Requip & Erectile Dysfunction ???

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rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Tue Aug 08, 2017 8:14 pm

I've been out of town and on a road trip since end of June. Now back home and into my 'routine'. I've not been following my 'sleep nazi's' rules....just too complicated for my transient lifestyle. On Horizant my rls symptoms have generally continued to be mild but have been more frequent while traveling. I goofed once and took a motion sickness med, anticipating a potential problem train ride. Big mistake there! In the middle of the night, while up with bad rls, I read the label and found a "INE" active ingredient I'd never heard of before. I will be more careful!

Re: my home sleep test taken before I left town, I got a call from my Neuro who was able to diagnose 'mild obstructive sleep apnea'. He recommended either "Nasal Valves" or a 'mandibular advancement device' either of which will open my airway and most likely allow me to sleep 'straight thru' without waking for no apparent reason 1-2 hours after I first go to sleep.

Yesterday I met with the dentist who makes the MAD. He explained it and talked a 'good game' but I'm wondering how effective it really is. It's very expensive, $2300. According to Medicare they cover the device as long "all criteria are met". I have some questions of the DDS re: this criteria.

Has anyone out there had experience with the MAD? Good? Bad? Otherwise? With Medicare billing?

Jim

ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Tue Aug 08, 2017 8:52 pm

It has been a long time since I looked into these options for my husband. At the time, nothing worked with a high enough success rate that we were willing to pay for it...but that was ten years ago.
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.

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Wed Aug 09, 2017 4:24 am

No experience with MADs, sorry. Whatever you end up using, if you choose an effective treatment for the OSA, it may lighten up the WED severity too, since anything that makes sleep worse makes RLS/WED worse.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

badnights
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sleep hygiene

Postby badnights » Wed Aug 09, 2017 4:25 am

I was going to start a topic for this, but I was just talking about it here a few posts ago, so :

The enforced "sleep hygiene" from my 3 weeks in the field is working. I transitioned from going to bed at 6 or 7 AM to going to bed at midnight or 1 AM over a few days. I initially used extra zopiclone and hydromorph contin to get to sleep, but didn't need it most nights after the first few. I suspect I adapted so fast because it was a huge shift. If I was trying to shift 3 or 4 hours, it might not have worked so well, but I was basically flipping my nights and days.

So for three weeks, I got up at 645 AM, and bed at 12 or 1. I was gradually wearing out because it wasn't enough sleep. (I never sleep right through - on good nights I was up 3 times briefly, on bad nights more and for longer.)

When I got out of the field, I decided to try to keep that schedule, more or less. Bed at 1130 (I usually shoot past that, though) and up at 8:25 AM. I am strict about taking my meds on time at night, which has always been the hardest part, because I am consciously killing the alertness that the hydromorph brings, which is usually the only alertness I've felt all day. It has been bitter-hard to do in the past. But I seem able to do it more easily now, because I am not groggy all day. Sleepy but not groggy, for some reason. I'm taking trazadone now too, which is helping the sleep maintenance, as I mentioned in another post.

I am getting 7-8 hours a night on a lot of nights now, with the usual 3-5 short interruptions, occasionally a longer one that requires meds or exercise. But I'm still tired by the afternoon. Today was my first day back at work. I am curious how long I'll last. And curious as to how much of my daytime sleepiness is lack of sleep and how much is medication side effects. Not sure how to tell.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

sleepdancer2
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Re: Requip & Erectile Dysfunction ???

