What should I ask for when I see the GP about pramipexole withdrawal?

[taniabacon]

After a very fraught day, the pharmacist at my mental health centre has arranged a phone call with my GP tomorrow morning and I am to see her in the afternoon, with regard to coming off pramipexole, due to augmentation and insomnia. However, the pharmacist is intending to suggest starting me on gabapentin straight away while I reduce the pramipexole. This seems to go against the advice I have received on here today and yesterday. I believed it was necessary to gradually decrease the dose, with the help of something like an opioide or tramadol, and only then start something else, (I think gabapentin/pregabalin and something called Lyrica were suggested). I don't want to go through absolute hell coming off, and I'm frightened I will not be given appropriate medication to support my withdrawal. Can anybody suggest something scholarly I could print out and take with me tomorrow, to show my GP what RLS experts recommend? I am so grateful to everyone for their patience with me over the last couple of days.

[Hidden]

Hi taniabacon, I suggested the Lyrica and still think it is the best choice as it will help your mental health too. Gabapentin is a similar drug and can also be used for MH. If you re-read my post I advised using that instead of an opiate. I would imagine your Dr will go to Gabapentin first and only if that fails go the opiate route as per NICE guidelines.

From what you are saying the Dr is adding in the Gabapentin while reducing the Prami which is great, many don't know that.

Also nobody advised that it MUST be an opiate they were saying get something like Tramadol or whatever to help.

Hope that clears things up for you.

[taniabacon in reply to Hidden]

That makes it so much clearer: I didn't understand that it was possible to start taking Gabapentin before coming off the pramipexole. If it is ok, I will try to be enthusiastic when I see her this afternoon. Your patience and support is much appreciated. I know I am running around like a headless chicken, repeating things over and over, but I feel very confused about what is the best route and frightened that my not-very-knowledgeable although kindly and concerned GP will not 'get' what a big deal coming off pramipexole is. Having said that, the wonderful news from my point of view is that last night, for the first time in my life, I tried CBD oil and for the first time since this sorry saga began, I was totally symptom free for 6 hours, and had a sound and restful sleep for 4 hours solid. This gives me so much hope that I won't have to feel like this for the next 25 years. Thanks again x

[Hidden in reply to taniabacon]

It can be overwhelming and there is a lot of learning.

We are a patient bunch - even the female members We will take as much time as is necessary to point you in the right direction. The folk here will keep you right but only if you follow the advice!!!!

I would urge you to explain that there is a real chance of severe harm if not withdrawn slowly, and a short psychotic episode wouldn't be the worst of them.

GO SLOW on the withdrawal as I laid out in the other post 4 followed by 3 then 4, 3 and so on. Advise the Dr, (gently - many do't like a patient telling them how to do their job) , about augmentation and the weaning regime outlined make sure you let him know how you are mentally too.

Check out nick-the-turks thread on coming off the dopamine good advice on it if I recall correctly.

Don't waste precious energy worrying about suffering during the detox that wont help - distract, distract and distract you are the master of your thoughts keep them in check.

I know a bit about withdrawal from drug and have helped people with opiate and alcohol addiction and I can safely say a well planned detox eases all suffering.

Look for symptomatic relief - if you aren't sleeping a SHORT course of sleeping pills, if there is a lot of pain maybe think about a paracetamol/Ibruprofen mix.

The steps I outlined in my other post to you will make it a lot easier, I promise, (and I only promise when I am certain).

If the mood drops or goes too high seek help with your care coordinator or come on here and PM me or start a thread.

Don't forget too that a positive attitude helps, (although that can be difficult in the middle of the maelstrom.

Take care and as always my PM box is always open to you.

[marsha2306]

I disagree that you should go on gabapentin while withdrawing from the dopamine. My GP told me to do that and the withdrawal was a horror story. When I finally saw an RLS specialist he told me that shouldn't have been done that way & that the gabapentin wasn't expected to help during withdrawal. I never took pain meds during this time and no one had told me it was an option. In my experience you should wean off the pramipexole first with pain meds on board too.

[Madlegs1 in reply to marsha2306]

Gabapentin won't necessarily help with symptoms- but if one goes down VERY slowly ( as already advised here) then the Gaba is in place ready to take over for rls relief. That is a protocol advised by Dr B.

As usual , rls is such an individual affliction , that it is difficult for a "one size fits all approach."

[marsha2306 in reply to Madlegs1]

You're right that the gabapentin won't help with the symptoms while going through the withdrawal process. I was just reporting my own experience and the response about the issue that I had gotten from Dr. Early at John Hopkins.

[taniabacon]

Thanks so much for the advice. I am waiting to see the doctor right now. I shall relate your experience, if I may, and also other opinions on what might be best. I shall post later to let all you kind people know the outcome. X

[John_naylor]

I went in the opposite direction, GABA to Pram and on my gp's instruction "just stop one and start the other!" I was unable to work or do anything and was totally confused for 2 weeks of hell. I "enlightened" my GP once I understood what had happened. I'm with Raffs, very very gradually...

[taniabacon in reply to John_naylor]

I'm beginning to think all doctors should be forced by law to experience at first hand what the treatment they hand out to us really feels like. Perhaps then they would be less gung-ho and more ready to acknowledge the difficulties.