Members that have had a non-aneurysm SAH?

[kempse]

Hi,

Not sure what to call you - can't imagine surfer34 is your real name but forgive me if I'm wrong;-)

I think there are a few members on here who suffered the same type of haemorrhage as you, but the majority appear to be aneursym related ones which does at least give us some knowledge as to why it happened. Either way it does shake you up a bit and most of us seem to leave hospital with little more knowledge than when we went in.

Sorry I can't help you further, but there are at least a couple of members on here who are back riding their bikes following their bleeds so don't rule it out.

Good luck in your recovery,

Sarah

[Jod-Dee]

Hey surfer,

I had my SAH Oct. 23 2009, with CT scan, lumbar puncture, and amublance trip to a bigger hospital an hour away. They told my family it didn't look good and they were going to do surgery to put in a coil. After a few hours in emergency, a helluva lot of morphine and 1 more CT scan, they decided I didn't need surgery after all. Nine days in hospital for rest (as much as you can get in the hospital!) and I was sent home. My body healed itself and I never needed surgery. Had a contrast dye CT scan last January and it came back clear and the doctors said that I should never have anymore bleeds.

Last Saturday was my 1 year anniversay/birthday...and I celebrated with a 4 hour hike up in the beautiful Cathedral Mountains near where I live. Couldn't have done that before my bleed! Any type of real exercise was about 3-4 months for me because even a walk would give me a headache for the rest of the day. Be patient, and yes...drink lots of water!

[Surfer34]

Did you doctor ever give you a percentage chance of rebleeding ?

I have researched all the studies I could find and by my calculations I found about 400 study patients comprising 5 studies with only ONE rebleeding that occured 31 months after initial bleed.

This comes out to be a less than 1% chance of rebleed for perimesencephalic non-aneurysmal patients.

4 out of the 5 studies concluded there was "no" chance of rebleeding. I really hope this is true, lol.

[jess]

Hi there 1% chance was about right i think try not to worry, i know that is easier said than done, however the likely hood of any of us dying from a bleed is very slim. Jess.xxx

[Louise]

Hey there Surfer

Warm welcome to the site.

[Jod-Dee]

Did you doctor ever give you a percentage chance of rebleeding ?

I have researched all the studies I could find and by my calculations I found about 400 study patients comprising 5 studies with only ONE rebleeding that occured 31 months after initial bleed.

This comes out to be a less than 1% chance of rebleed for perimesencephalic non-aneurysmal patients.

4 out of the 5 studies concluded there was "no" chance of rebleeding. I really hope this is true, lol.

The neurosurgeon did the cerebral angiogram about a week after my bleed and it showed no more bleeding. Two and a half months later I had the contrast dye CT scan and it also came up clear, and that specialist told me that it was pretty much a 0% chance of ever happening again. Kinda like lightning I guess, better odds of it happening to the person standing next to me. Keep in mind that my SAH happened for no apparent reason, that there was no pre-existing condition and no trauma happened at the time of the bleed.

Before the SAH I used to get (somewhat bad) headaches fairly often, 2-4 times a month. In the year since, I have only had a couple....except for the 2-3 months of headaches caused by the blood in the brain fluid right after the bleed. But once the blood dissipated, no more headaches! Just remember, if you push yourself too hard in the first few months you WILL give yourself headaches and major fatigue. That was the hardest thing to deal with....having to lay around and do pretty much nothing for 2 months. But it does get better!

[RB-R]

Hiya everyone, i had my SAH on the 15th June 2010 around about 5pm after i had jst put dinner on the table for my four young children ( 11, 10 , 6, 5 ) a sudden headache came i made to my bedroom where i lay on the bed , by then my speech had gone and i was losing feeling in my legs, in minutes all my motor skills had gone, i was unable to call for help. Thankfully half a hour later my husband came home to find me on the bed.He said i was swetting and look very grey and spacedout.I mangered to say one word stoke, which he then understood somthing really was'nt right.

We arrived in E.D. where they took me for a c.t scan which showed i had a major bleed on the brain, they didnt sound very hopefully when they told us. I was then blue lighted to another hosptial and put in ICU neuro. After an angigram it showed i had had a non-aneurysm SAH. i was moved out of ICU within 4days to a ward where i had another angigram to make sure they had not missed anything, all came back clear. I was sent home after a 10day stay to return in 6weeks for a MRI. ( which turned out clear too )

Five days being home i woke up in the night with shortness of breath and my heart racing, my husband rushed me back in where they found a had a PE ( blood clot on the lung ) they put me on warfarin to thin the blood for six months. The only thing about that is a side effect to warfarin is bleeding, also bleeding of the brain so im still very anxious about it.

