Had RLS for 57 years, the older you get the worse it gets. I have had no sleep for a week my legs are off the scale. Been taking pramipexole for a good few years now it's not working at all.
I have tried everything over the years, nothing lasts. I have some pregabalin it was given to me wheni had a hip replacement in June. Reading some of your remarks
I might give it a go. Owing to current situation I can't get hold of a Doctor so I will have to take things into my own hands. I will try them.
I'll reply laterin more detail but you have to very slowly get off pramipexole as you're suffering augmentation. read the pinned post, watch the video and search pramipexole and you'll see that's the reason everyone joins this site- they are all starting to suffer augmentation.
it's a ticking time bomb health scandal and the medical profession haven't got a clue!
Hi, sorry to hear that you're yet another victim of this terrible drug.
Like all dopmaine agonists, pramipexole causes augmentation which is what you may be suffering now.
The best way to deal with this is to stop taking the pramipexole. This, in itself will improve your situation.
However, you must not stop taking pramipexole suddenly, this is quite dangerous. In addition when you start to withdraw from it you will probably suffer withdrawal effects.
These, I'm sorry to say are a worsening of symptoms and sleeplessness. This however should only be temporary.
To minimise withdawals as much as possible there are few things you can do.
Most important is to reduce the dose gradually and slowly.
A typical strategy is to cut 0.125mg tabs in half you can reduce the dose in steps of 0.0625mg. If you only have 0.25mg tabs, I suggest you ask your pharamacist for the smaller tablet.
Reduce no less more often than once every two weeks.
If you reduce by any more than this or more often, it will shorten how long you need to stop completely, but it will mean withdrawal effects are worse.
If you need help with withdrawal symptoms, you could ask your doctor for a low potency opioid, e.g. codeine and a sleeping aid. However, if you really can't get to see a Dr then paracetamol and codeine (over the counter) may help.
Another thing you can do is request blood tests for serum iron, transferrin, ferritin and haemoglobin.
You wouldn't need to actually seea doctor for this, you can request the tests or ask to speak to a nurse practitioner who can order the tests.
If your results are LOW, then you may iron deficiency or even iron deficiency anaemia in which case you will need iron therapy to correct this.
If your results are NORMAL, then ask for the exact result for ferritin. It may be normal but if it is under 75 then it is recommended you start an oral iron supplement. You do not need a prescription for this, an over the counter iron supplement will do. The one usually suggested is ferrous bisglycinate, known as "gentle iron".
To make sure you get the best result form this -
take it in the evening 2 hours after last eating.
take it withas glass of oranmgeor a vitamion C or folic acid tab
do NOT take any anatcid or magnesium at the same time.
takwe it once bi-daily, that is very two days NOT daily.
Odd as it seesm this will increase how much iron you absorb up to 50%.
Pregabalin is a recommended replacement for the pramipexole. It can be effective for treating RLS although after augmentation, it may not be completely effective.
Note that it can take 3 -4 weeks before it will start fully working and it doesn't work too well whilst suffering augmentation or withdrawals. Yoi can take it at the same time as takiong pramipexole,.
I cannot advise you to start taking the pregabalin without seeing a doctor. This is up to you.
Be aware that it is a controlled drug classed as potentially harmful and taking it without a prescription is illegal. It's not something you can take as needed or stop and start it at a whim.
If you decide to start it then the recommended starting dose is 75mg. This may initially cause moderate side effects such as drowsiness, vertigo and difficulty walking. Only take it at night becasue of this. These side effects should fade within a few weeks
The intial dose of 75mg can be increased to 150mg after 3 to 7 days.
Since it's difficult to say how effective it's being whilst withdrawing from pramipexole then I wouldn't exceed 150mg. It can be increased later UNDER PRESCRIPTION.
Do not take ad hoc extra doses!
Some people find it extremely difficult to wean off pramipexole, but it is well worth doing particularly you will find as the dose reduces, you begin to lseep better.
