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Hiya
I went back to the consultants today and have been referred to the neurologists now as they think that reversible cerebral vasoconstriction syndrome (RCVS) may be what has caused the SAH. Has anyone else experienced this or know more about it? I think it may explain why I was in so much pain when they took me off nimodipine in hospital.
Hope everyone is ok out there
Kate xx

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hi and thanks for the responses.

I haven't seen a neurologist yet but I am pretty sure this syndrome may be the cause of my NASAH and may well have been the cause for many others, it is apparently poorly recognised and the advances in scanning etc are leading to more diagnosis of the syndrome.

It's prevalent more in women and one of the complications can be a SAH.

There are some recent studies out there that are worth reading - if you google RCVasoconstriction you get lots of links to patient studies but the profile of the syndrome fits exactly with the terrible headaches I had for the 2 weeks in hospital ( I put them down to vasospasms linked to the bleed but now it seems it was probably RCVS).

I will hopefully have more answers and info soon but it would be interesting to see if there are any other members who had this who were diagnosed with NASAH and have never found the cause.

interestingly the misdiagnosis of migraine in the early stages can aggravate the condition and make the headaches worse, and the bleed can then happen whilst the patient is being treated for severe migraine rather than vasoconstriction. There's some interesting stuff on line but it is still relatively unheard of.

May be this will help answer some questions for those who have never found out why they had a SAH or stroke.

Love Kate xxx

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  • 7 months later...

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

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Hi to everyone,

It never ceases to amaze me how many twists and turns there are to a SAH.  It can only be a good thing that we are made aware of these things so we can help others.  Well done to those who found out so much because, as Manuel in Fawlty Towers used to say 'I knowa nothing.'

Good luck to all,

Macca

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I had a thunderclap headache during the SAH.  I was also taking Aspirin which was also mentioned to exacerbate the condition.  I had off and on migraine auras without headache a few times.  The first was when I was 19 and when I went to the ER from losing my left visual field, the doctors thought that it was from starting birth control pills.  I stopped taking them, got pregnant, and yet still had these times when I lost my left visual field twice more over a 20 year period.  Never went back to the doctors about it because they didn't do anything the first time and acted like it was no big deal.  Now after my SAH, I feel like it was a big deal that the doctors didn't understand at the time and neither did I.

 

Sounds like from the review, all you can do about RCVS (just like NASAH) is don't take SSRIs and no Aspirin.  OK, I won't.  Other than that, not enough data.  Sounds just like we're in the same boat as before...

 

Doctor says:  'it's too bad and there's nothing we can do for you'.  Blah, blah, blah.

 

~Kris

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I used to get real bad headaches when younger and I used to say to my Hubby

"If I do not wake up tomorrow I Love you both" and he would rub my neck and hold  me and this

happened a lot to me. I assumed it was a stress headache.  Did anyone else get bad heads?

I mean before the main Anni ?

 

Also did anyone have an eye test and optician noticed a wonky disc.  I did,  but my Doc did not

know what optician meant !!

 

Good luck All ~ still trying to find out cause of Anni xxx

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  • 2 weeks later...

Interesting. I have never been sick and dont get headaches much at all. Then whammo at the dentist office. Stiff neck. distored vision and the worst headache of my life. Burning in the back of my head. 2 weeks in the hospital and 5 CT scans and they could not find where the bleed happened. In the fluid surrounding the brain. Non-Aneurysm SAH. I dont take aspirin but had quit my BP pills 3 weeks before. My BP was over the top.

 

Could this be this??

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Hi April,

 

Could be a build up to what happened to us ??

 

I just wonder if any of us might know why it happened to us.  Like me and hubby worked together and we had a stressful couple of years and more !!

 

I wish they could find a common denominator in Anni's/Strokes/Bleeds.  

Just wonder a lot "Why Us"

 

Keep Well

WinB143 xx

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