11 replies to this topic

[Samwise]

I was poking around the site and it seems like the impact on one's sex life is largely ignored unless someone asks a specific question. (If there's a better thread, please let me know)

I was just wondering how y'all handle your sex lives? For me, it has definitely impacted my se drive and my husband has been getting pretty annoyed lately. I just don't know what to do once I'm in that zone where it's so hard to wake up. Plus it seems like I just have a decreased sex drive in general. Can this happen while being on provigil or nuvigil?

Does anyone else have problems with decreased sex drive or have any tips?

[thecatnapper]

Kudos to you for bringing up a subject that most are too shy to talk about but is very important. It's not my favorite subject but I will share my story because It is somewhat unique. I am female, almost 36 and not married. I also no longer date. Why? Well, for many reasons but having no sex drive is one of the big ones even though I know there is more to a relationship that the physical stuff. Unfortunately I cannot blame this on meds or Narcolepsy alone because I also had a total hysterectomy nearly 6 years ago. What's interesting is that I did not lose my sex drive completely until about 6 months post-op but that is also when my (at that time undiagnosed) Narcolepsy became such a problem that I eventually had to quit working. I've had this suspicion that perhaps the lack of Estrogen had something to do with the Narc becoming so severe but my Neurologist doesn't think so. A lot of advancements have been made in medicine but they don't know everything yet and probably never will so I don't think any possibilities are "off the table" in relation to any health disorder. So for me there is the "chicken or egg" question in the back of my mind.

I will say that the only time in the past 6 years that I've had any interest in sex is when I was going to a clinic for what they called "natural hormone replacement". I cannot use man made hormone replacement because I have a history of blood clots in my lung. They were giving me Estrogens as well as Testosterone that supposedly came from plant extracts that were touted as being safe alternatives. They would not admit it but they were giving me too much of the Testosterone because I was developing unwanted body hair and having voice changes even though they said my labs indicated that my levels were "on target". Finally I told them to stop when after the last dose, I became absolutely consumed by sexual urges for about 2 weeks. It was on my mind 24/7 which just wasn't me even before the hysterectomy. It was like I had become a different person and it was frightening. That was when my attitude towards men and their sexual appetites changed. If that is what men and young boys feel like on a daily basis then I feel sorry for them.


I read something on one of the posts here that a man was being treated for low testosterone and that it was helping his Narc symptoms. So, maybe it would be worth it for you to talk to your GYN and have your levels tested and if they are low, possibly supplimenting. Most people are not aware that women have Testosterone as well and some respond well to very low doses. I didn't do well with it but I'm one of those highly sensitive people and the slightest little thing throws me off balance easily. There has to be some sort of middle ground. I'm sure it is difficult on your relationship with your husband and I don't envy that one bit. I pretty much wrote it off in my case. It was never a big part of my life and I no longer have an interest in anything other than platonic relationships so it's a non-issue for me but I realize that everyone is different and for many it is a huge issue.


P.S. I would say that it is also possible that you are just plain ol' tired and not in the mood for anything but sleeping! Good luck to you.

[KMitchell25]

I'm having this issue- Low sex drive and also just too tired. I keep telling my husband in the morning- tonight's the night! We both get excited about it- and then by the time we get home from work and eat dinner I pass out- not to be heard from again until the morning. I feel terrible about it- and I know we both miss it- and need it- I just hope it's my body adjusting to the meds and it all works out soon.

I know I'm on Vyvanse now and I was on Ritalin before- both decreased my sex drive. Also, anti depressants had the same effect for me. I think thats the case for lots of different medications... I'm starting Xyrem this weekend and I'm hoping that will help me with having more energy to make it through the day, so we can have intimate evenings again soon.

Does anyone have any insight as to how Xyrem effects sex drive? I hope it makes mine go way up!

[Megssosleepy]

I'm having this issue- Low sex drive and also just too tired. I keep telling my husband in the morning- tonight's the night! We both get excited about it- and then by the time we get home from work and eat dinner I pass out- not to be heard from again until the morning. I feel terrible about it- and I know we both miss it- and need it- I just hope it's my body adjusting to the meds and it all works out soon.

I know I'm on Vyvanse now and I was on Ritalin before- both decreased my sex drive. Also, anti depressants had the same effect for me. I think thats the case for lots of different medications... I'm starting Xyrem this weekend and I'm hoping that will help me with having more energy to make it through the day, so we can have intimate evenings again soon.

Does anyone have any insight as to how Xyrem effects sex drive? I hope it makes mine go way up!

I have read that a few people have felt pretty frisky when first starting Xyrem. I would suggest (if you don't have kiddies running around) have couple time then dinner= problem solved, food makes you sleepy. My ex and I tried for any time of the day, weekends he'd wake me when the kids started to wake... then I got to go back to sleep and he got the twins up lol. Who says it has to be at night? who says it has to be in a bed?
Yes all these meds do mess with everything. But, I think Xyrem has the lowest chance on effecting it in a negative way!

