Just come off mirapex

[Tscrutton]

Hi

I am new here and don,t normally write a blog

First off I am very impressed with the help and support I have seen on your site

It's like a great family

I have just spent 8 weeks coming off mirapex ,I was on 3 0.125mg a day for around 10 years and this is the 3rd time of trying to come off (what an experience)

I have been off the tablets for 10 days and I have asked the Dr for a prescription of pregabalin as I still get rls most of the night up to around 3 am

Is the rls I get due to the mirapex withdrawal or is it just my rls in general also the gabapentin at 25 mg doesn't seam to be effective , I have upped the dose to 25mg in the morning 50mg at lunch time and 75mg in the evening

This still does not seam to have helped

I am. Exhausted to to walking the floor all night and have started having blackouts

Also I went to fill a cup of milk and poured the milk over the hob then realised what I had done

The next day I poured the milk into the grill pan and put the milk away into the cupboard and not the fridge

I am very close to giving up and going back on the mirapex just for relief

I would be very great full for some advise also any idea s on what medication I can go on as the Drs have no idea

[Joolsg]

Do NOT go back on Mirapex. You will just prolong the agony.

You’ve done so well to get off it.

Withdrawal symptoms can last weeks/ months after the last dose of Mirapex.

Finding the right combination of meds to control it is trial and error.

You mention trying to get pregabalin and then later mention Gabapentin.

Which drug are you on now?

Pregabalin for RLS takes at least 3 weeks after last dose of Mirapex to be fully effective & can be taken up to 300mg.

Most people on here who take it for RLS seem to be on 300mg taken at night.

If you are only on 75 mg, increase slowly by 25mg every 3 days up to the 300mg.

Hopefully after several weeks the withdrawal symptoms should settle down and the pregabalin should start to be effective and control your symptoms.

Stay strong and don’t be tempted to take Mirapex.

[Joolsg in reply to Joolsg]

I would only take pregabalin at night as the sedating effect will make you dizzy and drowsy if taken during the day. Take a strong painkiller to deal with the Mirapex withdrawal- I took tramadol and cannabis- both helped during my withdrawal from Ropinirole in 2016.

[Tscrutton in reply to Joolsg]

Which cannabis did you take was it cbd oil as I have tried the red one from cbd brothers just 2 drops at night but it didn,t help

[Parminter in reply to Tscrutton]

CBD will help anxiety, nothing else. THC in the form of a joint may help, but there is no guarantee - and you'll probably be doing something illegal.

Look up all the side-effects of gabapentin so that you are well informed.

As others have said, gabapentin needs some time to work fully, so in the meanwhile ask your doctor if you may have a low-dose opioid to help you though - full withdrawal from a dopamine agonist can take several weeks, and the gabapentin is doing nothing at all to help with that. An opioid will.

[Zbirth1 in reply to Parminter]

Thanks for your input. I used to believe the same about CBD/THC but the staff at the legal (!) dispensary have proven/shown me differently. The CBD works on so many more issues than anxiety. Pain & sleep are2 of the biggies it can help. Before I started withdrawal I made up some CBD//THC oil capsules. I wish I had these years ago!! Even during withdrawal I was able to sleep 6-8 hours!!! It’s been years since I’ve had more than 1-3 hours. Everyone is different but for me these have been a lifesaver this past month. 😴😴😴

[Tscrutton in reply to Joolsg]

Thank you so much for the support it means a lot

I am on pregabalin not gabapentin and I will try to carry on

I have some tramodol I can take

I got to the point of not being physically able to pace the floor any more through exhaustion.and the rls was still bad

Just too be clear is it just 1 300 mm of pregabalin at night and not 300mm built up through the day

[Joolsg in reply to Tscrutton]

I personally take 100-150 mg of pregabalin but if you are taking the higher dose it would be 300mg at night only snd not in the day. I would get it in 50mg pills and trial 100mg an hour before bed and 100mg immediately before sleep and then try 100mg if you wake at say 2am. I often change time and dose to see if it helps - a bit of trial and error.