Postby sleepdancer2 » Wed Aug 09, 2017 8:54 am

To rvjimzhr1
"... my home sleep test taken before I left town, I got a call from my Neuro who was able to diagnose 'mild obstructive sleep apnea'. He recommended either "Nasal Valves" or a 'mandibular advancement device' either of which will open my airway and most likely allow me to sleep 'straight thru' without waking for no apparent reason 1-2 hours after I first go to sleep. Yesterday I met with the dentist who makes the MAD. He explained it and talked a 'good game' but I'm wondering how effective it really is. It's very expensive, $2300. According to Medicare they cover the device as long "all criteria are met". I have some questions of the DDS re: this criteria."
Please continue to pursue information before investing in a MAD. I haven't used one, but know people who have. Even their own literature claims a percentage of improvement. That may not get your sleep apnea event count low enough to be enough of a fix for your OSA. If you have any TMJ issues, the MAD may stir up jaw pain. The device is most likely to make enough of a difference in those with quite mild OSA. As to a neurologist diagnosing you with mild sleep apnea from a home test, I'd be concerned that your OSA is actually more serious that the limited test showed. For one, the home studies have a bit of a reputation for under diagnosing. And secondly, if you have RLS or periodic limb movements interfering with your sleep, the home study doesn't look for that. In the presence of jumpy legs, the sleep apnea doesn't get a chance to fully manifest because sleep is so broken. Betting if your RLS (and/or PLMs?) were controlled, your OSA would be found to be worse. And the flip side of that is that treating your OSA will also give any RLS or PLMs more opportunity to fully manifest. It's like walking a tightrope. But about the MAD, one downside is that there is no way to regularly monitor it's effectiveness. I'd hate to see you make expensive treatment decisions based on incomplete information. You could benefit from an in-lab study. I wouldn't expect either the neuro doc or the dentist to be in tune with all this. Can't remember how many doctors I've been through who didn't grasp the interactions of OSA and RLS/PLMD. As a disclaimer, I admit I am a huge proponent of CPAP treatment due to how it has changed my life. YMMV.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

rvjimzhr1
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Location: Medford, OR

Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Fri Aug 11, 2017 5:08 pm

Thanks Sleepdancer for your thoughts! Right or wrong, I've taken the plunge and have been fitted for the MAD. I expect to get the device in several weeks. Now that I'm back home and settled in, I'm trying to get back into a bedtime/sleep routine and trying to determine the ideal time to take my Horizant.

Jim

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Sun Aug 13, 2017 3:55 am

I hope the device works for you, Jim. Did the doctor suggest how you might be able to tell if it's working - feeling rested in the mornings?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

dboy
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Re: Requip & Erectile Dysfunction ???

Postby dboy » Mon Nov 20, 2017 10:09 pm

I thought I was going nuts when I mentioned to my GP that my ED started when I started taking Requip 7 months ago. I started on .25 for a couple months, then .5 and now i'm on 1mg and my RLS kicks in sometimes in mid-afternoon. I keep a couple .5's with me just in case. My Dr. said that the Requip wouldn't be the cause of the ED that it must be something else. I'm only 57 and have had a very active sex life up until now. I never would have imagined that I'd have ED. Funny thing is that I found out early on when my symptoms would get bad right before/after going to bed that sometimes an orgasm would help alleviate the RLS symptoms.

Polar Bear
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Re: Requip & Erectile Dysfunction ???

Postby Polar Bear » Mon Nov 20, 2017 11:17 pm

dboy, welcome to the discussion board.
Many of our members have discovered that sexual activity will put our RLS symptoms to rest.
Unfortunately, not for me. I'll get about 10 minutes free and then the symptoms start again.

Are you by any chance taking an anti depressant, these very commonly cause ED.
If not, and you have ruled out any other cause, have not started a new medication, then it is always possible that it is a side effect of Ropinerole/Requip. We all react differently to medication (and especially to treatment of RLS).
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Tue Nov 21, 2017 7:23 am

dboy - the first thing I noticed about your post is that part where you are increasing the dose and your symptoms are worse, now starting in mid afternoon. Definitely signs of augmentation - if you are not familiar with it, please read about it. My meds are working and I am unlikely to be very helpful at the moment - can barely type, lol - try the link in my signature to get to a bit about it. Lots more if you hunt around.
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.

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Thu Nov 23, 2017 5:08 am

Me too, that's the thing that struck me. Augmentation is a common side effect of the class of medications called dopamine agonists (includes ropinirole and pramipexole), and the another dopamine med that's used for WED/RLS but is not an agonist (levo-carbidopa /Sinemet).

Augmentation of RLS/WED has happened to you if you get symptoms 2 or more hour earlier in the day than before you started taking the med; and also the symptoms are more severe, or have spread e.g. to your arms, or start sooner when you sit or lie down.

It may surprise you to know that many doctors don't know what augmentation is. They've maybe prescribed these medications to people with Parkinson's for years and raised the dose multiple times without any ill effects. So they don't (at first) get that it's different with WED/RLS. The new recommendations of some RLS/WED specialists are to limit the daily dose of ropinirole to 1 mg.

It would be very useful for you to read more about augmentation. A good place to start is by following the link in my signature line below this post. Most of these are intended for patients to bring to their doctors, to guide them to more knowledge about augmentation, but the brochures by the RLS Foundation are very accessible and you could start there. Also the Johns Hopkins one, sorry about the tiny font. And all of them are good to read all or parts, if you can.

