Tiny Dancer

Dear Kate, I haven't been on the site in ages, and came back today to investigate some new symptoms of mine. I saw the RCVS topic, took a peek and want to let you know that last year I did post here about my own diagnosed subarachnoid in Feb. 2013, that was caused by Reversible Cerebral Vasoconstriction Syndrome (RCVS), a rare occurrence as cause of these usually non-aneurysm bleeds. I cannot find the thread here on BTG, but in the meantime here is a Wik link; I have tons of research, so let me know if you are still interested now, or if your condition has improved so much, perhaps it is not necessary. I am a journalist, so was obsessed with the data. Best to you. Tiny Dancer http://en.wikipedia.org/wiki/Reversible_cerebral_vasoconstriction_syndrome

Hello All, I am nine-months post NASAH. Three things that are helpful these days for recovery: 1) Mindfulness Meditation (I like the Kabat-Zinn cds, particularly the one for pain management); 2) Feldenkrais (a movement-for-health system, group class and hands-on treatment); 3) Session with a neuro-psychiatrist. Don't settle for just any therapist or psychiatrist: mine is specialized and REALLY understands the physical as well as the psychological I'm enduring. Took a long time to find this gentle and understanding doctor, but worth the wait. Thank you and good luck.

Thank you to all who wrote back. Yes, they say it is reversible, and subsequent mriS have shown the bleed has stopped, no infarcts, no mass, but still "several foci of subcortical flair hyperintensity...stable," whatever that means (I am to see my doctor in 10 days). I am not sure how they know that the vascoconstriction has reversed unless they do another angiogram, which they are reluctant to perform, assessing me clinically and with MRI instead. As you have all said, this is going to be a long-term heal, 'though I push myself to stay physically active. I had a very big and busy morning today and was popping analgesics to keep going, but am now exhausted, slightly nauseous and headachy, which seems to happen alot lately. Piratesbooty, I will be interested to see how things go for you as it is still early stage in recovery; yesterday was my six-month mark. Great that they found your trigger but sorry about results of stopping it suddenly. Are you on anything else for the RCVS or symptoms, indeed, do you have any symptoms like mine? Did your blood pressure spike, did you have headaches?

Have any of you been diagnosed with a NASAH caused by this rare condition known as Reversible Cerebral Vasoconstriction Syndrome (RCVS), sometimes known as Call-Fleming syndrome? That's what the doctors at my hospital here in Canada told me caused the bleed, without aneurism, in early February. The main symptom, which brought me into emergency, was thunderclap headache, first and worst ever, which had occurred four days before. They are still not sure what had triggered the bleed, which was small, they said, although several arteries affected. I am (or was) a very active 60-something female who was in good health before this occurred suddenly. My recovery is not going as well or fast as I had anticipated, based on information they gave me upon release (they said headaches caused by blood reabsorption through system would disappear within three months; also they did not predict the nausea that I have started to experience recently). With the help and love of my husband, grown children, younger sister and a few close friends, I am trying to be patient and positive. This site is an excellent source of data and fulfills a need for a community of folks who understand each other's ups and downs, and I thank you.