New rls medicine

[Mustanggirlgirl]

Hi I am sorry for having yet another question but everyone on here has been so helpful and I have lost trust in doctors. My husband went to neurologist today and told him the ropinirole isn't working anymore and got prescribed to take 2 50 mg primidone to take with the ropinirole at night. Anyone know anything about this medicine? I have googled it but I would rather hear from someone who has tried it. Thank you in advance

[Hidden]

Hi, I've never taken primidone, and I also suspect that you may find that either very few people or no people have taken if for RLS.

This is because it's an unusual choice for RLS. Looking at numerous lists of medications used for RLS, it doesn't appear.

I can see the logic behind it, some anticonvulsants are known to be effective in treating RLS and are in some respects preferable to dopamine agonists such as ropinirole. However the 2 main ones recommended, and known to be effective for RLS are gabapentin and pregabalin., not primidone.

It's good that the doctor is trying this rather than increasing the ropinirole because that could lead to augmentation.

if the primidone doesn't give a satisfactory result it might be better to go back to the doctor and discuss switching to gabapentin or pregabalin.

To support this, here are a couple of links to some overviews of RLS treatment. ( with no mention of primidone).

uptodate.com/contents/treat...

hopkinsmedicine.org/neurolo...

[Mustanggirlgirl in reply to Hidden]

On Google it says it's used to treat essential tremors which I have no knowledge on but thought maybe since that's a form of muscle twitching it would maybe work. The dr only gave him a month worth to try and said if don't help will prescribe something else. Seems to take so long finding the right mixture of treatment with how long in between appointments, I know you know the frustration of the runaround while suffering. I think he does have augmentation though from ropinirole, he has the arm twitching 24/7 and at night it's arms and legs. It has gone to his face at times also. I get anxiety watching the suffering. I feel horrible for everyone that has to go through this, I am not sure the dr knows what augmentation is but this was only the second visit with this dr so I am giving it time to decide my opinion on him. I wish I would have known when I was young to go to med school and become a rls specialist lol

[Hidden in reply to Mustanggirlgirl]

Essential tremors arise for different reasons than RLS, but again I see the doctors logic.

If your husband is suffering augmentation then I agree that Jools is giving sound advice.

[Shumbah in reply to Mustanggirlgirl]

An opioid may possible help through the augmentation stage

Just a thought

[Joolsg]

ncbi.nlm.nih.gov/pmc/articl...

Primidone is also known as phenobarbital & is mentioned in this article about treatments for tremor and RLS.

Whilst it may help- your husband is still clearly suffering augmentation from the Ropinirole and the only solution to that is to get off it.

I’m not surprised the neurologist didn’t mention this - most neurologists in the UK have no in depth knowledge of Augmentation.

I would definitely reduce the Ropinirole very slowly and hopefully once off it, the primidone will help.

[Mustanggirlgirl in reply to Joolsg]

He wanted him to take with ropinirole, are you saying the primidone will do nothing if he is augmenting from ropinirole? I was so hoping he would get some relief I also saw that it said primidone is a barbiturate which if I am not mistaken maybe even worse to get off of. I really wish it was just one solution for all instead of all the experimenting. Thank you all so much for all the great advice now to get my husband to listen lol

[Joolsg in reply to Mustanggirlgirl]

I honestly don’t think it will do anything while your husband is augmenting on Ropinirole.

Can I ask where you are? It may be beneficial to see a neurologist who knows about RLS.

I know of 2 neurologists in London.

I have MS as well as RLS and my MS neurologists are clearly extremely clever, knowledgeable doctors BUT they know sweet FA about RLS. My female MS neurologist has told me she knows very little about it but the older male neurologist insisted I try Amitriptyline- absolute poison for RLS.

So I am not exaggerating when I say most UK neurologists don’t know how to treat RLS and augmentation.

Many of us have had to get off Ropinirole with the help of the people on this site who genuinely know far more than the majority of neurologists. It’s sad but true and makes me despair at the education in medical schools on RLS.

The only way to stop the suffering is to slowly get off Ropinirole.

There is a top expert in the USA- Dr Buchfuhrer and he responds to emails from the UK quickly.

If you set out your husband’s history- his meds in full and the time he’s been on them and his symptoms- Dr. Buchfuhrer will respond. He doesn’t charge and his website is an excellent resource. You’ll see the most common problem for people with RLS is Ropinirole.

He will also comment on the med your husband has just been put on.

