Desperate for sleep.

[Nevermind61]

I have taken pramipexole for a few years and life was wonderful then over a year ago the restless legs started again with a vengeance I was only taking one at night after being on the maximum for a while even on one at night it was working for a long time now here I am at 2-30am sitting up going mad with my legs. I have sat with the fan on since just before midnight. My GP is now at a loss as to what to do and advised joining your group. I have tried many things and I am exhausted, one night recently I was leaning on my sideboard trying stretching exercising when I fell asleep standing up and I fell backwards onto the floor knocking another sideboard backwards. I was lucky not to be badly hurt any advice would be helpful as I am now dropping off during the day.

[Hidden]

This is a familiar story and I'm sorry your GP is at a loss of what to do.

There are several long term consequences of taking a dopamine agonist such as Pramipexole. These include loss of effectiveness and augmentation.

You are definitely experiencing the first of these, loss of effectiveness.

It's possible you may be suffering augmentation as well. This is where instead of relieving symptoms, Pramipexole makes them worse.

If you find that the symptoms have spread from your legs to other parts of the body and happen earlier in the day.then you have augmentation.

Look at the pinned posts on this site to find out more about augmentation.

You will also find this link helpful

sleepreviewmag.com/2015/02/...

It seems your doctor does not appear to know about these effects or how to deal with them.

The answer is to switch to an alternative medication.

The typical alternatives are the alpha 2 delta ligands, Gabapentin or Pregabalin. Although these are primarily used for epilepsy they have been found to be effective for nerve pain and RLS.

You will find this link informative, in fact you could refer your GP to it. If your GP is NHS he/she should be familiar with NICE the organisation which publishes this information and should realise he/she should be guided by them

cks.nice.org.uk/restless-le...

Note the mention of alpha 2 delta ligands under the heading. "What drugs should I consider ....."

Hopefully, if your doctor looks up Gabapentin in the British National Formulary (BNF), He/she will see that the starting dose of Gabapentin is 300mg and can be built up in steps of 100 mg every 2 - 3 days. An effective dose for RLS is usually between 900 and 1800 mg.

bnf.nice.org.uk/drug/gabape...

Unlike prescribing it for nerve pain or epilepsy however, for RLS gabapentin can be taken in a single dose of up to 600mg at night. For doses above that it can be split in 2 doses of 1/3 of the daily total earlier evening, then 2/3 3 hours later.

Pregabalin is similar.

bnf.nice.org.uk/drug/pregab...

Starting dose is 150mg.

You can start taking Gabapentin/Pregabalin at the same time as taking Pramipexole, but the side effects can add up. Particularly, they can make you very drowsy at first. Take them just before bed at first.

Because of this and because the Pramipexole is now causing you more problems than help, it's best to stop taking the Pramipexole.

Do NOT do this as soon as you start the Gaba, the new drug takes a few weeks to become effective. Wait a few weeks then you can start to withdraw from the Pramipexole.

Do NOT stop taking the Pramipexole suddenly!!!! This can be very dangerous. You need to reduce it slowly. I reduced it in steps of 44microgram (half the smallest tablet). Depending how you get on, you could reduce it. say every 2 weeks. The slower the better, I did it every 4 weeks.

The last step from 44mcg to nothing is the worst.

As you reduce it, you will get withdrawal effects. These could include a temporary worsening of the RLS symptoms. It could include depression, panic attacks, low blood pressure and suicidal ideas.

The latter is less likely, but it is not easy to withdraw from Pramipexole.

If your doctor says you can just stop the Pramioexole, refer him/her to this link

ncbi.nlm.nih.gov/pubmed/236...

There is, I'm afraid no immediate solution to your problem. I wen through this myself and found as I took Gabapentin and reduced the Pramipexole my RLS improved considerably. I'm now taking only Gabapentin and rarely have any RLS symptoms at all.

One further thing, to help with withdrawal effects sometimes people find it helpful in the short term to take a sleeping tablet and/or an opiate.

These are mentioned in the NICE guidelines I gave the link to above.

You might find a sleeping tablet helpful now ( for a short time only!!!!!). Typical ones used for RLS are a benzodiazepine, Clonazepam or Zopiclone.

I hope this is helpful, it is a lot of information to absorb.

I am not a doctor but the information his has some authority behind it. I hope your doctor is open to this information. You can't expect a GP to know everything, a good doctor admits it when they don't know and is willing to listen to patients and make joint decisions about treatment, not just dictate it.

[Madlegs1 in reply to Hidden]

I'm particularly intrigued as to how the Dr knew of this site. And even more so that he/she has not followed up some of the links to professional pages here.

Intrigued.🤔

[Hidden in reply to Madlegs1]

Sorry, I'm not quite sure what your referring to.

Doctors should be aware of the National Institute for Health and Care Excellence if that's what you're referring to and NICE publish evidence based guidelines on how to manage various conditions.

Therefore if a doctor is not sure how to manage one of these conditions all they have to do is look up the guidelines. In practice however, especially GPs they probably don't have time to do this for every single condition. A lot of their decision making is based on algorithms, a kind of flow chart, and personal experience. The experience will be of the conditions. they most commonly come across.

It takes years to train up someone to become a GP, but I'm not entirely sure at the end of it how much they actually know. Nor how much of what they know is any use in practice. A lot of the preparation of doctors is preparing them for the role and the ethics of it rather than an in depth knowledge. Perhaps they're overrated (and overpaid). There are many nurses now who perform roles that used to be confined to doctors, with much less education.

I know in some countries doctors have nowhere near the same status or prestige as they have in the west.

Despite the good salary, I feel sorry for some doctors, especially GPs. I imagine it's really tedious and the suicide rate is one of the highest.

[Madlegs1 in reply to Hidden]

Sorry- I replied to wrong conversation. Should have been to OP.

[Nevermind61 in reply to Madlegs1]

I presume the doctor knows of the site as she probably has more than me with this condition and maybe one of those gave her the information about the site. I have had a few years of peace from the symptoms so maybe this is just part of the syndrome. All doctors can't know everything about everything so sometimes it takes some time to filter down. I know there was a documentary on some time back but I didn't watch it. When you think about how many patients are seen over a week it is hardly surprising that some things are maybe overlooked. I have to say I have no problem with my doctor she has been very helpful but with the constraints of time sometimes I maybe have not conveyed how desperate it is making me feel. I am finding it particularly bad at the moment as we are using the heating again and that makes things worse. It has worsened since my 2nd knee replacement 2yesrs ago the distal nerve was damaged during surgery leaving me with a lack of sensation in parts of my right foot and lower leg. Sorry to ramble on but I need to put down relevant facts.

[Hidden in reply to Madlegs1]

Hi Madlegs, its possible that a patient has taken in a RLS-UK leaflet which is pinned to the board where many other leaflets are, giving information on health issues. I expect doctors would see the leaflet which tells people to get help and support from RLS-UK.

[beady3]

Nice to read your letter, I went to see the 4 th neurologist 3 weeks ago, my doc doesn’t know what to give me now , he has put me on Pramapixole the last 2 weeks have been great sleep all night , after months of no sleep it’s wonderful, I am now on 208 micrograms in a week I am supposed to increase to 350 micro, it’s all very scary as I don’t want augmentation , I don’t think any of us get relief all the time it’s just difficult to go with what your doc says or do your own thing but then that’s where we go is to the doc ,