Clonazapam

[bedith6]

Three months ago I attended the Barberry sleep clinic in Birmingham had bloods and medical history etc. taken and wore an acti watch for two weeks as well as filling in a sleep diary Today I had a call from the neurologist Dr Bagery, very sincere and sympathetic . He said that my RLS was the most severe case he has ever dealt with but although it is challenging because of all the other meds I’ve ever had have failed one way or another. I am taking high dose Tramadol at the moment but it has lost its efficacy. He has now prescribed Clonazapam which I have never tried and I will give it a go, but would like to know what others on this site think about it. He has suggested I keep with the Tramadol for now but wean off them slowly if the Clonazapam helps. I think I shall just give in if this doesn’t help I’m so tired of fighting this horrible condition. Best wishes and peace to all.

[LotteM]

Bedith, great that someone is there who seems to take you seriously. However, I don't think clonazepam is a regular medicine for RLS, although it does get prescribed quite often, i think, as I read about it here.

Have you sent your doctor the recently update guidelines for the treatment of RLS in tue Mayo Clinic Proceedings of last September? Here is t he link: mayoclinicproceedings.org/a...

Also, the NICE guidelines on RLS are not as up to date as these guidelines, but make a good second best. Can't add a link as I am outside of the UK. Given the severity of your RLS (I remember you well from previous posts), you may want to discuss (other) opioids. Recently, quite a few people in the UK have been prescribed buprenorphine (Temgesic or general bup). Something to discuss??

[bedith6 in reply to LotteM]

Hello LotteM. Thank you for your reply. Yes, I mentioned Temgesic to him and although he didn’t say no he obviously wants me to try Clonazapam first. If it works that o.k. by me but I feel that if it doesn’t he may be open to the suggestion of Temgesic or possibly Oxycodone. So we will see, as you do rightly said it’s nice to have someone listen to me at last. He did say that my RLS was actually the worst case he had ever encountered but that he likes a challenge Best Wishes

[LotteM in reply to bedith6]

I hope it works out for you. You have been struggling long enough and I sincerely wish you quiet nights and days. Keep us posted?

[Pippins2]

Hello Bedith ,so sorry to see that you are really struggling. I have Clonazepam, it seems to be a medication that can work well as an add on in combination with a different class of meds such as Tramadol. I find it does make me feel sleepy within a couple of hours of taking it .Now if my rls is severe then ofcourse you have the problem of being out of bed and pacing whilst feeling sleepy .I am sure you won't mind me saying as you have told us before that you are aged 80+ so this does make falling a concern .However on nights when my rls is mild then the Clonazepam does help me sleep through it .It does half a long half life so takes a long time to get out of your system so can leave you a bit groggy the next day until you get used to it .Give it a go alongside your Tramadol but please take extra care with stairs etc until you see how you react to it What strength has the doctor prescribed you Bedith ?

I do hope that it helps you .Let us know how you get on with it .You sound like you need a hug so big hug ,Pipps x

[rls-insomniac]

Hi Bedith, like you my RLS was horrendous. I suffer with refractory RLS and have tried most meds, but they didn't work. I persuaded my consultant to let me try Temgesic for a trial period. So far, it's the only med that gives me relief. It's not 100% but around 75/80%. I've been taking it for just over a year. I take 400 mcgs split into 2 doses. It's changed my life! I'm also in the UK by the way. It's great that your consultant is willing to listen to you. Most don't!

Keep us updated on your progress.

[thoughtful12 in reply to rls-insomniac]

I took Clonazepam for a few years. My advice is to take as little as possible - it affected my mental processing.

[Pippins2 in reply to rls-insomniac]

Hi could I ask which hospital you see your Consultant at please as I am hoping to find a new Consultant and wondering if may be somewhere I could get referred to ,but private message if you prefer. Thankyou

[rls-insomniac in reply to Pippins2]

Hi Pippins, I've just sent you a PM message.

[bedith6]

Thanks for all your replies. I wish I could have gone straight on to Temgesic,, but I suppose I will have to give Clonazapam a trial as he has now prescribed a small dose to begin with. I do think however that if it is not the right medication he may be sympathetic towards Temgesic or another opioid. It seems such a waiting game and never ending for me.

[Jerry57]

Hi bedith6,

Your situation reminded me of my own condition about 8-10 years ago. I was taking the maximum dosage of Tramadol (400mg/day), and was concerned that I would need something stronger. My doctor referred me to a neurologist. The neurologist added Ropinirole and Clonazepam to my tramadol, and told me to try to gradually reduce my tramadol dosage.

I was surprised that it worked. It didn't take long for me to reduce my tramadol by 50 mg/day, than another 50 and another 50, until I was down to 250 mg/day. Then he began taking me off clonazepam and the requip, until I was only taking tramadol. The whole process took less than 6 months.

I hated the clonazepam as it made my head foggy and tired, and I was glad to finally be off it and the requip. I don't know how it worked, but today I am still taking only 250 mg tramadol each day, more or less. I would give it a try if I were you. I hope you get relief.

[Cowbsky in reply to Jerry57]

Hi, empathizing..._ It looks literature suggests Clonazepam (first medication used for RLS) still keep on going as an option;

_ for me )(0.4 mg bed time these days; never higher than 0.5/0.6 mg, when side effects surplies benefietss), in special, it is a wonderful drug, as long as balanced with non-medications techniques and strategies (see my replies, just in case);

_ I tried those big shots Pramipexole (crazy results, never more), Pregabalin (yet bereable, side effects are much worse than Clonazepam's, for me);

_ Benzo's, actually, saved my 39-year professional and career, and has been save my life overall maybe.....again, as long, as combined with solid strategies and non medication techiniques.....

all the best and good luck

[Cowbsky]

..... For me, RLS is a complex issue, something neuroligic, but also has a lot to do with stress and sleep disorder breathing (even very minor ones, which can wake you up). Should one dont wake up you would not have RLS..._ then, Clonazepam would not be meant stopping RLS, but rather muscle relaxation, slow down the simpathetic, stress, increase arousal threshold, back to sleep quickly during arousal/awakenings, slipness, and so forte....

[Hidden]

Hi Bedith, Clonazepam is a medicine for sleeping. So after a while you always get addicted. It works perfectly in the beginning (it was the first medicine prescribed to me by my neurologist then, about 10 years ago, for RLS). After about 5 month I started to get hartbeats I could feel. That was one of the adverse effects. After that I kept using Clonazepam accidentally for years, just to have a good night sleep.