Worst night in months

[Heatherlss]

So I voluntary skipped my 0.0625 mg dose of Mirapex ( having taken it for over 6 months now with the occasional 0.125 mg dose). And it was hell. Beyond hell to be clear. Could not stand the RLS which felt like waves of electric shocks. Survived without the dose only till 12:30 pm and then woke up and took the 0.125mg dose. Slept thereafter and woke up with immense sadness and realization that this might just be the schedule for the rest of my life having to take dopamine agonist in order to get any sleep.

[Hidden]

Heatheriss did you augment on the mirapex... ? Did you replace the mirapex with another type of med for RLS, example.. gabapentin, lyrica or any opiate..?

[Heatherlss in reply to Hidden]

Hi Elisse, No I did not. I figured I'm on the lowest dose so I wouldn't have unbelievable troubles that I had. Clearly, I was wrong. I feel stuck and worried for the future.

[Hidden]

Hi Heatherlss, I recall you've posted before and you were scared that you may have to continue for life on some medication.

I have found that when I've missed a dose of Pramipexole, I get a full blown RLS episode within a few hours. So I'd say your experience is not unusual. It possible that this reaction will lessen if you were to stop taking pramipexole altogether for some days or even weeks. I doubt that your RLS will disappear entirely however. You will return to how it was before you started.

I also recall that in your last post you were scared that if you continued taking Pramipexole you would get augmentation and that's presumably why you take half doses and tried missing one altogether.

Overall, your options remain the same as in your previous post.

You can either carry on taking up to 0.125mg as long as that works for you.

Or, you can stop taking Pramipexole and switch to something else, e.g. Gabapentin, which is less likely to cause augmentation. In which case it might be best to start Gabapentin for a few weeks before stopping Pramipexole.

I feel you are struggling with this, it isn't easy to accept that you may have to take some medication for life. Nor is it easy to accept that no medication is going to be perfect. I appreciate that.

If you can find acceptance then I feel it will be better for you. The thing about RLS is, you will never have an ideal life, you will only ever have the best that's possible. Avoiding (less than ideal) solutions because of what ifs is not going to even give you best possible.

[Heatherlss in reply to Hidden]

Hi Manerva,

You've hit the bulls eye. It was my decision to skip Pramipexole as I thought I could just try living without them. What I do know is that when I have had RLS since my little boy was born back in early 90s. Since then though, I had always lived with it until I mentioned it to my doctor.

It is such an overwhelming feeling. It has totally occupied my thoughts. All I'm able to think of right now or at least the last few weeks has been about the fact that I need to take a medicine without that I would have so much trouble that I would not be able to. I stopped around today in the super market today and looked at people and thought none of them probably need a medication to keep their legs quite at night. I cried last night and have spent the entire day wondering how should I deal with this. I want to try opiods for weaning off Pramipexole and seeing where I'm at without any medications. But with last night in my thoughts, I wonder if I'll be able to get through that barrier. Besides, no doctor I know of even seems accommodating to the idea of RLS, its treatments and long-term future.

[Joolsg in reply to Heatherlss]

Hi Heatherlss

Interesting that you also developed RLS while pregnant/ after your child was born. This is a familiar story. It could be linked to pregnancy anaemia which then seems to mean we develop RLS and need higher levels of iron.

I suggest you ask your GP for a full iron count blood test and ensure you get the actual number for serum ferritin. If it's below 100, start supplements of ferrous bisgylcinate ( gentle iron) every other night.

If pramipexole is worrying you ( due to risk of augmentation) you could reduce slowly and ask GP for an alternative med, like Pregabalin.

However, you may be one of the lucky people who finds raising ferritin levels resolves your RLS.

[Heatherlss in reply to Joolsg]

I guess that is the way going forward. Although, with yesterday's experiment, I'm totally down on confidence that I could somehow get through a night without the DAs in my body. Getting my doctor to agree on all this with the right treatment too seems a tedious task.

[involuntarydancer in reply to Heatherlss]

I would second Joolsg's suggestion about iron - it can make a big difference. I would also urge you not to feel too disheartened. The symptoms you experienced when you stopped pramipexole are not your base line symptoms. While on the dopamine agonist such as pramipexole your symptoms will be MUCH worse if you stop it. But if you persist without it your symptoms would almost certainly improve. Perhaps not to complete elimination but much better than what you experienced last night. However, as you are on a relatively low dose of pramipexole it might be better not to rush to discontinue at this stage. Take the good of it and face the difficult process of discontinuing only when it ceases to be effective at the current dose. I would say that on no account should you increase the dose of pramipexole however.

[Heatherlss in reply to involuntarydancer]

I get what you're saying but to be very honest, I have always been that kind of person who worries about the future. I'm scared that I'll augment on this one and when getting off this drug when having used it for six months is so incredibly difficult, I don't know how I'll do this when augmentation strikes.

I have been taking iron supplements for last 2 months now. I have read about gentle iron and its absorption and thinking of now starting on it.

