Augmentation

[Hoochybaby]

Hi I've been taking pramipexole extended release now for at least two years and although my rls is manageable insomnia is dreadful night after night I'm walking about all night to try and get some sleep. I'm ok during the day but as soon as I lie down my problems begin my whole body feels irritable and on edge and a feeling of having to move the result is I get little or no sleep. My gp is running out of options the only way I get some sleep is to take zopiclone which leaves me hungover the next day it's a catch 22 situation. I take a.26mg morning and a .52mg pramipexole at night I know this is a high dose but my neurologist put me on that dose two years ago and I have to follow his advice. I'm thinking of paying for another appointment to see if he can help I find it hard to cope at times and if I do any exercise my hands go into a tremor and I feel exhausted. I've put my Heath into the hands of the professionals but I feel as though we've run out if options

[Madlegs1]

Check out the pinned post on this page (side or bottom) on augmentation.

You've a long road ahead of you, but it is manageable.

Good luck.

[Hidden]

Sorry to hear about your distress. You have been on this site a while and must have seen a few members in a similar situation to yourself.

Unfortunately, it may be that the professionals you've put your trust in have not really helped you and the excessively high dose they've advsied you on is a signficant factor in your current difficulty.

You say your RLS symptoms are controlled but you take pramipexole in the morning, which suggests that perhaps at some time, you were getting symptoms during the day, not just at night. If this correct, you may be suffering from augmentation.

Insomnia is a feature of RLS and in additon Dopamine Agonists can make it worse.

The simple solution to your problem is to reduce and stop the Pramipexole. Not a straightforward or easy thing to do however. Furthermore, I'm afraid that the neurologist who helped get you into this situation in the first place is not going to be particularly helpful in getting you out of it.

As Madlegs says, you need to read up about augmentation, then you need to find a doctor who can help you with it. Not so easy in the UK.

I do note however that your're alteady taking Gabapentin, so this may be of some help.

[Hoochybaby in reply to Hidden]

Thank you for your reply. I know how complex this disease is and what works for one dosnt work for another. I was taking Gabapentin until last week but didn't work for me one gp said it was the cause of my insomnia and had me cutting back gradually until I have now stopped altogether but the insomnia is still bad I'm writing at 1.30am and no sign of sleep as yet! I am thinking of stopping my .26 mg pramipexole that i take in the morning do you think this is a good idea or not I could gradually release the frequency until I just take the bedtime dose of .53 mg but not sure?😔

[Joolsg in reply to Hoochybaby]

I think you need to read the pinned post on Augmentation that Madlegs has mentioned

It sounds like you’re augmenting and the only solution is to get off pramipexole.

Read other posts and you’ll see you are not alone.

It is the most common problem on this site and at least one person a day asks for similar advice and the answer is always the same. Get off pramipexole and don’t take another dopamine agonist.

Reduce slowly with the help of tramadol or OxyContin.

Once through withdrawal, Gabapentin may well work for you- I don’t think you have insomnia, I think you have Augmentation.

[Joolsg in reply to Hoochybaby]

My advice to you from 3 months ago is still relevant. I said then you needed to get off pramipexole and that Gabapentin wouldn’t help until after you were completely through withdrawal.

I know it’s hellish but if you keep taking pramipexole and you haven’t reduced your dose in that time, you are just prolonging the agony.

Once off pramipexole, your RLS will improve considerably and you will get some decent nights sleep with hardly any daytime RLS.

Sorry to be repetitive but it’s your only way out of the ‘insomnia ‘ as you call it. It’s not insomnia, it’s Augmentation.

Please try to stay strong. I promise it’s worth it.

[Hidden in reply to Hoochybaby]

Your case is quite complicated.

There are simply put, 2 types of insomnia, failure to get to sleep and failure to stay asleep. You seem to suffering failure to get to sleep because of your RLS symptoms.

This is therefore a failure of the Pramipexole to control your RLS at the time you most need it, i.e. when you're trying to sleep.

