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George R

Sexual Side Effects

Why do you suppose that more neurologists and epileptoloists do not mention that a majority of anti-seizure pills do often make "normal" sexual performance for men difficult--if not sometimes impossible when it comes to erections? The first answer will pop up. And that is, even better-informed male patients will say "...to hell with my pills" and choose to live their sexual life "normally". Mind you, that last word I put in quotes, for who anyway should define "normal"? However, after having tried about as many anti-seizure drugs as the number of years I've had epilepsy (that's 35), I can speak as something of a lab rat. Many pills do affect a man's bedroom performance. And while this shouldn't become our reason for living, it is part of being a human, whether single, married or just evaluating our private parts. As society's attitude toward we handsome, educated humans with epilepsy matures, so does its understanding of "performance" when it comes to sex. Mind you, an honest woman will explain when love-making isn't just the thing for her; that does occur. My point is that this topic shouldn't remain in the proverbial "closet" any longer. Let's talk about it on this fine site, as well as face-to-face. Studies reveal how many men live virtually their entire lives feeling guilty for not performing sexually 24-hours a day, where in fact, there's most likely not one who ever has, other than in movies. And that includes this writer!

Comments

Re: Sexual Side Effects

Is this limited to Sexual Side Effects of AEDs, or does it include the Sexual Side Effects
of Epilepsy too, which secondarily includes AEDs?

AEDs improves performance for individuals like me who had untreated temporal lobe epilepsy
throughout childhood, adolescence, and early adulthood. It is still about as much fun as
doing a rep of any other exercise, but the doctrine of "use it or lose it" might be true.

TLE left me in innocence for a long time, being more occupied by things still more important:
chasing butterflies, wondering why soap bubbles are spherical, to trying to decide if honeybees
in truth make hexagonal honeycombs. (These things ARE IMPORTANT for science, just ask Nabokov,
Feynman, and von Frisch.)

TLE didn't protect me from having my innocence stolen, by individuals denouncing the very act,
such absurdity gave me the lasting mischievousness of Puck and arrogance of Tadzio, though
apathetic indifference is the TLE rule otherwise, with a strong dose of skepticism and
contempt of authoritarians. The economics of American reality and TLE turned parts of my
youth into a nightmarish epileptic version of MY OWN PRIVATE IDAHO, but I managed to
emerge fairly unscathed.

My fleeting youth may have left me with worsening TLE, and now gran mals, at least my absence
of youth has neutralized the annoying face-to-face fascination and questioning of many
physically pesky and trouble-making individuals about my TLE apathy, even though they had no
interest or knowledge in epilepsy.

Re: Sexual Side Effects

I am glad to see so many posts about this issue.  I am a woman, and was diagnosed 8 years ago.  I am on a combination of Lamictal and Topamax.  Initially, I had plenty of sex drive (being a healthy 18 year old, although on depakote).  After having only 1 Grand Mal, I was seizure free for 3 years and released from meds, after which my slightly declined sex drive returned to its shining glory. After another couple big ones, I was put on the med I am on now and dosages gradually increased with every seizure until my most recent, now I am at the max.  I have zero sex drive and have had none for SO long.  I had a healthy pregnancy, my son is 1 year, but we struggled to get pregnant, it just wasn't "fun".  We want another, but I am slightly relieved we can't, my epilepsy has become uncontrolled now and cannot risk pregnansy until I have been controlled for at least 6 months.  I have recently confided in my husband my lack of desire and blame of the drugs and it helped his understanding.  He had thought I just didn't care.  We are trying to find other ways and means to rev things up in the bedroom.  It may seem unnatural, naughty, and "juvenile" to some people, but I feel that it is very important to my marriage that I be able to find a way to be turned on by my husband even if he need to use help (visual, audio, manipulative aides).  I hope I am not being to graphic but I am trying to give people advice on what we have found to be helpful for us.  It is helpful in more than a physical manner.  It provides a band in our marriage as well that we are finally communicating and he is helping me with my shortcomings.

Re: Sexual Side Effects

i have e and take the drug Epanutin at 200mg twice a day.i have got useless sex drive and don`t know what if anything i can do.i`m 42 years old.any advice welcome.

 

Re: Sexual Side Effects

so I am a girl I have been taking Lamictal for at least four or five years about three months ago I started to have sex. the problem is that i have no desire for it and the worst part of all I feel and get absolutly nothing from it. I mean I can feel it inside of me but nothing feels good. I have heard that this could be a side effect and since it effects men sexually I wondering if it also effects women and possibly in the same way for me.

Re: Sexual Side Effects

My fiancee and I found out about this least-desirable side effect of Keppra. My E is kept under control with a low dose, so I don't feel like a complete eunuch. It doesn't lessen my interest, but it does impact my ability to maintain for the first couple hours after my dose. She's very understanding about this, and knows that I'm more than willing to uh... "think outside of the box" when it comes to keeping her happy. Being affectionate in general and spending quality time together plays a big role, too - it keeps us close in spirit, and she knows that sex is not just about one or both of us getting off (although there is nothing wrong with that). The ability to communicate with your partner and be on the same page is critical for this stuff. My ex was on prescription narcotics for pain management the entire time we were together, and her resulting lack of interest completely ruined our sex life.

Any doctor that disregards, or fails to adequately address a patient's complaint about side effects is not doing their job. If you're paying a doctor and they are not doing their job, tell them about it and find another one. Otherwise, you're wasting your time and money while someone else profits at your expense.

Re: Sexual Side Effects

I never thought there would be this many people with the same
issue.  I've been taking Lamictal as a monotherapy for some time now. 
Dilantin caused some serious GI Problems so I've been upping my dosage
of Lamictal for about 6 years.  I'm up to 1000mg / day now.  I have had
breakthrough seizures with it but up until now I haven't had to look
into additional meds.  I've been having more frequent and new types of
epileptic episodes.  I've been concerned because the last few years my
drive has gotten progressively worse.  I'm 31 years old and have had the
problem for probably 4 years now.  It's not just the ED but my sex
drive as well that has gone down the toilet.  Probably a good thing
since I had to move back in with my folks because I had a seizure while
living alone a couple of years ago and smacked my head on the tile
during a seizure.  I didn't get found for nearly 2 days and another 24
hours or so until I came to.

