Jessicasa

Increased Sex Drive With Narcolepsy

33 posts in this topic

I have seen many people with narcolepsy talk about how their sex drives decrease but mine just keeps increasing. It could be that I am young (23) and that's just how I am but I thought it was strange seeing how other people with narcolepsy tend to have a decreased sex drive. My boyfriend gets very irritated with me because he says I want it 24/7 but that's just the way I am. I usually just try not to touch him anymore because I don't want him to get angry with me. Has anyone else had the same issue? What did you do? It is really starting to wear on me.

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generally the lack of physical energy and general depression kill it off, are you on a medication?  It could be explained that way.

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It has always been a little higher than everyone else but it keeps increasing a little bit ever year. He says I even try to start things when I'm asleep. He is getting tired of it because he says it feels like I am only dating him for the sex but I really do like him. How do I fix it?

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I know women on xyrem experience that. It could be unrelated from the narcolepsy. Just high T levels. 
I don't have experience with the sex, but I know I get more "clingy" when I am tired... just because my brain is going a million miles an hour and comforting hugs/cuddling/touches seem to be the only calming thing. Oxytocin relieves stress. Seems like Narcoleptics live in a somewhat constant state of stress. Guilt for the tiredness, exhaustion despite sleep, things left unfinished. 
Oxytocin is a nice relief IMO.

just a thought. 

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There is an old saying..."If the sex is good in a relationship, then it is a small part of the relationship. If the sex is bad, then it is a BIG part of the relationship."

You don't say if the sex with your partner is satisfying. If it isn't then it will leave you in a constant state of frustration and you will seek it more. If it IS satisfying, then the problem is with frequency. Either way, no matter how much you like or love someone, your relationship is doomed because your needs are not being satisfied. It does a real number on your ego  and sense of self worth too.

My first husband had such a low testosterone level that he thought once a week was more than enough. Drove me nuts...well, that and a few other selfish traits he had. My hubby's lifelong best friend went through the same problem with his first wife, divorced her and married the perfect mate who also loved sex.

Everybody's sexual needs are as different as the symptoms in Narcolepsy but your partner's needs better be a pretty close match to your own. After thirty two years, we still have good sex...just not as often...and I can count on ONE hand the number of times that I have NOT had an orgasm when we have sex...that's an exceptionally patient and loving man.

I know from a previous post that you're using Nuvigil...but I think you're probably just a normal female. Good luck!

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Hi Jessica! (We share the same name lol)

I too experience this. I've always had a high sex drive - and I'm (almost) 22 now! I'm not sure why, because sometimes I'm too tired but even then it doesen't stop me..

I do think that the oxytocin plays a role. It makes sense that with everything PWNs go through, and all of our feelings of inadequacy, might lead to sex becoming an outlet. It seems that a lot of PWNs are also very creative, another great outlet that we use to rid ourselves of stressful energy. Both sex and creativity don't require quite as much energy (this is probably not always true!) and so it means that even if we're not 100%, we can still do those things.

Ferret - that's absolutely true. My current partner is a 1-2 x a week kinda guy. In the beginning of our relationship, I wanted it almost everyday. We fought about it quite a bit - and even now we fight about it every once and awhile. But I've just had to learn to deal with it and accept that it's really not something that means he doesn't want me, just that his physiology is different. He hasn't been tested but I think he probably has low testosterone (or something that would cause a low sex drive - it doesn't seem 'normal' to me that a 22 yr old man only wants sex 1-2x a week!)

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I don't think that a 22 year old guy only wanting sex once or twice a week is normal either. I married at 21 and he was 23...in those days you usually waited to have sex until marriage because of fear of pregnancy. Birth control pills were not available (through normal channels) unless you were married. Unfortunately no babies after four years either. I went through every kind of test and pelvic exam known at the time...including having my fallopian tubes "blown" in case there was an obstruction.

It took forever to convince him to have a semenanalysis...really, all he had to do was j$#k off in a sterilized jar...how tough is that? Very low sperm count and all his swimmers were dead. It was explained by his having had the German Measles as a kid.

There's medicine available for the condition now...but it was devastating for him at the time and our relationship was never the same. 

For guys, it's a touchy subject as they seem to equate it with a blow to their masculinity...he pushed me away.

In the end, I married a wonderful guy...and, GUESS WHAT?...he'd already had a vasectomy. Sure didn't matter to me. I'm stepmom to five.

We are better matched in every way.

