Requip & Erectile Dysfunction ???

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badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Sat Apr 01, 2017 5:47 am

really, it took me over 6 min to write that post? so that my reply was 6 minutes outdated by the time I sent it?
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Sat Apr 01, 2017 8:06 am

Okay, where to start.

First off, Legs...that wasn't what I wanted to hear :<( ..at least not the part about your post DA period being so erratic. Right now I'd go for the 3 day sleep period that you experienced...or maybe that's one of those "be careful what you ask for" things. I understand the what you're saying about the long term DA use being. Can I ask what have you done to control your RLS since DA withdrawal, RX-wise? Non RX?

Sleepy, when I was on Requip, and didn't forget to take it, my recliner was not a problem at all. If I forgot that first dose in the early evening then RLS would come on no matter where I was sitting. During this withdrawal I'm still not typically suffering during the day and can sit all day in the recliner. Once RLS kicks in the recliner is generally no better than any other chair and, reclined, is worse. Walking always makes my symptoms tolerable or sometimes just standing up will do it. And I've not been the stereotypical man who goes to sleep after orgasm, generally I'm the one who stays awake for awhile.

I think I read on this forum somewhere that orgasm itself is a DA, as is just the act of standing and/or walking. So, since it has become so difficult, or too often impossible, for me to orgasm, the act itself has become prolonged and intense and more of a marathon. That's why I was comparing sex to extreme physical activity....which I have read IS an RLS trigger. Guess it makes sense to take Sleepy's advice and keeping "studying" to see if there is a negative aspect of sex when it comes to RLS.

Beth, I've never heard of GADS and probably would have been one who initially thought "oh boy". But I'm guessing now that it would right at the top of the "be careful what you ask for" things.

This is my 10th night at it's 0100. My legs started moving at 2230 while in my recliner. I moved to a bar stool and have been sitting here, movement free, while I write this post. I've been here before in the past few days and the bar stool was always temporary relief at best. Maybe tonight will be different.

Jim

rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Sat Apr 01, 2017 9:19 pm

Legs and arms moving all night but sitting on the high bar stool with my legs hanging down worked surprisingly well to nearly eliminate movement. I never could sit in the recliner. Movements nearly gone about 0530. I vaped and went to bed sleeping right away til 0730. Up for the obligatory pit stop and then back to sleep til 1115! Best sleep so far. Dozed and enjoyed being horizontal and didn't get out of bed til 1300, Forgot to mention that week drove a couple of hours to the coast yesterday morning and spent the day walking and sitting on the beach. Drove home about 2000 after a great day! Had no rls while driving. Driving and flying are killers so this was a fun drive!

Jim

legsbestill
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Re: Requip & Erectile Dysfunction ???

Postby legsbestill » Sun Apr 02, 2017 12:41 am

Jim, I'm really sorry if my comments were discouraging. You have already made much quicker progress than I did post d/a so don't think you need to feel too concerned that you will emulate my experience. For all the difficulties I experienced withdrawing, I am 100% delighted to be off mirapexin. The sleep you got last night/today suggests to me that you have turned a corner.

I am almost afraid to set out in any detail my various experimentations over the last 10 months or so as I have taken (am still taking) a circuitous route to find a regime I am satisfied with. My rls continued to improve for nearly six months after I came off mirapexin which I think was because I raised my iron levels over that time. My symptoms now are definitely not as severe as those of some others, but they do require drug treatment.

All the drugs carry side effects and it is trial and error to find what one can tolerate and what is just not bearable. There is also the difficulty of finding a doctor who will prescribe what one needs. Opiates (OxyContin) were very effective in dealing with rls symptoms but I can't get to sleep on them - I lie awake (in a nice mellow state) all night so require additional drugs to overcome that (the best being marajuana). Also after a sleep study I was diagnosed with central sleep apnea which my sleep consultant attributed to OxyContin. She wants me to use neupro (a slow release version of ropinerole) as a mono-therapy but I am paranoid about being reliant on another d/a so will only use it for short stints. Pregabalin has no impact in my legs and bad side effects.

At present I am coming off OxyContin (it is 4 weeks since my last pill and the side effects are finally abating) to see if I can manage with just Kratom which works very well for me. I suspect that Kratom on its own will be just slightly too little and I will need also a very low dose of Oxy but I won't be happy until I find out for sure and I won't know that until I am more than 6 weeks off Oxy as the withdrawals are very similar to rls and last about 6 weeks in diminishing intensity. While I am withdrawing, to make life a bit easier, I am using neupro which is very effective for me but I will stop it again in about two weeks time and use only Kratom. I also use cannabis, usually as an edible to induce sleep (I don't find it effective for rls urge-to-move symptoms as such).

