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mblack618
mblack618

Affection & Intimacy with Epilepsy

My boyfriend has epilepsy..He has grand mals..He has had epilepsy since he was 18..and now hes 31. From being on Depakote from the start he is finally off of it and weaned from KEPPRA to Lamictal now...For the past 2 yrs we have been together intimacy and affection has been a issue...This is all new for me so when it comes to only kissing or being intimate 1x a month or so it is affecting our relationship. He is now taking 900 mg of Lamictal per day (500 mg morning and 400 at nite). His seizures are controlled and hasnt had any since May 2009. At one point when he was prev on Lamictal before his last seizure affection wasnt an issue for 1 week but then it went back to his normal routine..

When it comes to affection, cuddling and holding hands is the extent of it..Its hard for him to even show his emotions or do nice things for me....He has his moments but it seems like his epilepsy has played a huge part of the problem...I cant handle it anymore and need to know if there are any suggestions from anyone who has experienced the same situation from Lamicatal or the epilepsy itself? I have been supportive but it is so hard for him to be affectionate and kiss me or be any more affectionate like a normal couple would be in a relationship.. When we are affectionate he has no problems whatsoever...but meanwhile he just is never in the mood..Even if i kiss him hes just not into anything...

It seems like the only time he can be the way i want is when he has a few drinks in him which i know is not good as he could have a seizure...His neurologist prescribed him Lexapro to help get his mind off the BS in life to maybe help but all it has done his mellow him out and all..His testosterone is normal as he was tested for low testosterone and dont know what else can be done...

Any advice or input would greatly help as we are trying to get past this issue and have a positive future....Advice on medications, or any other type of methods that can help with this problem..

Thanks..

By mblack618 at Sun, 11/01/2009 - 11:35pm | 127 views | 10 comments

Recent Comments on this Discussion

Hello mblack, I had a Right Temporal Lobectomy and am still on AED's.   Both of which have greatly effected my sex drive.... it went from ok when I was still seizing, before my surgery to absolutely nothing at all since my surgery..... I am still on meds, However if I miss a dose I do knotice that I get arroused. So I know that at least in part its the meds..... As far as being effectionate... I never have been either, however I am now trying to learn how to do that.    On verge of a divorce because of all of the years of her dealing with my E and lack of being affectionate.....   Trying to fix my life before it totally collapses.   Anti-depressants and counceling have begun to help.... they might be an option in your boyfriends case as well..   

Good luck...... and just know... It's not you, its the E and medicine that hes on...      Ranger.

Ranger

Thats good to know!! He always said it was the E and meds but after a while i thought it was just an excuse..We had to split apart for almost 2 mths because of it cause he blamed the arguing and everything on us and not the meds that did it..Anyhow..Is it true that people with epilepsy need to seek attention? Even if there with someone who they love they still have issues and flirt, talk to girls as they are single and etc just to make themselves feel better and more confident? This was a major issue with my boyfriend even though he loved me and wanted to only be with me..Also acting on impulses and not thinking..Drinking excessively and making rapid decisions without thinking it through? How can someone with E have a normal relationship? i havent given up on my boyfriend at all..forgave him for everything..He goes through spurts where he is happy one min and depressed and miserable and lost the next and makes careless decisions without thinking. Any suggestions? I am trying to get him into counseling so we can hope for a loyal relationship. Also do people with E possibly have a compulsive lying disorder at times of mania or depressed bipolar states??Any info from people would help! It seems like ever since he was put on a higher dosage of lamictal and has come off Lexapro completely it has completely screwed up his mind!! When he was on a low dosage of lamictal it was like he was the person i fell in love with and saw that sparkle in his eye again and he was happy!!

Thanks..

Ris

mblack618

  I have taken Lamictal.  There are a lot of possibilities. I take high doses of one medication and take 2 other medications and my medications do sedate in one manner or another.  I find I walk for  a period of time - I am less sedated. Have him not take a shower! Just have some fun! Each person is different and have their limitations.   My husband takes different medications for his situation and we work together to deal with our intimacy. My friend would say "Life is a Festival!  It is a challenge. Talk to the Neurologist. The Neurologist may have suggestions.   We have known each other for 20 years .   He works in a stressful job and works long hours at different parts of the year.  We are both grateful to enjoy ourselves in communicating and being married for  18  years! 