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I would actually be fine with never having sex pretty much 95% of the time. Except that changes when I am actually around my girlfriend (we only get to see each other a few times a month) . As soon as she's in the room, it's like the sex switch is flipped. I feel guilty a lot actually because I feel like I'm using her sometimes. Even when she initiates it, she has admitted she just does that because she thinks that's what a good girlfriend owes her boyfriend. I tried putting our sex life on halt one time, though, and she was really hurt and thought it meant that I thought she was bad at it or that I had lost interest. But I can tell at least two thirds of the time that we have sex, she's just capitulating because she thinks it will make me happy. You have no idea how much of a bastard lowlife dudebro that makes me feel like.

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I can relate to that.  I have pretty much no drive, at all.  I just don't have the energy to try to find a partner, and more often than not it just doesn't work out.  No energy + asshole resting face don't make an attractive mate.

 

When I was in a relationship, I'd feel guilty about initiating it. 

 

Been single now for almost a decade, and no plans to change it.  Certainly hasn't increased mine.

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I just had it beat into my head so much as a kid not to objectify women that any sort of sexual impulse towards a woman always makes me feel evil. Apparently, my Mom's dad wasn't the most faithful, so she wanted to make sure I'd turn out differently. But she went a tad overboard. The first time I was caught with porn, she wouldn't speak to me for a week.

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My parents sent me to a shrink because they thought I was having too much fun alone in the shower, because I'd be in there roughly 15-20 minutes in the morning.  Kinda reinforced the whole guilt thing.  Strange though because it wasn't a taboo topic in the house. 

 

Truth is, and still is, that I use that time to wake up because I'm so groggy, I just stand there waiting to wake up.  Sleep intertia isn't fun.

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Ferret- I am very glad it all worked out for you! And I really want him to get some tests done because his low sex drive is not the only abnormality - but that's not relevent to this particular topic :P

DeathRabbit - That sounds like quite a bit of stress to handle - on one hand knowing that sex is normal and good and on the other dealing with internal issues of shame and guilt. :( I think perhaps a good thing for both you and your girlfriend might be to try and find your nitch - that point where both of you are comfortable with your sex life. Because she obviously shouldn't feel like it's an obligation, and if she does that only makes you feel worse. Being comfortable with our sexuality is very important and once we are comfortable, knowing that it's okay, what we like and what we don't, and being able to communicate about it, then we find healing. I hope that both of you can reach that comfortability!

So I wonder if I'm correct in this assumption, but it sounds to me as if a majority of the women here are saying that yes, they do have a high sex drive, while the men on here are saying that they don't. Is this correct? I know there are many factors that play in to this, such as age and partners. But I find that interesting. Perhaps it's just that men (generally!) put a lot more physical effort in to sex? I think women put more mental energy in to, rather than physical. Which perhaps, as PWNs, that is easier? I am just trying to piece things together. Any ideas?

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My hubby has always said that sex is all in your head.

If you're processing guilt, shame or an obligation at the same time, then it's never going to be any good. Relax, set the mood, let your imagination take flight. It is calming, healing and (hopefully) makes both of you feel good. Nobody can read your mind though so let your partner know what you want and need. It just doesn't get any more intimate than that.

If your partner is too physically tired then, ladies, you get on top. Any way is a good way.

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So I wonder if I'm correct in this assumption, but it sounds to me as if a majority of the women here are saying that yes, they do have a high sex drive, while the men on here are saying that they don't. Is this correct? I know there are many factors that play in to this, such as age and partners. But I find that interesting. Perhaps it's just that men (generally!) put a lot more physical effort in to sex? I think women put more mental energy in to, rather than physical. Which perhaps, as PWNs, that is easier? I am just trying to piece things together. Any ideas?

 

Might be hormonal.  Don't most men usually fall asleep afterwards anyway?

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I always found the more I had the more I wanted, the less I have the less I need/want it.

 

I was in a 5 year relationship where I just did not want to sleep with that ex... he was my first... turned out he just wasn't very good.... We were a once a month kind of couple, and that was more than enough for me.

 

My last relationship it was an everyday more than once a day kind of thing.  We both always wanted each other.

 

Now that I am single I just don't think about it.

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Megsosleepy, you are not alone. My sex drive was high when I was your age, and its still high at twice your age. Looking back, any relationship I was in where my partner did not have an exceptional sex drive was doomed to fail.

 

It causes serious stress to find a relationship partner knowing high sex drive is a requirement. At least for a man. Women tend to process any inquiry into the strength of their sex drive as the man being interested only in sex. Nothing could be further from the truth. This is not an indictment, it is an observation. Their interpretation of an "inappropriate"  level of interest in strength of sex drive seems to be based on real experiences they have had. In the end, I am only interested in committed relationship with a woman who will take me at my word (that what I want is more than sex) anyway.

