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momof1

Sex Drive

Does anyone else have limited sexual interest due to their seizure disorder? I have just read that temporal lobe epilepsy can cause affect the sex drive. I personally have no interest in intercourse. I now wonder if this could be why. I'd love feedback.

Comments

RE: Sex Drive

Yes, I have had problems with my sex drive for years. Different medication was my biggest proble. And even after my surgeries in 99 I still have prblems with it quite often. You are not alone at all. I think it is the meds they have us on. My doctor told me he would give me something for it but I am 27 and I just don't think I need that right now. Are you in a relationship? Because it has caused me a lot of problems in the past!

RE: Sex Drive

I'm happily married. It has caused some problems. Knowing that it could be the medication or seizures helps. I've gotten used to it. It is hard to have zero interest when your partner wants to be intimate,

RE: Sex Drive

I was told by a doctor when i started on the Depakote that it could halter sex drives. I am sure from what i have read that some of the others do too. Between the meds and seizures i just don't have the energy very often.

RE: RE: Sex Drive

In the book "Seized," by Eve LaPlante--for my money the best book ever written about TLE--the author quotes Norman Geschwind, who states that one of the five characteristics of temporal lobe epilepsy is a diminished OR increased sex drive. Don't know anyone that suffers the latter. Me, I agree with the majority. I had TLE when I met my wife 9 years ago, and we've never had intercourse. Fooled around a few times. I'm 54 now and she's in her early forties. We joke about it sometimes. It's not a big deal.Anyway, sex is hard work, and messy. Who needs all that for the same few seconds I can achieve downloading from the...Nevermind.BobPS: Four Bronx cheers for who can name all five common characteristics of TLEs.

RE: RE: RE: Sex Drive

I'm glad Bob posted above. I have TLE, but also an injury to my frontal lobe(always wear your seatbelt!!!) and I have a very active sex drive I was doing some research into Bipolar the other day and thought Uh Oh when I read that they also have a very high sex drive... after an appointment with the doctor came to the conclusion that I didn't have BP. My sex drive causes me huge issues. Just because it's a common fact amongst friends that my boyfriend(ok we split up yesterday) and I had sex a lot and it was usually initiated by myself, they seem to think that that makes me a slut, whoare, hooker, you name it.Alexie xx

Re: RE: RE: RE: Sex Drive

Alexie,

I can relate to your desires being seen by others as wrong.  I too have TLE and had Surgery to stop the seizures.  Then I started dating a woman I met through the Epilepsy Society's Support Group who saw me for who I am, compared to the public seeing me as a wierdo.  When the news was out that we were becoming more than just friends, it scared her parents.  

IQ Testing was done on both of us, and I was given a Grade 10 Average (that of a student age 15).  She got a Grade 8 Average (Age 13), so it doesn't matter how old we are.  In the eyes of the Justice system, we have the minds of children, and children can't legally give consent.   

The Police asked me... What do you think her parents would have said if you'd told them what you wanted to be sexually active with their daughter? (their way of showing me how wrong it is)   

All my life I've been hidden from sex, while all my friends and relatives got into relationships.  Now I'm free of seizures and want someone, only to find it doesn't matter how old you are... if you have the intelligence comparable to that of a teenager, then you're legally under-age.

Fortunately, my IQ level means I can't be charged.  Instead, I've been put in a Sex Offender Program with guys who go after little girls in parks, swimming pools, school playgrounds, etc. to learn that no matter how much they may seem to like you, you're not allowed to get involved with them.

Re: RE: RE: Sex Drive

Bob I think I will get that book, 'Seized'..thanks. I'm sure it will describe 'me' and make me feel not quite so alone. :)