Anyway... I can handle the high dosage due to the fact that my body
metabolizes meds too well.   My liver functions are fine and my levels
are only middle of the road (11-12) with the high dosage.  I have to take higher med dosages for anything because it never reaches my system.  I don't
really know what to think about my sex drive.  I just don't care
anymore. 

I guess the question is the massive dose of Lamictal causing the drive to disappear.  I'm 31 and single and should be a walking erection.  The drive is almost never there anymore but worse is not knowing if it's going to work when needed.  Sometimes it does and sometimes I couldn't achieve an erection with a popsicle stick and a rubber band. My social life with my freinds suffer because I will not let anyone set me up and just don't have normal relationships.  Best friend is a female and naturally tries to set me up and I'm damn sure not going to embarass myself with the chance of EVERYONE finding out. I've used the 'lil blue pill and it works great but isn't exactly great for an unplanned encounter.  I don't know what's worse, not having relationships or what everyone thinks of me for choosing to be alone.

I really don't know if I should screw around with my meds to regain my sex drive or what road to take as far as different meds.  I guess I'm bitching more than questioning.  It's just irritating not to have a normal life and not know how to deal with it. I believe my folks think I'm a closet homosexual, not that I really care.  This is frustrating!  I've lost interest in nearly everything I've always enjoyed but that's another story I guess. This is just another one.

Re: Sexual Side Effects

 Man  to man or any woman watching in. I'll get it up no problem but I'll blow my wad in no time. Sometimes before I even get in my wife. I'll do what ever it takes to get mt wife off. She needs to drop some weight so she blams herself that I don't enjoy sex as much as I used to I'm 55 now. I blame the meds carbatrol & depacote. We're going to see my nero next mth and we're going to see about some of those hardon pills maybe they will help but not hurt my sez control which has been pretty good latly.

Re: Sexual Side Effects Men & Woman

I say it goes with men and woman everyone.  And Even when I'm not on med's I think the disorder makes me have low Sex Energy because I'm exhausted all the time from constant Ep Seizures.  MY diagnosis is new this Nov. so maybe I can better comment once we get it under control.  Your not alone.

Re: Sexual Side Effects

  my wife doesn't the meds side effects i have to take. I told her to take have what I do and tell me how she feels after a few days. No deal.Yet I have to understand PMS & now menopause.Like my father in law said "you've gotta learn how not to listen"

Re: Sexual Side Effects

I suffer from TLE and have done all my life. I am 29 and have suffered from sexual problems that I feel my medication cause. I take Tegratol Retard and have been trying various secondary drugs. I have a suppressed sexual appetite in general but most importantly I get erection problems and have done for most of my adult life. I have become pretty experienced with PDE5 inhibitors like Viagra and Cialis. They really are not that big a deal and work for many people really well. The biggest problem is planning. That is the main challenge facing me. I split with my long term girlfriend who was very supportive of my problem and I have been very shy about meeting anyone since.

For most men in my position I advise them not to feel any shame in experimenting with pills to help them. They take away the performance anxiety you get when you think you might fail. Knowing you might not be able to hold an erection if she gets too close is the worst feeling in the world. It will make any depression worse and that my male friend just makes the problem downstairs worse!

You are epileptic and your drugs may be causing you ED symptoms. Diabetics often have the same issues as us its just more widely acknowledged by their doctors. If you meet a woman you wish to be with she is going to have to accept you are epileptic at some point right? I think your epilepsy and the AED drugs are a good enough reason to need a blue pill - she will understand. You are a patient with needs don't be ashamed to explore things that can make you and your partner happy because of some male ego issue associated with taking male sex pills.

Re: Sexual Side Effects

Hello, I've been taking primidone (oral), clorazepate & lamotrigine.  I've lost an interest in sex for the last 5 years (when I started taking clorazepate).  After that my dr changed me to another med: primidone.  Which caused my problem w/ keeping an erection.  b/c of this I had to force myself to have sex w/ my wife after feeling guilty for not having sex w/ her.  I was embarassed/ashamed.  Recently had surgery on the left temporal lobeto resolve the issue.  I've been seizure free for 6 weeks & started to read ever post in this discussion/topic & realized I'm not alone.  some people have stated to not take the tegretol & they have been able to perfom w/ satisfaction.  I thought I would give that a shot.  So I did what someone else stated (not taking tegretol for 24 hrs & they had success).  It's been 26 hrs & for the 1st time in 4 1/2 yrs, I BLEW MY WAD!! & kept my erection (w/o the need/assistance of masterbation) for 25 min!  Which was the best I've felt in 5 years. My wife doesn't know about the idea of not taking tegretol, she was so happy & excited as well,  but I am going to start taking tegretol again so I don't have any seizures (my dr stated that I am going to be on the same prescription for 2 years then decide what changes are needed).  I am not telling you to avoid what you were prescription, but this one night to me was worth it.  Check WebMD to see your side effects are on the meds you take, that's what I did. If you chose to do so good luck, but don't blame me, I am just stating what I decied to do for myself & wife, not you.  But good luck on whatever you decide to do!!!

Re: Sexual Side Effects

I am soooo glad I've found this site, as well as everyone's courage to share. The lack of sex with my husband, who is epileptic, is something that I could well say, has torn us apart. For many years I thought it was just the humdrum of everyday, financial stress, and him just turning into a couch potato a-hole. I regret (not really, can explain) many of the choice I made, until I researched and concluded that most of his behavior and reaction was do to his medication. We've been married for 13 years, we're 35 and 36. In our late 20's he had seizures for the first time in over 7-8 years.  (when I met him, he was on 200 mg of dilantin-we were bunny rabbits, now he's on 600 phenytek, went down to five, I'm a lonely bunny). His doctors increased his medication. Mind you, he had three children before we were married, in his late teen's early 20's. No problems. We tried to conceive for four years until we had one. (I just finished reading the forum on low sperm count-grr). I even had laproscopic surgery, and the doctor said I was fine. Never could figure out why I hadn't conceived up until then.

