Seizure following SAH

[Mikey48]

Had SAH in Dec 2015 and made good recovery. Imagine my shock to be hospitalised last weekend after suffering a seizure. As yet no reason given but assume linked to SAH?

[cat3]

Sorry to hear that Mikey ; I can imagine it would be a shock after so long. I'd be surprised if there wasn't a connection, but what has the doctor said ? x

[Mikey48 in reply to cat3]

Not a lot so far! my hospital discharge letter states " CT Head: gliotic change likely secondary to sub arachnoid" I've spoken with GP on phone since hospital discharge and she says I'm in the system and should soon hear from the Epilepsy Clinic. This only happened on Friday and I was only discharged on Monday so it's early days. I'll keep you posted. Thanks as always for your support.

Mike x

[cat3 in reply to Mikey48]

Yes please do. Hope it's a blip but, if not, try not to get downhearted. As Seali says, these things can be managed.

Sending best wishes and a bundle of hugs....... xxx

[sealiphone]

Health Warning I know very little!!

I had a SAH and 12 month later I came around in my bedroom with some unknown man saying my name, I'd had a epileptic seizure. I was told epilepsy is fairly common when there is a scar on the brain.

The good news I never think about it, apart from, trying to remember to take my Latmotrigine. I'm well controlled and the odd seizure is a small inconvenience after a SAH.

I'm sure you'll get the information fairly soon.

[Mikey48 in reply to sealiphone]

Thanks sealiphone, that's reassuring.

Mike

[moo196]

Wonder if it's worth contacting the community neuro rehab team?

Good luck

☺️

[Kathykathy]

I'm glad you posted as I feel very alone and confused after having a sah 2 yrs ago and getting answers is like looking for gold. I was first told Id had a stroke, and hospitalised bloid pressure through the roof suddenly nearly passing out, confused etc then another medic said mini stroke, then another medic said it was a 21 month delayed reaction to the sah and then another medic said it was a seizure. So you can see my confusion. Whatever the episode it was very like a stroke and I developed a stammer very badly for a few weeks and now intermittent but still there. It then took over 5 months for speech therapy appointment. I've not been the same since episide. No drugs, no support, no definitive diagnosis, no prognosis etc. So will be interested in you posting again with whatever gets said to you. Good luck.

[David2019]

I've since had a TBI away back in January 2013 & only suffered x2 known seizures whilst sleeping zzzz 😢 but hey it's been over 2years since my last one and hopefully my anti epileptic seizure drugs are still working hopefully! They seem to BE too! I'm worrying now that seizures are FATAL and can't remember ANYTHING about taking them just waking up in my room with ambulance staff talking to me and getting rushed to hospital with over aweeks STAY.

[sealiphone]

KathyKathy you write a story which has some resonance with my experience even though I had a major SAH. For 4 years I was told I did not have any cognitive problems (this was totally wrong).

My bleed was due to a AVM, 3 years later I was epileptic and began to have multiple seizures. Twelve before the ambulance arrived and around 8 - 10 on the ward, my wife told the doctor she been told there was a significant risk of a further bleed, yet the next day I was given a chest x-ray and discharged.

3 visits to different GPs who all told me I hadn't had a hemorrhage, I didn't believe them because it felt like the two hemispheres of my brain were grinding together.

I rang the Neurological ward were I'd been admitted for my first bleed, spoke to a doctor who asked 2-3 questions, 15 minutes later a ambulance was speeding down the motorway blue light and siren, I spent 13 weeks on the IC ward.

Moral have some doubt about any diagnosis if it's not been made by a Neurologist, perhaps you need to ask your GP for a referral.

[Kathykathy]

SEALIPHONE - Sorry do not know if my post perhaps explained properly but I was only 2 on Glasgow coma scale and given up as unlikely to survive following a large sah 2 years ago mine was a burst brain annurism which the pressure in head then went on to Tersons syndrome and blinded me I have had annurism coiling and 2 eye ops so now partially sighted and my confusing episode was then 21 months later.I keep being told by medics they actually know so little about the brain still and alot of people seem to have similar experiences where we are really left to suck it and see. I think 4 medics giving 4 different diagnosis proves that point.BUt it's my life and well being at stake and it's a very lonely journey and one seems to have to self doctor or shout loudly and do get sick of no answers and question why no answers and why divided ooinions which leaves me where at the end of the day and what should I be doing, with no guidance and fears for my future as life now is a daily struggle and challenge each set back takes a bit more from me.Lost and coasting for sure.

[Lynw17]

Thing is it’s like someone else said earlier..... we don’t know! It is a suck it and see scenario for all of us! Each of us is different and we heal differently ..... some quicker than others....some slowly and with different outcomes....

I had a SAH in 2005 .... I had a seizure at the side of the road at the time and then nothing until 2010/11 and then it hit with a bang.... I was having major (grand mal) seizures for years and it seemed that we were never going to get the medication right.... I am now on two different anti epilepsy tablets twice a day and even now I still have “vacancies” which apparently are a very mild seizure.

Don’t give up with your amazing self belief and I wish you all the best in your future