[Lapsedrunner in reply to Heatherlss]

Oh Heatherlss, so many of us can identify with your thoughts. It all takes a lot of processing. Try not to panic, you will find a workable solution.

You could keep the pramipexole dose low and make sure your ferritin is good and just watch out for augmentation, maybe taking some drug holidays (I think when you know what to expect and have something codeine based to help it might not be so bad) Or come off the pramipexole (with help) and switch to a gabapentin type med.

I augmented after a good year and am now largely getting enough sleep on a low dose (200mg at night) of gabapentin with the occasional supplement of some caffeine and sometimes a cocodamol (usually after running)

I’m also trying not to assume no one else in vicinity suffers with sleep issues...because clearly they do and you will be able to advise and help them!!

Stick with it x

[Heatherlss in reply to Lapsedrunner]

Hi ! Thank you it is good to read something positive after the day I just had. I need my doctor to agree with me on this that giving the codeine or some short term opiod might help me get off this one. He said that I could just stop and it would not be as severe an issue as it turned out to be. How did you wean off ? How was the experience ?

[Hidden in reply to Heatherlss]

Just to back up what's been said, your pregnancy although some years ago may have depleted your iron stores, which could be the cause of your RLS. As Jools says, it would be good tp get your ferritin tested before trying to wean off Pramipexole. It doen't sound as if there's any need to hurry into getting off Pramipexole.

If you're like me when I find out there's something wrong with me, it makes me feel bad about myself, I don't like being "flawed". I want to get it fixed immediately and the thought that something might not be fixable, I'll have to put up with it for the rest of my life is quite upsetting.

However, I've a few things now that aren't fixable, RLS being only one of them. I've found that after a while with each new change, it gets better after a while because you can accept as being part of what you are and it's not a "flaw", it's just a change.

If you go in the supermarket and look at people, maybe none of them need to take medication to calm their legs, but I wonder how many have to take insulin every day, how many have to take anticonvulsants or painkillers for chronic pain.

You're not alone, it's a common situation.

[Heatherlss in reply to Hidden]

I had been of the opinion that I might just be able to get off Mirapex without any opiod. But it turns out that it is virtually impossible to do so. I will be talking to my physician regarding this however, I am pretty sure that he would not entertain the idea of taking opiods.

I'm trying to have a more positive outlook towards this medication thing. I spent the entire day almost not thinking about the fact that I do indeed take a medication to keep my legs calm nor did I look at the people at the supermarket today and think otherwise.

I guess it will take some time to get used to the fact. However, a part of me still wants to give it a go without Mirapex or any drug for that matter. I want to see if I could do without it. But for that I first need to get myself off of it.

[Lapsedrunner in reply to Heatherlss]

Hi. My experience...My Dr thought I could just stop the pramipexole and swap to gabapentin too.

I vividly remember the night I didn’t take it...no sleep and literally rotated all night! I was terrified and went to chat with a local pharmacist and made a bit of a plan to gradually wean off it.

Although the pills are tiny you can break them (or some people crush them and divide the powder)

It wasn’t a pleasant time and I didn’t have anything to help (I flirted with some cocodamol but it didn’t do much then although I find it helpful now) I think it took about 3weeks. At around that time I discovered this forum, if I’d known about short term opioids I might have asked my GP.

If you are going to stop I think a plan is important. Hopefully you have a significant other to support you. Choose a time when you’re not too busy/stressed. Take iron. When I realised that things would get worse before they got better I felt a bit more confident.

This forum has been brilliant and now I’m on a low dose of gabapentin at night. Although I often don’t sleep right through (although I did last night!!) I get enough sleep (sometimes need a caffeine tab +/- a cocodamol)

I think it’s natural to feel upset that we have a sleep disorder but I now think that if this is how it is, then there are people out there dealing with far worse .

On the flip side of your dilemma, with the knowledge I have now, when I started pramipexole I would have worked harder at my iron and tried a half dose to start with.

All the best to you x

[involuntarydancer in reply to Lapsedrunner]

Hi Lapsedrunner,

Your comments hit a cord. I so wish I had known to focus on raising my iron when I was first prescribed pramipexole. If I had my time again I would never have started pramipexole and I would mainline raw liver if I thought it would help my iron.

[Lapsedrunner in reply to involuntarydancer]

Haha, the liver reference made me feel a bit queasy!

[Heatherlss in reply to Lapsedrunner]

You did do extremely well and I'm so happy that you take the lowest dose and still manage to do well. *touchwood*. Last time I remember taking some medication for pain and my doctor prescribed the mildest of the mild pain medication as he said that it is never a good idea to take such strong tabs. However, this seems to be a completely different scenario. Although, I'm worried about addiction and dependence on opiods too but I hope temporary use won't be so harmful.

Anyway, do the opiods completely relieve from the incredible burst of RLS we have when we stop taking the Mirapex ?

[Lapsedrunner in reply to Heatherlss]

I have never used anything stronger than a bit of codeine in cocodamol so can’t personally comment but I believe that they should help and they are low dose and temporary.