Beginning in 2003 until 2006, we had sex 0, none, nada. That wasn't floating with me. He had had his medication upped twice in that period. I only noticed that he was more irritable, short, and standoffish with me. Yes, I committed adultary I know that didn't help, but we'd been down that road when we were younger, he's very attractive, and so am I). I thought it was just him being mean, using my weight as an excuse (I'm not even overweight to the slightest, and I'm very cute- that's what people tell me anyways). It took me thinking back about most of our blowup fights, no sex, he won't even let me touch him. It was the medicine.

It's as I've told him so many times, I'm not on medication, I don't have an issue. His unwillingness to embrace a solution is my issue. I've even laid it on the table to open our marriage up. That would be too much to him to admit that his drive is gone, and permit me to cheat. I don't see it as cheating, I'm maintaining. It's my self esteem, dignity, and pride that has suffered in all of this (I am human, I have feelings, and he acts as if I have none). We haven't slept in the same bed for 7 years. He snaps at me alot (cusses loud in public, it's embarrassing), and the way he rejects me sexually use to make me so angry and hurt that I would just go out and "get r done".

I have alot of inner anger with myself about my reaction, my intellect, and realizing it took me so long to put the two together. I think I missed it because it's not the type of medication that makes him "high" so since there's no visual physical effect, besides lack of seizures; we both missed the physical/mental, lack of sex drive due to his medicine.

After lots of researching, convincing him that his medicine was the issue (I miss my husband. I didn't marry him like this. Never would've even dated him if he treated me the way he has over the past several years, let alone..), he switched medications. The only problem is, switching, then decreasing the dose (phenytek), hasn't helped. At first, he said he noticed the difference and felt as if he had more energy. We were out to dinner (which is rare, we never go out together because he doesn't want to go anywhere and do anything, yet he works out three nights a week) he told me he noticed he felt more energetic. I got all excited and thought, yes, straight to the bedroom-check please! Nope. Three months later. Since, it is August, and we haven't had sex since December. That was twice.

I can't live with yearly sex (I'm going through my peak, and sexual frustration on top of everything else is no fun). Yet, my friends who understand suggest that I go on anti-depressants to deal with my feelings about our relationship issues! Uhh...no. I don't need medicine, I need him to make love to me like we use to (at least once a month), I need intimacy (I miss him. We don't even hold hands, can't touch him, he folds his arms in or tells me to sit somewhere else in our living room). There goes the anger button again. I want him, I even fantasize about him, which he thinks isn't true. I do. I miss him so much. It took me one night that scared me to pieces, being with someone I know, for the first time to realize I didn't want sex with others, or release my frustration with others-I wanted my husband.

I'm so glad I found others with the same issues. I try to talk to friends about it, but I get the old, "just get naked in front of the tv, that will fix it". People who don't deal with someone who is on medication like this don't understand. I'm at a crossroads. Yes, I've "cheated" when I felt the internal scream to be wanted and feel human, but I don't want us apart, either. We don't know how to survive without each other. It's hard to convince another man that doesn't understand that I am not being some ungrateful, cheating wife (if I'm in a bar, I get the typical, "what's a beautiful girl like you doing out w/o your husband?" Dare I spill it. When I have, I get a 'Yeah right' reaction. Plus sometimes, 'shoot, if you were waiting for me at home'. They aren't on medicine and don't understand. It's not that simple as my looks. We  really do have this issue. It sucks, it hurts. I feel alot of guilt because I don't want to leave him "in sickness and in health" as I promised not to. But our relationship is extremely unhealthy for me (lot's o liquor for my once a year 1 night stand treat), and I'm not so selfish about his health to risk him going off of his meds so I can get it for a minute.

Guys don't get that toys are not human. I miss him so much and it hurts so bad. He won't own up completely that the medicine is the problem (There has only been two times in 13 years that he's lost an erection, and one was last year), he has zero drive. He doesn't drink alcohol, either. He told me this morning that he wants to try another medication, but he didn't say for our reasons (we've been together long enough, I didn't need a romeo and juliet show to read him). I just know, from what I've learned, no other medicine is going to fix it all. He thinks that if he goes back on dilantin, we won't have all these problems, but I just don't know. I guess I can wait to see (I wait long enough, for years on end).

Alot too is that he doesn't know anyone who has the same issue. His mother is also epileptic, on medication, and shared with him that she switched medicines once because she noticed she was becoming anti-social, not in the mood to do the things she use to enjoy (going to church, etc.). She tried to help a little, but she's not a dude that doesn't have sex. The worst was in the beginning, trying to unload it all on me. Blaming me for why he didn't want to. We're educated but I don't know what feels worst, fighting about it when we didn't know, or fighting about it now that we do.

Re: Sexual Side Effects

Hi all, Is there anyone who has faced some problem with erection because of these medicines. I have been taking this medicine for last 2 yrs and lately my sex drive has gone down and I also face some problem with having and maintaining erection. I am not able to figure out the reason behind my disorder. Is it because of these medicines or is there any other reason behind this disorder. I got some information on ED and ED related drugs on the Cialis website (link removed by webmaster). Should I have this medicine to get over my disorder or should I try some herbal medication. Is there anyone who has faced such problem and can share his experience with me? I will be grateful if anyone can shed some light on this and can suggest me what can I do.Thanks in advance for any advice.

Re: Sexual Side Effects

I'm 23 years old and I've had three seizures in the past four years.  My Neurologist prescribed me Topoamax, and since I've been taking it, my sex-drive has been virtually gone.  Not normal for me or for any other young, 23 year old.  I find it difficult now to perform sexually, thus causing me to be depressed in the long-run. Not sure if these are normal side-effects or not, but it sounds like I'm not the only one.  I'd eventually like to be taken off of the meds though, as I've been seizure-free for about a year now. 

Re: Sexual Side Effects

I thought I'd add a few comments here since this is a very important and potentially explosive issue.  I'm the one with epilepsy and I'm on 3 different meds, sometimes clobazam too when I feel an aura's coming on.  I'm happily married but my sex drive is pretty much dead.  Maybe my age is a contributing factor - 43 years old - but still I feel the AED's have a lot to answer for. 

