Hello , i'm new here :)

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Faith

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Hello ! I'm new here , and to epilepsy too actually , because i have only little experience with this... My boyfriend has already 4 grand-mal seizures (this week was the last) in a 4-5 year period , he'v got his first one with age 28 . 3 of them were night seizures (in sleep) . I have been witnessing 3 of them , and i was Absolutely not prepared for the first one .. it came just out of the blue .. when he screamed in his sleep , i assumed that he had a nightmare , so i switched on the light and ....i thought he is dead !!! It was awful .. I started to cry and scream and run half naked in horror to the neighbors . When i came back with them , he looked like he is agonizing , with bloody foam coming out of his mouth and with wide open scary lifeless eyes , convulsing and making choking noises .. i know .. this is a description of a classical "gran mal" .... , but to me , back than it was so horrific and beyond understanding sight , not knowing , what it is , so i got hysteric and wanted even to jump out the window from despair(we are very in love) . This 5 , maybe 10 minute experience true this seizure , which seamed endless to me , provoked panic attacks , which i had for many months after that . I still have problems to sleep calmly next to him . I jump up in stress from every cough or snore .. He doesn't want to speak with our friends about it , so i feel very lonely in my fears . We don't know what the trigger is . Now on top of all i read about "sudden dead ep. cases" , and i am more scared . I haven't told my friend about it .. because i think its not good for him to worry to much . So i hope to find some answers here , and talk to people with similar experiences and troubles . I'm happy to meet you :)
 
I'm so sorry, I can't imagine how terrifying that must have been.. And must still be. That said, you're incredible for being there for him through it all and staying so strong even though you're so scared.

But... You can't really help someone and be the best you can be if you're not taking care of yourself too! It's great you're here and everyone on here is wonderful (and a lot more educated than I am :)). But I still think you need to not hide from those in your real life too! Even if its just one of your closest friends. You said you don't want them to worry, but that's part of friendship. Just take a moment and think of what you'd tell your friend if they told you this had been going on for a while and they didn't tell you because they didn't want to worry you! This website has been beyond valuable for me, but it can't replace the love and support you find from those closest to you.

I made my boyfriend promise to tell at least his mother and best friend when I started going through my diagnosis so I knew he'd have support for his own feelings. It sounds like you really need your own support system - badly! It's the only way you can stay strong for your guy.
 
You are among friends here Faith and I agree with Katiered, don't shy away from your other friends because you do need a support system. If you educate your friends as to what is going on you would probably be surprised at how supportive they will be. They will worry more if you don't let them know. True friends are pretty perceptive and they can tell when something is worrying you. Take care and welcome.
 
((HUGS)) to you!! I am glad you found us and I'm happy to met you!! That must have been terrifying. Yes, I agree with my friends here that you need to keep talking about it and do keep the lines of communication open with your boyfriend. He also needs to talk about it and communication is ever so important for the both of you, for separate reasons. This is a wonderful place to vent. And please let him know that there is lots of information here if he chooses to join, we would love to have him, as well!!

Welcome to CWE!! :)
 
Hello Faith, you'll find really good support here and some people have huge knowledge of epilepsy, so chances are they'll have answers to any questions you might have.

I don't have epilepsy, my daughter does, so I understand your concerns and fears. I have found that while I obviously worry about my daughter a lot, I have got less uptight about it over time.

Sudep is a terrible, terrible thing but it's also very rare. I know it's hard but you really should try not to dwell on it.

Is your boyfriend on medication?
 
Hi Faith, welcome!

I think tonic-clonic seizures might be worse to witness than to experience sometimes. (I've had about 20, but never seen what I look like.) Good for you for being a loving partner, and looking for ways for you both to cope better.

Is your boyfriend currently on meds? If so, then the dose may need to be increased to prevent future breakthrough seizures. has he talked to his neurologist about this possibility?

Best,
Nakamova
 
Thank you about your confronting words , you all made me feel very welcome here :) I was never writing in forums before , so i'm not sure , where to post (blush) I'm happy to see , they are other people , who are here because of , and on behalf of their dear-once . No , my boyfriend is not on any medications , because , he had only 4 in total ,after the first was only one and only seizure . After the brain tomography and other tests he got prescribed "depakin?(i believe it was the name) , but we went for second opinion and we have been told , that if there was only one (proven) seizure , its not necessary to take it . And if they are very rare also its possible not to take it . Anyway we prefer , natural and alternative treatments , so he went for some homeopathic remedies and vitamins . In the beginning , he was very serious with it (i don't remember how long he took it) , but somehow the memory of the seizure flew away , and he forgot about it and stopped taking them ..I don't blame him , because , he has no memory of it at all , if i haven't told him what happened ,he would never know , and just go on living like nothing has happened . An year ago , unfortunately after 4 years it happened again , my panic was not lesser , but at least i new what it is . Then after 3 months again and after almost an year , a week ago was the last one . Only one of them(the 3th one) was not in sleep , but it was early morning , he just woke up ,and went to walk the dogs in the garden ,this one i missed . :/
 
One thing to note is if the seizures start to happen more frequently or become more severe -- that's a sign that he needs to find a a way to get them under control. You don't want the brain to "get into the habit" of seizing.
 
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