Sorry for the length of the post - my treatment is such a constantly changing mish-mash it is difficult to describe with any brevity. My aim is to use only Kratom and cannabis with neupro available as a fall-back option for occasional breaks from Kratom or when I go through flare up patches. I suspect that in fact I will end up using 5-10 mg OxyContin additionally. It will all become clearer in the next few weeks.

legsbestill
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Re: Requip & Erectile Dysfunction ???

Postby legsbestill » Sun Apr 02, 2017 12:55 am

Ann, I really like your pragmatic arrangement with your spouse to ensure regular intimacy. Although I haven't noticed a link between sex and rls, I do find that sex can cause me to have a very disturbed night afterwards. For this reason, my husband and I made a conscious choice to move our congressional activities to the morning (weekend mornings). There is an ancillary benefit of a nice sense of shared satisfaction which lasts through the morning.

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Sun Apr 02, 2017 9:32 am

Jim I think you're doing really well. You don't have daytime symptoms, and you even sit down for periods of time at night. I don't know if you're going to need something in the way of meds to keep on a more normal schedule, or if you even care about that, but I think it's too soon to worry about that.

Legs I am experimenting with ways to get to sleep. I think 5 or 6 people at least have mentioned that opioids alert them, it seems to be a topic ripe for research. Unfortunatley the Johns Hopkins group that's researching the glutamate connection to hyperalertness gives only passing mention - in all their papers that I've seen - to the role of opioids. Even when I talked to Richard Allen (I volunteered for the glutamate study but was turned down because managing my obligatory withdrawal from meds would be too complicated, they thought), he ackowledged that opioids worked but didn't know why, and didn't sound excited about talking about that aspect of WED.

So I'm curious if you get a sleepy or groggy next-day effect from your edible? And what did you finally manage to acquire, do you even know what kind it is? I know you had a bit of an issue with supply...
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

stjohnh
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Re: Requip & Erectile Dysfunction ???

Postby stjohnh » Sun Apr 02, 2017 7:47 pm

After augmenting on mirapex I switched to neupro, which was somewhat better, but got bad rashes. After months of juggling different combinations I hit on a tolerable regimen that has been stable for at least 6 months.

At 7:30 I take 0.125mg mirapex, 15 mg THC (as a potion of a marijuana Brownie), 50 mg gabapentin, and 660 mg kratom. I get very sleepy (and get stoned feeling) around 8:45 and go to bed at 9, falling asleep in 10-15 min most days, but sometimes takes 30-60 min (no idea why it's not consistent). Between 11-12 I take an additional 5mg THC and 330mg kratom (when I get up to pee). I sleep until about 5am.

With this treatment I feel mildly sleep deprived from awakening until noon, when I start getting steadily sleepier and grouchier. Mild jumpy legs start anywhere from noon until 4pm. More severe later until about 8pm when meds start to kick in. No leg jumping at all when I go to bed at 9.
Blessings,
Holland

rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Sun Apr 02, 2017 10:01 pm

My 12th night is under my belt and it was pretty much what has become the norm. I was up all night mostly walking but had some rest while sitting on a high barstool. In this position I can feel the urge to move but the urges are not as strong . I get so tired I almost have to strap myself to the stool so I don't fall off. Still, if I try to go to sleep....forget it. When the movements stop around 0700 or so, a little MM vape will get me 0-4 hours of fitful sleep and, as important, horizontal relaxation in bed.

Beth, thanks! I do care about what meds, if any, I may need when I reset. Ideally that would be just a little MM and maybe a little Kratom. Am I being unrealistic by thinking/hoping that this withdrawal process could be finished in 2-3 weeks start to finish? I can imagine what a relief it is for you, and others, when you finally find something works to minimize movements and allow you some reasonable sleep.

legsbestill
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Re: Requip & Erectile Dysfunction ???

Postby legsbestill » Sun Apr 02, 2017 10:15 pm

Beth,
I haven't noticed feeling groggy the following day particularly but bear in mind that even groggy would contrast well with how I feel after very little sleep due to alerting. Plus my memory for things going back more than 3 weeks is poor and I have been quite disturbed at night and relatively miserable during the day over the last 3 weeks due to OxyContin withdrawal symptoms and maybe wouldn't have noticed cannabis induced grogginess so much. I will monitor it going forward - am feeling much better these last few days so will probably be more alert to daytime grogginess.