RE: RE: Sex Drive

some medicines do indeed effect you sex drive.www.inspirationallivingonline.com HelloI created a web site about epilepsy and other helpful topics about epilepsy. I am looking for others to also share there inspirational stories.I believe we all learn from each other. And by helping each other we not only help others, but we help ourselves. When I was writing my books and doing freelance writing it was not the research that helped me the most it was eoples stories and insight that helped me learn how to cope with my disorder and learn to accept myself, love myself and accept myself, so I could go on to live a happy productive life.Having any disability, disorder or illness is hard to live with; the key is to understand it, understand yourself and learn to tie the 2 together.It takes a long time but with inner strength, self-confidence, the abilty to believe in yourself and the concept anything is possible we can achieve our goals and meet our destiny and purpose in life.Why should life end because we have epilepsy. It does not. Each day is a new day, a new beginning with meaning, beauty and the ability to indure a fulfiling life with happiness.I need your help. I want to help people like myself who suffer from epilepsy. I have come a long way in the 5 years I have been writing and helped many through my writing.The world has come a long way in recognizing epilepsy, but we still have a long way to go. Help me build my epilepsy web site. Send me your ideas, stories, poetry. Help me teach and show others what epilepsy is, what we can do to teach others, help others and teach society that epilepsy is more common than you think.In the US there is 125,000 new cases a year. In the uk there much more... Many people with epilepsy have Autism (Why is this?)Help me Open society's eye'sThank you,Stacey Chillemistaceychil@aol.comwww.inspirationallivingonline.comwww.authorsde.../staceydchillemi

RE: Sex Drive

Yes there is a certain med that seems to lower my sex drive.But since my doc has lowered that drug my drive is some better.MY husband is understanding .

RE: Sex Drive

Hi.  My sex drive is okay, but could be better, according to my husband.  I think a lot of my resisting his advances at times has to do with the medicine and definitely the tiredness I feel because of the medicine.  A lot of times I'll have the desire but just feel too tired.

Well, CCS, husbands are,

Well, CCS, husbands are, as a whole, never quite satisfied with their wives' sex drives are they so don't let that bother ya. ;)

I've come to the conclusion they just see it as one of their little jobs...to pester us for sex. Makes them feel useful. :)

RE: Sex Drive

hi i had a very low sex drive till i had my right tembral lobe removed now it is very high.  but if u would like to talk my e-mail is tab75gurl@yahoo.com

RE: RE: Sex Drive

I was recently dx with epilepsy, I have been married for 17 years and until now have had almost no sex drive. I am taking 600mg of limictal (sp) it seems to have increased my sex drive, thank God. Has this happened to you?

Re: RE: Sex Drive

Tab...oh oh don't tell my hubby that...he will want my temporal lobe OUT..LOL! Seriously tho, are you feeling well overall and seizures better since your lobectomy?

RE: Sex Drive

Lee here.....in the same place you are - and I have been here for quite awhile.  My husband has gotten used to it but I haven't really.  I feel guilty about it.   We've been married for 32 now so it sure isn't the main thing in our relationship - and that is a wonderful feeling.  I don't miss the sex because I just have absolutely no interest in it - but I sure do miss the closeness and the cuddling.  I am learning that it is a combination of factors -  I too have an involvement of my tempral lobe, add to that the meds, the length of time on those meds and menopause too.  Working to get a full re-evaluation and maybe some things will change.  Keep asking the questions until the experts and professionals start looking for and getting us some answers and some solutions!  Take Care!  Lee

RE: Sex Drive

Hi,  I haven't had any problem with my sex drive other than being tired from meds.  So My husband is very good about no super late/early in the day sex or after a seizure and we get along wonderful.       WS  

RE: Sex Drive

I also have no sex-drive...nil I had thought it was pre-menopause, but am now learning that it could be from the epilepsy, which I was recently diagnosed with. Now, to explain that one to the hub..lolKeep safe...classy1

RE: Sex Drive

I have no sex drive. But it began when I started peri-menopause. It can be because of the left temporal lobe, having epilepsy for so long(35 years), and medications, for certain medications do it too. I take progesterone to help. But not working much at all. I am still increasing it. But once I get starting I am fine. http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa

RE: RE: Sex Drive

I have TLE also. I also lack interest, drive or energy when it comes to sex. I do think about it sometimes....rarely.....when there's a full moon? My husband isn't the least understanding and I have to admit that's one area I can't blame him in. Strange thing is, I do think about it-would want to-until the opportunity comes around. Then I'm no longer interested or too tired. It wasn't until they switched me to depakote and tegretol that this became an issue so I too believe it's the meds. Whatever it is, I wish there was a solution.-Spiz

RE: RE: RE: Sex Drive

I started have seizure about 1 year now and is taking tegretol cr. My sex drive has gone totally.  I am getting scared even though my husband is understanding. Glad to be seeing that i am not alone it gives me some comfort, as i am scared.

