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Reversible Cerebral Vasoconstiction Syndrome

  • By Jesse

    Any out there with this? 40 years of Migraine and then thunderclap headaches. Next came hospitals and stroke, been recovering for 7 months. Still have headache more often then not. I am feeling vey isolated because this syndrome is so rare, there is no one to talk to. Have great Docs at Hopkins but I am very frustrated. Looking for someone to compare notes with and share med ideas. Nothing seems to be working. Thanks for reading.

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  • By Nancy Harris Bonk Moderator

    Hi Jesse,

    Thank you for sharing your story with us. I am so sorry you are having such a difficult time, but found the right place for support and information.

    I don’t have reversible cerebral vasoconstriction syndromes or RCVS but did find some interesting reading about it here; http://www.medscape.com/viewarticle/709403. Hopefully others will be along soon to share their experiences with you.

    I’m sure the doctors at Hopkins are wonderful, but I wonder if you’ve seen a “true” migraine and headache specialist during this time? Neurologists may be fine doctors, but have a hard time begin experts in one area because they treat so many different conditions such as stroke, epilepsy, multiple sclerosis, Parkinson’s’ and others. Migraine/headache experts are just that, experts in one area – migraine and headache – and treat this condition all day, every day. And migraine/headache experts are board certified in headache medicine which is different than being certified in neurology. Here is information on how these doctors are different and how to find one; https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    Nancy

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  • By misyshel

    I am new to posting on blogs and am hoping I am doing it correctly.

    I had never suffered with Migraines until At the age of 38. I developed E clamp sia in my 29 th week of pregnancy. I continued to suffer from them for a number of years. Last year the Migraines stopped completely. Unfortunately, I have now developed Cyclic Vomiting Syndrome.I have recognized that many of the symptoms are the same. The intensity of vomiting is equal to that of a Migraine. It is much more violent than that I have experienced with the flu. I also hear a noise and have a foggy feeling in my head that continues after all symptoms have passed. The only difference is I do not have a headache and the duration is much longer..

    I average about three months between episodes. I vomit an average of 4 times an hour and it last for 6 days. I usually end up at the ER with dehydration. My last episode I developed Acute Kidney Failure.

    I am desperate to find any information. I am interested also in finding out if the Zecuity Patch might help with CVS

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  • By Nancy Harris Bonk Moderator

    Hi misyshel,

    Thank you for your question and being part of the Migraine.com discussion forum. Let’s see what information I can give you that may be helpful.

    I’m sorry you are experiencing such awful bouts of CVS, which is commonly in children, but can occur in adults. Its sounds like they are pretty extensive. Trigger management, along with changes in diet and lifestyle are important parts of a good CVS management plan. There is more information about treatment in this article; https://migraine.com/blog/cyclic-vomiting-syndrome/.

    Zecuity has been taken off the market due to problems with rash and burns, I’m sorry to say. Take a look at this information when you get a chance; https://migraine.com/news/teva-announces-voluntary-suspension-of-marketing-for-zecuity-in-the-u-s/.

    Let me know if this helps,
    Nancy

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