Vitamins and prescribed drugs for RLS

[mellym]

Hi...I'm brand new to the site and trying to absorb a lot of information quickly and it has become somewhat overwhelming. I'm not sure I'm even posting in the right area but I just finished reading the posts about advice on taking RLS drugs.

I have been taking Requip for 3 months but just switched to Mirapex as I was becoming very nauseous and suffering from augmentation. So far the Mirapex has worked well. Should I also try to incorporate vitamins into my regimen like, E, C, B-complex, B-12 etc.? If so, how much of each should I take and if I'm taking prescription drugs also, how do I know if the supplements are working? I will be seeing a sleep disorders specialist for the first time tomorrow so I guess I can see what he says, too. I am a frequent blood donor so I definitely will mention having my Ferritin levels checked. If they are low and I do start taking iron supplements, how do I know if that will help alleviate the symptoms, since I am also taking prescribed medicine for RLS?

[badnights]

It's confusing, isn't it? The problem is, there are no for-sure answers to most of your questions. You'll know the iron is working if you can lower your dose of the medication, ultimately, but maybe don't try lowering unless you get a high enough ferritin score after 3 months of iron supplements. You should also stop giving blood, I would think.

There's been no solid evidence I'm aware of that any vitamins or minerals besides iron are related to RLS. But also few studies done. Lots of anecdotal evidence, eg. people who swear that Mg helped them, and maybe it did. Maybe those people had Mg deficiencies that made the RLS worse indirectly, similar to how any physical or mental stress can make it worse, and that's why they were helped by taking Mg when others weren't. So as far as vitamins and non-Fe minerals go, I would take what you need for general heatlh, based on your diet and physical condition. Your sleep specialist should be a good person to ask about that.

It's depressing, but lots of sleep specialists are not very knowledgeable about RLS. If you inform yourself about it as much as possible, you can better judge how much experience your sleep guy has had in treating it.

Here are some resources you might like:

• RLS Foundation medical bulletin
  http://www.rls.org/Document.Doc?&id=1296
  
• Mayo algorithm
  http://www.mayoclinicproceedings.com/co ... b555569081
  
• A book for physicians who have to treat RLS that is also very informative for patients:
  Hening, Buchfuhrer and Lee, 2005. Clinical Management of Restless Legs Syndrome.
  
• A book for patients that physicians could also learn from:
  Buchfuhrer, Hening, and Kushida, 2007. Restless Legs Syndrome; Coping with Your Sleepless Nights.
  
• A book for lay people about RLS. This is my favorite to give people when I want them to understand the impact RLS has on one's quality of life:
  Yoakum, 2006. Restless Legs Syndrome: Relief and Hope for Sleepless Victims of a Hidden Epidemic.
  
• The RLS Foundation website:
  http://www.rls.org/
  
• The website for the southern California support group of the RLS Foundation, maintained by Dr. M. Buchfuhrer, who will answer questions about your particular problems with RLS and provides an archive of previous questions and his answers.
  http://www.rlshelp.org/
  
• Jill Gunzel's website
  http:/www.rlsrebel.com/

This is probably information overload. Just pick and choose. The first link is the most generally useful one, I think, but a lot of people recommend the second link instead.

[Polar Bear]

Welcome Mellym
Each one of Beth's bullet points is worthy of attention and numbers one and two are great to start with.
The books are excellent and are likely to be available on Amazon.

Good luck with your Specialist appointment tomorrow.

[ViewsAskew]

In addition to Beth's ideas, if you haven't, please consider reading the "sticky" posts in this and the other sections. Lots of good ideas in them.

Per giving blood, unfortunately, nobody with RLS should ever give blood. I hated stopping.

I think that most of us can tell when the RLS abates, even if we're on meds, because we get less breakthrough, if we forget, the RLS doesn't start as early, etc. But, as Beth noted, you probably won't know immediately anyway. You can always just try taking the meds a bit later and see if you get the normal symptoms and slowly move your time. Or slightly decrease your dose and see what happens.

Welcome to the board.

[mellym]

Thanks everybody for your replies which are quite helpful. I never made the connection between blood donation and the RLS problem. I have been giving for at least 8 years, almost every 56 days, so I would not be surprised if my Ferritin levels are low. I'll find out in a few days when the lab results come in. Guess I will not be donating anymore, regardless of the results.

I did see the specialist yesterday and got a few of my questions answered. However, they are trying to get me to participate in an RLS study they are doing so they spent most of my visit going over what is involved. I don't think I can do it as I work and the study involves a lot of doctor's visit and sleep studies. I simply can not take that much time off work. They assured me that they would still see me even if I decide not to participate in the study. I won't qualify anyway if my Ferritin levels are too low.

The jury is still out on this Dr. but I am hopeful I have found someone who can help me.

Thanks for all the links to information about RLS. I'm sure I'll have more questions as I read through everything. I'm so glad I found this site. Thanks!

[ViewsAskew]

We're glad you found the site, too, though we all wish none of us needed it!

Sounds like the dr's group at least gets RLS! That's a plus. I hope it works out whether or not you participate in the study.

[badnights]

Yup, that's a very positive sign that your doc is involved in RLS studies. Some docs don't even know that RLS exists, so you're probably in good (or relatively good!) hands.