My wonderful husband has accepted that sex probably won't feature much in our marriage anymore but we have discovered something else, something far more satisfying:  holding each other, cuddling, stroking and kissing and talking together is amazingly sensual.  Why is it so important that intimacy involves sex anyway?  This way I've got to know him better than I ever imagined possible; ok, sex isn't involved, but that's ok - at least for us.  

I write this because I realise how important a good sex life can be but there are other options as I've described above.  One more thing, and this is for you fellas, women (I think it's fair to generalise) love to feel loved and you can do that by simply holding her and telling her she's precious and wonderful.  Non-sexual intimacy can take you to enormous sensual and spiritual heights and who knows, may lead to sex if both want it.  A relationship/marriage can be so happy and fulfilling once the stress of having to perform sexually  loses its power over you.

My comments aren't designed to lecture or patronise and I hope i haven't come across badly, but please feel hope.  Sex just isn't as important as human beings are led to believe.  That's my experience, anyway.  I hope it's ok to write all this in a male thread.

Love, Lucy 

 

Re: Sexual Side Effects

I hope someone is still reading this thread.  I've tried every drug available for my simple partial seizure syndrome, and the only ones that work are Dilantin and Lorazepam (primary, secondary).  I've been taking them since my first seizure in 1984.   My seizures are perfectly in control.  However, I suffer significantly from just about every side effect ever documented for Dilantin (that's a long list).  My neurologist says I am extremely sensitive to these drugs.  In the last 3 years, I developed ED, and my neurologist and my internist have jointly concluded that Dilantin and Lorazepam are  the cause.  They administered lots of tests tp see if there might be another cause, but everything checked out fine.  I've tried various therapies and supplements.  Viagra and Levitra don't work.  Nothing helped.  I'm 56 and my wife is 53.  I'm in good shape and she's in great shape.  I am very thin and trim, I don't smoke or drink, and I have an extremely healthy, low fat diet.  I do everthing I'm supposed to do.  Bottom line:  I can't get an erection, period.  My wife and I used to enjoy sex together a lot before the ED, and she almost always had  an orgasm during intercourse, so we were well suited to each other sexually.  She never really liked foreplay much, didn't really like cuddling, and didn't like sexual toys much -- she liked to get right to it.  For awhile, we tried various things to see if could get stimulated, but it was pretty clear nothing was going to help.  She shows no longer shows any interest in me sexually.  The Dilantin side effect of unwanted body hair (on my chest, back, shoulders, and abdomen) has really hit hard in the last few years -- I'm not quite Robin Williams, but it ain't pretty (no it's not just aging; no male in my family looks like this).  It's just too thick to get waxed, so it's a turn-off for her in addition to the ED.  I can't get her really to talk about any alternatives to intercourse, even in couples therapy.  She has said during therapy that she doesn't want to go the rest of her life not ever again having intercourse.  Don't get me wrong; she's a terrific spouse in every other way and has been very understanding and supportive of my afflliction.  But we can't seem to get past this issue.  No way I could tolerate her having an affair to satisfy her sexually.  I'm pretty depressed about this, and my self-esteem has been hammered.  Are we through?  I'd especially like to hear from any spouses of epileptics (where the epileptics have low sex drive or ED), and who somehow might come across my entry, to hear some suggestions.

Re: Sexual Side Effects

I gotta tell you, it's not just a guy problem.  I realize that it is not so odvious in women, but my ability to orgasm is about zero on these meds (I can't believe I'm posting this on the internet!! But I figure I'm not the only woman with this side effect)

Bookbabe 

Re: Sexual Side Effects

Epilepsy is a serious condition...

Re: Sexual Side Effects

Hi,

Being in my mid-forties and only recently having got E, it is tempting to blame E solely for the decrease in sexual performance (from every other day to every other week).  However I do have to remind myself also that age is a big factor.  40's is bound to be quite different from 20's and even 30's.  Also  I find that desire is greatly reduced right after seizure's, but that it often does 'spring back' (tee-hee) a few weeks later and then comes back.  Hope this helps, especially to those who are new to E.  I am currently on Zonegran/Gabapentin. I would also avoid alcohol as much as you can.  My wife says anti-depressants often depress sexual function a fair bit too so you have to weigh them up, as with many things :)

Re: Sexual Side Effects

At least they make a little blue pill for men...women are just out of luck.  I am 26 and should be in my prime.  Married les than 3 years so we are still in that honeymoon period, but it is no honey moon for me.

Re: Sexual Side Effects

I know excatly what you mean I ve been married for twenty years in march and i have had more promblems being on dialatin, carmaphezapene or however you spell it and when i mention it to the doctor he looks at me like i am an idiot whats a girl to do to make our men happy.  susu

Re: Sexual Side Effects

Hello, my partner is an epileptic but has no seizures as he controls his epilepsy by not drinking much (if any) alcohol (and only a beer - not spirits) and going to bed early (anywhere between 8 - 9.30 pm). Even without any medication he has very little in the way of a libido. Is this normal for epileptics? Thank you.

Re: Sexual Side Effects

/discussion/962138?page=1  Response to annep on Tue 02/10/2009 - 4:00am  Re: Sexual Side Effects
February 10, 2009 4:43PM PST USA  at end of page 2.   12743 views      78 comments

Hi annep,

Yes, the likelihood for lower than average libido for people having epilepsy is much greater than
general population, especially for people having temporal lobe epilepsy.  People with chronic
temporal lobe epilepsy frequently have decreased libidinous and genital arousal. ("Behavioral Aspects
of Epilepsy" Schachter, Holmes, Trenite 2008 ISBN: 1-933864-04-4, page 212).  The other extreme of
excessive libido for people having epilepsy is fairly rare and occurs more frequently in females
than males in this rare group, and occurences of this after surgery for epilepsy is often labeled
"Kluver-Bucy syndrome."

