Anyone else have a husband or partner with Epilepsy??

[Reedy]

My hubby was diagnosed with epilepsy at the beginning of July after 6 seizures in 5 months x
His first one I dialled 999 as I panicked so much I didnt know what the hell was going on they took him by ambulance to the hospital where his vital signs were checked & his blood & all came back fine x He was then referred to the neurology department where he had an EEG which again came back fine, he's also had more bloods (fine) an ECG (fine) and on tuesday he's having an MRI scan x
Thing is he only has them at night while he's asleep & has no idea he's had one & because he's asleep he doesnt know when he's going to have one as I know those that have seizures during the day can somethimes have feeling they are about to have one x
He's no longer allowed to drive which is driving him insane but he knows its for the best x

I know its him thats going through this & I know its hard for him to accept but I just feel I have nobody to talk to about how it effects me
Seeing my best friend & husband like that is the most heart breaking thing, knowing there is nothing I can do but sit & watch him until he comes around
I hardly sleep incase he has one & I'm constantly on edge when we go to bed x He's now started to sleep really deeply so much so it takes a good 5 minutes to wake him up. He's also started talking in his sleep not just a few mumblings, a full sentence & his eyes are open & looking at me its happened 4 times now & I'm wondering if it could be something to do with his epilepsy??

Just wanted to know if there is anyone else out there I could talk to & who knows what I'm going through as well as my husband x
Thank you x

 

[Kobes Mummie]

Hi,
I dont know exactly what your going through,
I work in a PRU (Pupil Referal Unit) and we have Epilepsy children,
I know its not 24/7 like yourself but i cannot imagine the worry your going through as I would just worry for 8 hours of the day.
Have you checked out any support groups??xx
Teri x

 

[Reedy]

Thank you for your reply x
I have been on to an epilepsy website which the hospital suggested & they do have a forum but its seems really quiet & from what I've seen not many people post & the last post was maybe a month or so ago x

I feel safe here so was hoping someone might be in the same situation as me & my husband, but tbh its just nice to get it off my chest x

 

[Kobes Mummie]

That sucks ... its a shame people dont talk out a bit more really as i guess this would releave stress.
Has your DH had any meds prescribed or a type of epilepsy stated??xx

 

[Reedy]

Yeah he's on Epilim Chrono *800mg twice a day x
The neurologist said he has Grand Mal epilepsy x

Tbh its more heartbreaking that so many people on here have children who have epilepsy x DH & I always said we would rather it be one of us than our little boy x
It would just be nice to talk to someone who understands how hard it is & how heartbreaking it is seeing your partner that way x
Thanks for coming on here & replying & even though your not in the same situ it means a lot x thank you x

 

[moomin_troll]

my brother has Epilepsy and seeing someone having a fit isnt nice, is ur oh on meds to control it? EDIT just seen hes on meds

also my ex would have seizers while alseep, and its scary to see but i really wouldnt try to wake him up. roll him onto his side and leave him to it is the best thing as trying to wake him could be making it worse. ule get used to it x

 

[Reedy]

Thank MT x
The only time I tried to wake him was when he had his first one but that was because I didnt know what the hell was going on, but as soon as I realised I stopped & just called my parents who came over within 2 minutes & my dad called the ambulance x

 

[moomin_troll]

first time is scary, but i knew it was a fit so i was able to cope with it. i woke him up afew mins after it happened and he said oh yeah i have fits in my sleep but he never went to the docs about it because he was stupid!

id often get woken up with a smack to my head or something so id just make sure he was on his side as once he stopped breathing as he was on his back and his tongue fell back....looking back i should of lfet him haha he was a dickhead....he then also started to have night terror and would scream so id shit myself, not sure if they are linked to epilepsy. but my brother often shouts in his sleep so u never no it might be connected

 

[fuzzylu]

I was diagnosed with Epilepsy when I was 13 years old only ever had one Grand Mal fit tho, the rest were hand and leg jerks used to have 100+ a day. I had the hand and leg movements for a year before I had the Grand Mal fit. this is when my mum noticed as I never told anyone.

My symptoms stopped as soon as i started taking the meds (tegratol) over the last 10 years i have stopped my meds quite a few times and every time the symptoms came back. however I stopped taking the meds when i was pregnant (meds can cause problems with baby) starange this is I have not needed to restart the meds and have only had one hand movement since stopping them well over a year ago.

The meds made me feel really sleepy at first, like so sleepy I would come home from school and fall asleep. not sure if the meds ur DH is on can make him sleepy but if they do his body will get used to it, just takes time.

once the meds are working with no fits for a while, it wont make any diffrence to your lives. he will be able to drive again, swim again ect the only thing that will be there is taking meds every day but you soon get used to that.

My biggest fear is passing it on to my sons. the type of epilepsy I have can be genetic although other than me there is no other family history.

sorry for the long post I tend to go on abit lol

xx

 

[moomin_troll]

ive heard u have to be fit free for 2 yrs before u can drive again, but things may have changed.

my brother has been on his meds since he was 6 (hes now 29) and we can really tell if hes stopped taking them, he gets really tired after a fit and abit out of it. so hes not allowed to come off his tablets as he will fit.

fuzzylu its great that uve been able to come off ur meds

 

[fuzzylu]

it is 1 years fit free before you can drive again if you hold a group 1 driving licence. how ever i thin there is something about thos that only have fits while asleep after 3 years even if the have had fits but only in their sleep
https://www.epilepsysociety.org.uk/AboutEpilepsy/Livingwithepilepsy/Drivingandtravel/InformationondrivingandtransportfromEpilepsySociety

because i was only 13 i had been fit free for a while before i could have a driving licence. and the jerks i get are only small and do not effect my ability to drive.

 

[Reedy]

Yeah DH has to be fit free for a year after his last seizure but if he's still only having them at night he can get his licence back after 3 years x
we havent really noticed any side effects to his meds thankfully x
He's snoring more than normal which is bloody annoying lol dont know if thats related x

Its good that you know longer have to take your meds Lucy x DH was worried incase Finley developed it but luckily the DR said that wouldnt be the case *phew* x

 

[paul7210]

Reedy,
hope you don't mind a male replying to your post.My wife has epilepsy which is uncontrolled so i fully understand what you both are going through.Lisa has complex partial and seizures are unpredicatable and happen without warning.Despite this we had a daughter back in 2002.....anyway i just wanted to say if you ever want any support just ask.We live in Derby but attend The Walton Centre in Liverpool for her treatment.I think someones already mentioned the Society for Epilepsy (NSE) they have a forum which might help.
Best Wishes
Paul

 

[Reedy]

Thank you Paul x I really appreciate that x

 

[paul7210]

no problem, hope your husband hasn't been too bad this last few days.

 

[Hangin_On_AGS]

I have epilepsy, I've been seizing since I was 5 years old, i was diagnosed with epilepsy when i was 7. I'm now 21. As far as passing it on genetically. Fathers only have around a 5% chance of passing it on to their children. Mothers have a 30% chance of passing it on. Your chances decrease the later your epilepsy presented. If it presents before age 5 your in the 30% & 5%. If before puberty your like 20% & 3%. If after puberty it goes down to like 10 and 1. Good luck with your husbands, I've never done well with medications so I have a seizure alert service dog and am on a low level med neurontin