I have only had 4 different lots of mmj to date and there has been an appreciable difference in strength between them. Unfortunately, they never come with any indication of what strain they are. For me the stronger (ie more stoned-making) the strain the better the sleep. I have some pure cbd oil which I can buy legally here and I always take that with the cannabis in the hope it will damp down any psychotic effects of the THC. So far I haven't experienced any ill effects.

There is a good thread about mmj which I think was started by Natwest who is very knowledgeable. Yawny also knows a lot about strains - you could check back through her posts. She had bad experiences with certain strains.

I have started to grow some myself in order to have more control over the strain and also due to problems with accessing it. I don't have tent or equipment - have chosen strains that are supposedly capable of being grown without these in this climate. I germinated the seeds and have the seedlings on a window sill at present. We live beside the international rugby stadium here and there is a big police presence on match days. There was a match on last weekend and it was only when I was going to bed that I realized I had left the labels on the pots facing out to the road: 'sensi skunk', 'medical mass' and 'white widow'. The names don't leave much to the imagination! Luckily the house is set back from the road and it seems so far I remain undetected!

legsbestill
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Re: Requip & Erectile Dysfunction ???

Postby legsbestill » Sun Apr 02, 2017 10:28 pm

Jim, well done on getting this far. It is disappointing not to see more of an improvement but it will come. My understanding is that most people are over the worst after 10 - 14 days but everyone is slightly different. Be careful on your stool. I fell asleep (and fell down) while walking across my bedroom on one occasion and repeatedly when sitting on the side of the bed.

Holland,
do you worry that you might augment again on mirapexin? Do you have a contingency plan for this? I think I am likely to end up on a regime not dissimilar to yours when I finally conclude my tinkering around with my treatment.

stjohnh
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Re: Requip & Erectile Dysfunction ???

Postby stjohnh » Mon Apr 03, 2017 1:33 am

legsbestill wrote:
Holland,
do you worry that you might augment again on mirapexin? Do you have a contingency plan for this? I think I am likely to end up on a regime not dissimilar to yours when I finally conclude my tinkering around with my treatment.


I worry every day about augmenting again, but I hope that by staying on a low dose of Mirapex that my receptors will not downregulate and maybe I will escape augmenting again. I resolved to never increase the Mirapex above the 0.125 mg I take. Every time I have a bad night ( well, they are all bad, but some worse) I worry I may be augmenting. Same on those days my leg jumping starts a little earlier.

If I augment again I may switch back to Neupro, then taper off it in hopes of resetting my receptors again. If that doesn't work, it may be time to start thinking about methadone.

Amazingly, I generally remain upbeat in spite of my severely limited lifestyle. I don't ever plan anything significant after noon, and time after 5pm is always wasted, just trying to make it until the meds kick in and I can sleep (poor as it is). Lucky I have my daughter and grandson close by, a real boost. Thank-you Jesus.

Oh, on the actual topic of this thread, I take daily Cialis, treats both ED and BPH, though orgasm is still slow to achieve.
Blessings,
Holland

legsbestill
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Re: Requip & Erectile Dysfunction ???

Postby legsbestill » Mon Apr 03, 2017 9:54 am

Thank you for that Holland. I am using neupro patches at moment - they (and other DAs) are just the best for me in terms of relief but I am too afraid to incorporate them into a daily routine long-term. I notice how up-beat you usually are and was surprised when you mentioned grouchiness. Your posts are always useful, informed and never depressing.

Am guiltily aware that I am a repeat offender when it comes to shifting off topic. Will try to be more disciplined.

stjohnh
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Re: Requip & Erectile Dysfunction ???

Postby stjohnh » Mon Apr 03, 2017 7:57 pm

There is lots of evidence that low dose DA have less augmentation problems, and there may be a dose low enough that our dopamine receptors don't get oversaturated, that's what I'm hoping will happen for me. DA free days or weeks may serve the same purpose. DAs are a real problem because nothing else works quite as well for most people, but augmentation is a VERY serious limitation.
Blessings,
Holland

rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Tue Apr 04, 2017 1:35 am

Holland, low-dose DA and less augmentation.....that is certainly good to hear! Can you point me to where I might read up on that?

Also, I sent you a private message. Have you seen it?

Jim

ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Tue Apr 04, 2017 2:58 am

Not saying it will happen to everyone - I augmented at .125 mg a pramipexole. While low dose IS important, iron is also. Those who keep their ferritin over 100 AND a very low dose, seem to have a much better chance at not augmenting. Some say we all augment eventually no matter what.

But, anyone who has augmented can spot it very quickly. When you stop at the very beginning, it is much, much, much easier to deal with (I've had it happen a few times) than when you are augmented for a longer time.
Ann - Take what you need, leave the rest

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