You can contact him at

[e-mail]

He is an absolute diamond. He insists on being addressed as Doctor Buchfuhrer and won’t reply if spelling and grammar is incorrect ( I don’t know why he’s a stickler for this) but it’s a small price to pay for expert advice from a world expert.

Take care

Jools

[Mustanggirlgirl in reply to Joolsg]

I am in the US but so far I do more research than the doctors lol. After getting him off the ropinirole I am going to see if dr will prescribe gabapentin since I think I have seen several like that one. I will take all your advice and thank you so much again

[Joolsg in reply to Mustanggirlgirl]

Gabapentin is good and Gabapentin enacarbil (Horizant) is even better. It’s only available over there in the USA and Dr Buchfuhrer says it is superior to plain Gabapentin. However- many people find plain Gabapentin works very well indeed.

The RLS foundation in the USA has a list of RLS experts in each state so it’s worth the $35 annual membership. They also have regular webcasts with top RLS doctors.

Dr Buchfuhrer is in California (Redwood).

I really hope you can help your husband get off the Ropinirole. It’s tough - worse than getting off serious drugs like heroin/ crystal meth for most people. A very lucky few manage to get off it without too much suffering but assume it will be hell.

That’s why timing is essential- 10 days without sleep after the last dose of Ropinirole. The RLS increases 1000% in severity and keeping still is difficult. Your husband will need to take holiday ( vacation) to get through it safely.

I needed opioids during the withdrawal ( tramadol every 4 hours for some nights) and I used illegal cannabis to get an hour’s sleep.

Let us know how it goes because so many have been through it and can give advice on what helped them through it.

Thinking of you both.

Jools

[Shumbah in reply to Mustanggirlgirl]

You hit gold girl living in the USA with some amazing doctors for RSL

DR Buchfuhrer IN Califonia or glen brooks MD In NYC prescribed my buprenorphine after I had been unsure on a plethora of drugs my last to were Gabapentin then was on OxyContin also I did the marijuana plus stillnox what a nightmare

Dr brooks fixed me over night

Straight onto buprenorphine which is an opioid that hangs onto to far less receptors in the brain than other opioids .Keeps the brain crystal clear

Can’t over dose on it or take codiene as it blocks those drugs so nice and safe .much less side effects only some constipation easily sorted .

Professor winkelman is in Boston if you are near there . So you have some great doctors to pick from . But if you want to see winkelman you need to plan 6 months plus ahead . Glen brooks is easy to get into and a lovely old gentleman who really cares

All the best 🙂

[Hidden]

Oh this is interesting - its phenobarbital - I've wondered about using this drug class but would have suspected I'd be refused if asked for it.

Please, if you do try it, will you post up your results with it? I'd be very interested in hearing how it goes. I just hope its not the Dr treating the tremor in his arm as an essential tremor!!!

+ on Joolsg's post.

[CookiePooki]

This malady is so disruptive. I take 50 mg every night and it has sustained me so far.

[auntiesioux]

Hi there, I actually think the Primidone may be a good choice. I have often wondered why an anti-seizure drug is not being used off label for RLS. I prefer to refer to "our condition" as 'leg seizures.' I do, however, question using Primidone and Requip together. Requip alone has so many side effects . The two together exacerbate all the side effects. If you can continuing to post on your husband's response, this could be very interesting for many of us.

How old is your husband. Does he have any other serious medical conditions. How long has he had RLS?

[Mustanggirlgirl]

Well he took the 2 50mg primidone with the I 1mg ropinirole and it was like he was drunk and not the fun drunk. And when he woke up his head was hurting, he had vertigo and couldn't walk without falling or stumbling. Dr told him to stop taking it and to call in couple days to see how he is feeling. He is a truck driver so he can't be impaired the next day like that. He said he feels horrible after taking it so for him it's not a good fit maybe for someone else that has the time to get used to it. I don't think it's worth the disorientation you feel the next day. I wouldn't recommend it. He is 45 and I am not sure how long he has actually had rls. 14 years ago when we first got together he would only get the spasms in his arms once in a while and he would lift weights and be ok. The last 3 years is where it has been constant and ropinirole has been the only drug he has been on until trying this. And he has augmentation I believe but until he can find a drug that will work for him it's hard to get him off it. Shumbah mentioned buprenorphine in above comment that sounds like a miracle drug that I am wanting him to try to get next. Sorry I couldn't give better news on the primidone I was really hoping

[Hidden]

I'm sorry I have no knowledge of primodol but I do know that ropineral can cause "rebound" or augmentation. What is going on with the ropineral with your husband?