Requip & Erectile Dysfunction ???

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Sat Feb 24, 2018 4:17 pm

I had my hospital sleep study and it basically confirmed what I'd been told after the home sleep study....mild obstructive sleep apnea. The sleep study itself was a 'pain" and I don't care to go through it again.

In the months leading up to the study I had been continually adjusting the MAD, giving myself more and more of an underbite, hoping to "land" on the ideal setting. The neurologist had recommended a device which would strap around my upper body and prevent me from sleeping on my back, this being the worst position for one with sleep apnea. His device cost $200! I found one online for $50 and began using it. It's called a Slumber Bump. It worked and kept me off my back but it was also a PITA. I began using it after the sleep study.

After the sleep study the Neurologist wanted to do an oximeter test at home and he wanted me to adjust the MAD to exactly where it was when I had the sleep study. Fortunately, I'd been keeping very detailed notes of all the adjustments since getting the MAD in September. The oximeter test showed that I was getting ample oxygen and that the MAD was doing its job.

In the last month and a half I've started getting more and better sleep! I quit using the Slumber Bump just to see what would happen. Nothing bad happened so that device is in the closet. It's becoming the norm for me to sleep 7-8 hours, sometimes waking once in the middle of the night and more and more not waking at all. I have a gentle alarm set for 6AM and sometimes I hear it and sometimes I don't. Sometimes I wake a little before the alarm goes off and sometimes I actually don't hear it and wake about 7AM. The neurologist had emphasized that I should be waking at the same time every morning, hence the alarm. I followed his instructions for months during this "retraining period". I now go to sleep between 10-11 each night, wake between 5-7 each morning and feel (I owe it to myself :)) no guilt if I don't get up til 7 now and then. I no longer read in bed and don't go to bed until I have dozed off in my recliner. Regularly during the week my girlfriend and I might go to bed/sleep as late as midnight. Still, I wake about the same time each morning as I explained above. For me that is totally acceptable and a goal we set when I started this "journey".

As to my RLS. I had been taking Horizant at $150/month. My local VA does not dispense Horizant but had told me they would review my chart notes and consider Horizant in the future. The neurologist sent the chart notes and a RX for Horizant. The VA responded by sending me a 2 month supply of Gabapentin which I have been taking. For the most part the Gabapentin is working but I am having RLS more often than I was with the Horizant. With both drugs any RLS was occuring later in the evening 2-3 hours after taking the drug. On the GABA the RLS is more severe than when on the Horizant. The dose for both drugs is the same, 1200MG at 7PM nightly. I am not waking with RLS on either drug.

Where I had occasionally smoked weed to calm the mild RLS when on Horizant, I've not had such good luck since going on gabapentin. The weed either doesn't work or it works for a short time and then I have to smoke again as the RLS gets worse and worse. I don't understand why the weed would have different effect with one drug over the other as I think the only difference between the two is the time release factor. So I'll keep trying the Gaba and consider another request to the VA for Horizant if necessary.

I've done no research into whether I can reaasonably expect the Gaba or the Horizant to last 'forever' or whether I should expect it to be short term like the dopamine agonist drugs were.

Bottom line.....I am sleeping better than I have for 40 years and I'm still pinching myself when I think about it.

Jim

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Re: Requip & Erectile Dysfunction ???

Postby Rustsmith » Sat Feb 24, 2018 4:30 pm

Jim, the primary difference between gabapentin and Horizant is the way that it is adsorbed. It isn't an issue of time release. Gabapentin is only adsorbed by a short part of the intestinal tract and the modification to Horizant allows it to be adsorbed throughout the intestines. Once in the blood stream, Horizant becomes gabapentin. So, the difference in your case is probably due to not as much gabapentin as Horizant is getting into the bloodstream.

