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Well to condense a huge history over 10 years- Dx with EDS by both the “big” docs in the field. Positive MCAS by the Boston big wigs and positive hyper Pots at Mayo- years of headaches, crushing neck pain, fatigue, vision issues, pallor, heart rate issues, hearing problems including perilymphatic fistulas etc. Sure sounded like ICP problems to me. Took Dr D’s book to my doc who was all for it- tried diamox at multiple doses for 65mg- 500mg x2. Every time no matter how low the dose my headache would change and slightly improve but I would be flat on my back with vertigo and fainting routinely. So we tried all the things mentioned, making sure i was hydrated, even using IV therapy, always checking Co2 levels and optimizing. Supplements with Collar, Vita C. Magnesium etc. Still no luck. Fainted so many times I had to have facial reconstruction surgery. Tried multiple different doses of topamax and same issue. Countless MRI’s show empty sella and “tight, tissues etc which led those in the know to think high ICP. I even let them put a bolt in my head and monitor me for 72 hours but my pressures although showing some spikes were essentially normal. Then many felt i was having leaks and after seeing the best two leak people in the country that was ruled out. On and on this went and i finally conceded and had a chiari decompression although the tonsils were not low I was told the CSF was severely restricted. with that I also had a cervical instability surgery. Well it was ll ugly and complicated by multiple problems but the long and short i didnt get better i got worse. Much worse, disabled and unable to work. Headaches and neck pain 10 x worse along with all the other symptoms. Tried all the ICP treatments again no go-tried MAST cell meds to no avail. I dont know anymore. The crazy thing is i will have certain 2 or 3 days maybe every month when i will only have a slight headache and my vision is clear and I can think and get out and no dizziness etc. Its amazing and then i wake up the 2nd or 3rd morning and bam right back into the massive headache, neck pain fatigue etc. I have thrown my hands up at this point and so havent most of my doctors who are great and the ones mentioned on here but we are all frustrated at this point. So my friends any thoughts??
QI’m sorry I wish I had some answers too – I’m in the same boat with POTS and orthostatic intolerance. Just wanted to send a virtual hug and say that your not alone. I hate to see others suffering too but it is a comfort to know people out there have the same issues and understand. I live in Scotland and there is not a single autonomic specialist in this country – no generalists interested in learning either!
May I ask did you have your MRI scans upright or lying flat? I just had a lying MRI and am wondering if this would pick up a small chiari? I only have headaches when I am upright, not lying down, which makes me think my CSF flows fine in the horizontal position.
It is so disappointing that surgery didn’t improve things for you 🙁 I am glad you have access to good doctors. I have read about shunts as another measure for raised ICP, is this something you have looked at?
Best wishes,
B xxx
Oh wow you have really been through the ringer. I am so, so sorry about your suffering. My heart goes out to you!
When you said vertigo, I kind of though ME/CSF. There’s an author named Laura Hillenbrand who wrote an exquisite essay about her journey into CSF hell that discussed vertigo as a primary symptom. Anyway, the reason I mention this is because an emerging treatment for that illness is Low Dose Naltrexone. It prompts your body to produce natural endorphins, which modulate the immune system. I am on this to control the pain and inflammation that comes with EDS. I can’t describe the degree to which that drug has helped me. My inflammation is gone and my pain is gone. This is after a lifetime of terrible pain like you described: neck pain, headaches, and also burning inflammation throughout my joints and muscles.
Hugs.
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