I'm still having a rough time with RLS despite my usual gabapentin and temgesic.
My doctor has suggested trying clonazepam in combination with my existing medication and I wondered what experience my fellow sufferers had with it.
I've tried other benzo sleeping tablets in the past but the RL always broke through the sleep and I'd have to get up and pace about in a drugged stupor and had several falls caused by falling asleep on my feet - so I stopped taking them. The NHS website does say that clonazepam can help with RLS.
Thanks in advance for any help.
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puzzler1
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The problem with clonazepam is that it has a long half life on 40 hours so it can cause next day sleepiness. A better alternative is ambien which is not a benzodiazapine. Have you had your ferritin checked?
Hi Sue, Thanks for the advice. I had my ferritin checked last year and it was 130ish but I'm going to ask for another test as things have deteriorated. I don't know much about ambien but I'll look it up on here. I'll probably accept the clonazepam and try it. My consultant's pretty good (but no great expert on RLS) and I feel that I have to keep trying what's being suggested so we can tick it off the NHS list, if you know what I mean.
You were on a very low dose of temgesic las time you posted and were experiencing flushes. Did you try increasing the dose to 0.4mg and reducing the gabapentin in case it was causing rare augmentation? Are the flushes still an issue on Temgesic?As Sue mentions clonazepam can cause daytime sedation.
I would suggest increasing the temgesic as 0.2mg is a very low dose.
Hi Jooles, Thanks for your reply. I'm still having the hot flushes and the more temgesic I take the worse they are. When I take 2 x 200mcg, they make me feel as if I'm going to faint. much worse than menopause flushes. I'm taking 5 x 100 gabapentin and 1.5 x 200mcg temgesic, but trying to reduce the temgesic to 1, to help the flushes.You mention augmentation on Gabapentin. My symptoms have gradually been getting worse over the last 6 months and at the moment the evening and night symptoms are as bad as my pramipexole augmentation and withdrawal. Badly in my arms and legs and up 5 or 6 times a night pacing and swinging/rubbing my arms. Is it possible I'm augmenting on gabapentin? Do you know if there are any problems withdrawing from it? Thanks, as always, for your help.
You're not augmenting, you are just not taking enough. But you had side effects you couldn't tolerate and even have reduced from 700 mg to 500 mg. So it is not unexpected that your RLS is worse.
Hi again, just in addition to my reply a minute ago, I should say that on occasion when the nights are so bad I just can't stand it any more, I take 2 x100mg madopar. This was twice in June and twice in July. Do think that has an effect on the possible augmentation?
It's difficult to suggest what is causing the worsening of your RLS over the last 6 months.Taking Madopar will fire up the D1 dopamine receptors and they can take months to recover. Maybe dispose of Madopar so you're not tempted in future?
Did 2 x 200mcg Temgesic work fully to cover RLS in the beginning or never?
If the flushes and sweating on temgesic are intolerable, you may not want to increase the dose. There doesn't seem any point staying on it if the RLS has been bad over the last 6 months.
Perhaps another opioid might suit better?
As for gabapentin causing augmentation, I believe it does but most experts say it doesn't. So another difficult question.
Did you add gabapentin because the Temgesic wasn't working?
It may be worth discussing with Dr Buchfuhrer via his website at the Southern California rls Centre.
If you decide to stop either drug - do it one by one and very slowly.
I second Joolsg. Your rls has been and apparently still is severe. You may need a higher dose of Temgesic to control the symptoms. I hope tue side effects are absent or bearable?
Hi Lotte, I've just replied to Jools. The side effects are the chronic hot flushes, which almost knock me off my feet and make me feel awful. They are more bearable, the lower the dose, and 1 x 200mcg is best for me. Perhaps the clonazepam will be a useful addition? As I said to Sue, I'll probably have to give it a try, to keep the consultant on side!Thanks for your help.
I’m taking half a tab of Clonezapam ( 250 - cut from 500mg tab ) and find it helps with no side fix along Pregabalin which I I have now increased to 100 following easing of side fx from Pregabalin @75 mg 7 weeks later…the neurologist has said I can go to the full tab of clonezpam however I prefer to dial up the Pregabalin as side effects subside to find an optimal dosage if possible. I’ll keep an open mind tho as this evolves! Hope that helps a bit
Hi, thanks very much for letting me know about your experiences. Just wondered how bad your RLS was and whether you ever took a dopamine agonist (like pramipexole)?
Yep I did take ropinirole, augmented within 2 months after reaching about 1 mg in retrospect, reached 1.75 by Xmas briefly and managed it down slowly and out by May this yr . I reacted to it badly both side fx and augmentation at low dose - the good news was I not on it too long, ( less than a yr); withdrawal wasn’t bad at all , in fact every day I felt better and it took 7 weeks post finishing for all side fx to subside.
As far as my Rls goes , it’s only at night in my feet - without meds I wake every hour so 5-6 times per night and walk 5 mins , then go back to bed for another hour. Bizarrely I feel fine when I wake up in morning finally. So in short without meds my night is a nightmare but my day is very good so meds impacting my day is a very big trade off for me that I don’t really want to make. I would define it as pretty bad tho I appreciate many on this board have rls issues that way off the scale and my situation could be a lot lot worse .
_ I used it e keep on going with Clonazepam (0.25...0.4...0.5....0.6mg, this latter maximum ever; currently 0.5mg, five drops) for many years, even before the good diagnoses at age of 65.
_ Retired since 2015, I considered Clonazepam saved my life, both career and real life (RLS/PLMS since 7's, and UARS, since 17's);
_ Love Clonazepam (no side effects pretty much), stop, tapering, when I want (did many times); in spite of some 20 to 30 days of significant side effects. So-called long half life, 40 hours, for me, is a actually an advantage, because I am able to mantain low doses;
_ Yet, I must say, I don't see Clonazepam to stop RLS crisis themselves (for this I use Energy Medicine and Psycology Energy techniques). I used it to increase arousal threshold , muscle relaxation, diminish anxiet, more stable REM stages, bring some sleepness for my second phase of sleeping, after main crisis around 4:00 am, etc.
_ Clonazepam is the sole single medication I use, beyond 600mg of Magnesium.
Hi Cowbsky. Thanks for answering my query. And good to know about the dosage you take. You say you had significant side effects for 20 - 30 days. Was this at the beginning of taking Clonazepam? and what were the side effects you suffered? Thanks again.
....side effects when, from time to time, i decide to stop it...agitation in general, anxiety, RLS get worse, etc ..than things get back to my background without the clonazepam . Actually I am able to handle without clonazepam, but not as good as using It; It brings very significant plus..
....have to add: I do believe, at least for me, clonazepam only pay off up to some 0.6mg...more than things complicate, such as side effects in general, disruption of sleep arquiteture (too prolonged time of REM stage, etc)
Clonazepam is a BDZ with anticonvulsant, muscle relaxant, sedative, and antianxiety effects. I have taken Rivotril as the only drug for my RLS and it worked well for a while until I had to take 2.5 MG dose (how single dose at night) and I noticed that I was losing memory. So I stopped taking it. It is not usually used Clonazepam as main or only medicine for RLS, except for mild cases like mine, but it gives good results when associated with another medicine, be it DA, A2D Gabapentin, or a mild opioid. In these cases it has the advantage that it can help sleep and control leg movements with a lower dose of the main medication. But be careful, BDZs produce tolerance and you can't take them for a long time. They also affect memory.
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