Restless Legs Syndrome (RLS) Discussion Board

I've taken Lyrica for about 15 nights, 8 nights at 250mg. The last 2 nights I got about 6 hours sleep. I'm not sure now that I shouldn't have tried the Lyrica for a longer period. My neuro "loves" Horizant so that's where we went next. Horizant for 24 nights, the last 7 nights at 1200mg. At 1200mg my best 3 nights were nights 4, 5 & 6 with 5, 8 and 5 hours straight sleep respectively. The last night broke that short pattern. I woke with leg movement and had to get up. I fell asleep in my recliner, woke and went back to bed at got a total of 4- 5 1/2 hours sleep.

To answer your questions Legs, My GP is totally out of the picture, I've been dealing with the medical assistant for the neuro, often in person. She asks questions and, I assume, relays them to the neuro. They have been very good about providing samples of the Horizant but they have now "run out of samples".

Summing up several conversations with the assistant last week: She asked if I wanted to try Lyrica again. I told her my goal was both elimination of movements and solid sleep. I told her "I'm not the doctor here, I can only tell him my symptoms and go with his best guess". On Friday she told me the neuro was considering Tramadol. I don't know whether that will be in addition to Horizant or Lyrica OR whether it will be in place of them. Right now, knowing very little about the Tramadol, I'm wondering if it will compiiment the Horizant which is keeping the RLS movements to a tolerable minimum, and take care of the sleep issue......without making me feel more drugged that I do now.

I now have an appointment with the neuro for tomorrow morning. I have no meds for tonight so I have no clue how I'll sleep but I suspect it'll be a crazy, sleepless night.

Jim

The idea of no meds when it isn't a deliberate action is terrifying.

Curious what the doc will try...

I agree but it can't be any worse than going cold turkey off Requip.

Jim

rvjimzhr1 wrote:I agree but it can't be any worse than going cold turkey off Requip.

Jim

Not physically - but to me the psychological decision to do it vs being forced to changes it completely!

Good point Ann!

I'm not sure what your neuro will suggest, but I think the Tramadol and Horizant (or Lyrica) in combination would work best. The Horizant would take care of problems with staying asleep due to hyper-alterness, plus help with the sensations, and the Tramadol would hopefully control the rest of the sensations and movements. Together they would be more effective than either singly, plus you could get away with lower doses, which would lessen any side effects and reduce the chance of tolerance. I hope this is what he's thinking.

Ask for Lyrica instead, if you feel it worked better, or it worked the same but it's cheaper. (is it? I don't know).

Finally got back in to see my neuro last Monday. I took log I've been keeping and we had a long talk. At first he wanted to stop the Horizant and put me on Tramadol which he said would take care of the RLS movements. I told him that though I have not been sleeping well at all, the Horizant has pretty much stopped the movements. The movements are mostly that premature feeling we all get or they are mild and easily dealt with. The last attempt with Lyrica was fairly successful but only for 2-3 days. So for another month I am trying Horizant but with another drug to help with sleep.....15mg Temazepan/Restoril. I've had 3 nights on the Restoril and it works.....best sleep in at least 15 years!

My doc is a "sleep hygiene nazi". He is all about retraining me after years of bad sleep and sleep habits. The Restoril trial is a short-term effort. He hopes that a 30 day trial will train me to sleep and then the Horizant will be sufficient. I can only hope! I'm going with his plan for now. I set an alarm for 0600 daily. I take no naps. I take the Restoril at 2130 with the intention of hitting the sack at 2200. I don't go to bed until I begin to nod off in my chair. So I've had 3 great nights! I wish I could take this drug combo forever but doubt that is wise or that the neuro will approve. So I'll go with his plan, for now, cross my fingers and resist that urge to just get any sleep whenever I can day or night.

Jim

I figure take any sleep you can - so this is good! Temazepam is one of the better benzos because it is short acting. 50% of folks still get dependent on it, though, so regular breaks would be helpful. Not easy, however...

