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Old 08-21-2008, 02:34 PM
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Seizure Meds And Libido or just post seizure libido problems


Hi its Dustin again,

I wanted to bring up another problem related to seizure meds. Its something that I have noticed shortly after I started having seizures, and its a lack of libido. I have been on four different meds since I started my seizures: Dilantin, Tegretol, and now a combo of Topamax and Lamictal. And with all I have had a problem with libido. During my course of Tegretol I had my testosterone checked and it was way below normal for a guy of only 19. And my testosterone levels have been low ever since. I am now on testosterone replacement therapy to try and raise my level and it has. It also helped the issue with my libido untill recently. So I am not really sure what to do because there isnt really to many more drugs that I can take that control Grand Mal seizures. And doctors dont ever believe that its the meds that could be causing an issue with testosterone even though they have already checked every gland in my body. So has anybody else had a similar experience that may allow some insite.

Much appreciated

Dustin
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Old 08-21-2008, 02:47 PM
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I have been considering why my daughters hormone levels are out of wack. This is one trigger for her seizures (she is med free). I have been researching adrenal fatigue. This gland monitors I think most of the hormones in the body.

It might be a long stretch, but something worth looking into.

http://www.coping-with-epilepsy.com/...-fatigue-2748/

another would be to check with an alternative doctor and have heavy metals tested. They do a combination of blood and hair testing, and if there are any that are out of the norm, then there are some conversations going on in a few Yahoo groups that might be helpful. Most conventional doctors don't even know how to read these tests.
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Old 08-21-2008, 04:49 PM
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more discussions about AEDs and libido/sex
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Old 08-22-2008, 08:42 AM
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Hi Honey

I so relate to what you are saying, and I have come across alot of other people on anti-epileptic drug's that have had the same problems, I have never had a particularly high sex drive, but in the last couple of years, it has been non-existant! My poor fiancee never moans, he never pressurises me or anything, but I am feeling so very guilty for neglecting him, we are both 45, I know that will seem old to you, but wait till you get here, it's really not old! He has quite a high sex drive so I feel bad for the way I am feeling!

I'm on Keppra 1500mg am and 1500mg pm, I have read that Keppra can lower the libido so please don't think you're alone in the world. Keep smiling!!

Cheers

Elaine x
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Old 08-22-2008, 11:36 AM
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I've said it before but I'll say it again ......
Since Nov. 1, 1990 I've been on a lot of the anti-epileptic drugs but epilepsy had the biggest effect on my husband. It certainly changed HIS sex drive .... even his desire to hug and kiss me.
I haven't even been "allowed" to sleep in HIS bed.
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Old 08-22-2008, 01:39 PM
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When I was in my teens through my 20's I was on Mysoline, Dilantin, & tegretol. I don't think it effected my sex then. Now I"m just on Tegretol & I have a much smaller sex drive (of course it might just be age).

Dustin, I don't know if this is a comfort but I have to say that when I think back at some of the stupider things I've done in life it was when my sex drive was strongest that I did them lol.
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Old 08-24-2008, 06:24 AM
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Hi Nancy

Bless you, that must make you feel sad not sharing the bed with him? Mark and I are very tactile, we are always kissing and cuddling, and say I love you about ten times a day, it's not difficult to love him he is a beautiful person inside and out! I've just completely lost my sex drive! I'm 45, it's been a very strange couple of years, I lost a few jobs because of my epilepsy, the seizures got steadily worse before my surgery 2 months ago, I've been through the Menopause, then my dear mum died just before Xmas, and it's been over a year since Mark and I last "got together" he never pressurises me, he never complains, he is just great, I'm scared to now! That probably sounds stupid, there has just been so much going around in my head that it has taken a back seat in our relationship. I worry that I am going to lose him, but he assures me everything is ok.

Do you think the anti-epileptic drug's affect us girls in that department? I would love to hear from you.

Elaine x
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Old 12-26-2008, 07:29 PM
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I was on the topiromate ( now Topamax ) protocol at the Ohio State University many years ago and complained to my doctor during the trial that I had completely lost my libido and that it had caused a great strain on my marriage. I also participated in the Depakote (depakene) investigational trial and the Lamictal (lamotrigine) trial. The three trials pretty much zapped any testosterone I might have had and my doctor even gave me a sample of viagra to see if it would help me. It didn't. I don't even have any estrogen anymore.

Seizure meds might not cause a problem for other women, but they sure did, and do, for me. I thought the "six after sixty" cliche was something I should look forward to, but it didn't happen.

