TIRED

[PollyH59]

Hello everyone, just joined this site today, and I am wondering if anyone else suffers from tiredness from taking pramixemole for their RLS? I yawn all day long and I can't stay awake in the evening while watching television if it's past 8 pm. And, my RSL seems to be getting worse during the day now. Some afternoons I want to pull my legs off

[involuntarydancer]

Oh dear, have you googled augmentation? What dose of pramipexole are you on? How long have you been on it? Have you increased your dose?

I was on it for about 10 years and towards the end, when my dose had got very high, I found exactly what you describe - very tired in the evenings and at times I could fall asleep out of the blue. I had to come off it which is no picnic.

[PollyH59 in reply to involuntarydancer]

I have not googled augmentation, but I will now. I take two pills at 7 pm and one pill at 10 pm, not sure of the dosage but sometimes when I'm driving home at night from work I have to smack my face to keep awake. I fall asleep at the drop of a pin - it's terrible!

[involuntarydancer in reply to PollyH59]

Yes be very careful driving. There are plenty of accounts of people falling fast asleep completely unexpectedly.

It is hard to know what your dose is without knowing how much each pill is but you may be taking above the recommended daily limit for rls.

[PollyH59 in reply to involuntarydancer]

I just googled augmentation and RLS and what they described is me exactly! Geez....what I'm taking is supposed to help me but it's making it worse! I need to see my specialist right away. The article says that the RLS will become very severe for 4 to 5 days! Oh what fun!

[involuntarydancer]

Unless your specialist is an expert in rls you may find that they don't know an awful lot about it. Many people find that their neurologist knows even less than they do and often simply recommends taking a higher dose of pramipexole when in fact that is the worst thing to do. It is well worth educating yourself before you go to see them. Read widely through this forum and also see various websites - rlsuk.org, rlshelp.org, Johns Hopkins university website rls section.

[PollyH59 in reply to involuntarydancer]

Thank you very much for the information. I will research this topic before going to see him in two weeks. I just don't want to feel like this anymore. I didn't feel like this before taking pramipexole. Is there any drugs that help with RLS that won't cause augmentation that you are aware of?

[involuntarydancer in reply to PollyH59]

Unfortunately it is a tricky condition to treat. The three main categories of drugs are: dopamine agonists of which pramipexole is one - these are often very effective at treating the symptoms but all are likely eventually to lead to augmentation. The second category is anti-convulsants, usually gabapentin or pregabalin (aka Lyrica). As far as I can judge, it is relatively rare for this category to successfully combat rls as a mono therapy but they can help as part of a drug cocktail (cocktails sound scary and undesireable but they are often optimal because they allow a lower dose of each individual drug and this avoids unpleasant side effects and/or dependency). The third category is opiates (tramadol, codeine, oxycodone, methadone) which is usually fairly successful - though not for everyone - but brings its own problems.

In addition to these prescription drugs there are OTC remedies which some swear by. Magnesium, vit D3, vit B, l-theanine, l-tyrosine, taurine, apple cider vinegar, bathing in Epsom salts etc etc. many also swear by following a particular diet eg fodmap diet, low oxalyc acid diet etc.

Lifestyle issues can also be important. Stretching exercises, moderate exercises, avoiding trigger foods and meds - you will see these listed on various websites.

Perhaps most important to the majority of rls sufferers is the issue of iron. US experts consider sufferers should bring their serum ferritin levels up to over 100 (you can get it measured by a simple blood test - you need to make sure they give you the actual figure - not just that you are 'normal' - 'normal' for rls is different). Raising my levels from 29 to over 80 by taking oral iron has made a big difference to my symptoms.

Finally there is the dark side - Kratom (illegal in UK and Irl since last year - still legal in most US states) and cannabis - ditto as for Kratom. These substances both provide relief for some sufferers.

You will discover all this and more as you start to look more carefully at the available information.

[PollyH59 in reply to involuntarydancer]

Thank you so much for all the information, it's very much appreciated. I couldn't understand why my symptoms were getting worse, but everything I am reading is making sense to me now. I wish I had of found this site a few months ago. I thought I was losing my mind.

[involuntarydancer in reply to PollyH59]

I was in the same boat as you about a year ago. Could kick myself for not making an effort to find out more when so much info (not to mention support and affirmation from fellow sufferers) is so readily available. I placed myself entirely in the hands of my sleep consultant who through a mix of willfulness and disinterest left me to suffer torture for months.

