Another slèpless night

[Shaft1952]

Well here I am again, cut ropinerole by 500micograms and been up since 1-30 taken 15mgs of codiene with no effect so have just taken another15mgs as gp prescribed 30- 60mgs as required, now been up 3 & half hours but awake before that, need to get of this ropinerole sooner rather than later, just going to have to bite the bullett and stop and suffer consequences for a week or so, hopping the codiene and sleeping tablet can control things. If any big problems sooner appointment with GP.

[keiralee]

Hi Shaft. I am coming off pramipepsole and have been doing so for past 3 months. Have now recently come off completely. Have been up twice tonight. Am now having early breakfast ! As i said before the only thing that's helping is tramadol and I know you can't take that. It's not brilliant but I do get some sleep. I do sympathise but they tell us it does get better so just hang on in there. Best wishes.

[Henshaw241241]

Sorry to hear the bad news that you can't sleep I was like that takeing rapinirole I was climbing the walls no sleep then the doctor put me on pramipexole. 0.088 I take 2 every night with 2 codeine phosphate 30 mg about 1 hour before you go to bed good luck let me know after a few weeks (email address removed for your own security. A safer way is to use the private message service on here.)

Edited by Kaarina (volunteer)

[Joolsg]

You are doing really well so keep going. Once you are off the dopamine, you can discuss other options with your gp. Avoid dopamine as you probably will suffer augmentation again.

That last tablet of dopamine is the hardest but 2/3 weeks after that things will start to improve and you will get more sleep.

Stay strong, there's light at the end of the tunnel,

Jools

[Shaft1952 in reply to Joolsg]

Thanks jools for your support, what do you think I should look at next, I can't take tramadol or gabapentin, look forward to your advise. I was thinking of the patches.

[Joolsg]

I know you had dreadful side effects with gabapentin and a terrible time getting off tramadol in the past so other possibilities would be codeine or targinact. Lyrica is very similar to gabapentin but with less side effects.

You'll need to ask your GP for some advice on options or ask for referral to a neurologist with knowledge of RLS.

I found tramadol didn't work at all for me but gabapentin and codeine together are working quite well. I did have dizziness/ double vision with the gabapentin but that has eased off quite a bit now.

I hope something can help.

Good luck,

Jools

[Shaft1952 in reply to Joolsg]

Thanks joolsg I know a lot about neurological meds because of the job I did before I retired. I Don't like a lot of these drugs due to side effects. GP is going to refer me to a nurologist I think the person we duscussed, but at my local hispital, possibly newcastle, as not allowed to refer me to London centre that specialises in RLS.

[Joolsg]

I'd stick with Newcastle. I've been waiting since beginning of August for appointment at Kings with Prof Ray Chaudhuris team. NHS in London literally falling apart at seams.

Jools

[Shaft1952 in reply to Joolsg]

Jools thanks hope you get seen soon all the best for new year

[Pippins2]

Shaft, if you live near Newcastle Hospital then you are in luck!

Dr.Kirstie Anderson is a RLS expert , get referred to her.

Pipps x

[Shaft1952 in reply to Pippins2]

Yes I live in Cumbria and she was amazing in her talk at AGM, I gave my GP copy of last news letter, and she said could send me there but not to Kings. Thanks for support pipping, happy new year hope this is another to find a better treatment or cure.