Oh great! I was wondering if I should try all that sleep hygiene stuff (in spite of the perfectly reasonable opinions of Views and Badnights I can't help wondering if part of my problem is that I am undisciplined in my sleeping regime) but now I will wait and see how you get on over the next 30 days! I hope you will keep us posted.

It's wonderful that the Temazepam is working for you.

I use Clonazepam. With it I have fractured sleep, perhaps two hours at a time. Without it I have no sleep. On occasion I have reached 5am without any sleep and then discovered I haven't taken my Clonazepam.

Well that's wonderful! I hope it keeps up. Temazepam is probably one you don't want to take forever. If you do still need something after this period, maybe he will try you on one of the newer sleep aids, the so-called Z-drugs, which aren't benzodiazepenes and have less problems with dependence.

Last night was my 6th night on the Horizant/Temazepam combo. As I wrote before, the first 3 nights were very good with roughly 6-8 hours sleep; some with a bathroom trip in the middle of the night but getting back to sleep and waking with an alarm from a deep sleep. That was difficult knowing I might have continued that deep sleep for who knows how long. So far I've experimented slightly with the times I take each drug. The doc has said to take the Horizant an hour and a half "before symptoms of RLS typically start". Over the years taking the DA drugs the movements would start at varying times, after I got to my recliner, but typically between 6 and 9 PM. I've been varying the Horizant and taking it between 6 and 8PM. The Temazepam I've taken at 915PM or 930 but most recently at 915PM.

So, the last 3 nights were a little different than the first 3. Night 5 was a solid 7 1/2 hours, with a loo trip at 2AM and then deep sleep til the alarm at 6. Night 5 was the same except I got 8 hours with the loo 4AM. Night 6 I slept from about 1015PM, woke and to the loo at 415AM and lay in bed not sleeping til I just gave up and got up at 515AM. So I got 6 good hours but rose a little earlier than I would like. BUT I did like waking naturally WITHOUT that alarm.

My first thoughts this morning were that I should try taking both the Horizant and the Temazepam slightly later in the evening to avoid waking at 5. I really don't want to get into the habit of going to sleep earlier than 10 as I'm pretty active and a sleep routine earlier than 10 would interfere with social and personal schedules (interesting because 2 months ago I'd have done about anything to be sleeping like I am now).

While writing this and giving some thought to my sleep preferences now that it seems like I might, hopefully, have some choices about when I wake, I think I'll continue to take the drugs earlier, at 6PM and 915PM and see if I might get 6-8 hours regularly with a bathroom trip, and either wake to the alarm at 6, or better yet wake about 5 without the alarm.

I'll discuss with my neuro at some point, soon I hope, the possibilities of using both the Temazepam and another sleep drug. Maybe I could switch between 2 drugs every few weeks; or change from one to another after a month so as not to become dependent on either. That sounds too simple but I'll keep hoping that something like that might work.

BETH, what are some of the Z-drugs you are thinking of?

ANN, I believe, and so does my doc, that I should not plan to take the Temazepam long term but I'm curious about your suggestion that 50% DO NOT get dependent on it. How would one know if they were not dependent on it and could some really take it long term?

I really get a lot out of reading the experiences of all of you who are commenting here so thanks a lot for 'being here' and taking the time!!

Jim

Jim, I will answer the question you asked of Beth.

The z-drugs are the latest generation of hypnotic sleep aids. The "z" tag is because the generic names mostly start with a Z. The include drugs with trade names such as Ambien (zolpidem), Lunesta (esziplicone) and Sonata (zalepon). There are a few that are even newer, but since they are not available as generics, they can be exceedingly expensive. The only med my insurance ever refused to cover was one of these latest generation drugs.

Hi Jim - I have no idea how you would know ahead of time - I think you only know AFTER you try to stop. The figure comes from a doctor in the UK - Dr Ashton - who uses a very specific protocol to get people off of benzos. The discussion board about this protocol has thousands of members who participate regularly - hundreds of posts a day. I took them a short time - about 6 months - and I was in the wrong 50 percent! Other people here have posted they stopped without a hitch after taking them years.

Thanks, Steve