It's a dreadful thing that my husband got prostate cancer but he was treated at Cleveland Clinic and was cured. For that I thank God daily. But he can no longer achieve an erection, so it has worked out good for us in that way. Neither of us can perform any longer, but we can snuggle and caress each other and still say "I Love You" when we're not hitting each other with frying pans.
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Old 12-27-2008, 09:19 AM
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Originally Posted by Elaine H View Post:
Do you think the anti-epileptic drug's affect us girls in that department?
Definately! I'm 27 and have been on a variety of anti-epileptic drugs over the past 7 years and am currently taking Keppra and Lamictal. Before drugs, sex was on my mind just about all the time. My husband couldn't even walk past me without me grabbing his butt...Now, my sex drive is just about non-existant. Not that I don't want sex from time to time, but more often than not, I'd rather sleep. Maybe due in part to the meds making me more sleepy? or the fact that having a seizure just doesn't make me feel very sexy?

I read something about a couple that showed up in an ER; the woman was bleeding from the head and the man was bleeding from his man parts. The couple had gone out for a romantic dinner and she decided to slip under the table and give him a.....you know. During the course of this, she had a t/c, which caused her to bite him. In pain, trying to get her to unclench her jaw, he stabbed her repeatedly in the head with his dinner fork....Maybe it's a good thing that the sex drive decreases while on anti-epileptic drugs.

(sorry, if I offended anyone with the smilies...I just couldn't resist)
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Old 12-27-2008, 12:34 PM
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Maybe sex drive is touched by too many factors, not only drugs, but age and concerns ... My experience is that when I was about 26 (although I took more drugs than now) I was.. well... a was a young male guy... now I'm almost 40 and I'm always interested in sex, but I like may be more watching television and eating... is it Depakote ?
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Old 01-16-2009, 05:38 AM
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I think it's just certain anti-epileptic drugs that affect the libido.
Tegretol, and numerous other anti-epileptic drugs I've been on over the years.
When I was put on Topamax that killed my libido.

Belinda
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Old 05-18-2009, 01:36 PM
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Originally Posted by Elaine H View Post:
Hi Honey
I'm on Keppra 1500mg am and 1500mg pm, I have read that Keppra can lower the libido so please don't think you're alone in the world. Keep smiling!!

Cheers

Elaine x
I had a very frustrating talk with my neurologist today. I complained about the low libido possibly being related to the Keppra and he just shook his head and said no.

I didn't exactly have a raging libido before starting Keppra but its darn near nonexistant now and its very frustrating!

I used to like this Dr., but getting dismissed like this really ticked me off.

Has anyone heard if B6 supplementation can help with this like it supposedly does with kepprage?
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Old 05-18-2009, 01:58 PM
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Originally Posted by doclotus View Post:
Has anyone heard if B6 supplementation can help with this like it supposedly does with kepprage?
I can't imagine vitamine B6 doing any harm. Why don't you try it & report back?
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Old 05-22-2012, 01:16 PM
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Hi! Well I'd like to start off by saying that I've had E. for 36yrs. now so I'm very experienced with many of the meds new and old. I've also had to change many docs because none of the meds that they have tried on me seemed to help me with my seizure. Even so many of my docs have had to change my meds due to the fact that my body has become ammune to some of the meds which has caused much of my med changes. I'm currently now taking lamictal 250mg. twice a day, vimpat 250mg. twice a day, and serquel 350mg. at nigt time only. I have always taking name brand meds because that's what my docs prefered me to take because the percentage of the name brand out weighs the generic brand. My insurance started giving me problems with giving me the name brand on my lamictal, and vimpat. I was doing really well with my sex drive before I started having to take the generic brand. Except as soon as I started taking the generic brand my sex drive started going out of wack. I just didn't have the sex drive anymore, so I have not been able to keep a relationship going due to this side effect that I know these generic brands are causing me to have. My neurologist, and physiatrist keep telling me that the meds have nothing to do with my low sex drive but I went online and found alot of info. that has said that lamictal, as well as others combined with certain other meds are known to cause these side effects. My phycologist has also printed out some paper for me giving me info on the fact that my seizure docs need to start looking into these side effects that these meds are causing, because the printouts show that it's the meds that're doing these things to my mind and body. She says that they need to start listening to what I have to say on this issue, instead of admitting that something needs to be done about these issues. I hope this helps you to know that you're not the only one going through these same issues.
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Old 05-22-2012, 01:32 PM
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I had a Neurologist tell me hormones had nothing to do with my seizures.
Can we say QUACK!!

The endocrine system secretes hormones directly into the bloodstream, I'd have to say they are very much related or at least a problem in one can effect another.

