Restless Legs Syndrome (RLS) Discussion Board

alaska3355 wrote:Oh, I just stock up on sale items and like to buy clothes at thrift stores. I live in WA state where there is a lot of fruit, so I have a lot of canned fruit, jam that I make, frozen fruit.....etc etc. I end up giving a lot of jam away! So I think I do overspend but not terribly.....no debt on credit cards, so I guess I can manage it.

You are lucky. I have a hard time keeping my finger off the buy button and I am always in the process of buying something off the Internet. The difference between taking the Mirapex (generic) and not taking it is that I might shop for things on the Internet back then before the Mirapex but I could just say no, now it is really hard not to purchase. I know about the problem now though so I think about it more. My wife reminds me often, "Don't buy anything!" lol I stay totally away from casinos, one arm bandits are very dangerous for me so to solve that problem I just don't go into them.

I'm back, I've been gone for a good while. Still on the pramipexole, 0.25 mg. twice aday for about the last 5 years. I've been reading more about augmentation and decided I'm going to get off the pramipexole. I'm going to a new neurologist the 31st of March. This is my 3rd one. the first one didn't know much about WED/RLS,but he left this area anyway, the second knew nothing either. So I'm trying a new one. We don't have many neurologists in this area. I hope this one knows something and can help me get off this drug. I cut my morning pill in half about a month ago, the first 2 days were pretty bad but after that I'm ok. Now last night I started on just 3/4 a pill at bedtime. I will keep it at that until I see the new doctor. I have no quality of life, I've gained a lot of weight, I'm sleepy all day, depressed, I hardly ever go out. I'm just a wreck. Of course if I get off this drug, and go back to where I was with the WED/RLS then what. I need help and I'm hoping this doctor can help me. I also didn't drive for about a year because I kept falling asleep driving. The doctor said I was sleep deprived. I emailed Dr. B and he said I should have a good RLS doctor to help me get off the drug. Easier said then done. What if I have to wean myself off it. Anyone, done that successfully? Sorry for the long rant. I'm glad to be back. I learned so much about this disease here. Any suggestions or comments I would appreciate.

BETTY/WV

It's virtually impossible to wean oneself off pram without a covering agent e.g. an opioid. Even
cutting back is difficult. The WED goes into major overdrive because the body is being deprived
of a drug to which it has become addicted. I need someone who understands WED and can get
me off pram. I have decided to see Dr. Earley at Johns Hopkins and am in the process of getting together
all the info they need. People like Dr. B and places like the Mayo Clinic are also good.
I am going to be paying for my treatment out of my own pocket. But if I can get off the
augmented pram, the expense will be worth it.

I am so discussed with doctors, especially those that prescribe DA's (Mirapex, Requip, Neuro Patch.) They don't even know anything about these drugs. I don't think I will ever take another drug. I wish I could go to Dr. B or Dr. Early, But I am 79 and can't travel very well. I more or less have to depend on my own knowledge to deal with this disease and the pramipexole. I am going to my 3rd neuro. the last of the month. The first 2 knew nothing about RLS or the medications. Boy, do we need help.......

We do indeed need help.
You have done well to reduce your pramipexole some, getting off it yourself if a massive task.
I agree with Orrel, you (like the rest of us) need good experienced doctor support.

Hi Betty,

I wonder if kratom would help you get off of the pramipexole. I know that many people use it to get off of other opioids, other painkillers, and alcohol, as well as drugs for anxiety and depression. They usually report good results. But I haven't heard of anyone using it to get off of a DA. If you're interested in trying, just search this discussion board for kratom, and you'll see lots of messages describing how to use it, and where to get it. Good luck to you.

Thanks, I never heard of the drug you mentioned. Thanks for your concern....I'll keep you all up on my progress. I have no support from family or friends so I will rely on you all, My husband totally ignores that there is any thing wrong with me. No matter how I feel I have to cook meals even if I can barely stand. No, breaks by eating out. My kids are busy with their life's.

If we need an opioid to help us get off pramipexole, is it difficult to get off the
opioid once the weaning process is complete? Also, how does one know when
the weaning process is complete and the pramipexole is out of the system?

I take Vicodin and have for a long time (as needed) I only take it when I am having a difficult time and I also take Mirapex. Which I am starting to wean off it. Dr. B. says that he has many patients who take an opiate and never have any trouble with it. Its when you abuse the drug that you can become addictied. I guess when I get down to taking hardly any pramipexole or none that I will know. Then if I am back to where i started with the WEd/RLS I will need medication. I have an appointment with my 3rd neuro the last of the month. The other 2 I went to knew nothing about WED/RLS, one said to me "you know more about the disease than I do". I knew then I was in trouble. Another said to me, when I mentioned augmentation "whats that".....From what I have read, I am in for a tough time. Hope I can do it.

Betty/WV - do you know that this third neurologist is experienced in the treatment of WED/RLS ?

I find it helpful to be armed with documentation so that if a doc says What's that' , I can say..... read this !

I looked her up and one of the ailments listed that she treats is RLS. Even so, she may not know much about it, as I have found out before. I will print the document you sent me. Thanks alot.

Betty/WV - I didn't send you any specific document.
However the link in my signature takes you to a list of documents which are available on the Foundation Website.
Some are free and some are available if you are a paid up member of the WED Foundation.

OK, thanks...

I have been on this drug at 1mg for about three weeks now as my dr took me off requip at my request as I had horrible acid reflux, and indigestion. I also experienced RLS in my legs and arms. I was on requip for over a year and had my dosage increased from 1mg to 4mg. I wake up every morning between 2 and three and stay up. I have also gained 20 plus pounds in last year. Now on pramipexole the RLS of my arms has stopped and I fall asleep immediately but still wake up at 2-3 am. I am also very fatigued all day. My question to you all is has anyone had palpatations on this drug or requip as I have experienced them with both. I go see a neurologist on the 26 who was on the list from this ORG. My daughter now answer is to increase my dosage.

Sorry about my typin g and spelling, really tired now.