The cannabis I took during withdrawal from Ropinirole was illegal street cannabis supplied by my adult children- needs must...

Tramadol will help during withdrawal. Dr Buchfuhrer advised me to take 50mg every 4 hours during the worst week- and once through withdrawal you can stop taking it.

Hope that helps.

[Pam34]

I second everything Jools has said. Please don’t be tempted to go back on. You’ve done so well and things will get better.

I take Pregabalin at night and I’ve got my life back. If it doesn’t work for you then there are other options but just make sure you are not tricked into taking another DA!

Good luck, Pam

[RosieRow in reply to Pam34]

Having just gone (still going through the end process) of withdrawal, I would echo all that has been said.

I was really hopeful when I started on Pregabalin. However, my experience is that, when I got to 150mg at night I started getting extreme bouts of tiredness and RLS/tension, particularly in my arms and upper body, during the afternoon. I didn't have the extreme of difficulty you had, but wasn't able to cope with anything, sitting, lying, walking. Hot baths do help and ease it off. Just for info, I am also on 5mg Oxycodone at night (short release) and 60mg codeine in 2x30mg doses.

Dr Buchfuhrer agreed that it was, in all likelihood, the Pregabalin that was causing the extreme tiredness and suggested coming off it and only using Oxycodone in whatever way worked (probably 5mg two hours before bedtime and another as top up during the night. I reduced to 125mg and immediately the symptoms lessened. I am now down to 75mg but finding an increase in RLS, particularly in my arms. I am sticking at this dose for the time being whilst I see if carefully targeted herbal remedies from a medical herbalist have any effect.

With regard to CBD oil, I do seem to find it does help. The version I use is 5% - from a legal high street pharmacy. It is slightly ambiguous on its dosing. But, after a talk with the herbalist, I have gradually increased from 1 drop to 10 drops with the maximum being 14 drops, subligually. Last night, after a hot bath, I had a really good night's sleep.

Hope all the information you get on here helps you to make up your mind as to what is right for you.

RosieRow

[rls_optimist in reply to RosieRow]

Hi, Rosie, glad to hear you've found a combination that seems to work for you. Regarding the CBD oil: when you say 5%, do you mean it's 5% THC, and the rest is CBD?

[Wonko_TheSane in reply to rls_optimist]

I obviously don't know the exact product Rosie has, but all cbd oils I've seen state just the cbd content as a percentage of what's in the bottle. The rest is oil. There's usually no THC in them because that's illegal in many places.

[RosieRow in reply to rls_optimist]

Definitely no THC! Just 5% CBD. Celtic Wind product sold at Lloyds. Not cheap but haven't found one cheaper.

[jrtemp in reply to rls_optimist]

I have been taking cbd oil for about 2years and it helps my rls and I know some might think my rls wasn’t bad but let me tell you it was as bad as it could ever be. I was on mirapex for several years it helped but side affects were so bad I became a gambler knew had to do something. It takes a while to get into your system it definitely works for me maybe not for everyone.

Sometimes I take a dropper full was fine with that.

[RosieRow]

Sorry - have just replied to Pam34 rather than to youo, Tscrutton. I expect you'll find the post OK.

RosieRow

[Pam34 in reply to RosieRow]

Morning RosieRow

Nice to hear from you. Like you say, everything is trial and error until we find something that suits us. It would be nice to think ‘that’s it!’ but it’s best not to look too far ahead, just accept it’s working now and be grateful 😊

Just off to Greenwich to stay with my daughter. Two granddaughters and a brand new grandson - not met him yet! I expect sleep will be pretty scarce down there anyway!

Take care

Pam

[RosieRow in reply to Pam34]

That brought a big smile to my face - have a wonderful time with them all! Every good night's sleep is a bonus but if it's a new grandson you can hear, you can at least lie rejoicing in the gift of him!