1. Community
  2. Brain and nerves
  3. Epilepsy and Non-epileptic seizures

CONCERNED PARTNER

Posted , 5 users are following.

shelia
shelia

:? I AM THE PARTNER OF A RECENTLY DIAGNOSED PERSON WITH EPILEPSY, HE HAD HIS FIRST NIGHT SEIZURE IN MAY THEN A SECOND NIGHT SEIZURE IN JUNE, I WAS GETTING APPROXIMATELY 3HRS SLEEP A NIGHT AS MY BODY USED TO AUTOMATICALLY WAKE BETWEEN 1AM AND 2AM AND I WOULD STAY AWAKE UNTIL ABOUT 6AM AS THESE ARE THE TIMES THAT THE SIEZURES TOOK PLACE, HE WAS THEN PLACED ON EPILEM IN JULY AND I HAD STARTED TO GET BACK INTO A NORMAL SLEEP PATTERN UNTIL HE HAD ANOTHER NIGHT SEIZURE RECENTLY AT 5.15AM AND I AM NOW BACK TO HAVING LITTLE SLEEP AND CAT NAPS, WHEN HE SCREAMS AND STIFFENS AND CLUTCHES HIS CHEST, ONCE HE IS ON THE FLOOR I AM OKAY BUT I AM TERRIFIED BY THE PROCESS BEFORE THE SPASMS, I DON'T KNOW HOW TO OVERCOME THIS FEAR AND HAVE MADE IT WORSE NOW BY READING ABOUT SUDEP AS IT WOULD APPEAR THAT HE SUFFERS FROM NIGHT SEIZURES ONLY, I DARE NOT TAKE SLEEPING TABLETS IN CASE I DON'T WAKE UP, IS THERE ANY ADVICE OR PARTNERS IN A SIMILAR SITUATION AND HOW DO THEY COPE WITH IT?[color=black:47127d2a4b][/color:47127d2a4b]

0 likes, 5 replies

5 Replies

  • jenn
    jenn

    Posted

    I have seizures and the onlything you can do is be there for your partner in the time of need.My husband feels just like you since I get them in my sleep.

    Good Luck

  • jupes
    jupes

    Posted

    I feel the same, even though its my son. He started having siezures 2 years ago when he was 19. I felt my life had been put on hold, I couldnt sleep and was listening out for him all the time. I now think it was normal to feel like that. You have to get on with your life and not make it a issue. My son couldnt understand why I felt like I did. Its been a tough 2 years as hes had injuries when hes had a siezure. I still worry, but not has bad, it seems worse for the immediate family than the actual patient some of the times. My son cant understand what the mither is all about!!! I hope you can try to get over the initial shock of living with someone with this condition! It does get better! Once he finds treatment that suits him and which will stabilse his siezures. Good luckx
  • Guest
    Guest

    Posted

    :D THANKYOU FOR SHARING YOUR EXPERIENCE ANDD THE ADVICE GIVEN, IT IS REASSURING TO HEAR FROM SOMEONE IN SIMILAR SITUATION

    THANKS

  • Guest
    Guest

    Posted

    My wife has been on medication for epilepsy for many years and it's been nearly two years since she last had an attack.

    The hospital had diagnosed her with 'petit mal' epilipsy. However, last night, she had a full blown Tonic-Clonic attack which scared the hell out of me. I felt her get out of bed to go to the bathroom, but didn't hear her open the bedroom door, then there was an almight crash. I put my bedside light on and found her out cold where she had fallen. She had gone straight forward and hit her head on my guitar which sits behind the bedroom door. It was fortunate that she hit where the wide strap was hanging over it otherwise she would have split her forehead open on the edge of the instrument. She was laying with her head forced back, necessitating me to pull her away so that she could lie flat. She then went through a period of grunting like breathing, followed by stoppage of breathing for what seemed ages. She made a funny wheezing noise and eventually started breathing again.

    She also lost control of her bladder.

    I got her into the recovery position and as soon as she regained conciousness kept talking to her until she was able to get up again. She remained in a very confused state for several minuetes following the attack.

    For her part, she ended up with an enormous bruise on her forhead and friction burns on her nose (from the guitar strap).

    For me, it scared the hell out of me, especially as I've heard of SUDEP, and it worries me that this is a possibility that she may face.

    Obviously I'm not going to stand by and wait forever to take action if she stops breathing, but if a victim of a seizure stops breathing for an excessively long time, they are going to need medical help, but how soon to decide to call for an ambulance and commence CPR? What is the longest period of time that a person has stopped breathing and restarted without any ill effects?

  • miss_chief
    miss_chief

    Posted

    Dear Sheila

    Let me say I understand what you are saying, but come from the other side of the experience as I have night time seizures. I find it terrifying, I'm fortunate that I have never been totally alone (not as far as I know!) when I have had a seizure, so there has been someone there to help me to come round. I had never had a seizure in front of any partner of mine until Oct 2007. I too am on Epilim Chrono and fortunately have well controlled epilepsy on this, however because I was diagnosed with epilepsy when I was 18 (I'm now 27) , then didn't have any seizures for years, so got taken off it - which is why I had a massive seizure in front of my boyfriend.

    He called 999 and they sent an ambulance out, I was unconscious, blue in the face & lips and not breathing properly & the seizure had been quite long. Obviously I don't know what type of seizures your boyfriend has, but if you think it's very serious, call 999 - they will ask the right questions and be able to make a decision on whether it is required.

    I think the main thing is that you are there, you don't need to lay awake all night, I'm sure you would realise (or awake) that your boyfriend was having a seizure.

    I've never had a seizure in the day, so SUDEP scares me as I have grand mal tonic clonic seizures in my sleep or on waking (I normally want a glass of water, seems to be every time prior to having a seizure). The thing about my seizures is looking back I know I had one huge seizure by myself, as in I was in my bathroom, flatmates weren't aware, or didn't see and it took for me to have a seizure in front of my boyfriend to realise I'd had one in the bathroom - I'm that confused after I've had a seizure and nothing makes sense to me. It's like a mini explosion in your brain.

    I think the main thing to remember, is that if you are used to someone's seizures you'll know what to/not to do - if the seizure is lasting longer than normal or your worried about the type of seizure they are having call 999- you don't have to get an ambulance but the medical advice is there for you, that is their job. Please don't let it ruin your life as a couple!

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.