Sex and Seizures?

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lizzyj406

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Hello!

I'm hoping for some advice or support or anything really. I have what have been drug resistant seizures for about five years now. I have recently started seeing a great guy - he's supportive and funny, we fish together, and he just got accepted to grad school (yay!). However, every time we have sex I have a rather significant seizure. And I mean EVERY time. It either happens during or right after and really puts a damper on the mood. He simply rolls with the seizure and makes sure I don't hurt myself. I am SO frustrated with this - and frankly, its a little embarrassing to have a seizure naked. Seizures are exhausting, they interrupt my memory, and kinda just kill the mood. Has anyone had to deal with this? How do you and your partner deal with it?
 
I've had a seizure during sex once. My husband thought I was really getting into the mood because I started going crazy in the bed. That's when he looked down and saw that my eyes were rolled back and my mouth was hanging open drooling. We make jokes about it now.

I can't imagine what it would be like having one every time. Is there anything going on before you have sex? Are you nervous about it? I don't know if you are using any sort of protection but you could be worried about what could happen if you're not.

I hope someone else can give you more advice on this.
 
I've had seizures during sex before. when I have have a seizure I don't also remember having one it's like when I've called out someomeone else name and we still joke about it.
 
We do often joke about it - I believe a sense of humor is crucial to coping :)

We always use protection and I'm on birth control just to be safe. I never feel anxious about it and he's always very good about making sure everything is ok and I'm feeling good about it. Thank goodness for a great guy!
 
I had one once after sex. It was slightly embarrasing especially since he didn't know I have them. I kind of just briefly explained and left haha.
 
Having sex releases all sorts of chemicals and hormones and such into our bodies, and I imagine it must cause electrical activity in the brain as well. I think that would somehow be involved with it more than stress, because it doesn't sound like you are feeling stressed about it.

I hope you find a solution!
 
Hi y'all. Hope this is okay. While I do not suffer from seizures, my husband of 25 years does. About 4 years ago he was diagnosed with Focal/Temporal Lobe seizures. His first medicine they put him on was Keppa and I had to request they change it because he became very moody and dependant on me 24/7, in other words he was driving me crazy. His doctor then switched him to Lamotrigine ER, 200 mg daily. He has been on this medicine for 1-1/2 years now. About 6 months ago his doctor added a second med called OXcarbazine 150 mg, 2x times per day. I have realized that his seizures appears to be getting worse lately. But I am seriously struggling with this all. I feel like he just doesnt seem to care about anything but burying his head in his phone. Its been a constant fight as I get no affection from him unless i lose my mind. Our sex life has gone away, however he is always looking at porn but never looks at me or even touches me. I have tried but i get nothing on his end. Has anyone else experienced any of these side effects while being on these meds?
 
Hello. I also have drug resistant seizures. I currently take 500mgZonisamide & 250 mg Xcopri daily. n I've been married for 26 years, & have 2 sons--one is 25, the other is 18. Thankfully, I've never had a seizure during or right after having sex. Sex is often quite uncomfortable for me, though, thanks to the AEDs. I also find that I'm not very interested in it.
 
Hi HAS,

Welcome to the Forum! Just like your husband I have temporal lobe epilepsy and when I was on Keppra it
gave me such a hot temper I told the Dr. to get me off the drug within a month. Your husband may be cell
phone sensitive which means the frequency of the cell phone are triggering his seizures. This is what happened
to me after I started having a lot more seizures at work at a public school and the students and staff were on
their phones so much it triggered seizures. My Epileptologist did a e.e.g. on me and he purposely was using
his phone at times but I didn't know it and each time he used his phone the spikes in the e.e.g. went sky high.
As far as your sex life seizure meds never bothered me and I've had seizures for 52 yrs. and I've been married
for 38 yrs. You may want to sit down and have a talk with your husband or check out his phone there may
be something more going on if he's ignoring you. My father did the same thing to my mom.
I wish you the best of luck and to find the best seizure med for your husband to his neuro. to do a DNA test
on him by doing this it will show the amount of enzymes in his liver along with his body chemistry and then
the neuro can match that up to the best seizure med with the least side effects or it will show if he's drug resistant.
Wishing you only the best and May God Bless You,

Sue
 
Hi y'all. Hope this is okay. While I do not suffer from seizures, my husband of 25 years does. About 4 years ago he was diagnosed with Focal/Temporal Lobe seizures. His first medicine they put him on was Keppa and I had to request they change it because he became very moody and dependant on me 24/7, in other words he was driving me crazy. His doctor then switched him to Lamotrigine ER, 200 mg daily. He has been on this medicine for 1-1/2 years now. About 6 months ago his doctor added a second med called OXcarbazine 150 mg, 2x times per day. I have realized that his seizures appears to be getting worse lately. But I am seriously struggling with this all. I feel like he just doesnt seem to care about anything but burying his head in his phone. Its been a constant fight as I get no affection from him unless i lose my mind. Our sex life has gone away, however he is always looking at porn but never looks at me or even touches me. I have tried but i get nothing on his end. Has anyone else experienced any of these side effects while being on these meds?
I have had Epilepsy for 43 out of 45 year marriage. A couple things. I was on Keppra (along with Dilantin) about 20 years ago. After about 5, I had to get off it because of my emotions got bad, especially anger. So that is not surprising. On the flip side, Lamictal can sometimes cause lethargy or withdrawal. I take a very heavy dose of that when I switched off the Keppra.

On the relationship side and not specific to physical, it can be very easy to just slip into a more simple world and away from others or activities you have always enjoyed. It is easier to hide than deal with the epilepsy.

That said, you should be the last one he shuts out and he possibly needs some professional counciling to realize that. There is no way I would be here today without my wife. She has been my emotional support since we were a young couple. I often get withdrawn, but do my best to never make her my target or opponent. I sincerely hope that your husband can get to see that.
 
Family members need to realize that we aren't always fully responsible for how we're acting. The medications can take a huge toll on both our libido & emotions.

I also know that family members need to understand that we have no control over our seizures' frequency or severity. One time, someone actually suggested that I could control them.
 
Definitely agree Sabbo, I have been in those situations
But take it from the old guy, it would be a good idea to not lose the support of his wife.
Absolutely NO EASY or always correct answer.
 
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