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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badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Mon May 22, 2017 2:25 pm

Jim, it's wonderful that you're getting sleep. I still don't get 6-8 hours unbroken ever, but I am happy to be getting 6-8 hours with a number of awakenings on most nights nowadays (I am in an awakening right now)/
Beth - Wishing you all restful sleep tonight
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rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Mon May 22, 2017 8:29 pm

Thanks Beth! I hope you find a way to get that 6-8 hours unbroken.

Jim

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Tue May 23, 2017 7:59 am

:) I hope, too
Beth - Wishing you all restful sleep tonight
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rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Sat Jun 10, 2017 4:19 pm

I've now had almost 'perfect' sleep since starting the Horizant/Temazepam regimen nearly a month ago. The first 23 nights I had no rls movements and slept well for 5-8 hours. Sometimes I'd wake with an alarm and other times I'd wake a little earlier. Sometimes I slept straight thru but usually I had 1 bathroom visit during the night. I really got used to this after 25-30 years of really lousy sleep!

I started with 15mg of temazepam and after 19 days of feeling "over-drugged", I figured out how to cut the capsule in half and take 7.5mg nightly. That helped immensely! Though I did not sleep as soundly and woke more nights for the loo, my mental state was far improved.

Then on night 24 I slept at my normal, woke 4 hours later, went to my recliner after 15 minutes, read for an hour til I dozed and then back to bed for 2 hours of sleep until the alarm went off. Okay, 1 bad night now and then but no rls issues so I can handle it.

Last night, #25, I got rls legs while in my recliner before I had even taken the temazepam. I had to 'walk it off' for about 5 minutes, sat back down, took the temazepam a little later and went to sleep at 10, my normal time. Went immediately to sleep but woke 2 hours later! Went to my chair to read and here comes the rls legs again. I walked that off again and read for an hour and a half, went back to bed and slept til the alarm at 6.

Sooo, why after so many days of no rls and decent sleep do I suddenly start waking; needing to get up and read because I can't go back to sleep; and have rls AGAIN? Is this the norm? Should I expect this to continue? Or will it be an occasional thing? I really have gotten used to good sleep and no rls!

Now I'm a little worried about how things will go when the temazepam trial runs out in 5 days.

Jim

ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Sun Jun 11, 2017 6:13 am

Hmmm - too tired to make sense - will try to come back tomorrow when awake and remember to respond. Hang in there!
Ann - Take what you need, leave the rest

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stjohnh
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Re: Requip & Erectile Dysfunction ???

Postby stjohnh » Sun Jun 11, 2017 2:54 pm

Jim, That is puzzling. Was last night bad too? What other medicines do you take? While RLS is notoriously variable, your situation seems a little different. Have you made any other changes in your life? Stressed out? Got a cold?
Blessings,
Holland

rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Sun Jun 11, 2017 3:07 pm

Last night was a good following the 2 previous. Last night I took the temazepam at 2115, expecting doze and then hit the sack at 2200 as usual. Instead I fell asleep in my chair sometime after 2130, woke at 2245, went to bed and slept straight thru 'til 0415. That was nice! I've had some stress lately due to some family issues and maybe that explains the 2 breaks in the good sleep. I'm not sick and there's nothing else going on that would explain it.

Jim

stjohnh
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Re: Requip & Erectile Dysfunction ???

Postby stjohnh » Sun Jun 11, 2017 5:41 pm

A couple of bad nights while stressed out would be "normal" for me. I hope the good nights continue.
Blessings,
Holland

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Mon Jun 12, 2017 12:13 am

I find my symptoms are up and down regardless of my stress levels. Worse when I'm stressed out, too, but sometimes there seems to be no explanation. Worse in the days leading up to my period, but I guess that's not a problem for you :-D Worse if I drank coffee, but sometimes I can drink coffee without apparent effect. Either it's truly random or there are factors I haven't identified that make it go up and down.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Mon Jun 12, 2017 1:52 am

badnights wrote:I find my symptoms are up and down regardless of my stress levels. ... Either it's truly random or there are factors I haven't identified that make it go up and down.


THIS!!!!!
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
Posts: 78
Joined: Thu Mar 16, 2017 7:46 pm
Location: Medford, OR

Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Mon Jun 12, 2017 1:56 pm

Sorry Holland...didn't answer your question about drugs. Other than the Horizant and short term temazepam, I take ranitidine for gerd and simvastatin. Oh, and cialis daily.

I'd not thought about rls being "notoriously variable". Knowing that I'm no longer concerned about it. I'll take the sleep I'm getting now and enjoy it!!
Last night was solid from 2200-0500. I've reintroduced early morning coffee into my day. I drink much less now, 4 cups (12oz) of 'half-caff'. This seems to have no effect on my sleep. I've also tried a 4oz glass of white wine, twice, around dinner time and had no adverse effects as I had with the Lyrica.

I have 3 more nights on temazepam. At the risk of "poking the sleeping bear", I'm wondering what might be my next step if the Horizant alone does not take care of the rls and sleep.

Jim

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Tue Jun 13, 2017 8:47 am

If sleep is the only issue after the temazepam runs out, perhaps one of the Z-drugs like zolpidem or zopiclone or eszopiclone.

If RLS/WED sensations are the issue, you'll probably need a DA or an opioid.... and DAs have not been good to you. However- people who have augmented do take DAs again, usually at a much lower dose and in combination or alternation with another medication. I take, in addition to my hydromorphone, a dopamine med - levo-carbidopa - twice a week, plus as needed but never more than 3 days in a row or 4 in a week, and small amounts when I do take it. Ann takes pramipexole for a few days or is it weeks, then takes methadone. I think. The main point being, we alternate. Something like that might work for you, or a steady low dose in combination with your gabapentin.

