NASAH with RCVS, anyone?

[Tiny Dancer]

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.

[goldfish.girl]

Hi Tiny Dancer,

I haven't heard of that syndrome before. As it's called 'reversible' does that mean there is something they can do to treat it?

It's good that you have lots of support around you while you recover from the bleed. Three months seems to be the standard advice given by hospitals which makes people worry when they are not 'better' within that time frame. There is still a lot of recovery to come after that time & I wish you well with lots of speedy improvements.

Michelle x

[MaryB]

I had a NASAH and never heard of that before. Only told it was rare and not caused by Annies and won's happen again. There was a debate over me going home on channel blockers which I did not end up on until about 2 months ago for headaches.

[piratesbooty]

I have been looking for someplace, somebody, who has also had this.

In April, 2013, I started having the thunderclap headaches. As you know, the most excrutiating pain imaginable. Had about 9 of them--went to ER 9 times in 2 weeks. Then the strokes started, then they found the bleed in my brain. At Johns Hopkins for a week. The SSRI, Lexapro, I was on for many years was the perceived trigger.

My brain has "reversed" and the blood has soaked back in, according to my 6 week check up. I am mostly fine, with only very high functioning processing issues/very short term memory problems. However, my body is dysregulated after they cold turkeyed me from the Lexapro. So my bowels got messed up, I cannot sleep without being medicated, panic issues that I never had before. I am generally exhausted and stressed most of the time. I've been back at work/life since a couple of weeks after it happened.

Eager to hear your story and see how you are doing. I finally just accepted that I had these subconscious expectations that my life was just going to go back to "normal" in a MUCH shorter amount of time than I anticipated and searching for every possible way to not be this uncomfortable all the time.

[Tiny Dancer]

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?

[piratesbooty]

At my 6-week mark, they rechecked my brain by doing a "with contrast" MRI where they injected me with dye that then went through my brain and then separately a CT. I think that was how it went. At that time, my blood vessels in my brain had returned to normal (from "sausage links" to "tubes") and they saw that the blood had soaked back in. So I no longer took the verapamil (makes your blood pressure go down, although mine was always low anyway) and high dose magnesium that had been my treatment. Yes, my blood pressure spiked during the thunderclap portion of the episodes, due to the extreme pain. I was also vomiting from how much it hurt. Those were a very painful, very scary two weeks. Things actually improved once I started stroking.

I had 9 thunderclap headaches over two weeks, then 5 strokes, then when they retested my brain, they found the small bleed in my right frontal cortex. Was at Johns Hopkins for a week in the stroke unit. I have no residual issues (lots of people get headaches, I was told). I am also 38 and in good health otherwise.

I am diligently working through the emotional aspects of this, and the chemical part. Physically, I am fine--walking, talking, working, etc. Just really trying to heal in every way, but still struggling with sleep issues that have turned to sleep anxiety, dealing with the meds, etc.

Please let me know if you have any other questions. It was an extremely difficult episode that has changed my life a lot, despite not having any real physical manifestation at this time.

[piratesbooty]

How are you being treated? With what meds? I was on something like 120mg of verapamil 2xday and about 1200 or 2400 mg of magnesium.

Not sure if there are different way to treat it. And did they figure out your trigger?? I know my doc at JH said my recovery was "impressive" (thought he was just being nice), but I wasn't under the impression that it takes that long to reverse once you stop the trigger and take the meds.

Please, no matter what, be patient with yourself. It is an extremely scary thing to go through and a not very understood and underdiagnosed syndrome.

[bsaints1]

This is very interesting to me you guys. It is going to push me to get a second opinion. I had my NASAH back in May, coming up on my 3 month mark, they said there is no known cause and should never happen again. I seem to have short term memory loss and slight, almost annoying more than painful headaches most evenings. I was in denial about the memory loss thing, but then my loving wife called me out on it. We are talking about how weird it is and it concerns her. I am also generally tired, but that doesn't seem to slow me down much. I appreciate this post!

[MaryB]

I had my NASAH Sept 2011 and my headaches did not go away until I was put on verapamil around 4 months ago. I had always had low blood pressure until about 6-9 months prior to NASAH. It was all over the place even afterwards. Now it is more stable - normal sometimes even low/normal. I only really get headaches now from over doing.

Last week I saw my GP and I tend to think there would be some answers about why etc and it was the first time I was told I need to accept that there will never be an answer to that question! I keep thinking I had so many issues leading up to the event like my hand writing would not stay on the line but go down a hill when writing in a chart. AND I was so exhausted. I was have been told by GP and neurologist I have / had chronic fatigue prior the nasah. But I really think I was stroking out at times. Or having a seizure? Once again as I asked the other day I was told I need to understand and that there was no answer. It does not matter why or how I got here today because it is all treated them same. I just think it is like reconstructing an accident scene but guess not.

At almost 2 years I have fatigue, short term memory loss and vision issues but adapt very well to all but fatigue as it started to hit by 9 am a few weeks back but now trying something new for that and I am awake and alert like "old Mary" for now. Having had fibro for over 20 years I had adapted my life style and feel it prepared me to adapt. Not that I was not shocked by the NASAH.

I must say one reason I cannot let it go was in 2009 I had a summer of falling and losing my grip. I had given myself 3 back eyes and I was sure something was really wrong so I went to the top Rheumatogist in Chicago and he said it was just the Fibro and I needed to be on Cymbalta. For me I just have had so many neuro issues that Fibro, CFS/ME and now a NASAH that is all is one big Catch 22 and I wish I would sort it out for my sanity but I guess I need to learn to let it go as there is no answers to many of the brain issues.

I did tell my GP the other day I thought or think I am more special and should be able to will myself over all this but he just LOL! Asked me how it that was working for me!

Maryb