[DeathRabbit]

I mentioned this in the other thread, but Narcolepsy in about 1/3 of the cases deals a severe severe blow to the testosterone levels in men. So I bet it does the same for women as well because they are supposed to have between 50-100 ug/dL of test concentration. I've not seen anyone suggest it effects testosterone in women, but I'd guess it's just because most doctor's don't even think to check the testosterone levels in men for a normal blood work up, so I'd guess they are even less likely to evaluate that level in women.

[Hank]

I'm having this issue- Low sex drive and also just too tired. I keep telling my husband in the morning- tonight's the night! We both get excited about it- and then by the time we get home from work and eat dinner I pass out- not to be heard from again until the morning. I feel terrible about it- and I know we both miss it- and need it- I just hope it's my body adjusting to the meds and it all works out soon.

I know I'm on Vyvanse now and I was on Ritalin before- both decreased my sex drive. Also, anti depressants had the same effect for me. I think thats the case for lots of different medications... I'm starting Xyrem this weekend and I'm hoping that will help me with having more energy to make it through the day, so we can have intimate evenings again soon.

Does anyone have any insight as to how Xyrem effects sex drive? I hope it makes mine go way up!

From my recent experience- the initial 2.25 dose of Xyrem is unpredictable. It would put me into a short deep sleep and then I would wake up groggy and passionate. As a man, that is an interesting combo. My poor wife- she did, however, say Thank You to Xyrem. On the second night, I woke up after 1-2 hours- barely able to speak and feeling like a stud. A good round of Groggy Lovin', a satisfied yet confused wife, and me slumped on the floor with Cataplexy (please don't ask how I wound up on the floor). I called a Xyrem nurse the next day for an explanation.

The deep sleep releases HGH (human growth hormone) which is stimulating/energizing. But the low dose is not enough to keep you in a deep sleep for long, hence the roller coaster. The nurse told me it was rare. I told her it was the only side effect I would like to continue. It hasn't. I did have to report it as an "Adverse Event" which gets added as a "reported side-effect". This tells you a bit about how side-effects are reported. Neither my wife, nor I, considered it Adverse.

Before children, evenings were a good time for a good time. But after children, mornings and afternoons were my preferred time. My wife understood. Right now our children almost have the same bed time as me. For enough time before Xyrem we would need to be livin' it up while they are downstairs doing homework- and that is not conducive to romance.

We have sent the children to friends' on a Saturday afternoon for some alone time. We have gotten a hotel room a few miles away when needed.

Creative timing works best- so customize. It does keep our marriage fresh, and we need to plan time for being spontaneous. It is worth the effort.

[sleepylune]

I used to have a much healthier sex drive, until I started all my meds. When I was in college, all I took was birth control, allergy medicine, and an antidepressant. When I was diagnosed and started taking all the stimulants and then sleeping pills, my sex drive plummeted. I have a loving boyfriend and this is a total problem in our relationship. He is patient and understanding, but I still feel bad. We have open and honest conversations about how we are feeling and try to come to an understanding with one another. One thing that helps is enjoying sensual activities together that don't necessary become physical. Massages always feel good!! Maintaining emotional closeness is also important; we happen to enjoy many activities together so we go bowling, hiking, and maybe one day yoga together.

Still, the fact that I have a next to nothing sex drive is hard. I know that it is because of the meds/hormones and not me, because I have always had a healthy sex drive before. I let my boyfriend know that the iron is hot and he has about 5 minutes to strike before it passes. That means, as megs mentioned, this can happen any time of day. We tend to avoid waiting until nighttime because of the possibility that I might get too tired. Not to say that it's out of the question at night.

[KMitchell25]

Thanks for the advice. Going to try a different schedule- sometimes it's just so hard with working full time- and we both have "side jobs" that we do after work some days... Hope the Xyrem helps!

Going to start MAKING time instead of excuses LOL

Good luck everyone!

[Samwise]

Wow, this turned out better than I thought Those are all really good points, and I'll ask my neuro about the testosterone.

And yes, this has definitely been a big strain on my hubs and I. Before we got married, literally up until the week before, we lived apart for two years while I was in grad school. Seeing as I was in Bama and he was in NC, we didn't see each other much. Once we were actually able to be around each other a lot everything was new and exciting and our sex life was fine. Then I started my new job... It is mentally and physically draining so many nights I am donezo when I get home. I need to be better about being spontaneous about it. I think part of me sometimes is scared to initiate because then I think, "But what if I get super tired a few minutes in?" That may seem like a weird thought but our sessions are not short due to reasons on his end. They last at least 45 min the majority of the time (maybe that's too much info, I'm not sure). Needless to say, I pass out after.