Anti-Epileptic medication for Temporal Lobe Epilepsy with near zero libido often increases libido
to a higher point that is still way below the general population, but closer to the point where the
medication typically lowers the libido of "average libido" epileptics.  Lower libido and lower
genital arousal often are together, but not always.

The social stigma for zero libido and excessive libido seems about the same in the ages of the
teens to the early thirties in this USA society. For me, my life-time Temporal Lobe Epilepsy
gave me near zero libido, which seems to have resulted in a lot of untoward overtures from other
people (from teachers, ex-priests, and other outstanding moral members of society, and others)
especially since my epilepsy didn't limit genital arousal at all (i.e., I didn't much know or
desire what I was requested to do, but I could do it all night throughout my teens to early thirties,
with the arrogance of Tadzio and mischievousness of Puck, as noted earlier).

Re: Sexual Side Effects

Michael

Women are beautiful and it is amazing to be able to see that again.  (Quotation from above.)

If you say so, and I accept it's true.  I can't see it, even when it's pointed out to me.  With other males, it's the same: I can't see attractiveness, and never could.  It's almost like being colour-blind.  If I were colour-blind, and were asked to compare shades of green, say, I'd have to say it was impossible.   I actually ask people close to me, family etc, to point out people who are attractive and try to see what they're talking about.  No, I can't tell any difference.  It's not easy to get them to understand this, or even believe it.  There are some people, I know, who think I'm just being hyper-modest

An interesting book I came across a week or two ago is Irrationality, by Stuart Sutherland.  Early in this (p.8, I think), he refers to this lack of interest as sometimes a consequence of a type of disturbance in the right temporal lobe.  Guess where my TLE is - and it flared up at puberty.  It's possible that surgical removal of the disturbed area could change that (mentioned in the same book), but no thanks.  I've refused this nine times.  A possible side-effect, in my case: damage to speech and/or sight.  I'm a trained and experienced translator and interpreter, with two books to my name and a number of printed magazine articles, and have been all my life, since I was brought up to be bilingual.  So, the possibility of losing language: I dread it.  It's more important than sex (and I was married long ago, for six years, so know what I'm talking about.)  What I can't say is whether my ex-wife, or someone else since, was conventionally attractive.  Believe it or not, I've no idea.  That is the honest truth.  Yet I can see attractiveness in things or places, so I love photography.  But with people, I just don't see it.

Medication: Lamotrigine, Mysolin, Keppra.  These have probably nothing to do with it, or I can't tell if they do.  These didn't exist when I was 14, and I've never been any different on a whole range of substances.

Re: Sexual Side Effects

Hi guys

              I've had E for 33 years now in my 20's I was fine I'm 49 now when the dr. started adding more med's there went my sex drive I've been married now for 17 years and we have had sex about 4 time's I'm on tegetol 200mg 3 times a day neurontin 400mg 2 times a day limictal 275mg 2 times a day and keppa 250mg 2 times a day I have complex partial seizures and alot of aura's I would like my sex drive back but I don't know if I can          Take care Guys

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Re: Sexual Side Effects

Ohhhhhhhhhhhhhh....my gooooosh!!! I'm friggin' OUTRAGGED!!!!If you only knew how many doctors I've talked to about this problem!

PROFILE

Age: 35
Last Episode: 5 yrs ago, controlled w/ 300mg Dilantin before bed.
R. Temporal lobe thing attached in there somewhere from birth (no change in size) 
Male (SINGLE ;) ) Interested in: FEMALES!!!!
Excellent Shape (Outdoor activity 5 days a week, multiple activities, So I work all muscle groups)
ABSOLUTELY NO DRUGS!! A few beers a week & Some Red Wine w/ date of the month 

Diet: Mainly Organic foods, ALL Food Groups!!! (Vegitarians look like they take to many AED's)
Daily Vitamins: Folic Acid, Vit. D, E, B Complex, Multi and lots of C.
Drink 10-15 glasses of water a day.
I NEVER GET SICK.

OK, Lets go through the women history. I've been close to marriage about 5 times, slept with over 50 women in my 17 years of my sexually active life. I know how my body works and how the female body works. I am always learning more by asking the girl friends and reading books. Sex is unreal, it's my #1 motivating factor in life, it always has been since the early days of Wheel of Fortune (You know what I mean). I will do anything within reason to get it. The women I choose are all of upper class variety, well groomed, have an education and are all extrovertive type.

That's the days of old!!! To the day, I can pinpoint my greatest downfall in life so far! The day I was dosed up with 1200 mg of DILANTIN!! This drug is has painfully broken 2 reasonably long term relationships. The first was my girl friend of 3 yrs, because of buddy not performing up to standards. Loss of erection during sex (Even got rid of the condoms), I can't feel hardly anything, the sensitivity is gone?? Then I get stressed, this compounds the problem. OK try again in few mins., up again (like 70%), no problem though, I'll just squeeze at the base and in we go (Once i'm in, I should be back in action right???) NOPE. She says, "you have to get off those meds". Dam, out of action!

Ladies, listen up! It's not about performing in the sack that breaks the realtionship. Its an array of problems in life that lead up to it. Sex is how you say, it's alright baby, I'm all yours, things will get better! If you can't perform at critical times, doubt begins to creep in her mind and festers there until the next problem arises. Relationships need this mechanism to smooth over those minor problems and keep the ball rolling. So please don't comment about how she should really love and care for you even without it. SHE DOES TO THIS DAY!!!

Next up! Maybe it's not the drugs, maybe it's a case of relationship burn out (ie: im not attracted to her anymore) I've been with the same person for 3 yrs., maybe I would like to experience a new person? OK no problem, I'll do a test (we are not together, of course!!)