As for how long it will last, that varies. However, there is no augmentation with gabapentin/Horizant like with the dopamine agonist drugs. So it should work for quite a while. There is often a gradual worsening of RLS with time, so your RLS could get to the point where the gabapentin/Horizant is no longer strong enough. Hopefully that will be many years in your future.
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.

rvjimzhr1
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Joined: Thu Mar 16, 2017 7:46 pm
Location: Medford, OR

Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Mon Feb 26, 2018 7:01 pm

Thanks for that info Steve! I just spoke with my neurologist's medical asst and she will pass on to him this latest 'critique' of gabapentin. It sounds like maybe the only thing I need to try is bumping up my 7PMdose from 1200 to 1800mg. Maybe that puts more of the gaba into my bloodstream and the occasional RLS, which seems to come on from 9-11PM, will not occur. The other tack may be to just try again to get the VA to prescribe the Horizant since it worked so well and the Gaba is not as effective. What do u think?

Jim

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Re: Requip & Erectile Dysfunction ???

Postby Rustsmith » Mon Feb 26, 2018 7:18 pm

Of course the easier approach is to try changing the dosage since that doesn't require having to deal with the VA again. But there is a good chance that you are one of the people who simply cannot get enough gabapentin into your blood stream, which is why they developed Horizant. I just looked and found that the patents on Horizant do not expire for another four years, so you cannot expect a generic for it anytime soon.
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.

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Wed Feb 28, 2018 5:40 am

Try to get the Horizant covered. One of the problems with gapapentin is that it's absorbed erratically, so you don't get the same dose into your bloodstream every time you take it. It sucks that you had good control and now you don't, consequently your quality of life has decreased and your productivity as a member of the human race falls off accordingly. They SHOULD pay, darn it all.
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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Location: Medford, OR

Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Wed Apr 11, 2018 10:49 pm

The neuro just sent a new RX and notes to the VA so we're waiting for their response. Fingers crossed.

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Mon Apr 16, 2018 5:47 am

That took some time :(
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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Location: Medford, OR

Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Mon Apr 16, 2018 3:05 pm

The VA sent more gabapentin after 'we' made a request for Horizant. I then began taking 2 gabapentin at 1800 and then 1 more at 2000. This dosage gave decent results some of the time but was ineffective some of the time. Hence, the second request to the VA which is still being 'considered' as of 4/14. Based on the last time we made this request, the VA doesn't communicate with either my neurologist or me......they just send the drug they approve of and you just wait by the mailbox.

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Sat Apr 21, 2018 2:40 am

Sheesh.
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 » Fri Jun 08, 2018 12:24 am

Finally got Horizant from the VA. That process would have had me pulling my hair out....if I had any. They approved it and then a week or so later said they wanted me to try Lyrica. I told them I'd tried it and that fact was in the Neurologist's chart notes. They said to send the notes again. He did. Then they called and said I was good to go and they would mail the Horizant. I said don't mail it....I'll pick up it up tomorrow because I'm leaving town. I got there the next day and was told it had been mailed. Was I p****ed? Yep. So they went and looked and found it for me. I signed for it and took about 3 steps from the window when the 'light bulb went on' and I thought to open the package and confirm I had the right thing. Good thought! They had given me (30) 600mg caplets which at 1200mg/day would last me 15 days. That's when I learned that, according to the VA, the manufacturer's recommended dose is 600mg/day and that is the max they will give me.....not the 1200mg/day the neuro had been prescribing. The VA won't budge on the dose but did say that if my neuro "is aware of a study or convincing information which says more than 600mg is ok...." they will consider it.

So I've been on 600mg/day for 2 weeks now. I'm taking the pill with my evening meal generally between 5PM and 8PM. I'm still having peridodic episodes of leg and arm movement. Generally this is mild and sometimes it just goes away without me doing anything. Sometimes I can walk it off. Then other times movements are more severe and long lasting. This is when I vape and I've found that vaping 'flower' works very well and quickly. Vaping oil, doesn't seem to work at all....even oil that is 70% THC. I'd like to find a CBD/THC ratio in the oil that does work.

I've got another 30 day supply of Horizant coming soon and will wait and see if things change. I've been going thru this process for nearly 15 months since kicking the Requip and, admittedly, I'm getting confused as to whether the Horizant is any better than the gaba. I seem to have both severe and mild RLS episodes with both. And I have periods of days on end with no RLS. Also, with both I have periods of insomnia from 1-4 hours.