RE: RE: RE: Sex Drive

I have TLE and am having the same problem with sexdrive and i am only 28 and my husband does not understand he thinks it is because i am no longer attracted to him and that is not the case but i take tegretol but i think it may have something to do with the part of the brain that has the seizures mine is the right temporal lobe and i am left handed.

RE: Sex Drive

yes there are time when i feel the same u do and the way i see thing is that my hubby is not getting any untill i am ready for it. so do not worry you are not the only one that feels like that.

RE: Drive

drive? What drive?Ladybug

RE: RE: Drive

It's 2 am and I am sitting here on the PC in the dark because my boyfriend and I have had yet another exhausting argument about my lack of sex drive.  I didn't want this!  I am 29 years old and when he and I met my drive was off the charts!  Now with the introduction to my meds (which I hadn't been taking) everything has changed.  I have tried explaining reasonably to him that it is the medication, but he has refused to believe me.  Would rather take the more dramatic approach and feel sorry for himself saying that I have just lost interest in him!  Boo Hoo!  I am sick and tired of being brow beaten.  Sick of being made to feel as if I have done something wrong...something to perhaps even deserve this.  Over and over again I am assured by him that he doesn't and shouldn't have to put up with it.  What I want to know from you guys...is this reasonable behavior?  Is it wrong of me to want his support and understanding instead of his bitterness and horrible comments?  TMPINO

RE: RE: RE: Drive

I dont have a sex drive anymore.. at first i did.. im 19 years old i need one!! i been married 2 years hesd ok with it though so were ok there plus he cant go no were hes in a wheel chair just a joke he really is but hes fine with it

RE: RE: RE: RE: Drive

Heh...does reverse count?classy1

RE: RE: RE: Seizures

My name is TomIIWatkins. I have been having Seizures since 8/78. I am single and 27 years of age. I do not how it's going with you and your husband but I know having seizures of any type easy not easy. But this with your sex drive is  sometime new to me. I also now that some people thing having disabiliy is a crime. I have been on Trileptal and and Tegretol and that did nothing for me. How is it working for you? Email at TomII20@yahoo.com

Re: RE: RE: Drive

I here you completely. I have nocturnal epilepsy. It seems to increase with being exhausted or extremely relaxed. Ie after an orgasm. We decided to give up sex at night. I've had no seizures for 14 weeks until last night. Prior to that it was 13 weeks. Guess what both nights I fell asleep after sex. I had a seizure at 11:34. Now my husband feels guilty. He wants sex every day or he thinks I'm not in love with him anymore. I instegated last night because I also have no drive and didn't want to face it this morning. I guess now that he feels guilty I feel a little better. Anyway, I used to not be able to function after seizures for a week or so. Short term memory etc. Now I take xango everymorning its an all natural health drink I take between 1-3 oz. It tastes good and I have no problem with the short term memory. So the morning after a seizure I'm tired, ache all over but otherwise function fine. I gave up the ep. meds as they made me feel horrible everyday not just the morning after a seizure.

RE: Sex Drive

Hey folks, there are many people out there who don't have seizures, AND have no sex drive! YOU GOTTA WORK IT BABY!!! Sometimes you just have to "jump in" and get the party started, and then those feelings start to surface! So Ladies ( and Gents),  start cuddling! :)

RE: RE: Sex Drive

It is true. We may not have a sex drive but once my husband starts I enjoy. Please dont make your mates suffer. It is just not fair.Lisahttp://health.groups.yahoo.com/group/EpilepsyApproach/

Re: RE: RE: Sex Drive

My sex drive hasn't changed but not getting it often is a big rough so i've started calling female escorts when i really need it.

Re: RE: RE: Sex Drive

Don't worry.  I'm 32yrs old and I have never had sex in my life due to low self-esteem.  I can't get myself out to meet new people and maybe work into a relationship.  I'm not a player.  First I want to get to know them.   But will never hire and escort or prostitue.  I found 2 dead hookers about 12 years ago do to a serial killer and  Iwon't even get clode to one.  It caused PTSS until they arrest the killer.

RE: RE: RE: Sex Drive

My Hubby is not suffering. LOL  Yes my drive has gone into...ummm...slow...not  quite reverse...1st  gear?   But since we have  been involved for more than 20 years...it is  all  good. 

It's true.