This could be a sign of augmentation, but from the detail you give this might not be definite.

This article

sciencedirect.com/science/a...

suggests. that extended release pramipexole can relieve augmentation. So i can see the logic for starting you on it. However the study is limited in scope and a little dated, and I'm not aware of anything to substantiate it so it's not very good evidence.

However, if there is any truth in it, there are some implications that follow.

The first implication is that the extended release mechanism for this particular preparation is a 24 hour one, i.e. you only need to take it once a day. If, as it's claimed for this drug, fluctuations in blood levels even out after taking it for 5 days, then there seems no point in taking it twice a day. The whole point of an extended release preparation is that you don't need "split" doses.

The second implication, which is pure conjecture on my part is that the release mechanism may not be as perfect as is claimed. This means that although the claim is that (after 5 days) the level of drug in the blood is more or less the same 24 hours after taking it as it is, say 2 hours after taking it, this may not be true.

If it were true, theoretically, it wouldn't matter what time during any 24 hours you take the one dose. If it isn't true then the timing becomes important.

I note that on first dose, unlike immediate release Pramipexole which only takes no more than 2 hours to reach a maximum level in the blood, extended release takes 6 hours.

Based on this, it might be of benefit to take one dose at the same time every day 6 hours before bedtime,

This should not make things any worse, if the 24 hour release is true, no problem, if it isn't true then taking the dose 6 hours before bedtime means that the level of the drug is highest, hence most effective at the time when you most need it, bedtime.

I'm not advising you to do this because there is potential harm in it that changing to a single dose at a particular time will encourage you to avoid reducing and stopping Pramipexole.

You may be augmenting despite the claims that extended release Pramipexole relieves augmentation.

Or, if you do find you get to sleep more easily, the other aspect of Dopamine agonists, early waking might kick in.

In the long term then it would seem better to reduce and stop Pramipexole as Jools suggests.

If, as you say, the Gabapentin didn't work. It may be that as Jools also says, Gabapentin won't work until all the Pramipexole is out of your system.

I'm not sure if this is true or not.

I have seen an RLS algorithm that includes an option of taking a DA and Gabapentin at the same time. This suggests it isn't true.

I have read members comments that it is hard to actually say the Gabapentin is working until your free of the DA, because if anythings working it could be just the DA. This suggests you can't tell if it's true.

It would be good to have a definite answer on this because you wouldn't want to go through Pramipexole withdrawal and THEN find the Gabapentin doesn't work!

However, it still seems best to reduce and stop the Pramipexole. If on the off chance Gabapentin can work at the same time as a DA, then you can start taking Gabapentin whilst withdrawing rather than waiting until you've completely withdrawn.

I'm sorry, I have no idea how to reduce and stop an extended release Pramipexole. It depends on how the release mechanism works.

Perhaps others have some experience of this.

I hope you followed this rather long winded explanation and hope it helps.

[Hidden in reply to Hoochybaby]

Thus may be of further interest to you, I have just received an enail from Dr Buckfuhrer (or his team) concerning Gabapentin not working until you have entirely withdrawn from Pramipexole.

The reply quote -

"We often use combination therapy which can include gabapentin and a dopamine drug like pramipexole. The gabapentin should add significant RLS relief when the pramipexole does not fully control them."

However, when withdrawing from Pramipexole -

"Gabapentin may not always be sufficient to control RLS symptoms when stopping pramipexole."

[Hoochybaby in reply to Hidden]

Thank you for your detailed response however I’m still not sure which paths to follow the consensus seem to be to get off the pramipexole but do it slowly and take the gabapentin at the same time starting with a low dosage? Not easy the extended release pramipexole confuses me not sure now when to take them although the don’t seem to work any more I still take the .52mg at bedtime and I’ve been cutting in half the .3mg in half trying to go slowly in the next few weeks I’m trying to get further help from the professionals but not holding my breath!!