How can epilepsy affect sexual desire?
June 8, 2005 10:56 AM   Subscribe

I've just started seeing a really wonderful guy, and so far, I'm, finding two things unusual about him. Firstly, he has epilepsy. Secondly, he won't go down on me. This may sound lame-brained, but I'm wondering if there's a connection between the two.

He acquired the epilepsy about five years ago as a result of a head injury a few years previous. I am totally cool with this, and have done some research into what to do if he has a seizure when I'm around. He's taking some anti-seizure medication which he says can affect his sex drive (though that hasn't been an issue for us thus far). If anything, I find the fact that he has epilepsy a bit sexy, just because vulnerability is sexy. Yes, I'm smitten.

Here's the other thing, though: we've been seeing each other for about six weeks, and so far he hasn't gone down on me. I asked him about it, and he says that he just doesn't do it any more - that he used to really, really enjoy cunnilingus, but that about five years ago he just stopped. He, himself, seems a little confused about why he went off it, and has been unable (or unwilling) to fully explain it to me. He says he just stopped and can't seem to start again. He's tried, with former girlfriends (who were less than happy about his aversion) with no success.

I'm not really too worried about the 'no cunnilingus' thing. I was surprised by the news, and a little disappointed... but the last thing I'm interested in doing is trying to make someone do something, sexually, that they don't enjoy. But I'm curious about whether these two things - the onset of epilepsy, and his distaste for a sexual practice he'd previously enjoyed - may be linked. Has anyone heard of epilepsy (or its associated medications) affecting not just general sex drive, but preferences for particular acts?
posted by anonymous to Human Relations (19 answers total)

It may not be the epilepsy, but the injury. Traumatic head injuries are not very well understood, but they can lead to all kinds of things, from epilepsy to changes in personality to changes in preferences. I remember a guy once telling me about getting brain surgery to remove a tumor (not the same thing, I know, but related). He said the strangest thing about it was that he had spent his whole life having tea and biscuits every single afternoon, it was something he loved; after the surgery he'd never had tea again. It had been about 5 years, I think.
posted by OmieWise at 11:09 AM on June 8, 2005

I have epilepsy and while I've definitely noticed that certain medications have afffected sex drive, I've never noticed a change in sexual preferences related to seizures.

It may have something to do with the head injury (perhaps it damaged the "cunnilingus enjoyment" sector of his brain), but I don't think it's specifically seizure related. I've never heard of anything similar among epileptics.

(I started having seizures as an adult, after I was sexually active, btw. The only changes I've noticed sexually were specifically medication related.)
posted by grapefruitmoon at 11:11 AM on June 8, 2005

As an epileptic, I can confidently say there is no connection between the two. I've never noticed if my medication affects my sex drive, but then again, I have been on it since the 5th grade.

Mine is genetic, however, so as the others have indicated, the injury and not the epilepsy may be the cause.

I'm no doctor, but I am a guy, and a correlation between the two seems more excuse than explanation. Just my two cents.
posted by samh23 at 11:26 AM on June 8, 2005

He, himself, seems a little confused about why he went off it, and has been unable (or unwilling) to fully explain it to me.

I think you may have answered your question right there. Perhaps his ambiguity is the issue most truly bothering you, and the oral+epilepsy issue is simply a tangible outlet for that anxiety. I only say this because this is the exact style of information gathering and pondering I would do if in such a situation...

Since this is a sexual question, as well, it's one that lends itself to the anxious party obsessing and pushing the other party, and then the other party holding back even further.

I do understand that you're asking a fair medical question, but your specificity made me take it a different way.
posted by VulcanMike at 11:49 AM on June 8, 2005

I know that some kinds of epilepsy do affect sexual drive, increasing, decreasing or in other ways. I was under the impression that the right meds should stabilize this. What it sounds like though is just his preference. I think it is perfectly normal to not like it. It seems like he can still pleasure you in other ways and this is not a dealbreaker, which is good. If the ambuguity around this begins to really become a problem, I think consulting a psychiatrist would help.
posted by scazza at 11:52 AM on June 8, 2005

I seriously doubt that epilepsy has affected his sexual preferences -- but that doesn't mean that his head injury, which apparently caused his epilepsy, hasn't affected his sexual preferences.

A guy I once knew received a fairly serious head injury while cycling, and became quite a different person.
posted by aramaic at 12:18 PM on June 8, 2005

My mom had an aneurism about 20 years ago. Prior to that, if you mentioned the words "slug," "worm," or "Phillip" to her, she's puke. (She had a neighbor named Phillip that used to eat worms and slugs to gross her out when she was young). Post brain trauma = no puking.

