Dealing with RLS

[jane]

Jane here again... in The early years before RLS meds, I would walk in my living room/dining room for 3 to 4 hours at night.I was on Prescribed narcotics for years to treat Migraine and Chronic Daily headaches, detoxing a numher of times. so my Neurologist did not want to prescibe them for RLS in the early years. I went through # 1/2 years of psychoanalysis in my early 60's which helped to lessen my headaches.

[ViewsAskew]

It's possible to take opioids for RLS without becoming physically dependent. It means taking drug holidays, but it can be done. I was on methadone for 4 years and recently stopped it without any issues. I believe that is mostly typical, however other people have had issues when stopping, so I'm not intimating that it can't happen, just that depending on the drug you're taking, how you're taking it, and your physiology, it doesn't have to happen.

Then again, it may not matter if you become dependent. You have to decide about quality of life. To me, sleeping is more important than me being dependent. Besides, there are few drugs we can take that don't cause dependency of some kind.

[Polar Bear]

I have rls 24/7 for over 30 years. I take requip (which is similar to mirapex) supplemented with tramadol.

From a personal position I feel that it has improved my quality of life and the issue of dependency does not arise (for me) as I will always require medication for this condition.

[SquirmingSusan]

Jane, do you have an internist or family doctor whom you trust? Your medical history is so complicated, and usually the more general doctor will have a bigger picture of it all. And often they are the best suited to treat the RLS, if you can help them along a bit. I don't know if you have one you can get in to see on an urgent basis.

Stopping the meds like Mirapex and Requip can be really difficult if you're having augmentation. No doctor who knows anything about RLS would let you suffer through that without something to get you through that transition. After that there are a lot of options for how to proceed. Maybe just bring in the Mayo Clinic Algorithm and point out the part about not stopping the dopamine agonists without something to cover the symptoms.

It also helps if you can somehow communicate to the doctor just how much you are suffering. It's not the time to put on the false bravado and try to act like you have it all together.

Let us know how things go.

[badnights]

Maybe just bring in the Mayo Clinic Algorithm and point out the part about not stopping the dopamine agonists without something to cover the symptoms.

What page is that part on? I couldn't find it, which is why I quoted the part from Dr. B's book (in the other thread). It would help if Jane actually had that part highlighted to show him.

[SquirmingSusan]

Maybe it's not in there, 'cuz I couldn't find it either. The part on "Refractory RLS" is probably the most applicable. Darn. It's hard to acquire the books on a moment's notice. Dr. B told me that the Mayo Clinic algorithm is in the process of being rewritten because it's a bit out of date.

Thanks for keeping me on my toes, Beth. (And for jumping in and helping out!) I have so much of this information floating around in my head, but some is from the algorithm, some is from books, and some is from other websites.

The information might be on Dr. Buchfuhrer's (Dr. B) website, though: http://www.rlshelp.org I can't go looking right now 'cuz I have to go to bed, but I'll look tomorrow. You can do a site search for something like "withdrawal from dopamine agonists."

You can also email him directly from his website. There's an "email" button on the lower left corner of every page, I think. He almost always answers the same day, even on weekends. (Between 5-10pm Pacific time. Good grief I've emailed him a lot!) He takes phone calls too, and if he's out he calls back the same day. So Jane you could email him or even call, or have your doctor call him. Or email him and print out his answer and bring it to your doctor. (Or heck, I needed help and just flew out to CA to see him, but that's not always possible.)

Somehow that information on stopping dopamine agonists is out there and can be found. Best wishes with it, Jane. I hope you get some answers quickly.

[badnights]

Jane, just so you know, we;re talking on two threads now, don't forget the other thread, I have posted something for you there too. You should realize, the other thread has a Page Two now - you have to click the page numbers at the bottom to get to the second page.

susan, I posted a quote I typed from Dr B's book for laymen. I couldn't even find it in his Clinical Management book! It must be all the letters on his website that we're remembering.

Jane if you have time, susan was telling you to email Dr. B; there might not be time for him to get back to you before your appt but you could try, also I'm sure you'll have questions after your appt that you might want to run by him. The guy is a saint of some kind, truly, I've never met him but he gives freely of his own time and I can't imagine why, other than to try to relieve people's suffering and give them hope. His name is Dr. Buchfuhrer and he answers questions at http://www.rlshelp.org/
(click the email icon at the bottom of the left-hand pane) (or you can read some of the letters first, there are 90 pages of them! from people like us, answered by him)

[Polar Bear]

I only had a short time but I hunted out my copy of Dr Bs book on Restless Legs Syndrome. In chapter 8 on Augmentation on page 114 there is a little bit about stopping the potentially problematic dopamine drug to resolve the augmentation........

"During this interval they may need additional therapy to control the severe RLS symptoms that result from withdrawal. Medium - to high-potency opiods are usually the best choice for this situation. These drugs work quickly and effectively to control the increased RLS symptoms.""""

Also, I would imagine that on Dr Bs letters page the subject of covering withdrawal would be well discussed at rlshelp.org. I went to the home page where there is a search box, I typed in 'Withdrawal' and got many pages flagged up but just don't have time at present to go through them.

I hope this helps, an excellent idea is to have a copy of Dr B's book.

[badnights]

That;s a better prargraph that the one I found.
Jame maybe print tjhe both, to re-enforce each other?

OK
sleep.,. take me
I go now