. If it helps, a shunt will be placed. Praying for relief! My vision is changing fairly rapidly. Hope we ALL find relief!!

[@HealingWithRachael]

Wishing you all of the best, Stacey!

[@louiseturner4015]

Hi, 😊 I have intracranial hypertension, chiari/cerebellar ectopia and a csf leak, as well as CCI, AAI and cervical kyphosis. I find the barometric pressure changes really badly effect me. Another sufferer on one of the Facebook support groups suggested trying weatherx earplugs and I can't believe how much they help me! They're better at preventing the pain than my diamox/azetazolamide. 😊

[@veronicareynolds372]

I don't know if you have the answer. But how can you get a CSF leak with intracranial hypertension?

[@astorybookfinish5055]

@@veronicareynolds372 the pressure builds up and weakens the dural lining. Once the lining is weak enough fluid escapes through it.

[@veronicareynolds372]

@@astorybookfinish5055 Thank you that makes sense.

[@therealdeal26]

​@@astorybookfinish5055...is it Possible that this pressure change can lead to Seizures?

[@jessicaligon2413]

If you don’t me asking, which Dr. diagnosed you with IIH? My symptoms get severe just going over a bridge lol

[@tarastewart6921]

I wish there were a way to have someone else experience my symptoms for even 30 min. For every nurse, doctor and naysayer to have an hour of in my shoes would be amazing. If they could also have to deal with a medical professional tell them ‘it’s all in your head’ that would change the world! Hope your journey is going well❤️

[@HealingWithRachael]

❤️️❤️️

[@catherinehaney4077]

Yes, I am,very sensitive to barometric pressure change. You are so awesome to share your story.

[@rut8851]

This was so helpful and glad I found you. Coming off 2nd night not sleeping due to pressure in my head and neck that aldo pulsates to chest. My blood pressure shoots up when this happens and my anxiety gets way off. I literally think I am dying. I was diagnosed 1st part of year with seizures, then the next month with chiari malformation 10 cm and sent to surgeon who recommends surgery as my symptoms are getting worse. Btw, it has been raining here in Georgia for 2 days. I figured there was a connection. I can't sleep period!! I've told my neurologist about it she just says it's anxiety. I'm going to mention this again to see if can get other options to control it. Can you elaborate or respond as to what you take or do to ease the symptoms? Thanks.

[@makoto181]

Elizabeth thanks for sharing, hope you're better now! I have had a pressure headache for the last 15+ years but I never figured out what is my disease. Internet searches were only making me feel more helpless so I gave up on looking. But I decided to give it another try today and found your videos. I still don't know what it is because I only have two symptoms: neverending head pressure and tiny crack like sounds in my head that make my head shake a little bit.

[@joshuatmorton5716]

Not officially diagnosed yet because the algorithm just brought me to these intracranial hypertension vids this week, but I'm pretty sure I've had this and it's slowly been progressing my whole life. Always had a terrible time falling asleep and also very sensative to light. More recently, last few years, I've had clogged up ears and tinnitus, which I always attributed to being a jackass and listening to music too loud. But then I saw a video from Caring medical that wove a lot of other symptoms I had together (intermittent anxiety and depression and brain fog) that linked it to brain fluid draining. So I have spent the last few days being hyper conscious to keep my neck and head in proper anatomical alignment. It takes basically all my concentration an strength to do so, but WOW WORTH IT. You know that feeling of having water in your ears? Well it had just become normal to me and I felt that release feeling for the first time in I don't know how long and a day and a half of consciousness posture adjustment. Big part was keeping my lower teeth pressed against my front teeth. I think over the years bad posture has caused my lower jaw tendons and ligaments to stretch out and this compresses my internal jugular and vagus nerve. Crazy. Looking into getting one of those c collar branches.

[@johnbearden4462]

I live it also. But mine is caused by syringomelia at the C6/C7. We just had a fast moving cold front come thru. For me that causes me to shut down...go to sleep. But I am diagnosed both narcolepsy and insomnia. The pain is extreme most times but over 3 decades its become just what I live with. You described it very well...keep fighting and living.

[@katiemccune2978]

Thanks for sharing!! Makes so much sense. I have IIH and had relief after a lumbar puncture and subsequent leak, but yesterday out of the blue I had a high pressure episode with symptoms for the first time in months. Turns out, a low pressure system moved through the area. I plan on keeping a closer eye on the pressure changes so at least I’m not panicking when I feel awful again.

[@teresalane4112]

How do you do with all the hurricanes in the south during the summer? Because of the heat storms and hurricanes we get it kills me with pain and blackouts.

