Spouse trying to learn more...

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Hello Everyone! I am the wife of a 29yr old that has been having seizures for approximately 5 years now. He has nocturnal grand mal seizures most days, one night I counted 6 before I couldn't watch anymore.

I am just trying to find out as much information as I can, as we have only been together for 3 of those years. He doesn't have much faith in the neurologist that he was seeing. He went through a period where he was had partial paralysis after seizing. He wouldn't know till he would get up out of bed and fall. Now it seems like that has stopped but his moods are getting horrible. He gets mean and hateful then doesn't even remember saying the things that he said. Any light yall could shine on this would be greatly appreciated.

Right now he is on Topamax, Nortriptilyn, Baclofen, Klonopin, and about 5 OTC sleeping pills to let him go to sleep at night.
 
Hi TheMRSFulbright, welcome to CWE!

Boy, that's a lot of meds for your husband (and you) to deal with! I recommend that he find a neurologist that he will have faith in to re-jigger the med cocktail and find something that works. Nortriptilyn can lower seizure threshold, so it would be great to take that out of the mix if possible. Baclofen is a tricky med too. Does he take it for spasticity? If so, it's possible that a working anti-seizure med would cover that too. Which OTC sleep meds is he taking? If he takes melatonin, he should take only a very a tiny dose -- larger quantities can cause seizure in some folks.

There are other anti-seizure meds out there, and a good neurologist would be able to present the options as well as a plan to transition on or off any of his other meds if needed. Your husband's moodiness could be seizure-related, med-related or both -- another thing that the neuro should help with.

Best,
Nakamova
 
TheMRSFulbright

That is some amount of meds to be on, if I counted right, First you need to look at the side effects of all the medication your husband is on. You should look into seeing how they all interact so asking your doctor is a good idea. Saying hate full things and not remembering saying these things. For me thats normal and probably normal for a few others as well. You need to find a neurologist, a good neurologist and get the medications cheeked maybe even changed. You will have to watch all his seizures if you are there, you will need a diary/note book to keep a record of his seizures, eg, time start/finish, what happened and so on. A note of anything which you think interfers or affect/brings on a seizure. These notes are very important for your neurologist and doctor as they help, and videoing one of his seizures would be a good idea. Bring all with you when you go to see the neurologist.
 
Yes it is a LOT of medication to take daily. The Nortriptilyn is taken for neuropathy pains. He had about 12 wks of horrible phantom pains all over his body, and even hear recently he ran out of it and the pains started back up. Baclofen is taken for his back. On top of the epilepsy he has degenerative disc disease. He was doing PT for his back and they would get it worked out pretty well....then he would have another big episode and it would get all messed up again. OTC sleeping pills are: 50mg liquid gel diphenhydramine, (2) 25mg tablet diphenhydramine, (2) 25mg doxylamine, and (3) 5mg Melatonin. We're talking if he doesn't get any one of those pills he is awake alllll night long. Are their any prescription sleep aids out there that are better for epileptics?
 
TheMRSFulbright

I get nocturnal grand mal seizures and have done for a go many years, I have got them under control for me, that is I might only get them every two weeks now. It took a long time but I have good control now. I have had 13 differant med to take in one day. I was like a zombi, I think thats how it felt to me. Go to the neurologist and the doctor talk to them, tell them your concerns and ask about alternatives, you need to get this sorted.
 
Fedup

Thank you so much. Thank you to all of yall out there that are already making this a little easier. For so long it has felt like we are all on our own with this. No one really understands what we have to deal with. They don't get it when I tell them, "no we can't do that today because a cold front came in and he's having a really bad day." Or why that at 30 yrs old we aren't still going out to concerts at the bars and having fun with friends because of the lights. It sucks, but it's good to know that we're NOT alone anymore.
 
Oy! Diphenhydramine is a big no-no for people with epilepsy -- it can cause seizures. And Doxylamine should not be combined with Benadryl-type medications (like the diphenhydramine)! The melatonin dose is probably too high -- less than 3mg is preferable for folks with epilepsy.

Definitely ask the doc about prescription rather than OTC sleep meds -- what he's taking now is a recipe for disaster. Ambien might be worth a try, though it's usually for short-term use. Some of the anti-seizure meds like Neurontin can also help with neuropathy, so that might replace the Nortriptilyn.
 
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