[Hidden in reply to Heatherlss]

If you had just had some surgery and needed some fairly strong pain relief while you healed, you'd probably not question taking an opiate short term at all. A lot of people do that and don't end up as addicts.

It's not intended as any kind of criticism but it sounds to me that anxiety is more of a problem for you than RLS. Anxiety can exacerbate RLS and also, at the moment, your anxiety is not helping you to solve your RLS problem. By getting anxious about the negative consequences of various options e.g. your fear of being on long term medication, your fear of "possibly" getting augmentation, your fear of "possibly" getting long term withdrawal symptoms", your fear of "possibly" becoming addicted to opiates are just walls that you're boxing yourself in with.

Obviously I know nothing about you, but I do imagine you might tackle all your problem like this. I may be very wrong, I only imagine it, and imagination is just that, it's not necessarily reality.

Your imagination about augmentatuion, long term medication and addiction are what you imagine, not reality.

I recall you previously said that's what you're like, you don't HAVE to be like that.

Here's some links that you might find helpful in taking control of and managing your own health.

healthywa.wa.gov.au/Article...

kcl.ac.uk/ioppn/depts/pm/re...

alustforlife.com/soul/you-a...

bemindful.co.uk/

[Parminter]

If it is causing no harm then you may be among the lucky +/- 20% who can take it forever.

[Bat3353]

We’ve all been there my drug of choice is ropinorole no one knows your body better than you my specialist is a little arrogant I like for my doctor to listen to my concerns and assist like a team player not dictate to me what I should do now he ordered a cpap machine this should help with the rls but I’m trying to remove things then I get hooked on that machine and that’s an other problem so I started with 2 patches 1 4mg and 1mg neupro then I set myself on the journey to getting off the dopamine then I went to 1 4mg ER ropinorole and a 3mg Ropinorole at night then I went down to 2mg ER Ropinorole and 3mg Ropinorole at night now I got rid of the 2mg ER ropinorole and only on the 3mg at night next I’m going to start cutting the pill down to pieces until I’m ofTHE ROPINOROLE FOR GOODits been a long road and yes from time to time I get the rls attacks so I carry pieces of ropinorole with me untold I’m dopamine drug free I am going to kick this drug for good stay focused cut the mirapex down and start that way

[Heatherlss in reply to Bat3353]

Are you taking any opiod for the withdrawal ? I hope it isn't too bad for you too.

[Hidden in reply to Bat3353]

That sounds a bit complicated! You are right of course to listen to your own body, but although I appreciate it is entirely your choice, there's a couple of things you say that might not really be helping you.

One is if you're trying to wean off Ropinirole, taking "pieces" of Ropinirole when you have an RLS "attack" I think is defeating the object.

I don't know eactly what you mean by "attack" or when your attacks occur, but if they're during the day, why take anything? If they're at night and causing insomnia then better to take a benzodiazepine or the like rather than taking an unknown amount of the drug you're trying to withdraw from. It just doesn't seem logical.

Secondly. I;ve never heard that a cpap machine can help with RLS. If you've been diagnosed with sleep apnoea, I guess it wouild be useful. I can't see the relevance to RLS at all.

[Bat3353]

No I get up and walk around or go in the pool it gets bad when I’m on the road from time to time so I take a small piece of my ropinorole but I try not to tonight I start on the 3mg at night I’m hoping to be done in one month or two then be clean for two weeks before I go to one of the other non dopamine pills those of you beware make sure you doctor knows what he’s doing before you start on dopamine yeah it was great while on the patch but when you try to get off it’s hell

[restlessstoz]

I weaned off pramipexole and had a nasty withdrawal time, so bad that I felt I had to go on something and the only thing my doctor could prescribe was another dopamine agonist! I tried two more and both times augmented within a week or two so ultimately had to come off them too. Rl is a dreadful disease and I empathise with all of us on this site and anyone who has it.

As others have said, a lot of your suffering is secondary to the RL symptoms. It's the mental suffering and it seems as though you're trying to be more positive. One thing I've found has helped me is a course I've done through a book from about mindfulness. It's an 8 week course and deals with such a lot that you talk about. It's really helped me, not only with RL 'stuff' but also dealing with some very difficult family issues that I have, so I think it would possibly help you. It's also available in an online course. Only two 10 minute sessions a day and reading a chapter a week. Not a great investment for what, for me, has been a profoundly positive change in my attitude to my RL 'suffering'. I really think it's worth looking into for you. Good luck regardless and know you are definitely NOT alone in your experience.

breathworks-mindfulness.org...

audible.com.au/pd/Mindfulne...

[Sara_2611]

Hi I know the feeling. Although I dont take any of those drugs because theyre not compatible with my medication . When I got my repeat prescription there was no Balneum Cream with a note in my pack saying there wasnt any instock & are ordering it so I went to Tesco to buy it & they didnt have any either so I went to bed kicking out like horse

[Biscuitface]

How are you now Heatherlss ?