[PollyH59 in reply to involuntarydancer]

And the only people who really know how were suffering is the people who've gone through this. It's horrible when RLS acts up all day long! I had a hard time driving home last night between the leg jerks/movements and trying not to fall asleep!

[Madlegs1 in reply to involuntarydancer]

That comprehensive answer from involuntary dancer should be the standard response to most queries on this site.

Is there any chance that it could be copied to a permanent spot somewhere for general reference?

I am in awe , involuntary dancer! 🙌

[involuntarydancer in reply to Madlegs1]

Wow; thanks for that madlegs. I am really chuffed.

[macewan13 in reply to involuntarydancer]

I totally agree. That sums up neatly and comprehensively what I and many others have discovered in the course of a long, difficult journey.

[involuntarydancer]

It would make you laugh if it wasn't so awful - meds making you fall asleep in dangerous situations - legs jerking you awake ...

Dr Mark Buchfuhrer is a world renowned rls expert who posts replies to sufferers who email their questions to him on rlshelp.org (see the 'patients' letters pages - there is loads of useful info there). He expresses the view that there is a treatment regime out there to enable almost all rls sufferers to live a fairly normal life - and he treats some of the most refractory cases. So keep hopeful. You will need a lot of resilience if it turns out you have to come off pramipexole. It is a difficult experience.

[PollyH59 in reply to involuntarydancer]

How is coming off pramipexole a difficult experience? What should I expect to happen?

[marsha2306 in reply to PollyH59]

It's awful, horrible, terrible etc. I was only on a small dose for 2 weeks and was up all night for 4-5 days pacing the floors. As others have suggested, ask your doc for something (research tis topic in other posts) to get

[Pippins2]

Hi Polly welcome. Involuntarydancer has explained about augmentation so I won't go over that again

When we stop a dopamine agonists med it causes a significant increase in severity of RLS symptoms. Unfortunately for most their RLS will be the worst it's ever been as your brain is screaming out for the Dopamine.

You will need to wean down very slowly (did you find out strength of your pills )? Normally a strong painkiller is needed, they work on the urge to move sensations as well as on pain.

Most people need to take time off work.

Getting off the last pill is generally the hardest part but with back up meds it can be done

My GP and Neurologist had no idea about augmentation .I find out about it from this site.

Good luck

Pipps x

[PollyH59 in reply to Pippins2]

Thank you so much for the info Pipps. I would be lying if I said this info isn't scaring the heck out of me. What pain is involved in this whole ordeal that one needs to take pain medication?

[Hidden in reply to PollyH59]

Hi Polly, the pain med works on the movement for RLS, so its not that you are taking it for pain. When weaning off a dopamine med it needs a strong pain med , most take Tramadol to help with the withdrawals from the dopamine. Its still not easy even with the pain med, but it will help. Lots on here have gone through the same and are now dopamine med free. Some people find it easier than others, if you are on a lower dose it is some what easier, on a higher dose can be more difficult. As for you sitting all day making RLS worse, for me, i find that sitting or moving, doesnt make mine worse.

[PollyH59 in reply to Hidden]

Thank you Elisse.

[Hidden in reply to PollyH59]

When you start the process, someone is always on here to give you support, when the going gets tough we are here. You will not be the first we have helped and supported through this on here.

[PollyH59 in reply to Hidden]

That's very good to know. Because I know I have to come off these pills because of my tiredness and the RLS getting worse. I don't sleep well and it's really starting to get to me. I didn't realize what I was getting myself into. The doctor did not tell me all these bad things only the good things. If I knew beforehand all this info, I would not be taking this pill right now.

[Pippins2 in reply to PollyH59]

It's not pain it is severe RLS

[PollyH59]

Does everyone experience all this difficulty in coming off this pill?

[PollyH59]

Does sitting all day (what I do for a living) make RLS worse?

[Pippins2]

Polly the pain med helps with the severe RLS. Many use Tramadol and other strong painkillers as their regular RLS treatment.

A lucky few getoff the Dopamine meds with very little problem especially if on a low doseor not been on them for long.

However the vast majority find coming off causes very severe RLS

[Madlegs1]

Hi Polly- you have been given very good advice here.

Just two points I will add.

Sitting around doing nothing is what Rls is all about- the fact that you can not do that without the urge to move. So , it comes with the territory!

When you are tapering down off the Prami , do so slowly- .088 every 3 or four days , or even leave it a week. From this you will experience some withdrawal symptoms which differ with people. That's where the Tramadol or Oxycontin comes in- to help mask the symptoms.