Since then my recovery has been slow, i suffer with exhastion alot, headaches, my boby can shake my very tired. i can tingling in my head and burning sensation. Numbness in the face also. Things are starting to get better but still have very bad days, which are very hard as i have four kids to look after.

Has anyone else suffered with the same things, any advice would be good thanks:-D

[kempse]

Hi Rhiann, (hope I've spelt your name right)

Welcome to BTG where you are amongst friends who understand what you have been through.

How on earth you manage recovery on top of having 4 children to tend to, I do not know. I hope you are coping with everything - my three were a little bit older when I had my heam... 8,13,16 and I found that pretty hard. So any frustrations, worries, good times, bad times, this is the place to be!! It sounds like you had a pretty rotten time of it initially and it was not that long ago, so I hope you get the chance to come here regularly and get any support you may need.

Sarah

[PatrickK]

Hi,

I just found this amazing group. This is such an important thing to have! I am 6 years post-PeriMesencephalic SAH. Had my PMSAH on Feb 12 2004.

They did the first cerebral angiogram and that was negative. They also did all the usual things: MRI/MRA with contrast, ultrasound, ruled out stroke and AVM. They kept me on Dilantin and Nimodipine to prevent seizure or vasospam.

Since the onset of the SAH i had had a horrible headache, a migraine as it turned out. The intensity of the headache went from horrible to 'being in hell' when they put me in that noisy shaking MRI machine without sedating me first. That made things SO so much worse for days that i am still upset by it if i think about it.

Once they moved me from the ICU to a private room (which was a VERY quiet environment) - with ice bags on my head around the clock, with the blinds closed, lights off, door closed, etc.) THEN my headache was finally able to began subsiding.

i was relased form the hospital on the 10th day. Still on Nimodipine and Dilantin. Had a repeat angio done at 6 weeks, also negative. Was left with the instructions to 'go and return to my life as well as I am able. There may be some residual symptoms but these should improve over time. Don't do or not do anything special, the chance of this recurring is VERY rare.' And I was sent on my way.

This is why i am SO pleased to see that there is a group of others who have had similar experiences as I have had. Because the docs can just say "OK, you can go now". But they don't really know what it's like living with the long-term after effects of these things. I couldn't stand for more than a couple minutes at first without getting dizzy and pouring out buckets of sweat. Anything that required concentration would make me sweat buckets. Just because i was 'neurologically intact' did not mean i was as good as new.

Several years after the SAH i began seeing a very good headache specialist. and she put me on Topamax to prevent migraines. and told me that i am a 'classic migraineur'. And i discovered that many of those sensations i was calling 'residual sequelae' were migraine-related. And with the Topamax on board the incidence of residual sequelae dropped enormously.

So now, if I am getting an upsurge of tingly, STRANGE, sensations anywhere in my head, face, what feels like cold water rushing down INSIDE the skull, like the back of the head, scalp is vibrating, on fire, this means i am on my way to getting a migraine (this has for me become my own sort of pseudo-tactile equivalent to how some people get visual aura before migraine, I will OCCASIONALLY get visual phenomena) so then I know what to do and i take it seriously and cancel the rest of the day and most probably the next day and take an extra dose of Topamax, avoid stress, light, noise, and any commotion at all and just lie back quietly. Migraine by the way IS what the neurologists in the hospital when i had the PMSAH said I was having after the SubArachnoid Hemorrhage occurred.

It's very nice to meet all of you fellow SAH survivors!

Pat

Edited November 14, 2010 by bogbrush
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[jess]

Hi there pat welcome to btg. Hope you find it really useful here. Look forward to chatting sometime. Jess.xxx

[kempse]

Hi Pat,

A warm welcome to you. I'm glad you have found this site - better late than never - it certainly helps to be amongst other fellow survivors. I think many of us are just told "carry on as you did before" and it is often later that you realise it is not always that straight forward. At least on here you can speak to others with a similar experience and realise you are not alone. It's good that you are forseeing your migraine attacks and can be better prepared for them. I suffer frequent Aura of migraine since my sah but am fortunate as I don't get the headache afterwards, which I consider a blessing. I hope to hear from you again soon,

best wishes,

Sarah.