Elffinddoe. Thank you so much for very informative email. I will not take pregabalin. I will stick with pramipexole until I can see Doctor. This morning I used hot water bottle/foot and leg massager/tens pads and meditation. My RLS gave up after 13hours I was exhausted not a bit of sleep. Mķ
You could start to reduce the pramipexole in the meantime. It is up to you and you don't need a doctors permission.
It sounds as if you have extreme augmentation and I know it's possibly hard to believe, but lowering the dose may actually reduce symptoms.
Thank for your help and advice.
I see Elffindoe has replied in detail and given excellent advice. I second everything he's written. I wish you strength in reducing the Pramipexole. It's tough but your RLS will reduce in intensity once off it. There are alternative meds that can be as effective without the complication of the dreaded Augmentation.
Hello. I have had RLS in my legs, feet, arms, and hands for over 40 years and suffered many augmentations. Here is what I do. No alcohol or caffeine whatsoever! No beef or cheese. Dont overfill your tummy with food and dont eat after 6pm. Dont over exercise the legs but stretching really helps. I have breaks from Ropinerole 1mg at 8pm and take Oxycodone slow release (lowest dose) morning and evening. My only issue at the moment is trying to relax and nap at 4pm, I manage half an hour which is okay. I am now getting 6/7 hours solid sleep.
Love it, love it, everyone must do this. Better still -think about switching Ropinerole to Neupro. I believe Prami is the worst of the three, however. My only other suggestion would be to add 2 capsules of ferrous bisglycinate an hour before bed.
Feel like having a little fun? A little adventure? The first day you buy the iron try taking one capsule at 3pm. If you’re not fast asleep at 4pm please come back on here and call me every name in the book. 🤭
Thank you. I will try this and let you know.
How did it go?
Hi. I have not tried this yet as I am experimenting with Magnesium atm. Shortly after my email I had 2 glasses of red wine. Oh my, oh my what a mistake, my RLS was off the scale even stood up and switching from one leg to the other. Never again will I make that mistake.
You are really doing great and I am just glad to see you continue to experiment to find ways to be even better. I’m beginning to think that we as a group have reached an algorithm to treat severe, intractable, RLS. First and foremost, I think we have found the best of the worst “rescue” meds and in the right dosage and combination and is pretty much exactly what you are taking. Very low dose DA (Neupro might be better, however) and low dose opiate (buprenorphine might be best). Secondly, but just as important, is the “no eating” after 6pm, or there about, and then fasting till morning. And you avoid known triggers as well. But oh, that nightly fasting seems to be the key!!!
About 1/2 dozen people on here in just this past week have gotten relief (every night relief) because they have combined fasting (it seems) with their low dose rescue meds. Ideally, I would say, and most would agree, that no DAs is best, but we're talking intractable here. Every post-DA situation imaginable is on this Board. From that living hell people endure when they first get off the DAs to that persistent, long-term depression, anxiety and poor quality of life for sometimes years after. I choose your approach :).
We know that all of the above is due to the fact that the DAs down-regulate our already, genetically pathetic dopamine receptors. In other words, the DAs mess with our receptors in a way no other drug quite does. So until medical science comes up with solid ways to up-regulate our dopamine transport system (and fasting is probably one of them) I would stick to Plan A ;). I'm hoping that people on here continue to find things that potentially up-regulate. Up-regulate enough and you won't need DA's or opiates.
Take two cocodamol if you got this is temporary you can have a sleep then try to speak to your Doc
I hear you. I hate taking drugs** but they work. I think the key is finding the time your RLS "kicks" in and taking the meds x minutes before the onset. Some sufferers have it during the day (or all day).
** I take 0.375 mg Mirapex (pramipexole dihydrochloride) and
600 mg Neurotin (gabapentin) between 1030-11 pm and go to bed at midnight.
sleep
Sleeping
sleep
Gabapentin and no sleep
Gabapentin for Sleep?
