RLS and ED

For everything and anything else not covered in the other WED/RLS sections.
pblackwell
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Joined: Sat Sep 13, 2014 11:55 pm

RLS and ED

Postby pblackwell » Tue Sep 30, 2014 3:52 am

I know this is a difficult topic for some to discuss but I am searching for anyone else with similar experience. 17 years ago my problem began with sudden onset of lower body paralysis and after every test they could come up with I was diagnosed with transverse myeolitis. Week in the hospital with high dose IV steroids allowed most all body functions to return. I was diagnosed with RLS shortly afterwards but believe I had RLS at a young age. I went through every dopamine agonist they could think of and sometime during all of this ED showed it's ugly face. Cialis was prescribed and it worked well but as time clicked on the ED worsened to the point of Cialis not working all of the time. A year and a half ago I was diagnosed with sleep apnea. So, a CPAP was ordered. I actually felt like a new person after a few nights with the CPAP. That lasted for a few months then my RLS symptoms worsened and my ReQuip was increased to 12mg per day. Augmentation never mentioned and unfortunately I had no idea what augmentation was. My RLS was so bad I couldn't tolerate the CPAP. So, back to feeling like crap again and ED still not controlled with Cialis. Having received a health survey to complete for my upcoming appointment at Mayo, I noticed questions like do you have sleep apnea, do you have ED, etc. Doing a little research, I find that RLS in males increases your chances for ED plus sleep apnea also increases ED chances. To add more salt into the wound, Dopamine is necessary for normal sexual function. My Requip has been decreased and most likely will be stopped if I have anything to do with it. So, anyone out there with similar problem? I am going to try and get back on my CPAP since I cant change the fact I have RLS or sleep apnea and I dont want to go back on the dopamine because I have experienced augmentation and not wanting to go back there. I know with all of the possibilities in medicine this has to be a fixable problem. Hopefully someone has the answer.

ViewsAskew
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Re: RLS and ED

Postby ViewsAskew » Tue Sep 30, 2014 4:25 am

I hope someone has an answer for you.

Have you tried using natural methods of increasing dopamine?

One other thing I'd consider if I were you - see a psychopharmacologist? It may not be the right type of doctor, but it seems possible it would. They really get the interactions of medications. That you needed such high doses of Requip - some of the highest anyone here has ever said they've needed - makes me wonder if there isn't something else that may be related to the ED and the dopamine and maybe the inflammation from the transverse myeolitis.

My guess is that you're going to need a special doc who's willing to help you chase this down. Many docs seem to not like it when they can't find any easy solution. You need someone who will help you figure it out. Are you in an area of the world that you can find someone?

Please keep us informed of what happens.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

sleepdancer2
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Joined: Sun Jun 29, 2014 7:46 am

Re: RLS and ED

Postby sleepdancer2 » Tue Sep 30, 2014 7:34 am

Not the right gender to have personal experience to offer, just done some reading over on cpaptalk about sleep apnea and ED. And have read that sleep deprivation in general is a risk factor in itself. I do understand about the WED making using CPAP difficult. When one is already in a state of agitation with nerves on edge and moving about, the last thing we want is something strapped to our face. My first several months on CPAP were a struggle for me for that reason. I did continue to try to wear the mask every night, even though it was on and off over and over again all night. But the little bit of apnea free sleep I got helped me find the strength to deal with the limb movements. I do hope you'll be able to calm your legs and use your CPAP so you can see to what degree your symptoms abate.

While I've found a TENS Unit to be better for my jumpy legs at night than any med I used, your post caused me to wonder if TENS treatment would in any way, even temporarily, contribute to the issue you already have with ED. Hmmm. Never crossed my mind to wonder that. A couple "watch-outs" for you... if you have sleep apnea and don't use the machine, be very careful about using sedating meds for the legs. If you do use CPAP while your legs are acting up and you're waking a lot or stopping and starting the machine several times a night, it might be a good idea to limit use of the ramp feature (if you're using it). Multiple uses of ramp during a night at a substandard pressure can mean you spend too much time untreated. When my legs were still bad, I had to cut my ramp time down to maybe 5 minutes because I was restarting the machine sometimes a dozen times a night. When my ramp was set to 45 minutes, that meant I was getting almost no therapeutic treatment and it was killing me.

Good luck finding answers.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Rustsmith
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Re: RLS and ED

Postby Rustsmith » Tue Sep 30, 2014 12:01 pm

I can't provide much help with the ED since that is not a DA side effect that I have experienced, but I have intentionally kept my doses low to delay my time to augmentation. You definitely need to discuss this with your doctor since there are other possible causes. The doctor needs to be willing to do a bit of investigation beyond simply writing a prescription for a different "blue pill".