Note that there are ways to decrease the risk that you'll augment: keep your dose as low as possible (higher doses increase your risk), and make sure the level of ferritin in your blood is at least 100 ng/ml and the transferrin saturation is 20% (low iron stores increase the risk), and the best one, if only there were viable alternatives, is switch to a different class of meds (because the longer the time you're on the dopamine med, the greater your risk). Ferritin is not a measure of iron in your hemoglobin, which can be fine yet still your ferrtin is low. Ferritin sort of represents iron stores in body tissues including the brain, and that's what the issue is in RLS/WED - we have low iron in parts of our brains, and trouble keeping iron in our bodies. Anyway, get your ferritin checked, it's the single most important measure you take.

Regarding the ED - doctors will say no it's not possible, then later they will learn that they were wrong! I had a similar issue with opioids, an inability to orgasm despite being almost there ( :x ) and my doctor refused to acknowledge that opioids could do this. A few years later, after I had reduced the dose (thanks to dietary changes that helped the WED/RLS), the problem went away. When I told her, she acted as if she agreed that opioids could cause that problem - so maybe she had looked it up meantime!
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Sun Dec 10, 2017 7:16 pm

I've not been here for a few months so thought I'd comment on my progress in a couple of areas.

First off, re: the issues of sex & RLS.....I found that fairly often orgasm would relieve my RLS symptoms. It didn't always work but often enough that it was always my 'go to". This was during the years that I was taking Carbidopa-Levo and then later with Requip.

I've been on Horizant since about June. I quickly worked up to 1200mg every evening about 6PM. It's working great!! I seldom have any RLS symptoms and when I do they are far less severe and don't last long. What a relief! I've been using the MAD since Sept and still trying to get it adjusted and get consistent results. I did experience serious TMJ for awhile so I quit using the MAD for a week or so until the TMJ pain went away. Then I backed off the underbite adjustment and started over. I'm very slowly creating more underbite and "I think" I'm seeing occasional results. My dentist who is monitoring all this is excited with what he sees. I'm not quite as excited as he is. I'm generally getting 4-7 hours of sleep a night but still often waking 1-3 hours after I go to sleep. Sometimes I can't go back to sleep so get up and read for 1-2 hours and then go back to bed. I'm having no TMJ issues now and the MAD is no problem to wear at night.

Tonight I finally get into the hospital for an overnight sleep study. Hopefully that will tell us what, if any, good this MAD is doing. I've an appt to discuss the results with my neurologist early January.

They say not to drink alcohol while taking Horizant. Of course I had to try anyway. I don't drink much anyway but do like a small drink most nights. My experiments with very small amounts of wine, both red and white, as well as whiskey are mixed. The red wine caused me extreme RLS where I couldn't recline or even sit. I walked the floor for hours and it was almost like that period when I was withdrawing from Requip. The white wine often causes no issues at all but just when I think it's okay.....RLS for a couple of hours though not as severe as with the Red. I've tried very small amounts of whiskey....less than an ounce....several times and had no RLS. I am gun shy now but will continue the experiments.

A related issue which was discussed here months ago was the relationship of antihistamines to both RLS and BPH. Thanks to another member here I was able to get prescribed Cialis Daily 5mg which eliminated my BPH as well as the ED! So life is good and RLS is basically gone and I am very thankful!
Now lets see what the sleep study shows.

Jim

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Re: Requip & Erectile Dysfunction ???

Postby Polar Bear » Mon Dec 11, 2017 1:06 am

You sound in a good place. Good luck with your sleep study
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Mon Dec 18, 2017 1:51 am

Hope you learn lots from the sleep study, Jim.

You might want to try organic wines. I'm still experimenting, but I had to retract my previous idea that reds were bad and whites were ok, because some reds don't bother me, and some whites do. I have yet to put my finger on what it is that's bad. Twice I've had organic wines (once a red, once a white) and they didn't bother me. Not even close to statistical significance, but I'll try a few more organics to see.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Mon Dec 18, 2017 7:45 pm

badnights wrote:Twice I've had organic wines (once a red, once a white) and they didn't bother me. Not even close to statistical significance, but I'll try a few more organics to see.


Hard to suffer through all that drinking, but for the sake of the rest of us, I suppose you must :mrgreen: .
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.


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