Little choice but to try

[Operababe]

Hello again

Unfortunately the pregabalin 150mg seems to be having little effect been back to doctors and his given me Neupro 1mg patch to try, having augmented on ropinirole and Mirapex I'm pretty sure this isn't the answer but the doctor had emailed a local neurologist and this was what he recommended. Have tried it now for 2 days making me feel very sick and light headed not sure wether to persevere or not?

Really feeling so down about all this just can't seem to find a way forward any suggestions would be appreciated.

Thanks

[Hidden]

No suggestions from me at the moment, but just wanted to send a note saying that I’m sorry you’re having a tough time.

[Operabab in reply to Hidden]

Thanks appreciated

[Madlegs1]

You are getting awful advice.

If you've augmented on two DAs, then a third one is hardly going to buck an obvious trend.

You will need to come off the patch and try Gabapentin or Lyrica. But these won't help with the effects of withdrawal- you are merely laying the foundation for future rls control .

Check out "augmentation" for rls on this site or Google.

Good luck.

[Operabab in reply to Madlegs1]

Thanks Madlegs I kind of knew that from reading all the posts but it is amazing how you can get talked into these things when you're low and assume a neurologist knows what his talking about

Have taken patch off only had it on for 2/3 days so shouldn't have too much of a problem. Have had some good advice from raffs as well so will try upping the pregablain to start with.

Thanks again.

[Hidden]

My GP says Pregabalin only begins to be effective at 150mg - might be a better idea to up that rather than go to the Neupro patch, (a lot better than Mirapex but not a nice drug imho).

If you have augmented you need several months away from Dopamine Agonists to allow that to subside.

I know things aren't good now but with a little tinkering things can get easier. I am assuming you've read up on gentle iron and dietary triggers? I find gluten, alcohol and caffeine are all triggers for me.

Cannabis can be a useful adjunct at this stage, (obviously having researched it properly), as can hot showers and baths and yoga stretches.

Check out the thread below for lots of good info particularly the video posted by Mantel.

Good luck.

[Operabab in reply to Hidden]

Thank you for your advice I think your right about the pregablain dose so that's where I'm going to start. I feel better already having removed patch it was making me feel dreadful. It's so good to have this site as a sounding block you just doubt all you've read etc when low and faced with people who you assume have the knowledge to help with meds etc.

Thanks again

[Hidden in reply to Operabab]

I developed a few problems with Neupro - forgetfulness, falling asleep suddenly and increased confusion. I didn't notice them beginning and confused them with another condition I developed. I am so glad I am not taking those sort of drugs - for me they caused more issues than they solved.

Best of luck.

[Parminter]

Operababe

You are probably suffering withdrawal symptoms from pregabalin. A quick search comes up with these symptoms -

Behavioral changes

Headaches

Mood changes

Anxiety

Depression

Confusion

Suicidal behavior or thoughts

Agitation

Nausea

Sweating

Diarrhea

Palpitations or rapid heartbeat

Issues falling or staying asleep

Seizures

Apparently pregabalin is becoming more and more problematic as a drug of addiction. Nobody tells us that, do they?

So keep going, it will lessen over time. Quite quickly.

therecoveryvillage.com/lyri...

[Operabab in reply to Parminter]

Wow no never thought of that Thank you for your advice

[macewan13]

Hello Operababe,

The patch also made me feel sick and I augmented fairly quickly as I had already been on the other DAs.

I am now on 300mg of Pregablin (150 had little effect) and 150mg of Tramadol.

Good luck.

[Operabab in reply to macewan13]

Thank you I've taken the patch off and felt so much better within a few hours have decided to stick with the pregablain and up the dose just have see how it goes

Thank you so much for your reply all the advice and information people share help you find out what is right for you

[LanaCSR in reply to Operabab]

Lyrica 300 mg/day and Kratom works well for me. I wish you good luck! I know how frustrating all of this can be. I HATE this RLS!!! 😢

[Operabab in reply to LanaCSR]

Thank you and your right unless you have this awful condition it's impossible to imagine what effect it can have on your life

Glad you have relief at present with your meds

[Highlighters in reply to LanaCSR]

Hi was wondering do you have nightmares on Lyrica

[LanaCSR in reply to Highlighters]

Sometimes I do, but it's not too disturbing. I don't like some of the side effects (hand twitches, weight gain, swelling, etc.), but the benefit of it calming down my RLS outweighs the side effects, in my opinion. Ya gotta take the bad with the good sometimes, right?

[Joolsg in reply to Operabab]

All drugs for RLS seem to cause side effects- some worse than others snd also different people seem to have different reactions to the same drug.

The one common thread from all posts and medical statistics is that 80% of us will suffer Augmentation on a dopamine agonist.

I agree with Raffs- the patch is not a good option if you’ve already suffered Augmentation.

Pregabalin taken alone for RLS

would work better at a higher dose ( but increase slowly to see what dose helps ). Withdrawal from a DA can last months so it may take a while for new meds to become fully effective.

Pregabalin side effects of dizziness, double vision, increased hunger ( & resulting weight gain) and leg swelling usually settle after 3 months on the drug. I take it at night only - if taken in the day the dizziness etc would be much more pronounced.

[Operabab]

Thanks I guess you could say I'm lucky at least I don't have rls during the day so only have to take meds at night, so will increase gradually as you say and see the what the effects are.

Do you find just the pregablain works for you?

[Joolsg in reply to Operabab]

No I actually started on just OxyContin twice a day but I’m one of the rare people who suffered panic attacks as a side effect so Dr Buchfuhrer ( RLS expert in USA who answers emails within hours) suggested adding a low dose of pregabalin as it is a sedative. It worked really well at stopping panic attacks snd has helped with sleep. I take between 100-150 mg.

Often two drugs at low dose can work better than one at higher doses. The pregabalin side effects all disappeared after 3 months ( apart from double vision for 10 minutes after waking).

[Operabab in reply to Joolsg]

Thanks Joolsg it's good to hear you have something thats working for you I'm storing all the info I can get at present in case I need it in terms future it seems a long road ahead when you know there's no cure. But feeling optimistic about the way forward Thanks

[Pam34 in reply to Operabab]

I just take Pregabalin 150mg at night. Feel a bit unsteady sometimes at night but it’s a price worth paying for a relatively good nights sleep. Been on it 6mths so far.

Pam

[Operabab in reply to Pam34]

Thanks Pam I'm hoping that if I stick with it I won't have to go up too high but as you say a small price to pay for relief and sleep glad it's working for you