I find my sexual dream girl (Yah, whatever, It's just a test!) I pre-plan my attack! Coffee shop barista (ex dancer) 26 yrs, 6'2", sexy glasses, librarian type, perfectly manicured everyday! She knows nothing about me, I know just what she looks like and what she does! It's true LUST at first sight! Willy goes up, all is good, he works for now! I get a coffee and sit down. The dramatic stares continue and she says she's off in half an hour!
Hop in the truck, down to her place 2 hrs. of foreplay and into the bed. No c-dome, ahhh I want children anyways, friggin' dilantin and that memory loss, so much for pre-planning- shes perfect right? Willy is up a bit, down, but never at 110%!! Dam, what is going on? Come on, I'm super relaxed, with my dream and nothing! She says "all the guys i'm with always get to nervous around me and can't perform at first, it ok baby we will try later". Come on, i'm the most confident guy in situation like this, im always in control. Somethings wrong!! "maybe you should get some blue pills, they work great she says." ohhhhh...ummm, maybe Its a good thing willy's not going up, I'll be bringing the domes next time.

Off to the doc. What's up doc? here's her picture in a bikini! He glance at it in amazement and then gives me a blank face stare (Like I don't know what is going on in his mind right now, were all human right). He says " the book says nothing about sexual side effects, and I have had no other complaints." ummm. ok doc. When did they do the tests? in the 50's when sex was outlawed, in the 60's when there were no problems with sex in society because everyone was high? or in the 70's when monkeys were the primary testing source?

TIP FOR ALL GUYS: Morning Hard ON'S are a sign of your overall health. All of us should be 110% when we wake up! Im not!!! Im sitting around 70% unless I do massive cardio the day before, even then 50/50. 

I try and try again with the sexy barista, sometime with moderate success other times nothing. Then I started to practice at home a little more and the same response (xxx movies and all). Then I completely cut out masterbation hoping that would increase sensitivity, bahh, forget it!!

I go to another doc., same response as before. Guess you guys don't do very much research, huh? Case study right here! Hello? Send me down to the University Campus (haha)

Dillema time: New date this week.. What to do? Stop taking Dilantin? Blue pill? Claim religous beliefs? Or go all in with my pokka face? I'm going GAGA! I'll let you all know how it goes. Only taking 2 pills tonight.

DILANTIN = Single and Stupid.

LOL: As I'm writing this, the guy in the appartment upstairs is ontop of his wife. (He's in his 60's and looks like Santa with rosacea)

This is terrible, just as bad as loosing your drivers license (70% of us still drive without though), loosing your career, loosing your marriage or long term relationship and loosing respect for the doctors who care for us.

Give me some real feed back! I want facts! I want the truth! and I want a real women!

Here's a little tip for all: Tell no one about your problem even yourself and you might not have a problem!
GET HEALTHY EVERYONE - READ BOOKS and be CRITICAL THINKERS not assumption makers!!!!

 

To the webmaster: You should not edit this document and allow freeflowing thoughts to occur on this page. Perhaps a little fun will generate some interest publicly and we might all learn a little more.

Cool Beans....

Johnny!!

 

 

Re: Sexual Side Effects

Hi Johnny,

   Trust me, it's the meds. But you shouldn't go off of them, nor adjust your dosage. Your health is more important than macho status. I wrote on here (8/09) a post about how the med has affected my marriage and sex life. I feel for so many people dealing with the issue. It's awful. Especially when you don't know what's wrong, or are the one on the medication and fail to acknowledge that it is the case. The medicine causing behavioral/mood issues, and sexual issues. I truly wish my husband would "man up" and deal with it. It's costing us, and our family. I'm actually at the end of my rope and ready to move on. For so long I felt as if I was kicking him when he's down; but in truth, his "sickness" is making me unhealthy, and after 15 yrs. of marriage; it's me time. Good luck to ya.

Re: Sexual Side Effects

Try Ciallis. if that does not work then next is Levitra and even that doesen't work then you should take Viagra.

You should speak to your doctor before taking them.My husband have the same problem.

 Good luck

Re: Sexual Side Effects

I would say it's nice to now that someone near my age is having the same issues but that's not really the case.  I wouldn't wish this on my worst enemy.  I have been on other meds other than my epi meds.  I've taken some sort of pain meds for the past 10 years.  I have degenerative disk disease in addition to 3 ruptured disks. the pain has always been unbearable until recently.  I have naturally had a ton of epidural injections but recently I had a radio frequency neurotomy.  Basically they stick, in my case, six catheters into my spine and insert electrodes into them and burn the nerves.  I have FINALLY been able to lay off the pain meds.  I have also laid off of any of the benzo family.  I still have to take them occasionally but have learned to do without them.  I took them because there are no sleep meds that work for me and insomnia is probably my worst seizure trigger.  That and an awful case of the shakes have caused these drugs to be prescribed.  I am a pyrotechnician and I guess it's the adrenaline that causes me to shake out of control.  I must have complete control handling explosives.  The tremors get so bad I can't even write my ignition times on a piece of paper.  Choreography is pretty important  in by work.  I know! An epileptic pyrotechnician with uncontrollable tremor makes you feel all warm and cozy.

Getting a little off course... Since the departure, or at least the massive reduction, have allowed my ED issues to diminish somewhat.  Until someone comes up with a new drug, the use of occasional Benzos are a must.  I have learned to deal with the shakes on a normal day to day basis.   The problem of sex drive is still there.  I just don't know if that is due to the Epi meds or not.  I believe the actual remaining ED problems are psychological in that I have gone so long in fear that I cannot perform.  I don't know if I can ever shake that.  It's kind of frustrating knowing that ED was a legit medical problem to now just a psych issue.  

 I guess what I'm getting at is that I am just wondering if anyone knows of any meds that might either rejuvenate my drive itself.  Even better if there is an effective AED out there that doesn't cause such outrageous uncontrollability of the shakes.  I would give up sex altogether if I could just gain control of the constant tremor without benzos such as xanax or valium.  They are not meant to be taken on a daily basis and that was one of the main reasons in my decision to cease taking them.  I can't write very legible at time or even at all sometimes.  I have to live with the fact that I can't sleep and must be very careful after 3 days of no sleep.  I can almost guarantee a seizure.  Whatta ya do?? Safe meds don't work and I will no longer use a narcotic med a a crutch.  I am leaving to go overseas until the new year for work.  There is a strong possibility I am going to work off shore when I return.  It seems I will not have the chance to experiment with new meds.  It will just be too dangerous and detrimental to an offshore position.