And this is embarassing, but recently there have been a few times where we will be doing something as simple as kissing and I'll start to fall asleep. Those are the moments where I REALLY hate my N. Moments where my brain is all, "NOOOO!! WHAT ARE YOU DOING?!" but my body is all, "what did you sazzzzzzz...."

I guess another question I have is does anyone's spouse have a certain trick to wake you up? I would ask Eric to yell or something to startle me but I might jerk awake and hit him by accident But in all seriousness, N can be just as frustrating on a lover's end, and I don't want him thinking I'm just not interested..

[Megssosleepy]

I would just chat it up with your hubby, let him know that you are going to try to help the two of you out, butttt... If you get sleepy its not your fault and he can go finish things up on his own! I think the fact that you are open and trying will be what matters most.
I also think the more you try to have fun, the more fun it becomes, and the more fun it becomes, the more you wanna have fun lol
When you get in a funk its easy to just let time pass you bye, but if you get into a pattern it will become a more normal part of your relationship again. I must add without adding to much, that is is a great form of exercise and some afternoon delight followed by a nap... makes for a very relaxed/refreshed evening!

[The Dreamer]

I mentioned this in the other thread, but Narcolepsy in about 1/3 of the cases deals a severe severe blow to the testosterone levels in men. So I bet it does the same for women as well because they are supposed to have between 50-100 ug/dL of test concentration. I've not seen anyone suggest it effects testosterone in women, but I'd guess it's just because most doctor's don't even think to check the testosterone levels in men for a normal blood work up, so I'd guess they are even less likely to evaluate that level in women.

I had read somewhere the lack of stage three sleep can cause low testosterone. And, there are clinical trials to see if low testosterone can help in detecting sleep apnea. Though I already know I have sleep apnea, and its managed...but I also have low testosterone. So, I've been wanting to find out if there's been any evidence on Narcolepsy causing low testosterone as something I can show my doctor. Coupled with the fact that a PSG after 2 years of CPAP, showed a continued lack of stage 3 sleep....though all the PSG says is that this can be indicative of sleep apnea. And, then on the next page it says I had 0 apneas and 0 hyponeas for an AHI of 0 for the whole night. But, it never revisits why the lack of stage 3 sleep.... It also noted that I started the night at 7, and they raised me to 8 to calm my sleep, and I stayed there the rest of the night. But, the doc prescribed that my pressure be lowered to 7 after the PSG. I was on 7.5 before. The sleep lab could only do whole numbers with their system.

Though now that I have my Narcolepsy diagnosis...I guess it isn't as important. Though wonder if there'll be a point where I can stop having to go to the doctor's office every other week to get jabbed in the butt.

I'm on an AutoCPAP now...and my 90% pressure is 7.5-8.0 while my 95% pressure is 8.0-8.5....so I'm thinking I should get the lower limit bumped from 7.5 to 8.0. In the recent download, my max pressure reached 13.8. The upperlimit is set to 15. But, my AHI will often ramp up to 10 during my second Xyrem dose, and then drop back to near 0 30-60 minutes before I wake up.

The Dreamer.

[DeathRabbit]

I had read somewhere the lack of stage three sleep can cause low testosterone. And, there are clinical trials to see if low testosterone can help in detecting sleep apnea. Though I already know I have sleep apnea, and its managed...but I also have low testosterone. So, I've been wanting to find out if there's been any evidence on Narcolepsy causing low testosterone as something I can show my doctor. Coupled with the fact that a PSG after 2 years of CPAP, showed a continued lack of stage 3 sleep....though all the PSG says is that this can be indicative of sleep apnea. And, then on the next page it says I had 0 apneas and 0 hyponeas for an AHI of 0 for the whole night. But, it never revisits why the lack of stage 3 sleep.... It also noted that I started the night at 7, and they raised me to 8 to calm my sleep, and I stayed there the rest of the night. But, the doc prescribed that my pressure be lowered to 7 after the PSG. I was on 7.5 before. The sleep lab could only do whole numbers with their system.

Though now that I have my Narcolepsy diagnosis...I guess it isn't as important. Though wonder if there'll be a point where I can stop having to go to the doctor's office every other week to get jabbed in the butt.

I'm on an AutoCPAP now...and my 90% pressure is 7.5-8.0 while my 95% pressure is 8.0-8.5....so I'm thinking I should get the lower limit bumped from 7.5 to 8.0. In the recent download, my max pressure reached 13.8. The upperlimit is set to 15. But, my AHI will often ramp up to 10 during my second Xyrem dose, and then drop back to near 0 30-60 minutes before I wake up.

The Dreamer.

They let me do my Test injections myself. Perhaps you can talk your doc into that so you dont have a perennial biweekly doctor visit?