I think the point is that any sort of brain trauma can change an individual's behavior and/or preferences. Sexual or otherwise.
posted by glyphlet at 12:57 PM on June 8, 2005

Perhaps the injury has increased his sensitivity to tastes and smells, and that is what's bothering him? I've read that some kinds of seizures can temporarily affect someone's sense of smell or taste, so perhaps this is a similar effect. I recently read an article about someone who became obsessed with gourmet food after a head injury, because his sense of taste had increased so much that he could no longer stand bland food. Maybe you could ask if your SO has acquired different eating habits since his incident.
posted by purple_frogs at 1:50 PM on June 8, 2005

It may indeed be the head injury, which can affect people in odd ways. It may also be that his sexual turnons changed over time, and that he's just conflating the two events (unless, of course, he received his head injury *while* performing cunnilingus, in which case all bets are off).
posted by jasper411 at 4:05 PM on June 8, 2005

I almost feel like I'm being trolled.

The only thing I can think of is this:

People with epilepsy discover that during a generalized seizure, it is quite common to bite down with extreme force. People have bitten off parts of their own tongue or others' entire fingers during seizures. It strikes me as just within the realm of plausibility that this might be on his mind and make him careful what he puts in his mouth. (It's also a good reason not to put anything ever in a seizing patient's mouth! No one reading this would do that, would they?)

Whoops - on preview, b1tr0t beat me to it.

But honestly I think that's pretty unlikely. More likely is that they're not related.

I'd also take issue with the idea that people with epilepsy are vulnerable, sexy, or have some sort of mystique. It's just a chronic syndrome of acute episodic attacks, much like heartburn (GERD). I have heartburn - does that make me sexier?

Didn't think so.
posted by ikkyu2 at 8:48 PM on June 8, 2005

Unless your, ah, 'landing strip' has flashing guiding lights on it, I'd guess that the problem is not epilepsy but a byproduct of the injury itself.

You have to understand that at the neurological level your brain is a vast meshed network of twenty to fifty billion neurons with between two and five thousand synapses apiece. Subtle alterations in that network can significantly disrupt established signal pathways. Neurons affected by the injury sometimes can be tasked to a different function altogether afterwards or be routed around entirely. Because there is no one-to-one correlation between nodal clusters at the neurological level and nodal clusters at the semantic level (and there is no 100% consistent internal symbology at either level between different humans), the effects of injury-induced disruptions can be both very subtle and arbitrary.

At least, that's what they taught us in our AI classes on neural networking.
posted by Ryvar at 9:08 PM on June 8, 2005

Maybe he went down on a previous girlfriend and had a bad experience that was gross, and he doesn't want to say anything about it. I've had sexual experiences that left me suddenly uninterested to things I'd always liked before, for awhile.

Otherwise, yes, the injury could have affected his smell/taste. He might be concerned about a seizure causing him to clamp down at a very bad time.

And ikkyu2, you should know better than try to suggest that what one person finds "sexy" can be invalidated by another person. That's a ridiculous proposition. How is that any different than arguing that a gay person is wrong for being turned on by someone of the same gender? Or are you simply arguing that a person's attractions need be politically correct?
posted by Goofyy at 10:50 PM on June 8, 2005

As someone with epilepsy, I'd like to respond briefly to ikkyu2 and Goofyy :

I also take issue with finding seizure disorders "sexy." This comes in part from problems I had with a former relationship in which my partner liked me better when I was ill and she had to take care of me than when I was fully conscious and able to do things myself. It really put a strain on the relationship which ended up being the death of it. I couldn't stand being with someone who liked my disease better than she liked me. Now, I'm not saying that's what's going on for the OP, but I do get squicked out by "I find vulnerability sexy." The question to me is "Would you like your boyfriend as much if he wasn't seizing?" If the answer is "no" - there are big problems.

Also I'd like to weigh in on the "clamping down" - most epileptics have a warning period ("aura") before a seizure. I usually know at least 5 minutes before I have a seizure and can plan for it. My husband certainly has never feared for his safety in the oral sex department. This sort of logic is twisted by stereotypes of the disease - not all seizures involve clamping and the odds of "clamping down" while involved in a sexual activity are certainly slim. (And would imply that his teeth would be involved in the first place, in which case I think he'd be doing something wrong.)

There is, however, a link to seizures and orgasm. I've never read any medical studies on this, but I have a pantsload of anecdotal evidence (mine and others) that indicates that a particularly powerful orgasm can trigger a seizure. Just thought I'd toss that out there.
posted by grapefruitmoon at 3:46 AM on June 9, 2005

I'm the original poster of this question, and I'd like to address some of the concerns that people have brought up.

I must say I'm extremely surprised that some people have interpreted my flip 'vulnerability is sexy' comment to mean that I'm in some way fetishising this boy's condition. Since I seem to have expressed myself poorly, let me rephrase: all I mean is that I'm fine with the epilepsy. It doesn't bother me, I don't see it as a romantic liability. I see him as a whole, complete, clever, thrilling, sexy, devastatingly funny person; I don't consider him damaged.

For what it's worth, he didn't tell me he had epilepsy until we'd already been to bed a few times. And when he did, it was just more information about someone I already knew I liked a whole bunch.

And yes, vulnerability IS sexy. Isn't it? I thought that was a widely accepted idea. When people fall in love with each other, it's often things just like this that engender tenderness. People love each other for their foibles and weaknesses and crapness as much as for their hot abs. In my experience, anyhow.