Many people have gone through this process successfully without too much hardship- but it must be done.

All the very best.

[PollyH59 in reply to Madlegs1]

Thanks for the advice Madlegs, but isn't OxyContin addictive?

[Madlegs1 in reply to PollyH59]

No. Not unless you have addiction issues or personality.

One can become dependent on it- which is not the same thing at all, at all! Most people are dependent on some aspect of their lives- cars , phones , friends crutches etc.

There is a huge amount of misunderstanding over addiction, dependency and tolerence.

Opiates have been the ultimate "go to " medication for restless legs for over 300 years- without any major issues- apart from idiotic societal reaction.

Oxycontin has transformed many peoples' lives on this site.

Good luck.

[involuntarydancer]

Madlegs has given a very accurate and useful answer regarding OxyContin. It was the ONLY thing that provided me with any relief after I came off pramipexole last year.

However, it is fair to say that one can become dependent on OxyContin quite rapidly so that eliminating it again (should one wish to do so) is an unpleasant experience and does cause discomfort (although nothing like as bad as coming off a dopamine agonist) which can last for a few weeks, depending on the dose. It is also a shock to find that this is the level of medication required to control rls symptoms.

If taking OxyContin it is important to stick to the lowest dose possible - it is worth considering taking it in conjunction with another med eg pregabalin to enable a lower dose to be maintained.

That said, I have come off it twice in the past 6 months - the first time after being on 30mg per day for over 3 months - with no lasting damage.

[PollyH59 in reply to involuntarydancer]

I checked the dosage of the Pramipexole I am taking and it is .25 three times a day. I take two at 7 pm and one at 10 pm. I believe this is a low dose, so will I still experience the same dreadful side effects as someone who is on a higher dose?

[involuntarydancer]

Polly, it is hard to say how you will respond - we are all different and some people manage to come off the dopamine drugs relatively easily. As I understand it, you are taking .75 pramipexole daily. This is about half the level I was on when I stopped - hopefully you will only get half the symptoms I got! It is a good idea to come down in slowly off it.

[PollyH59 in reply to involuntarydancer]

Is this something I can do myself or do I have to talk to my doctor first.

[gyppylegs]

Hi Polly. I have just come across this forum from the RKS charity website and feel very relieved to find I am not alone with my sufferings. I have been on a low dose of pramixemole for 2 years and wondered if it was these tablets that were making me tired. Like you I struggle to stay awake after 8pm to my partner's annoyance. Also I am finding the tablets are becoming ineffective and can end up taking 2 to 3 tablets each evening. The other day I forgot to renew my prescription and went without them one night.. My legs were horrendous and sat in the living room most of the night to avoid disturbing my partner and finding myself in tears through frustration of it all.

[PollyH59 in reply to gyppylegs]

Hi Gyppylegs. I thought I was alone in my feelings as well. This forum was very enlightening and has answered so many of my questions. After 8 pm my head just drops and I don't even know it until I wake up a minutes later, and I do this repeatedly until I just give up and go to bed. I feel like I don't have a life after 8 pm because I just struggle trying to stay awake. Sometimes even driving home from work I get extremely tired. I have to keep talking to myself and rolling the window down so I won't fall asleep. I'm terrified of the effects of coming off this drug but I know they aren't helping me anymore. I forgot to take my pill one night and the next day at work was horrific for me. I just couldn't believe that this could happen from missing just one pill.

[gyppylegs in reply to PollyH59]

Hi Polly. I am sorry to hear about your suffering too. I dont drive but it sounds very worrying that you are nearly falling asleep at the wheel. There has got to be a better option out there than these tablets. My plan is to arm myself with as much info as possible then go and see my GP.

[TSLBK]

Hello, new to this site as well today and I am suffering the same as Polly. My Dr put me on pramipexole about 6 months ago and I have gone from 1 to 2 to 3 tablets in the evening now, I fall asleep most evenings and I have started to get RLS late afternoon onwards now whereas before the pramipexole I only suffered in the evenings Dosage quite small I believe looking at other messages on here - tablets are 0.08mg

[PollyH59 in reply to TSLBK]

Isn't it weird how something that is supposed to help make you feel better ends up making you feel worse! If I had of known what would happen to me by taking taking pramipexole I never would have started it. My doctor never warned me about any of these side effects of coming off the meds. I wish I had of done more investigating myself but I just wanted some relief. Now I am worse off then ever. Once I get prami out of my system, I am going to try some of the homeopathic options.