I have catamenial seizures every month with ovulation. I also have a cyst in my left temporal lobe that seems to be the cause. More tests are being planned to see if it truly is. My sex drive is kindof low, too. I have to force myself to get in the mood sometimes and I need to put some good music on to get moving. It doesn't come as naturally as it used to when I was younger. But, then again, sex drive usually decreases with age. And I just turned 30. :) -Kelly

Re: Re: Sex Drive

I'm so glad I found this topic.

My neurologist recently told me he believes I'm having seizures (memory loss, hallucinations, moodswings, joint & muscle pain), but I just had and EEG so I won't find out what's going on until next week.

I haven't had sex in a couple months and the sex we have had before that this year has been lackluster because I haven't been into it. It's very frusterating because my husband and I married for less than a year. We didn't even have sex on our wedding night.

We dated for five years, and he'd always point out I'd get really spacy right before or right after intercourse (real turnoff). I'm wondering if this was an early symptom of seizures.

I'm very lucky he is very understanding and supportive, but I feel really terrible that I can't be as intimate with him as I used to. He is such a sweetie and never complains, but I think I'd actually feel better if he did, because I know he misses it.

Re: Re: Sex Drive

jsustik Im so glad I found this post! Ive had this problem all my life.Ive talked to my dr and gyno but they dont seem to be too interested in discussing this topic.Ive noticed that the only time Im interested is right before my period and right after,so Im wondering if its hormonal.If you get any answers please pass them on.

Re: Re: Re: Sex Drive

my gyn and neuro haven't been very helpful in that area either. I'm frustrated and so is my husband. This has been going on for several years. I don't know if it has anything to do with E meds or not. Many of my friends who don't have E have the same problem. I've explored alternative medicine, but I'm a little scared about taking supplements because they might cause me problems. But I'm not giving up.
My interest in sex occurs mid cycle so at least my husband gets something. I feel really bad, but what can I do?

Re: Re: Sex Drive

Great topic. It has been several years now that I've had a low drive. Luckily, my husband and I have been together for 20+ years and we can remember the good old days. He has never given me a difficult time about my loss of interest and is very understanding. We are a very affectionate couple otherwise; our daughter even teases us about it saying that none of her friends' parents act like us. It is just my drive is just pretty much non-existent.

It wasn't until I read this thread that I realized epilepsy can affect a person this way. Personally, I could never understand my disinterest. I love my husband dearly, want to be with him, just can't get myself into it. I was just recently diagnosed with E so this is something I will have to ask my doctor about. Originally we had thought I had gone into perimenopause early as women in my family tend to go into menopause at an early age, but the blood test came back negative.

Now the good news....the medicine seems to be helping me! YAY! Both my husband and I are happy at that prospect.

Hi Believe, my husband and I

Hi Believe, my husband and I are in a simiar situation and have been together 30 years. I was diagnosed with E in March. I have zero interest, he is on meds that limit his as well but we remain very affectionate. We are a bit older than you so it isn't such a big deal. I am also in perimenopause so lots of period issues with my seizure meds...I also had my first tonic clonic my first period in 8 months, so my seizures are hormonal related. I may have had a seizure I was pregnant...just never realized it was a seizure, wrote it off to being pregnant, fainting, etc. So E may have been around awhile with me and just inactive waiting for the right triggers to really blow up on me into tonic clonics. I have TLE and have always had really strange visions, hallucinations, etc much of my life that have been written off to anxiety, etc. I have a lot of anger about that now.

Re: Hi Believe, my husband and I

Strange you say that because I have anxiety/panic issues since I was a young child -- never any explanation as to why. I've just always had them. Now I am wondering if they are related to E as well. Although I found out that E does run in the family, it was just never talked about. Interesting the things we find out after the fact!

Re: Re: Hi Believe, my husband and I

Yes, anxiety and epilepsy can be related. Just the worry of when the seizure will occur will give you the anxiety. Just knowing you have epilepsy brings the stress and anxiety on. For some of us it can go side by side.

http://www.epilepsy.com/epilepsy/mood_anxiety.html

Lisa
http://health.groups.yahoo.com/group/epilepsyapproach1/
http://www.sleep-safe.co.uk/id90.htm

Re: Re: Re: Hi Believe, my husband and I

What about having anxiety / panic attacks but not knowing you have E? I never knew I had E until recently. Are they still related? I thought I read somewhere here that a seizure can mimic anxiety/panic attacks? Thanks!