[Louise]

Hi Pat

Warm welcome to the site.

hope you find it useful...

take care

[PatrickK]

Thanks Jess and Kempse! I had thought on several occasions what a good idea a forum would be, but don't know if i actually did ever get to searching

Pat

[Karen]

Hi Pat and welcome!

This website has only been running for just over 4 years (July 2006) after I had my SAH in 2005 .... so if you had been searching earlier than 2006, we wouldn't have been here!

I'm another one that experiences migraine with aura ... have done so, since I was a teenager ... but it's fairly controllable now.

Hope that you find it helpful and there are some good folk on here! Wishing you well in your continued recovery .... xx

[maggie]

Hi Pat,welcome aboard!

Thank you for posting it made a good read and an interesting read too!Look forward to hearing more from you.Best wishes.

[bogbrush]

Welcome Pat Glad you found us.

Look forward to hearing more from you.

[Tina]

Hi Pat a very warm welcome to BTG....so glad you found us ! Look forward to hearing more from you. Take care Tina xx

[PatrickK]

Thank you Louise, Karen, Maggie

Karen, I actually would sporadically {luckily VERY rarely} get migraines (no aura) since i was a child (age 8-9 as best as i can reconstruct it), but i never had aura until my 20s. And then i had no clue at all that these visual phenomena were prodromal to a headache - i figured it must mean my BP was high or something

what can i say, i'm not a particularly fast learner

.

But you fellow SAH victims might (or might not;-)) find this interesting, when i was in hospital getting the cereb. angio, just when they were at the point where the hemorrhage had occurred, and they released the contrast substance (which i was watching on the screen) it was like golden sparks of light, not so much SPARKS but like lightning bolts, which i think

m a y b e

shot across my visual field from the edges. This happened both times i got angios, and the neurosurgeon acted like that was no big deal and not unusual. But

that

is a very common type of aura i'll get as prodrome to a migraine. But the sensations in and on the head are something i take more seriously, because then it's a pretty sure thing that it's not just going to go away unless i retreat from all activity, light, etc.

Pat

[PatrickK]

Thanks Bogbrush and Tina! and Thank You for making my giant font look slightly less insane there Bogbrush!

Pat

[Janet]

Hi Pat

A warm welcome to you glad you've found us and look forward to hearing more from you.

[PatrickK]

Thanks for the welcome Janet

Pat

[Gill C]

Hi & welcome to BTG, look forward to hearing more about you Pat

[PatrickK]

Well Thank You for the kind welcome Gill !

Pat

[Jod-Dee]

Thank you Louise, Karen, Maggie

Karen, I actually would sporadically {luckily VERY rarely} get migraines (no aura) since i was a child (age 8-9 as best as i can reconstruct it), but i never had aura until my 20s. And then i had no clue at all that these visual phenomena were prodromal to a headache - i figured it must mean my BP was high or something

what can i say, i'm not a particularly fast learner

.

But you fellow SAH victims might (or might not;-)) find this interesting, when i was in hospital getting the cereb. angio, just when they were at the point where the hemorrhage had occurred, and they released the contrast substance (which i was watching on the screen) it was like golden sparks of light, not so much SPARKS but like lightning bolts, which i think

m a y b e

shot across my visual field from the edges. This happened both times i got angios, and the neurosurgeon acted like that was no big deal and not unusual. But

that

is a very common type of aura i'll get as prodrome to a migraine. But the sensations in and on the head are something i take more seriously, because then it's a pretty sure thing that it's not just going to go away unless i retreat from all activity, light, etc.

Pat

Hi Pat,

When I had my contrast-dye angiogram I also experienced the sparks/fireworks show. The Dr. said it is an expected affect from the contrast dye. Saw floaters for a few days after too, but they went away. It was more the pain that bothered me, caused a headache almost as bad as the NASAH!

[Gill C]

I also had the sparks across my vison (red & blue for me) during my angio but it wsan't the same as my migraine aura, I also got a tingle in my tongue but they had warned me that I migh experince this. My migraine aura is the same shape as my floater, wishbone shaped & it vibrates acrosss my vision obscuring one area of my sight.