As for the CPAP, I will second what sleepdancer has said. My WED neurologist was emphatic that I had to use my machine all the time. I think that he was actually more concerned about this topic than he was about treating my WED, and my apnea is a very mild form. But in retrospect, I suspect that he was taking the approach that sleepdancer pointed out, that the machine allows you to get better quality sleep during the limited times that we actually do get to sleep.

Finally, as a bit of information for you to think about. One of the alternatives to DAs are the anti-seizure meds that are derivatives of gabapentin. You should be aware of the fact that a potential side effect of these drugs on men is the inability to reach climax. ED is not the problem, but it appears to me that the meds moderate emotional levels and thereby limit how much the brain can accomplish in this area.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: RLS and ED

Postby ViewsAskew » Tue Sep 30, 2014 10:08 pm

Rustsmith wrote:
Finally, as a bit of information for you to think about. One of the alternatives to DAs are the anti-seizure meds that are derivatives of gabapentin. You should be aware of the fact that a potential side effect of these drugs on men is the inability to reach climax. ED is not the problem, but it appears to me that the meds moderate emotional levels and thereby limit how much the brain can accomplish in this area.


I don't think it's a listed side effect, but the DAs do this to me. Nothing like spending 30 to 40 minutes about 30 seconds away from climax to never get there. Grrrrrrr. I got to the point I didn't want to have sex at all - it was just frustrating. Sure, I get that it's supposed to be about the journey, but being lost in the desert never to escape is not fun!

Guess my point is that all of these drugs change our brain chemistry, and often in ways we didn't expect and that definitely detract from our quality of life. Be on the lookout and definitely be proactive in changing meds as needed. I know my last doctor disliked this about me, but I've wasted too much time with side effects that negatively affected my life and ability to work, think, and love. If there are no alternatives, fine, but often there are.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: RLS and ED

Postby debbluebird » Tue Sep 30, 2014 10:37 pm

ViewsAskew wrote:
I don't think it's a listed side effect, but the DAs do this to me. Nothing like spending 30 to 40 minutes about 30 seconds away from climax to never get there. Grrrrrrr. I got to the point I didn't want to have sex at all - it was just frustrating. Sure, I get that it's supposed to be about the journey, but being lost in the desert never to escape is not fun!

Guess my point is that all of these drugs change our brain chemistry, and often in ways we didn't expect and that definitely detract from our quality of life. Be on the lookout and definitely be proactive in changing meds as needed. I know my last doctor disliked this about me, but I've wasted too much time with side effects that negatively affected my life and ability to work, think, and love. If there are no alternatives, fine, but often there are.


The same thing happened to me. But at the time I didn't know it was the DA. I thought something was wrong with me. It was very frustrating.

Rustsmith
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Re: RLS and ED

Postby Rustsmith » Wed Oct 01, 2014 2:08 am

I don't think it's a listed side effect, but the DAs do this to me.


Although it may not be a "listed" side effect, there is plenty of literature available about the effects of gabapentin upon males. The following was one of a number of articles that I found. I found it humorous that the title says "older and elderly" but the article starts the age range at 44. Guess everything like that is a matter of perspective. :)

http://www.news-medical.net/news/20110604/Gabapentin-medication-induces-anorgasmia-in-older-and-elderly-patients.aspx
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: RLS and ED

Postby ViewsAskew » Wed Oct 01, 2014 3:08 am

Wow - 44 is in the older and elderly category????? I thought 40 was the new 30....

I did understand it was a listed side effect of gabapentin - not sure it I made that clear. It wasn't a side effect for dopamine agonists, though, and at least two of us here had it when using DAs (seem to recall other people mentioning it, too). And is even more fascinating because DAs are actually used to treat anorgasmia at times!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

crl363
Posts: 66
Joined: Fri Jul 05, 2013 7:21 pm

Re: RLS and ED

Postby crl363 » Fri Oct 03, 2014 1:23 pm

I started to notice ED ~40 years old when I got diagnosed with RLS. It slowly worsened each year with age as I was on DA’s. Finally, I went on Methadone ~1 year ago and it had a dramatic effect on my libido for the worse. I believe the dopamine dysfunction in males with RLS has a direct impact on libido. It probably has something to do with the cGMP pathway. Cialis works by helping maintaining the cGMP pathway while increasing dopamine (D1 receptors) also works on the same cGMP pathway. There have also been studies that show ED is “highly prevalent” with long term opioid use which maybe why my libido tanked.

(http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2951625/)

Bob


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