I don't know that I'm actually asking a question here.  I'm just bitching because I seem to be at my breaking point.  I sincerely apologize for that. I know this isn't an outlet for frustration.  I'm just scared and alone right now with this overwhelming amount of problems at a fairly young age.

Thanks for listening and sorry if this is inappropriate for this site. 

 

Re: Sexual Side Effects

Marksman - I can relate to your entry in part.  Until very recently, I, too, had terrible shakes that made writing very difficult and eating/drinking in public (and private for that matter) very embarrassing.  I recall an occasion when my husband and I were in a restaurant and he had to feed me because my tremor was so bad.

My epilepsy nurse suggested Keppra and to gradually wean off depakote which was, in my opinion, the main culprit for the shakes.  I've made great strides with  keppra and lamictal while reducing depakote with a view to discontinuing altogether.    Lucy.

Re: Sexual Side Effects

Don't go w/o your meds, even if you've been seizure free. The freedom is due, probably to taking your meds. As I am discovering how much the medication is affecting peoples' sex drives; power will be in numbers. Be honest and truthful with your provider, maybe we can all get a push for a drug that doesn't impede the drive so much. It is a hard subject for men to own up to, just try. You would not believe how many people you may help, including spouses/partners of people with the same issue. Good luck to you.

Re: Sexual Side Effects

Im also surethe medication affects my own sexual performance which is very frustrating. I agree that people often brag about doing it 4 or 5 times in one night - never been able to do that, maybe as a teenager when mastrabating.
I do get errections but struggle to keep it up thruogh intercourse - embarrising. This started after I changed medication and surely this is not mere coincidence. (Changed from Sabril to Epilum and lamictal and problems started) My wife is a brilliant beuatiful person that accomodate all of this and i try to keep her sexually satisfied/extatic through oral sex, she loves that!!!

Re: Sexual Side Effects

(a)abort (b)fail (c)retry (d)throw computer against the wall
southern and proud of it

I know the meds affect my libido and it all when I started on Topamax.

I've been on 6 meds since Topamax but it works best to control me but not  altogether.

I said something to my neuro once he made a dumb remark to me about it.

 

   Belinda
 

Re: Re: Sexual Side Effects

George - NYC

Jack--I respect you for your honest comments about the difficulty in keeping an erection when taking anti-seizure (and anti-anxiety) pills. Women are beginning to express themselves more explicitly when it comes to how they're "on track" sometimes and just have no interest or ability other times. Then too, so-called "normal" men aren't always able to keep things going down below as they were as 16-year-olds! Just look at all the TV spots having to do with prescription drugs that'll temporarily assist with erections. However, the law does require advertisers and manufacturers to print or speak of the negative side effects of all such drugs. Pay attention to the next TV spot you see, for it sounds like there are more negative things to worry about than those moments of sexual inspiration! I'd avoid those sexual-stimulant pills entirely.

-- George

Re: Sexual Side Effects

I've had epilepsy since 1988, but have only recently went on
conventional meds to control my seizures. In Sept. 2007, I
started with Keppra and Dilantin, but phased off Dilantin a few months
ago. I have noticed zero sexual side effects from each of these,
but after reading this thread I'm a little worried I will. I
don't want to brag or boas,t but satisfiying my wife seems to be even
easier than it used to be when we started dating. If anything,
her sex drive has lessened, but not since I've began having grand mals
(8 years ago). Her sex drive lessened consdierably after having a
baby (5 years ago), but mine is still practically non-stop.
Admittedly, I have been pretty obsessed with sex since I've been an
adult. I'll try not to let this psyche me out too much.
Good luck everyone with overcoming these side effects.

Re: Sexual Side Effects

thank god i'm not the only one who has a high sex drive.

 yes i'm not a guy and i do feel for the men on here who's sex life has been affected by their medication but mine hasn't changed one bit since i lost my virginity i've had a high sex drive for longer than i want to remember but yet my husband finds it hard to satisfy me. each person suffers the E differently but mine hasn't affected my sex drive. the doctors really need to investigate this further. good luck with getting your docs to listen to this.

 sex is a big part of my life i couldn't live without it as many of you couldn't either but i also don't drink alcohol or smoke. does any of you guys who posted drink alcohol?

 

Re: Sexual Side Effects

I have had epilepsy for 20 years now. I think a lot of men as they get old loose their sex drive due to becoming lazy. Being just a bit overweight and not working out makes a big difference. Try maybe eating right and a little excercise. just my 2.....x

Re: Sexual Side Effects

Michael

I hadn't so much as noticed, or thought about it, that I hadn't been involved with anybody, in any way, for around 20 years until I overheard a radio broadcast sending a warning: have impotence investigated.  It could be a sign of worse things, a useful - even vital - warning.

So, off to the medics locally, who referred me on to an endocrinology department in a hospital some distance away.  The result of tests: for years, possibly, I'd been producing no testosterone and no natural Vitamin D.  I was lucky, for they found me on the very verge of developing osteoporosis, through lack of testosterone.  I've been on male HRT for close on a year now, with injections of Vitamin D at monthly intervals.  I can't recognise myself from the person I was until recently - and others scarcely recognise a very different person too.

Still no ability to see physical attractiveness in anyone - as opposed to attractive personality.  I don't know if that's going to change, for I never could see it.  As requested by the hospital, I'm providing reports and samples for use in an international research project.  I owe them a favour, many times over.

So, I have to stress it to other males (and females too?  I can't say.).  Any impotence that lasts more than a reasonable time - report it.  Better a blushing session, if that happens at all (it probably won't, for the doctors have heard it all before) than a mix of epilepsy and osteoporosis.  Think of it: it could mean risking collapse in seizures, and a higher risk of fractures when you do collapse.  Isn't avoiding that - or worse - well worth a blush or two?  See the medics is the message.  Embarrassment or loss of male pride just isn't worth it.  It could be a severe physical disability following injury, or worse, you're at risk of.  If it's a consequence of epilepsy medication or not doesn't count if you find yourself in a wheelchair.  Have it investigated. 