So, my answer to the question, 'Would you like your boyfriend as much if he wasn't seizing?', is, firstly, 'Uhm, YES,' and secondly, 'I'm not sure I'm allowed to call him my boyfriend yet, but thanks'.

Back to the question: he's told me that he has, in fact, stopped eating various foods over the years. And for somewhat similiar sounding reasons, ie. that he 'just stopped and never started again' and he doesn't understand why.

So maybe it's related, and maybe it isn't. I acknowledge that it's a tenuous link to make, and that's why I thought I'd throw it into the Askme ring. (ikkyu2, I may be a buffoon, but I'm not a troll.)
posted by handclaps at 4:52 AM on June 9, 2005

I see him as a whole, complete, clever, thrilling, sexy, devastatingly funny person; I don't consider him damaged.

Yes, this was my point. I hope Goofyy enjoyed taking a whack at the straw man he built.

Sadly, handclaps, your enlightened attitude is far from the norm. People with epilepsy face stigma and prejudice every day. In one poll, 88% of employers said they would not knowingly hire someone with epilepsy. (Such discrimination's against the law.) The bottom line is that this is really nonsensical; most people with epilepsy under treatment are healthy, intelligent, functioning members of society. If you know 100 people, chances are one of them has epilepsy; you might not even know it unless they told you.

I will continue to invalidate the idea that people with epilepsy should be treated differently from people without epilepsy, whereever I encounter it. It's a shameful holdover from the 19th century (when persons with epilepsy were imprisoned along with chronic syphilitics, the retarded, and the criminally insane) and it's time for it to go away.
posted by ikkyu2 at 6:27 AM on June 9, 2005

"most epileptics have an aura (warning period) before the seizure."

Probably not "most," actually. The figure's probably closer to 30%, and those whose aura is long enough to do something about it (pull over to the side of the road, discontinue fellatio, whatever) is significantly lower.
posted by ikkyu2 at 6:29 AM on June 9, 2005

ikkyu2: your comments now sound like what I'd expect from you, so maybe I read your response wrong. I read the poster's comment exactly the way she explained it. (dude, your posts are amongst my favorites. I'm hardest on those I respect)

People are still discriminating against epilepsy? That's mind boggling, I would have thought that disappeared sometime in the 60's, when we all learned what "discrimination" meant (if not sooner).
posted by Goofyy at 7:15 AM on June 9, 2005

People are still discriminating against epilepsy? That's mind boggling,

I think it is just that people don't realize how common it is and that it isn't necessarily some kind of tragic condition. I have noticed various comments around here about epilepsy, made in passing, that have surprised me in that respect. I also found a copy of that graphic novel about the epileptic brother, which had been recommended to me, and couldn't really read it because it had an extremely depressing account of epilepsy.

I"m sensitive to this because I have epilepsy myself. I've mentioned this around here before, though I didn't state it when I asked this question, which was spurred by one of these kinds of comments. I imagine it's something like how people with herpes must feel reading that herpes thread...

I suppose there are different levels of everything, and no doubt epilepsy is completely harrowing for some people. HOwever, for many of us it is just a part of life, and a lot of the worst of it is the reaction you get when something happens in public, or when it's talked about. I have a few-to-several complex partial seizures a month, and in the course of my life have had perhaps five or six tonic-clonic seizures. (I became symptomatic at 13 & am 31 now).

...and those whose aura is long enough to do something about it (pull over to the side of the road, discontinue fellatio, whatever) is significantly lower.

I'm not sure those two examples are analogous. I get auras which give me enough time to stop what I'm doing and go sit somewhere, but not reliably enough time for me to be sure I could find a way off a road & properly park before confusion set in, so I don't drive. I have gone scuba diving, which mighta been a bit stupid, but I really wanted to do it, so took the risk. I've also gone skiing, and have driven a car a couple times, & done other semi-risky things, but don't do them regularly. But it has never even occurred to me to refrain from oral sex - or kissing, for that matter. Or using silverware! ...
posted by mdn at 8:50 AM on June 9, 2005

I'm sorry if my earlier post came off with the wrong tone, I wasn't intending on attacking anyone. I'm a little touchy around the issue of equating epilepsy with sexiness, but that's just my issue with past relationships. I understand your point of view better now, handclaps, and I'm sorry if I misinterpreted your original statement.

As for discrimination : oh, I could go on and on with horror stories from college where I was alternately shunned and not taken seriously. I once had a professor ask me if I really thought a drawing class was appropriate for someone "with [my] condition." There is a huge stigma to having epilepsy due to misunderstandings about the disease that run rampant (everyone has grand mal seizures, epileptics are crazy, etc.). Most people I'm close with knew shockingly little about the condition until I explained it to them. There are plenty of people who still believe you should stick a wooden spoon in someone's mouth if they have a seizure!

The discrimination and misinformation continue partly because *most* people with epilepsy can hide it well. It's not visible. If someone has absence seizures or is well controlled on medication, you might never ever know that they even had epilepsy. The only seizures the general public really knows about are grand mals, which certainly are awful, but aren't suffered by all epileptics.
posted by grapefruitmoon at 10:05 AM on June 9, 2005

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