I have not posted anything on this site before. But I read it almost everyday. I stared with RLS after the birth of my son 1971. Over the years it has deteriated to being 24.7 without meds. I take 2xpramipexole 0.88 at 5pm and 0.26 long acting at 9pm. I need to try to come of them I am experiencing side effects, dot seem to be tollerating them as I used to. I read I need to ween off them . My head is not my own I feel woozy, dizzy tired and only get a couple of hours sleep at night and still get it when I sit down and rest. And so I am always on my feet and keep busy. I took one less of my 5pm tablets last night and was awake most of the night with rls and ras. The neurologest has prescribed 1ron Tabs but they make me feel sick and upset my stomache. Better finish here or I will be on all day. but any advice would be gratefully appreciated.
pramipexole advice: I have not posted... - Restless Legs Syn...
Yes you need to wean off them. Put RLS and Augmentation in the search box and lots of posts with comments will show, You can get alot of info on what others do/did to wean of their dopamine med.
What are your ferritin levels Uku? You must know them, and they must be above 100.
Do not take an assurance from your neurologist without the numbers.
If he knows what he's doing, then I assume your ferritin levels are high, otherwise he should give you IV iron infusions.
If you do indeed need iron tablets to mainatian an already-high level, you will want to take Iron Bisglycinate. It does not constipate, does not make you feel ill, and is better absorbed by the body. You may take it with meals too. The usual iron tablets dished out by the professionals are awful. You may just as well chew a rusty old pipe.
Ask him a lot of questions based upon what you read here. Get all your ducks in a row, write it down neatly, then fire away.
I assume you mean 0.08 pramipexole? Whatever you mean, the combined dosage is still too much. You will augment on the final dose alone. I augmented on 0.125mg, plus all the side-effects.
Neurologists worth their salt, who know about this disease and are up-to-date (which you pay them for), are now staying away from pramipexole if they possibly can.
You may need a new neurologist, or a jacked-up GP, to help you through this.
The sleep issue and the akathisia are separate things. Your sleep patterns are going to be ghastly whether your not your legs are bad, unless you address them. One of the major nervous system side-effects of pramipexole is insomnia.
Ask your neurologist if you might try dipyridamole to help with the hyperarousal.
Or at least a benzodiazepine.
You have my deepest sympathy. I know exactly where you are.
When I realized I had been duped by the pramipexole, I was in complete despair. I never slept.
Then I got really angry, I picked myself up, did my best to educate myself, gathered tons of information, then I took charge.
The relationship between yourself and your doctor should be that of co-workers, not Big Man and ignorant victim.
Spend a couple of days and nights reading through posts. Follow the links. Look for good academic papers and download them. Print them out and put them in a file.
Reading them may be difficult, but you will pick up a lot.
Then visit your neurologist, If he is not up to snuff, fire him.
Find a sleep specialist if there is one to be had. Phone in advance, and grill the receptionist and/or nurse about the doctor's familiarity with RLS,
And don't be shy, keep talking. It helps.
Such good advice from Parminter. Educate and advocate. If you have a good doc who is a bit conservative about treatment work together to find what works for you. If you are not being heard by your doc get a new one if you are able to. Good luck. I am trying to raise my ferritin now. Doc won't do iron transfusion yet said have to prove to insurance that tablets don't work before they will pay for transfusion. I have a great doc and I trust her because she cares and when I asked her to read about iron and RLS she did. It's about being heard, believed and supported.
Thank you so much for taking the time to answer my post. I have taken on board everything you wrote and will take your advice. I have adopted your determination and will make a start on getting my self sorted. Will sort out the aweful iron tablets first and try to find a gp that knows more about rls and try to sort out the pramipexole thank you once again.