mizuki_hana2 (mizuki_hana2) wrote in seizuredisorder,
mizuki_hana2
mizuki_hana2
seizuredisorder

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Hurting

I live with a wonderful man who suffers from epileptic seizures. He has had them since he was two. We have two younger children and an older one from my previous marriage. Our youngest is his by blood and I am so scared she will go through the pain he is. he has Idiopathic seizures so we don't know where they come from ever. he has to eat right, stay dehydrated, keep his salt level up(from the Trileptol), get good sleep(may have sleep apnea), and stay unstressed(like that ever happens). Bright lights and strobing trigger them too.

Since I've been with him he has had three Tonic_clonics which scared the hell out of me. Mostly it is partial seizures he has, which are very painful and exhaust him. This leads to depression and mood swings as well as anger problems. He is on several drugs: Keppra, Lamictal, Lexapro(depression), Colonapin(mood stabilizer), and the trileptol mentioned above. He takes Excedrin Tension for the headaches that accompany the seizures.

I love him so much and plan to marry him no matter what. It just hurts that I have to watch him suffer and can do nothing but hold his hand. I have no one to talk to about this and it builds inside till I end up crying to sleep. I am always on edge waiting for the next one. Please if anyone can help me with words of advice or just a *shoulder* to cry on I would appreciate it very much.



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:hugs:

My two year old (in icon) has them and has had them since he was 11 months old. He is developmentally delayed, but they are saying he should catch up. I have no idea what will happen next. He has complex partials which go into tonic clonic. He is very heavily medicated on Keppra (on more than some adults) and Topamax. When he was dx'd it was the hardest thing to watch - a baby having full on grand mals. He has had too many to count, and the worst was when he was dehydrated from being sick and had 8 in one day. It does get easier. You just have to be there for them.

Oh Klonopin is not a mood stabilizer - it is an antianxiety drug & can work to help stop seizures as well. Most mood stabilizers are anti seizure meds (I have BP was dx'd right after my son was dx'd with epilepsy & I take Lamictal and Topamax myself)

Wish you both the best.
Again :hugs:
Thank you for the kind word. So far he is the only one in his family to have them so we are crossing our fingers.
Oh in my family, my aunt had them - much like my son. My daughter has had one complex partial and two grand mals, but they are saying it isn't epilepsy, unless she has another one and then they will medicate her. They thought I have them, but nothing shows up on the EEG, my sister has had them, although supposedly it was an isolated incident... so it isn't exactly a new thing per se in my family - but my son's is a severe case.

You are welcome! Hope no one else has to deal with them. :-)
Well, my husband knows how you feel for sure. My seizures came out of nowhere and they still don't know why I have them. They are clonic-tonic seizures, grand mal. I'm currently taking topamax and it has worked great so far. I've not had anymore seizures although I've had auras since the last seizure. Topamax also helps with migraines. I wonder if he could think about switching meds. Maybe it would help control his seizures better and prevent the headaches. Just an idea. I hope things work out for you all. It really is scary...at least from the seizure sufferers point of view. I can only imagine how you must feel watching it happen.
Check the Keppra. Side effects include increased irritability and depression. Actually, so does Lamictal. I think both meds had those side effects occur in about 1% of the sample. Unless, of course, his psychogenic symptoms occured prior to his medication.

I am never on edge, waiting for the next one. I did, for a while near the beginning of my epilepsy. It's not a healthy way to live. It caused more seizures than anything else. It didn't stop them. My husband stressing out over them causes me stress as well. I did reach a zen place after a few years of work and some couch time with a therapist. It's about attitude. I have a great life, intractable epilepsy and all, and look forward to the rest of it, but only because of the way I think about my epilepsy. It's hard, but I think it has to be done. My husband has a much harder time with my condition than I do. I see it not as a debilitating problem, but as a challenge to overcome. He sees a loved one suffering. To be honest, it doesn't help. Sometimes it gets in the way.

The important thing is to not let epilepsy become your life. Yes, it does control parts of it. A certain amount of sleep must happen. Diet must be maintained. Stress must be controlled. But really, even non-epileptic people would be a ton healthier if they did that, too. These are things that you can do for yourself, too.
Don't wait for the next seizure, just let it go. If it happens, you know what to do. In the meantime, just live your life as if he weren't having a seizure, because he's not.