Carbamazepine

[Annieapple]

Can Carbamazepine be used for Restless Leg Syndrome?

[SueJohnson]

It possibly helps RLS per RLS foundation. It can cause weight gain especially taken with pregabalin. Chronic administration of gabapentin and carbamazepine may cause increase in neurodegenerative changes in the adult brain.

[Annieapple in reply to SueJohnson]

Thanks Sue! I am presently being treated with it for Trigeminal Neuralgia & noticed how much better my RLS has been. Wondering if I can discreetly start reducing my Neupro Patch. My GP has refused point to take me off it in the past before I started Carbamazepine. Interestingly I was prescribed Pregablin by a Neurologist for the TGN & it set my legs off SO badly I had to come off it slowly. That was to be my drug of choice coming off Neupro!

[SueJohnson in reply to Annieapple]

I deleted the statement that Carbamazepine can't be used with temgesic as in further researching it I found studies where they were used together to help with opioid withdrawal.

Yes you can start reducing your neupro. You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce.

I may have told you this before. Reduce by 25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Since pregabalin and gabapentin are out for you. If carbamazepine doesn't control your symptoms after you have been off it and the withdrawal symptoms have settled You can take a low dose opioid like buprenorphine or methadone.

Or since you have high blood pressure you could try dipyridamole which is a blood thinner. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... Discuss this with your doctor.

[Annieapple in reply to SueJohnson]

Let’s ray I can get this sanctioned by the Neurologist next week! 🙏

[Annieapple in reply to SueJohnson]

Thanks yet again Sue! Why oh why are the NHS doctors so behind in their knowledge about RLS! Xx

[SueJohnson in reply to Annieapple]

Because they aren't taught about it in medical school and don't keep up to date on it and often refuse to accept things like the Mayo Algorithm.

[Hidden in reply to SueJohnson]

Sue, are you saying "administration of gabapentin and carbamazepine..." as in when taken simultaneously, or are you saying both drugs taken independently can cause neurodegenerative changes?

[SueJohnson in reply to Hidden]

I deleted the statement that Carbamazepine can't be used with temgesic as in further researching it I found studies where they were used together to help with opioid withdrawal.

[Hidden in reply to SueJohnson]

Thanks Sue. I was more interested in your comment about carbamazepine and gabapentin, and neurodegeneration.

[SueJohnson in reply to Hidden]

Only when both are taken together thank goodness.

[Annieapple]

see my answer to Sue Johnson. Thanks

[ChrisColumbus in reply to Annieapple]

Presume this was to me? I Deleted my query to you when I saw your reply to Sue...

Anyway, there are reports of carbamazepine helping with RLS, but insufficient as far as I can see to warrant it being adopted as a treatment for RLS as such. I'm sure that Sue will give more advice on coming off the rotigotine (Neupro)

[Annieapple in reply to ChrisColumbus]

Thank you ChrisColumbus. She has given me excellent advice before. Unfortunately neither my GP or Neurologist are in agreement about me coming off Neupro. Since I started on the Carbamazepine it’s wonderfully controlled and I am sleeping well.

[Joolsg in reply to Annieapple]

That is quite shocking. Are they both aware the Neupro patch will cause augmentation and is even more difficult to get off than short life Ropinirole?I think you should take advantage of the carbamazepine and slowly reduce the Neupro as Sue advises.

One day Annieapple, they will start to learn the basics of RLS and realise the horrible suffering and damage they have caused.

[Delfine]

I was taking Ropinerole for severe RLS and had been for around 3 years. Augmentation and reading this forum daily made me realise I had to get off the ropinerole so I saw a neurologist who prescribed me eslicarbazepine acetate. Unfortunately she didn’t take any of my past medical history, only told me I needed to take 400mg daily. The pharmacist told me to keep taking the ropinerole at the same time so by after much research I’ve been going it alone and increasing the eslicarbazepine acetate (now on 800mg) and decreasing the ropinerole (now down to 0.5mg daily). Information about eslicarbazepine acetate for RLS was hard to come by online so I’m not even sure I’ve done the right thing - and not sure what to do when I’m finally off the ropinerole for good, do I stay on 800mg of eslicarbazepine acetate for life or start to reduce? Anyway, Annieapple, I just wanted to share that carbazepine can be used for RLS, it’s been successful for me so far, and wish you luck with your journey!

[Annieapple in reply to Delfine]

Thank you!!! That’s very helpful to hear!!! I hope you get some help with your decision.