But if DAs are too scary, codeine - which is pretty mild - might be just the ticket. It's fast-acting but also short-acting. It might be good to get you to sleep, or back to sleep, but I don't know if you'd run into problems with it being insufficient.

You don't want to make a problem where none exists. But you might want to have a discussion with your doctor before the temazepam runs out - I guess it's probably too late for that - so that he has something in mind should you require it.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Tue Jun 13, 2017 6:00 pm

Side effects aside....for anyone who had dose escalation and augmentation, there IS hope to use DAs again.

Members who have been here awhile here have heard me say this many times; Beth referenced what I do, so if it is helpful and new info to you, please continue reading.

I augmented in about 7-10 days initially. I had dose escalation and nasty side effects etc. because of it. In retrospect, my serum ferritin was between 8 and 16 during that time and we didn't know then how important serum ferritin was. A few years after stopping all DAs, I successfully alternated DAs and opioids - 1 day on, 1 day off. Kept me from augmenting with the DA and from having tolerance with the opioid.

But, more recently, I have had a series of iron infusions. My serum ferritin is now kept over 100 at all times, and is best for symptoms when is between 200 and 250. I have been testing how far I can go taking a DA without augmenting. First I tried 2 weeks - no problem. Then a month. Then 2 months. Now I am testing 3 months. I do take an opioid with it - from a side effect issue, I get my best sleep when I take them together. This allows me to take about 1/3 of the opioid dose I was taking and about 1/2 of the pramipexole dose I need when I use it alone.

In addition to what Beth said about opioid options, let me add that tramadol might be an option a doctor could get behind.
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
Posts: 78
Joined: Thu Mar 16, 2017 7:46 pm
Location: Medford, OR

Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Sat Jul 01, 2017 1:26 pm

I've now been off the temazepam for about 2 weeks. I seem to have stabilized with the 1200mg of Horizant and this is what is now typical for me:

I get up every morning to an alarm at 6 unless I wake earlier, sometime after 5. I'm active all day, take no naps and am in my recliner, after dinner, by 6-7pm. I take the Horizant at 7pm and by 8 or so am fighting to stay awake. Usually I have no RLS movements. If I do, I get up for a very few minutes and the movements are gone.

I go to bed at 10pm. This is where things vary from night to night. Sometimes I go right to sleep but other times, after 15 minutes (per my doc) I go back to the recliner. I read until I doze and then go back to bed and sleep. Interesting that I can barely stay awake in my recliner but when I move to bed, I'm wide awake (I waste no time going from recliner to bed....it's a matter of a minutes or so since I've done all the usual pre-bed chores). When I do get to sleep, I usually wake within 1-2 hours. Sometimes I make a trip to the loo, not because I really need to but because I "might as well as long as I'm awake". I often go right back to sleep but sometimes need to go back to the recliner (after 15 minutes lying in bed awake) until I doze.

Generally I'll have 2-3 nights like this and get 4-6 hours of broken sleep. Then comes a night where I sleep solid from 10-6 and wake with or without an alarm well rested. So the Horizant has pretty much kicked the RLS movements and when I have them they are usually mild and brief though occasionally they are more severe. My issue now is how to get the unbroken sleep. My doc offerred to prescribed the temazepam for one more month knowing that I was using half the 15mg capsule per night. So far I'm not using it.

The doc tried a home sleep study which didn't go well at all. That night instead of going to bed dead tired at 10pm, I was wide awake til 4am when I finally dozed. I went to bed wearing the sleep contraption and woke to the alarm at 6. I think we'll try next a sleep study at the hospital but that won't be for a month or more.

Though I'm looking to 'fix' the broken sleep issue, I'm truly ecstatic now that my RLS movements are so minor and infrequent! If I fix the sleep that will be the "icing on the cake".

Jim

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Wed Jul 05, 2017 7:12 am

I'm happy for you, but sad too, that we find such small things to feel good about.
I'm truly ecstatic now that my RLS movements are so minor and infrequent! If I fix the sleep that will be the "icing on the cake".
4-6 hr broken sleep a night is dreadful. I know this. I live this. And it's not normal, it's unhealthy and disruptive. So I hope you get your icing, and darn fast! I really appreciate the way you record your story here. I am truly curious about the strict regimen of "sleep hygiene" you're following and whether it can make your world better.

I'm about to embark on a similar experience, as I have done every summer since I got this disease. I work in the bush, or the field, whatever one prefers to call it, in remote camps. Usually helicopter supported. So we will be getting up at stupid-o'clock to be in the air by 0730 or 0800. Work in the evenings to plot our data on the base map, discuss what we saw, etc., then sleep. How am I going to manage to sleep?

I have gotten slightly higher doses of meds for the duration, but I am still worried. This is the first summer I'm attempting with such an extreme offset - my body now thinks bedtime is 6 or 7 AM. Quite a jump from my "bedtime" of 2 or 3 AM last fall.

Last summer I went into the field with a 3 or 4 AM bedtime but came out with a 2 or 3 AM one (but also was a dreadful mess, had to take a week off). I'm hoping for something similar this time (not the dreadful mess part). I'm hoping I can survive and not become a basketcase, worse still, not become dangerous. Sigh.

So - I'll let you know if my enforced sleep hygiene does anything good. And you keep letting us know how things are going :)
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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