Re: Re: Sexual Side Effects

Hi there Jack. I also have the same problem and i'm on the same medication as you my g/f thinks it is just me, but i told her it might be the medication and she just says you can fet it up but after 5mins or so it starts to go down. It really pisses me off.

I haven't really bothered to

I haven't really bothered to search the net for information about medicine affecting erection until now. I was starting to get desperate and worried that it was something wrong with me, but it seems I'm not the only one who might have a problem.
I am rather sexually inexperienced, and haven't been able to get it up at all at intercourse.
Oh well, I might as well go thru the embarrasing detailed parts since one is "almost" anonymous on the net:
During foreplay I can manage to get really hard, and it feels like the problem doesn't even exist. But as soon as we are about to start the intercourse, I almost start to get numb, it's like there's no sensation and almost no feeling at all.. then it just shrinks. With some caressing and touching, I might be able to get it up after a while again, but not long enough :(
I don't know if partly this might be due to my inexperience being with a girl. I usually never have any "problems" with masturbation though..
I'm currently on Lamictal, 200mg/day. But you're basicly saying that the majority of medicine do this? I don't really want to cut down on the dose without consulting a doctor, but I really really don't want to lose this girl. Though I understand that change of medication just isn't possible overnight.
I might try to delay taking my medication for half a day or so, and see what happens... Or how long does most medicine stay in the body?
Other than that, you're not recommending use of different kinds of pills to gain erection?

Re: I haven't really bothered to

I started on Epp medications, decereasing erections started and when I had grand mal I started to loose interest in sex. I had experienced sex pills and go off before inserting.
The best is the needle 100% when buy you get directions and it does not hurt, then you have 4 a night
You will have many Babies, like a bull in a paddock.

Best of luck

Re: Female Sexual Response

Hi -  I didn't read all the comments because there are so many but I wonder if you have discussed female sexual response.  I am 42, have been on seizure meds for 11 years and they definitely have had an effect on my sex drive etc.  The worst was being on Neurontin for 5 years.  Not only was I never horny that whole time but I couldn't get off by myself either, even when I bothered to try.  Then one day, I went out of town & forgot my meds for a 24 hr period.  The next morning I woke up and suddenly felt *alive* !  I realized that the drug had been suppressing all kinds of my feelings, not just sex.  So I switched to Lamictal and all of a sudden I could get happy, excited, sexy... even have orgasm.  Huge improvement.  Unfortunately, Lamictal doesn't do much to prevent my seizures :( but I guess you can't have everything...

there's my 2 cents

bunnydog

Re: Re: Re: Sexual Side Effects

I can't say I have the same problems you guys have sexually. I can only say that it takes my husband much courage to make love to me. I have complex partial seizures and black out. I have left him with black & blue tits and left marks on his arm the other night while in the hot tub. I think he must really love me to take the chances he does. We just joke about how wild our sex is when I have a seizure. hehe. He is a great guy.

Re: Re: Re: Re: Sexual Side Effects

hi cathy -
i want to cheer for you (and husband too). it sounds like you've put a great interpretation on things. it's just a pleasure to see people deal well w/ the challenges that E can put in our lives. i love to bike; I ride pretty much daily and usually do 6,000 miles/year. I have been asked many times how on earth I can ride if I have E. that's easy. within reason, it's just not going to keep me from doing things i've always liked to do. cheers again for you both
jim

Re: Re: Re: Re: Re: Sexual Side Effects

that is exactly it. My doctor used to not listen to me and just say, "just live your life" and I wanted to tell him, but I am. I dont' let epilepsy stop me from singing in front of people, cooking, driving, walking. You can[t stop living just because you have a disibility. It doesn't consume my every waking thought because then I was just be Sarah, the epileptic, rather than just Sarah.

Re: Re: Re: Sexual Side Effects

I know this is the men's section, but thought you might appreciate a woman's opinion with the opposite problem. I'm epileptic, yes. There are times where due to seizure meds intercourse can be very painful for me.
Luckily my boyfriend of 5 yrs (5yr anniversary is in a few weeks actually) cares about me lots and doesn't force anything. Here's a suggestion though.
At first I was like, huh? and all put off when he suggested this, but it has actually helped us.
As a part of foreplay we use not only KY on him and me (to loosen things up a bit), but we also bought a little mini vibrator. That loosens me up enough that it's not painful for he & I to be together.
Perhaps you men could use that as a foreplay to make the woman in your live's pleasure last longer for them, and it might be a turn on for you? Or, perhaps use a vibrator between round 1 and round 2. Tell the women what can be done in between to make things better for you.
Also, for me and the guy I'm with (and he'd kill me for typing this) some times just an amazing massage with some great massage oil from him is just as enjoyable as intercourse - there are other ways to satisfy the one you love.
Get creative, and try to show you love the one your with in other ways.
~EC

Re: Re: Re: Re: Sexual Side Effects

EC: I have the same problem but deal with it differently. For me, taking 400 I.U. of vitamin E DAILY helps a LOT. I even mentioned it to my sister (we're both about 50 years old), and she's found it helps too.

Further, for you guys, sometimes the medicine makes a difference. I took Topomax for a while and couldn't get enough sex. However, I have heard that it can cause a person to go overboard and not be able to think of anything else. I would suggest trying a small dose at first. I know it has been great at controlling my grand mal seizures, so that's a plus, too.

Re: Re: Re: Sexual Side Effects

That's an awful thing for her to say. I'm a newly married woman and my husband was not pleased to find that my new seizure meds elimitated my desire for sex. A different problem than yours, I realize, but still equally valid. I am no longer on that medication but I still hear about what an awful a wife I am for not wanting my husband more often. It's frustrating and unfair. I can't help this.

Re: Re: Re: Re: Sexual Side Effects

You should be ashamed of yourself! Newly married or married for over 50 years, if your husband cares more about sexual pleasures than your health I feel sorry for you! I've had epilepsy for 45 years and the most important, caring, loving thing ever said to me was when he asked, "Now is there anything I need to know so you don't have a seizure?" Don't you remember your wedding vows - In sickness OR in health. Take the medication that controls the seizures. That's priority.

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