Yes, they are related catamenial (spelling??) is female hormone related seizures. I've never looked into male hormone related seizures, so sorry guys. I would recommend finding a second opinion with a younger doctor, so many meds and surgical procedures have been approved in the US in the past four years. this one needs to do more than just read medical texts. My GP told me he had never heard of Vimpat before. What else is he behind in?

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Old 05-23-2012, 02:27 PM
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I've had similar issues. I take lamictal and trileptal, and noticed it got worse when my neurologist added topomax. we've adjusted levels here and there, which has helped some, but unfortunately, there's not a whole lot to be done. I've heard of some using viagra or such, but I havn't tried that or have I really discussed it with my doctor, so I couldn't tell you results or if it is safe. I would discuss that with your neurologist before considering that. maybe you can look into different seizure meds that might not have quite as much effect on your libido. I'm looking to get off the Topomax on my next visit to the neurologist...

good luck!
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Old 04-13-2013, 02:34 PM
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Hi again everyone!

First of all I would like to make some friendly comments, as well as questions on some of ya'lls post. Hoping that I can get somemore feedback on these comments, and questions. First, I would like to ask about the b6 that you talked was asked about. I've heard that some vitamins can help balance out some of the medication side effects. Has anyone heard of this? And if what doclotus said about the b6 might helping with keppra, could it be possible that it could also help with all the seizure meds? I've talked to my neurologist, about this issue, and like everyone says, he denies that it's the meds. It's so frustrating, because I know he's wrong. I take lamictal among others, and as I posted, before, I was taking the name brand, and then my insurance started giving me problems with helping me get that brand anymore. So I had to be put on the generic brand, I was fine with my sex drive until they started me on the generic. I complained to my neurologist, about this until he finally had them put me on the name brand again. Still even then I think because of the first switch it caused my body function to mess up, because even when I was put back on the name brand my sex drive, still never went back to normal. It still is the same, so I blame that one particular med. I've made up my mind that I want to get off that medication, and have told my doc so. After all like I told him I've been on that med for years, and my seizures are still the same. I've had E. for 37yrs. now, so I've had many experience with many docs, and meds. thoughout the yrs, and one of my experience is that when a person takes a medication for so many yrs. a body can get immune to the med. I could understand if my seizures, have improved, and then I would say it's worth it to keep staying on it. Except it they haven't, and I've gotten to the point where I'm looking up different herbs, that may help in this issue, it's like an obsession, I hate it!
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Old 04-13-2013, 10:58 PM
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Originally Posted by doclotus View Post:
I had a very frustrating talk with my neurologist today. I complained about the low libido possibly being related to the Keppra and he just shook his head and said no.

I didn't exactly have a raging libido before starting Keppra but its darn near nonexistant now and its very frustrating!

I used to like this Dr., but getting dismissed like this really ticked me off.

Has anyone heard if B6 supplementation can help with this like it supposedly does with kepprage?
Your doctor is wrong. He is going by what he read in the Keppra side effect profile provided by the drug companies. I took Dilantin for 15 years and never had any sexual issues (I'm male BTW). After switching to Neurontin and now to Keppra, my desire just went away and I've had other issues as well. This has me considering going back to the Dilantin, even though most docs try to tell me that dilantin is worse for sexual issues than Keppra.

The fact is that there hasn't been much research done into how the newer anti-epileptic drugs (like Keppra) effect sex drive, hormones, and reproduction (especially in men). If your doc would at least admit its possible, but he just isn't sure, that would be fine, but to dismiss it as impossible, thats unacceptable.

If a doc tells me virtually any particular side effect is impossible with a anti-epileptic drug, then its time to find a new doctor. Mainly because there are too many variables that make each medicine effect each person soooo differently, it is in fact impossible for ANY doc to know with certainty whether your issues are caused by a particular drug or not.

For him to suggest otherwise just shows how little he knows.
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Old 05-14-2014, 11:00 AM
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Originally Posted by Dignan View Post:
Your doctor is wrong. He is going by what he read in the Keppra side effect profile provided by the drug companies. I took Dilantin for 15 years and never had any sexual issues (I'm male BTW). After switching to Neurontin and now to Keppra, my desire just went away and I've had other issues as well. This has me considering going back to the Dilantin, even though most docs try to tell me that dilantin is worse for sexual issues than Keppra.
I completely agree with Dignan because my husband in taking Keppra 1000mg daily and it has caused significant lack of energy and sex drive for him. We are thinking to consult neurologist to switch to other medicines from Keppra.

Last edited by epileric; 05-14-2014 at 11:03 AM.
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