First night

[Jonvicky]

So I had my blood results back from hospital yesterday and all came back normal. So I started my pramipexole. Had the worst nights sleep and woke up with a stinking headache. How long does this take to get into your system to start work.

[Madlegs1]

It usually works immediately- as soon as your titrated dose becomes effective.

You should start at .088mg and work up by one tablet every three days until you get relief but not more than .25 mg. You should be taking an extended release version in the evening before symptoms start.

What is your story? And what other meds are you on.?

Cheers.

[Jonvicky in reply to Madlegs1]

Ok my story. I went to a sleep clinic where the checked my sleep. I had an app with the doctor two weeks ago to speak about the results. I received the phone call yesterday to say that I was to start mess. I'm on 1 tab of 0.88 mg for the first two weeks. The 2 tabs of 0.88 maggot the second two weeks I then have another appointment with the doctor. I also have claudication and acid reflux where I'm taking simvastatin. Clopodogril and lansoprole I think that's the right spelling.

[Jonvicky in reply to Jonvicky]

My predictive text lol. It's mg not maggot

[Hidden in reply to Jonvicky]

Excuse me while I scream ughhhhhhhhhhhhhhhhh. Are you starting on a DA before you have tried ferrous bisglycinate on an empty stomach an hour before bed? Scientists know that RLS is associated with extremely low levels of stored BRAIN iron even in the face of normal to high levels of stored body iron. We also have a lousy dopamine transport system possibly due to that lack of iron. By day there is enough unbound iron circulating in the blood such that we don't generally get RLS. By night those blood iron levels drop (especially in people with RLS) and we get RLS. So for some (not all) that ferrous bisglycinate provides relief with the very first pill. Still others realize relief after several weeks or months, even though their iron stores were normal to begin with. You gotta start with iron and if you like it after a few nights talk to your doctor. Even if you don't get immediate relief talk to your doctor about taking it for a month. I get complete relief from my sporadic RLS with one 25mg capsule of ferrous bisglycinate. So if the iron doesn't quite do it for your RLS then you move on from there. Add in some magnesium (or even a lot). Try not eating after sundown. Try taking some methyl folate and B12 (the methylated kind).

Most importantly look at every single drug and supplement you are taking. All of the following are known to make RLS worse than it has to be: melatonin, 5htp, tryptophan, anti-depressants, zantac/Tagamet, antihistamines, statins, calcium channel blockers and metformin and possibly warfarin.

You can get the ferrous bisglycinate from Amazon or even Ebay. If you're desperate and don't want to wait for it to come in then maybe buy some spatone (with vitamin C in it) and take at night on an empty stomach before bed.

Ok, well, I feel better now after that rant.

[Jonvicky in reply to Hidden]

Ok so I had to have a blood test before I could take the medication. The phone call from the doctor yesterday was to give my results of blood test which I believe was for iron count and 1 other. These came back with a positive level in my blood. Otherwise I wouldn't have been allowed to take the medication

[Hidden in reply to Jonvicky]

Doesn't matter how normal your body stores of iron are, if you have primary RLS then in all likelihood your brain is iron deficient. By taking a highly bioavailable form of iron you are literally sneaking your brain some iron at night when it needs it most. It's cheap and worth a try. The DAs are a DEAD END unless you just can't take it anymore and the iron doesn't work for you. Done! I won't bother you anymore, but as a fellow human being and RLS sufferer I felt the need to tell. Good luck with whatever you decide.

[Jonvicky in reply to Hidden]

Thankyou. I do take every comment at its highest. I will look into this and get some. Can I ask how long have you had rls and have you always taken the iron tabs??

[Hidden in reply to Jonvicky]

I've had mild intermittent RLS whole life. In early 40s I started to take 1mg of melatonin not knowing it makes RLS worse. I developed whole body RLS - it was the devil incarnate. My eyeballs were restless. I read on the internet to just take some iron at night. I bought a "gentle" iron because of IBS from health food store. It worked first night and every night. One night I ran out and health food store was closed so I went to drug store and bought ferrous sulfate figuring I'd rather be constipated than sleepless. I totally expected it to work yet it did not. Back to the bisglycinate I went. When I upped my dose of melatonin I found that the one iron tablet no longer worked and had to up it to two capsules. When I finally stopped the melatonin my RLS went quiet. So that's my tale of woe. I see you're taking two drugs - statins and blood thinner that may be making your RLS worse than it has to be. Try taking those drugs in the morning if doctor will let you. Be well. Put the following members in the search box above and read their story Bganim, GillRLS, Lauraflora, Chirpyandcheerful, DicCarlson.