 

tonialpha

I am not surprised your friend is having problems, aside from the epi.  900mg/d of Lamictal is a very large doseage to take for the condition.  Does he get any sleep, aside from any other side-effects (I have some problems with 200mg/d but they must be dwarfed by those your friend enjoys)?  Not cheap either.  Any chance of switching to another AED?  I sometimes believe that the side-effects of drugs can be worse than the condition treated, certainly as far as the person suffering from it is concerned.

I hope things get better.

Chris

scorpio

Good morning. 

I am a 33 year old woman and I am soo in love with my husband, but when it comes to intimacy I'm just not interested at all.  I would rather wash dishes than be intimate. 

I take a high dosage of two AEDs 2x day and I have no doubt this is the reason for the low sex drive. 

Everyone is built different, but unfortunately I do not see my situation changing anytime soon. 

Best of luck to the both of you!!

Shakey...

Hi mblack618,

Most epilepsies, especially temporal lobe epilepsy (TLE), almost always greatly reduces "sex drive." The next problem is that Anti-Epileptic Drugs (AEDs) also reduce the sex drive. The only times AEDs help here is when the AEDs reduce the effects of epilepsy more than they reduce the sex drive. There are a moderate frequency of epilepsy patients that this isn't a sizable problem, and there are very infrequent occasions where epilepsy leads to excessive sex drive, more often with females than males.

Then, the mechanics are a problem also. It has often been noted that "excitement" to/and/with orgasm is a form of a seizure, the very thing AEDs are designed to prevent. Again, there are many moderate to fairly rare exceptions (I'm one exception, near zero sex drive, no problems with impotence, and frequent priapitic seizures that got me raped in High School while being overly fascinating to many older males).

In most voluntary relationships, instead of sex drive, I just try for the artistic satisfaction more from a work of literature, from "A Midsummer Night's Dream" to "Thousand and One Nights," "The Decameron," etc., or whichever characters my partner and I feel like playing with each other at any one time. And, natural biological olfactory clues seem to be more pivotal with TLE.

I hope this helps.

Tadzio

3Hours...

Hi. Epilepsy is probably not the issue here. It doesn't really have a psychological profile that goes along with it. Maybe he is depressed b.c or not b.c. of it, because that can make people not want to have sex. Or he just could have issues with it in general, which kind of seems more likely. It seems like it's really affecting things, so you might want to look into talking to a therapist about it. He could talk to one, or you could go to one together.

adamss...

Hi. I have always been a very intimate and eeffectionate participant in my relationship.  After my E. started last year (post tumor removal) I was put on Keppra and between the two My drive just disapeared... nothing.  I stoped every kind of contact, from holding hands to kissing to just a warm passing toach.  Like I am a different person.  I have left the love of my life feeling abandoned and isolated, undesired amd rejected.  all aftewr they have done so much for me.  A neuro-psych counselor has helped us to understand that it is the E and the Meds and how to compinsate.  It is a long road ahead but you must persavier.  good luck sal

sally ...

I have a low sex drive and and problem with showing intamacy. We have sex maybe 1 a month. I always thought that it was him. But after reading this forum, I am beginning to think twice. I do take 3 high doses of AED's. We have been married for 12 years, so I thought it to be a normal thing. But in the back of my mind I keep thinking to myself, a 36 yo should not be avoiding sex. 

maymae

I think it is the meds. my partner did not even realise due to memory problems that he was more sexed before certain new drugs and now we have to make a conscious effort to have 'together time' once a week; although this is hard for partners of epileptics who are not experiencin any lack of drive, we have to remember that together with our love occassionally is far better than any alternative and certainly better than not at all!! keep on talking and being caring & creative. also, remember he may completely be unaware of how he's hurting you - i explained things to my partner (night seizures, very volatile and active - pulling things off the wall and jumping out of windows) and he made everything into 'his problems' and was super cold (not like who i first dated) eventually he changed meds and voila - super affectionate sweetheart back and sex once a week (still by date though, lol). good luck and use this forum to provide support - epilepsy is affecting you as well but it could work out great despite his illness x x x 

tiredi...

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