[@inthelymelife4390]

Hey just found your channel, love supporting other chronic illness channels. Looking forward to watching :)

[@amytowery6616]

Changes in barometric pressure absolutely makes all of my chronic illnesses worse. Thanks for all your informative videos! Continuing to send love and prayers to you and your family.

[@TheXanderGrim]

Hydrocephalus as well we have storm issues , Moved from the Foothills of PA to the swamps of SC and feel better

[@monicaz4949]

Thx for sharing. Can relate to the baromatric and altitude changes

[@laurajeanholt1755]

YES!! This was helpful.

[@HealingWithRachael]

I'm so glad to hear it was helpful!

[@jodiemaplesden3270]

With your cci did you find in the beginning walking relieved some of the symptoms xx

[@jamiebaby0707]

I completely agree about storms. I didn’t used to be this bad either. I live in an area where tornados are prevalent. There was a time when I loved this muggy weather. We are in tornado season and I am not currently loving it. It’s strange and validating to hear you talk about the shaking. I do that. The last big storm we had I shook for three days. I was also under a lot of stress, and my Nana had just passed. I told my neurologist it’s almost like I’m shaking because I’m cold except I’m not cold. He said it sounded almost like body rigors? I did have a high opening pressure. Diamox does help with head pressure, which I take daily. And I’m also taking emgality injections for complex migraine. I still suffer everyday. I’m working in a high stress environment and I am sick with grief that I don’t know how much longer I can work. It makes me so sad. I too have had Lyme disease & co. I got treated very aggressively last year, but I got it at least 9 years ago. I too have autonomic dysfunction, and gastroparesis. I have cervical spinal stenosis as well, and I often wonder about thoracic outlet syndrome. It’s so difficult to get all the right answers. I too was dripping burning water from my nose and throat until diamox and emgality injections. It’s all so overwhelming. But I’ve been complaining about the shaking, and when you said that I was like Holly crap because no one ever seems to be able to relate, or understand. Good luck to you girl. May we all find some relief. Dear doctors, please please help us live our lives. ❤️

[@whitney8931]

I'm glad you made the correlation and are now doing better in the lower elevation 😀 I hope you continue to feel better. One day at a time ❤

[@HealingWithRachael]

Thank you so much! ❤️️

[@sarajane5744]

Thank this is very helpful info. I been diagnosed both with IIH & chiari malformation in last 3 years. I last few weeks I could understand why my doctors just to the barometric pressure. You have explained it well thank you again.

[@gailrocafort9112]

Wow, RACHEL ELIZABETH, I have been searching for a reason why I get terrible headaches during storms, I live In Miami and during hurricanes I’m bed ridden , and just miserable during storms. I started watching your video because of your neck problems as I believe I have neck instability, and I believe I also have that ELDS syndrome as I definitely have loose ligaments and tight muscles, now after watching this video I feel like I also have intracranial hypertension. So what it is. You also seemed to have all those problems at one time or another and you are still looking for answers. Please if you had to do things over again, what would you do different. I’ve been dealing with pain for 30 years and some days I feel like ending it. If money was no problem I would get deep tissue massages, acupuncture, lymphatic drainage, chiropractors and Rieki. I have had them all and they all help. My next step is having PROLOTHERAPY at CARING INSTITUTE as soon as I get some extra money. I’m hoping the PROLOTHERAPY will help, I feel like I should get a neck brace but I can’t even ware a necklace because I’m so sensitive. I’m also wandering if you had PROLOTHERAPY first if it would have helped. I don’t know about you, but most DOCTORS don’t know much of anything, and they all have different views, and I’ve been to a lot of them.

[@janisripple754]

Thanks Intelligent young woman . Thanks for sharing 🙏🏻💕

[@louise7131]

Your video's are extremely informative, thank you. Wow that's high elevation. God bless you 💚🙏

[@graceandalethea]

I have IH & EDS and can relate to everything you just said. I have 2 VP Shunts and a stent & I'm on Diamox. :)

[@arunthangarajah5452]

Wishing you a speedy recovery dear !

[@HealingWithRachael]

Thank you so much!

[@drapdon]

Thank you Elizabeth this is really great to show people rather than trying to explain. I have both like yourself, do you find that thunderstorms effect the pressure in your head they really effect me? Keep doing these videos as very helpful. Thinking of you Donna 😘 xxxx

[@HealingWithRachael]

Thank you for your kind message, Donna! I'm so glad they have been helpful for you. Yes, I also find that thunderstorms increase my intracranial hypertension/migraine like symptoms! My family jokes that I'm a human barometer, haha. Wishing you all the best in your journey!

[@drapdon]

Thank you sweet, I have been living with this for 30yrs now but thank you so much for your kindness xx😘