Re: Re: Re: Re: Hi Believe, my husband and I

Having anxiety, there is always some underlined cause. If it would be from medications, mental disorder, or others like epilepsy... Possible the epilepsy was there but never shown or caught. There are some people dont realize they have epilepsy till years down the road.

Lisa
http://health.groups.yahoo.com/group/epilepsyapproach1/
http://www.sleep-safe.co.uk/id90.htm

Re: Re: Hi Believe, my husband and I

Yes, Believe, one of the first thing my neuro asked me after she saw my post seizure EEG was have you ever had a problem with dejavu, presque vu, etc or had visions, etc? I said I've always been a bit, er, eccentric... but I don't know what those words mean. when she explained them i just started giggling and we had a long talk...LOL!! it was me all over..I'm classic TLE...most of my life. and I was sent to psychiatrists, made to feel weak, like I couldn't cope with life, etc.. so...I am ANGRY. Because it all culminated in a massive TC where I had a huge head injury where I've now damaged my brain and have lost my career.

Re: Re: Sex Drive

Taking carbatrol 2x daily. I can honestly say my sex drive hasn't diminished in the least although my wife wishes it would.
In Christ alone shall I glory.

Re: Re: Sex Drive

I'm so glad I'm not the only one. I was starting to wonder if there was something wrong with me. I did a little research though and found that the Topamax I take can cause lack of interest. I'm currently on 400mg./day and haven't been in the mood for a while now. I've been married 4 years this August and we were starting to get a little frustrated. I didn't even want to cuddle because I knew where that would go - that's how gone my sex drive was, and still is except now I'm trying to compensate and my husbands understanding since we know why.

Re: Sex Drive

CCEngelstad-My husband is a sex manic. That at the only word I can use. I have been married for 28 years and 2 kids, aged 31 and 26.
I was in a car accident that left me with epilepsy, short term memory loss that is confusing for my husband. He is very strong and won't give up on me.
I have grand mai every time and I am sick of being put in the hospital. I have forbidden anyone in my life to calling United Hospital. It is hell. I have one link to having a seizure. My husband says I start to stutter and have a blank lot on my face. But don't call 911 anymore. It is totally unnecessary. Just roll me over and watch me.
I wear a helmet when I am home alone to protect my head as I usually fall on my head or it hits the wall as I fall down the stairs. I have holes in the walls, where my head went thru the sheetrock, killed my Christmas tree, broke my couch and my recliner took a huge hit!. My husband fixes it each time. It was then that they stuck me in the hospital. I refused to stay when they want to run all these test, even when I had just had the tests done at the Mayo Clinic in Rochester, Minnesota.
The doctors wanted to re-fun all of those same tests. I started putting on my clothes to leave. I refused to stay there. United Hospital had already billed Medicare $250,000.00. I was shocked!
My last seizure was 2 weeks ago so on 'stay out of the kitchen' rules. I am just glad that I don't have to wear this outside. I seem to have to limited seizures my home and once in the doctors office. I only had them at home, in the evening where I noticed, in the living room or the steps.
I do not want to endure this for the rest of my life. Has any one on this site had the surgery? My husband and kids have have their opinions about the surgery going wrong. I think of it as a blessing.
Thank you for listening

Re: Sex Drive

I had surgery over four years ago and it was successful.  I haven't had a seizure since; I still take Keppra.  I was having complex partial seizures.  A few days before the surgery, I had a seizure at a hardware store; I fell down, knocking over cans of paint.  I had temporal lobe epilepsy (caused by scar tissue from grand mal seizures).  I recommend going through the tests to see if you are a candidate for surgery.  Good luck to you.

Re: Re: Sex Drive

I'm not sure whether to say I'm lucky or cursed. Because I'm devout in my faith and unmarried, relations isn't an option. I am one of those people who have the latter symptoms. I've had the opposite reaction to topamax too. It's made me more aggressive and I think it has in that area as well. Thank goodness I can control myself.

When I was taking Lamictal it wasn't as bad. The drive was still there, but definitly supressed. When I went on to topamax as a monotherapy I noticed the change.

God willing when I get married it will be to someone as interested in the subject as I am.

Re: Sex Drive

I've been wonderin what's wrong with me about my sex drive.......lol.

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