[Jonvicky in reply to Hidden]

Thankyou tredlight I sure will read there stories.

[Hidden in reply to Hidden]

Hi Treadlight

I'm newish to this forum, but found your info VERY interesting!! I shall definately look into your suggestions johnvicky. Sound much better idea in place of so many very heavy drugs that produce really unpleasant side effects- for me, anyway!! Here's hoping and fingers AND toes crossed !!

[Hidden in reply to Hidden]

Yep, the pain killers are a drug of last resort. Plus I'm not yet convinced what you have is RLS. Plus we don't know what other conditions you have ie diabetes, or what other drugs you are taking for other conditions? I believe I have the beginnings of PN which supposedly is most common in tall men, like my father who was 6.3 and had PN. I am a 5.9 woman. I read acetyl l carnitine is supposed to be good for PN. I saw that you have burning mouth and tinnutis. So there probably is something going on with your central or peripheral nervous system. The ferrous bisglycinate is cheap and worth a shot and might help the burning mouth as well. We can't go off half cocked. Before I try something I prefer to understand the logic behind it, otherwise I don't try it. If it makes sense and it is a benign supplement or diet then I will try it. Also balancing exercises are supposed to be good for PN. Have you tried a heating pad for those 4am pains in your leg? How about a non-breathable latex wrap? Pain is not uncommon with PN. With me, sometimes just bringing the discomfort down a notch or two allows me to sleep. This is all good stuff Buci - iron, also maybe zinc for mouth, methyl folate, b12, heat, balancing exercises. Don't get depressed get angry. The answer is almost always out there. Something is going on with your peripheral nervous system just not sure it is RLS.

[Hidden in reply to Hidden]

Sorry , misspelt your name, should have written tredlight!!!

[Hidden in reply to Hidden]

yourdentistryguide.com/buri...

I agree, the iron (gotta be ferrous bisglycinate), methylfolate (never folic acid) and a GOOD B complex might be the way to start for all of your conditions. At 4am when your legs hurt try balancing on each leg then going back to bed or lay almost on your stomach.

[Hidden in reply to Hidden]

yourdentistryguide.com/burn...

[Hidden in reply to Hidden]

Thanks for that. Shall have serum ferris blood test next week, then depending on result intend to try ferrous bisglycinate!!

[Jonvicky in reply to Hidden]

Yeah I had mine and all came back normal. Tredlight does say that even tho your test might come back normal. Aparently the iron levels drop at night. I will be seeing my consultant in two week to discuss this further. But I'm happy to keep in contact with you. As it seems we are both in the same time scale. As I have just started my medication

[funnyfennel in reply to Hidden]

Interesting about the balancing...I di some in Yoga and now find I want to do it at home...and yes am sleeping longer (but could be the dates and walnuts!)

[Hidden in reply to Jonvicky]

Seems that warfarin (a blood thinner possibly similar to your Clopodogrel) does indeed trigger RLS AND heartburn.

mdjunction.com/forums/pulmo...

[Hidden in reply to Hidden]

Remember, the vast majority of the world can take warfarin, melatonin, statins, Benadryl, zantac and never feel so much as a twinge of RLS. The vast majority of the world can be anemic and never feel so much as a twinge. But we who are pre-disposed to RLS...well heaven help us if we take those substances or become bodily anemic. Our brains are always anemic.

[Jonvicky]

So second night. Really comfortable and relaxing. Been and got iron tabs feel more awake today aswell so I must have had a good night.

[Hidden in reply to Jonvicky]

Jon, did you take the iron last night?

[Jonvicky in reply to Hidden]

No I'm waiting for it to be delivered

[Hidden in reply to Jonvicky]

I think you will like it. I'm glad you had a good night. I just wish the DAs didn't further down-regulate our already down-regulated dopamine receptors. But for making the RLS worse in the long run the DAs would be the perfect drug.