Restless Legs Syndrome (RLS) Discussion Board

Hello,

Was just recently diagnosed with RLS/PLMD last fall and also have allergies and severe depression. These last several months have been very trying for me with all three of these conditions. Recently started new medicines for the depression (40mg Prozac and 75mg Wellbutrin 2x a day) and they've been miraculously effective for my depression. Only problem is now my RLS symptoms have been getting worse-- especially when I exercise (running, strength training, cycling). My sleep doctor told me today that I need to either cut back on or eliminate the Prozac. I really don't want to do that because I don't want the depression to come back.

Should I let my shrink and my sleep doctor fight it out over this one?

Some of us seem to find out WED/RLS is worsened when we take some SSRIs - such as Prozac. You can do a few things:

1. Live with the extra symptoms
2. Cut back the Prozac (a bit might help, but you might have to stop it completely)
3. Try a different SSRI - this often works; while some people are sensitive to several SSRIs, it seems many of us can find one we can tolerate without increasing the WED
4. Take more WED/RLS meds to cover the extra symptoms

People here have chosen all four routes - it depends on what's most important to you. You can absolutely let the docs fight over it....just make sure that in the end you get your needs met!

Have you asked your sleep doctor why he or she is saying you have to cut back on the prozac? It is accepted by most specialists that sometimes WED meds have to be increased to cover symptoms caused by ADs. If there were another AD that did not give you that problem, that would be preferable, to keep your total med intake low, but if you're not up to experimenting, then raising the WED meds seems reasonable.

You don't mention if you're on anything for the WED.

Either your sleep doc is inexperienced, or he is very knowledgeable. The front-line meds for WED can cause augmentation, so if you haven't started them and can avoid starting them, it would be for the best. However, at some point things can't be managed without medication.

Whatever you are doing, get your ferritin levels checked. Ferritin is not always checked during iron workups. Don't accept "normal" as the result, get a number. If the number is under 100, you should probably supplement with oral iron; if it is under 50, definitely, and if under 20 very definitely (unless you have another iron condition that would make it dangerous to take iron). People with WED have trouble moving iron from their blood into their brains, where it's needed for a host of functions including making dopamine. Simply taking iron for many people improves WED symptoms.

Thanks for the tips. I'm on .5 mg of Requip and .5 mg Klonopin an hour before bedtime. I can increase the Requip if my symptoms are bad to another .5mg tab per day. Sleep doc also said that once a week I can increase the Klonopin up to an extra .5 mg. The extra Requip and Klonopin work very well, but my understanding is that I can't increase the dosages all the time. I'll see about getting my ferritin checked next time I get blood work done.

You are smart to be careful about increasing the Requip (ropinerole). Over the last ten years of using these drugs (it and Mirapex/pramipexole), we've learned that any regular increase usually means augmentation. That is when the drug actually causes worsened symptoms. According to one of the RLS/WED experts, "Although the FDA approved upper limit for ropinirole is 4 mg/day, I (and many other RLS experts) now believe that 1 mg per day is a better upper limit (and even that dose does not ensure that augmentation will not occur)."

If it were me, I'd also consider something other than klonopin. Here is another post from Dr Mark Buchfuhrer*: "Furthermore, Klonopin is not an RLS drug but works to help RLS patients fall asleep (and there are much better sleeping pills than Klonopin which has a 40 hour half-life)." Since many of us have a hard time sleeping even when the symptoms are under control, you may want a sleeping pill of sorts. Ambien is one such option.

*Both of these quotes came from rlshelp.org. Dr B accepts and responds to patient letters about WED/RLS and posts them on this site.

Hello again. So my shrink decreased my prozac down to 30 mg per day. She has me taking 20 mg on M,W,F and then 40 mg the rest of the days since they don't make 30 mg pills. This seems to be working on the 20 mg per day and my sleep cycle has somewhat "normalized." I was getting up at 5:30a or 6a and then going to bed about 9p (didn't fall asleep until 10p or so). Now I'm going to bed about 10p, getting to sleep about 10:30 or 11p, and waking up at 7:30 or 8. Hopefully it will even out.

I've been reading up on some recent literature reviews in medical journals related to treatment of RLS. It seems really odd that my sleep doctor didn't request bloodwork for checking iron levels since these lit reviews suggested that RLS patients should have these levels checked. In terms of treatment, my sleep doctor was very adamant in his recommendations for using Klonopin. His background is in pulmonology, so he was also strongly suggesting that later on down the line, I might have sleep apnea (although I don't now; I'm very skeptical about his assessment in that area).

I honestly don't think that the Requip/Klonopin combo is working for me. I'm wondering if a second opinion from a sleep doctor with a neurology/psychiatry background might be helpful at this point.

I'd be very leery of his assessment, also. Klonopin really isn't the best starting point. Also, I find that people see what they want to see. My first sleep study was like that. The two techs were studying apnea and so excited they could find it - as soon as I has PLMs and started awakening, they threw a mask on my face. Of course, the sleep doc - a neurologist - said there were no breathing events - it was the movements that caused me to awaken. A pulmonologist is more likely to see apnea around every corner.

That said, one of our favorite docs among us (some of us fly to see him) is a pulmonologist and doesn't see apnea around every corner. And some of us have had neurologists who were equally bad. We've decided it's more of an attitude about WED/RLS than the doc's specialty. Are they up on the research? Will they read it? Do they listen to you? Can you take something from the WED Foundation or from PubMed and have them read it?

A blood test, in my opinion, should be starting point zero for every WED patient. Period. Both hemoglobin and serum ferritin. Any doctor who doesn't know that or listen when you point it out (and you can show that literature, including a pamphlet from the WED Foundation) is one who would lose my business.

Sometimes shinks can be taught about WED and can help you manage it. There is a great book - The Clinical Management of Restless Legs Syndrome, 2nd edition, by Lee, Buchfuhrer, Allen, and Hening. I've bought these before and given them to my doctors. Any doctor who will listen and learn - that's who you want. Sometimes you find them trained, other times you have to train them .

I trained my GP using email responses from Dr Buchfuhrer and also the book mentioned by Views, of which he is one of the co-authors.
Of course, your GP needs to be willing

Thanks so much for your helpful replies . I'll be traveling for a bit next month, but come July, I'm getting a second opinion. I think I've given this particular sleep doctor's "solution" long enough to know it's not working and I don't think that sticking with him is going to do me any good. Had I known better, I think I would have walked right out of his office upon seeing all of the various sleep apnea masks on display.

The fact that he prescribed Klonopin marks him as old-school and out of touch with modern methods of managing WED/RLS. Don't discount a doctor based on his/her area of specialization, because as Ann says, there are good ones everywhere - even some GPs become adept at treating refractory WED - and bad ones everywhere. It is simply the attitude of the doctor that determines if he/she is capable of learning and updating himself.