I guess the bottom line is that I am much better off today than I was when I gave up Requip. I am really fortunate that my issues are no more severe than they are so if it gets no better than this, then I am thankful.

Jim

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Sun Jun 10, 2018 4:25 am

Ah Jim. It sucks to have to be grateful that we're in the frying pan and not the fire. Of course it's better in the frying pan, but gee.

Horizant might not be any better than gabapentin. Its advantage is that it bypasses the issues of erratic absorption that gabapentin has, by being absorbed as a prodrug of gabapentin and turning into gabapentin once it's inside. Gabapentin, Lyrica, Horizant - - none of these anti-convulsants are adequately effective against severe WED/RLS. Usually they need to be combined with something else to control the symptoms. Did you ever get to try Horizant at 1200 mg ?

The insomnia is a different problem. It would probably be worse without the anti-convulsant. I hope the vaping continues to work. Or rather, I hope you find something that works better.
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 » Wed Jun 13, 2018 3:58 am

When I read your latest post a couple days ago, I was at a loss for words. Still am. I feel exhausted from what so many of us go through, over and over and over. Just wish I saw more change - doesn't seem nearly fast enough.

I empathize and hope it changes soon.
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.

rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Thu Jun 14, 2018 7:10 pm

Yes, Beth, I was taking 1200mg of Horizant when the VA decided I needed to try the gabapentin. The VA didn't like that I was on 1200 and now will only give me 600mg/day. Having been on the Horizant from the VA now for 24 days my confusion continues. Some things I've learned....

I've not been consuming any alcohol in the evenings, and only the occasional beer after golf mid-day, and without the alcohol I have irregular nights with no RLS. Not guaranteed though. On nights where I eat a pre-bedtime snack of fresh fruit I, almost without exception, have RLS. I guess this just confirms, what I've long thought, that sugar, whether from alcohol or otherwise, brings on RLS.

I've also been experimenting with vaping to counter insomnia. What I am seeing is that on the Horizant nearly every time I vape, I can expect RLS to follow soon after. I'm not sure that this happened with the gabapentin, it may have but since I wasn't using the weed for sleep while on the gaba, I can't say for sure. This is disappointing but starting tonight I will not snack on fruit and will not vape except to kick the RLS and we'll see what happens.

To your point, Beth, about these anti-convulsants working best when combined with another drug, last year I mentioned to my neurologist the option of combining thse drugs with opiates. He immediately 'blew' me off so I suspect that he's not on board with any opiate use.

My last thought is that, I'm guessing, I'll most likely end up on either 1200mg gaba or 600mg Horizant and that when either 'fails' I'll vape the flower and then sleep as insomnia allows. The rub is that I travel a lot and can't/won't take my weed with me if I travel out of OR, WA or CA due to illegality and don't want to end up in jail or otherwise. Oh, well it could be worse.

Jim

rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Thu Jul 12, 2018 4:20 am

I think the medication issue is resolved at least for the time being. I decided that the 600mg Horizant, was not working as well as the 1800mg gabapentin. After going thru the hassle of getting the VA to prescribe it, I opted to go back to the gabapentin. It's been 3 weeks and I still have the occasional RLS but it's often very mild and I walk briefly and it's gone. When movements are more severe, I vape and that does it. I don't wake up in the middle of the night with RLS though I do wake with insomnia now and then. I'm getting more 6-8 hour sleep nights than ever. And, I can eat fruit in the evening and don't seem to be bothered as I was when on Horizant.

On another subject, I wonder if anyone has heard anything on the efficacy of CBD tincture for RLS. I have friends who are successfully using it for pain and I just read that some are using it to control seizures.

Jim

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Re: Requip & Erectile Dysfunction ???

Postby Polar Bear » Thu Jul 12, 2018 2:43 pm

With regard to CBD I've been making enquiries about the CBD Oil. Here in UK the CBD Oil is legal but not the THC. As far as I can gather the CBD Oil doesn't do much for the RLS symptoms on its own.
I believe CBD tincture is a liquid that contains a small amount of hemp infusion.
Betty
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