 

The bottom line I have come to accept is that there are far fewer partners that are compatible with me than if I were a man without narcolepsy that had a mediocre sex drive.

 

God gives gifts in direct proportion to challenges in my experience.

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It has always been a little higher than everyone else but it keeps increasing a little bit ever year. He says I even try to start things when I'm asleep. He is getting tired of it because he says it feels like I am only dating him for the sex but I really do like him. How do I fix it?

Im 39 male. I have a  high sex drive as well. And yes on the xyrem I  act out things in my sleep as well. And yes its annoying for the partner because they get woken up. But he truely needs to understand that you cant help your behavior while your asleep or on meds especially the xyrem. Its know as a date rape drug for a reason lol. But in all seriousness talk to him let him know that you cant help it. I know exactly what your going through and its hard.

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I'm still speachless about the numerous topics that affect me are here on NN.

 

Yes, sex drive for me has increased.  I'm 35 y/o man, married for 10 years, 2 amazing kids who wear us both out and we can rarely find the time for intimacy that isn't interrupted by the kids or life in general.  

 

I'm always wanting to make love to her....wake up wanting it, go to work wanting it, and come home wanting it.  It's enough to drive you crazy :)  And...to a certain point, I've had to just let it go and know that it'll happen when it happens.  Just life stress is enough to cause changes like that....and I'm finding myself stressed about diagnoses, medications long term....and this whole sleepiness thing all together.

 

I can't remember a time when I had a lower sex drive - it's always been a huge part of who I am.  Funny thing was during a routine checkup, I was diagnosed with low T about 3 months ago, but even with the Axiron 3x a week to bring the T levels back up, I'm still the same guy.  Sex drive wasn't even affected by taking the T med.

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I have the complete opposite problem, I'm a 22 year old female I was diagnosed about a year and a half ago, take adderall xr, and have zero sex drive. I have a boyfriend of four years and while he is very supportive I find myself feeling bad in the back of my mind because I know I used to enjoy sex and at 22 should have a sex drive. I have tried several medications and adderall is the only one that has worked positively for me minus this one issue. My question is if anyone has experienced this and found a way to turn it around?

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Adderall XR alone did this? I associate loss of libido with antidepressants, so that's really interesting (but also really sucks, of course) if it's happening with Adderall XR alone. It this while it's in effect, or when it wears off at night...?

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If you are not on an antidepressant and you are experiencing low sex drive, I would consider depression.

All people living with chronic illnesses are at a high risk of depression. I experienced this and it cought me off guard. Depression is not just sadness or negative thinking that can be cured by a good pep talk and some ice cream. It really is a very physical experience.

It is worth considering. Is there anything else you dont enjoy as much lately. Are there things you enjoy that you just dont do anymore?

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I have the complete opposite problem, I'm a 22 year old female I was diagnosed about a year and a half ago, take adderall xr, and have zero sex drive. I have a boyfriend of four years and while he is very supportive I find myself feeling bad in the back of my mind because I know I used to enjoy sex and at 22 should have a sex drive. I have tried several medications and adderall is the only one that has worked positively for me minus this one issue. My question is if anyone has experienced this and found a way to turn it around?

 

 

I found this in the Adderall XR drug facts sheet :

 

 

Adverse Reactions Reported by 5% or More of Adults Receiving ADDERALL XR with Higher Incidence Than on Placebo in a 255 Patient Clinical Forced Weekly-Dose Titration Study:

 

Note: The following reactions did not meet the criterion for inclusion in Table 3 but were reported by 2% to 4% of adult patients receiving ADDERALL XR with a higher incidence than patients receiving placebo in this study: infection, photosensitivity reaction, constipation, tooth disorder (e.g., teeth clenching, tooth infection), emotional lability, libido decreased, somnolence, speech disorder (e.g., stuttering, excessive speech), palpitation, twitching, dyspnea, sweating, dysmenorrhea, and impotence.

 

 

 

Also:

 

6.2 Adverse Reactions Associated with the Use of Amphetamine, ADDERALL XR, or ADDERALL:

  

Endocrine: Impotence, changes in libido, frequent or prolonged erections.

 

 

 

So, it does appear to be a side effect. Just not a particularly common one.

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Oh yeah, anything's possible with meds. Just curious.

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Sex drive, what's that?  I think I remember having one of those, once upon a time.  My poor boyfriend, he's 8 years younger than I am and I'm sure he's sexually frustrated but he's a very patient man (thank goodness!) I blame my lack of drive on extreme, prolonged sleep deprivation.  Here's hoping that treating the root issue will give me back my sex drive because I really want to want it again.  Being 42 years old and possibly perimenopausal probably doesn't help matters  :blink:

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