Dead ends in treatment

[Mylo]

Hi all - I'm 23 with RLS. My doctor is a university doc and has been very instrumental in keeping tabs with my RLS. Originally he had me on Clonazepam, then on Sinemet 25/100 as the Clonazepam stopped being effective. I spent a summer on oilrigs and the Sinemet helped me get the sleep I need and still be able to work 12 hour shifts. Coming back home I noticed jerks in legs and arms even on the Sinemet, so back to the doc. He put me on the 25/250 flavour of Sinemet, and I've been on it for a month.

Noticed last week that I started to get really, really depressed; so at the promptings of my boyfriend went back to the doc. We think it may be the Sinemet and since I had depression in the past he took me off it for a short time and gave me Clonazepam to help me sleep at night if I need it. Well, I need it - the jerking I get is intolerable and embarassing. I ended up walking around for about an hour at midnight just to get some relief.

I am worried that we are quickly running out of options. He wants to check my blood again and see if there could be anything that may be causing the depression (it's not like anyone near me died or whatnot) before saying it is the Sinemet. At worst I'm scared that he will take me off Sinemet entirely and tell me that I'm done for, there's nothing left I can do.

My boyfriend is 100% behind me and my jerky legs (he has head twitches so he's used to it) but some members of my fam aren't so supportive. It comes down the "RLS is in your head/just relax" sorta mentality. But when there are worms in your legs it's hard to relax.

I don't have so much a question but more am just in need to whine/vent, I'm so tired of going to the doc (he's wonderful, don't get me wrong) and whenever we find something that might work it ends up not. I feel like I am hitting dead ends, and that I'm going to be left to just kicking and twitching all over the place. I know there's no miracle cure, but I'm sorta just done with trying everything, only to have them not work as well as we had hoped.

[Penguinrocks]

Mylo,

Welcome!!!!!!

I may be wrong here, but I don't think a blood test is gonna show anything about depression.

My suggestion would be to ask your doc put you on Wellbutrin. It doesn't cause the RLS to get worse. You have to be very careful with anti depressants with RLS.

Ya, don't let people convince you that "its all in your head" We're all here and we know better!

You're lucky to have a BF that is supportive. One is better than none.

There are many of us on antidepressants, if you need it, you need it.

Keep us posted and vent all you want!

Penguin

[ViewsAskew]

Moi, it would sound corny if I asked you not to get discouraged; sounds like you already are. Or at least afraid of not having any options.

I don't know your past history, but there are so many other things besides Sinemet and Klonopin. Depression is often a by-product of RLS and poor sleep in general. There are actually papers written about it. It makes perfect sense that you may be depressed. But it's not necessarily caused either by the meds. And the depression could very well be caused by the experience your body is having with the RLS rather than an ogrganic cause non-related to RLS. The following articles address this. I didn't read them in detail, however I would think these could help:

http://www.rls.org/publications/documen ... epression'

http://www.medscape.com/viewarticle/511583?rss

http://www.imakenews.com/wemove/e_article000248618.cfm

http://www.psychiatrysource.com/psychso ... cle338.htm

The 'sticy' posts in the New to RLS thread have many links about RLS, including the algorithm and the So Cal. Support group. You can find out a lot about meds from these two places and from the other links that are there. Very quickly, I'll just write out some of the meds that are available in the US for RLS:

First choices that work for the majority of the population:
Mirapex
Requip
An opiate/opioid - there are 8-10 choices I'm guessing. I had to go through 3 to find the right one

The DAs work for 80% of people. Opiates/opioids for work everyone pretty much except those allergic. This class is broken into three sub-classes - if allergic to one, you can likely take another. Few people are allergic to all.


Then there are drugs that work well for some people. It it awful to have to go through trial and error to find what works, but according to one of the RLS specialists, 100% of people can get relief when they get the right combo.

Ultram
Temazepam (similar to Klonopin with a shorter half-life)
Pergolide (can cause other organ involvement, but works well)
Permax (also can cause organ involvement, but works well)
Neurontin (great for people with pain)
Keppra (new and not used much for RLS, yet)
Topamax (also some issues using it, and not used much for RLS)
Gabitril (newer, not used much for RLS, yet)
At least 6 other benzos have been used by people with success

I wish you and your doctor the best in coming up with a solution. I know how depressed I was and I frustrated. I cried at first and then was too depressed to cry. I was a zombie, not sleeping, not caring. After many meds and many doctors, I finally got the help that I need and the depression faded away quickly. This is of course just my experience.

With hope,
Ann

[Mylo]

Ann and Penguin, thanks very much for your responses. My doctor was very cautious to say it is the Sinemet causing the depression, but pulled me off of it in case it was (better safe than sorry). I still get depressed even not on the Sinemet, so I guess that speaks for something. He had mentioned running a blood test to make sure my thyroid was functioning properly (apparently thyroid problems can yield depression?).

I meet with him on Thursday to discuss what now to do. Luckily for me everytime I see him he has amassed an even larger stack of RLS books (:D). So he's up on the lit, as far as I can tell.

I am feeling a tad better, mainly because for one person who thinks I'm a nutter there are 10 who know I'm not. And the folks on this board, you all definately rock cause even if you can't relate fully, you can relate some.

Ann, I will go through those papers and show them to my doc. We'll figure something out, I just gotta keep my chin up and keep plugging on.

[Mylo]

Back from the doc, we had a nice chat. Even off the Sinemet I still feel depressed, so he thinks that due to my past history that the Sinemet may just be strengthening the depression that I would get even if I weren't on it, and not the RLS frustration/sleepiness/etc causing depression. But you never know.

He has me on a mega-lo dose of bupropion (Wellbutrin, sigh) to use with my Sinemet. I told him I do not want to stop the Sinemet since it is helping (like night and day that stuff!). He said the Wellbutrin shouldn't affect my sleep too much but to come back sooner then next week (when I see him yet again) if ANYTHING weird happens, anything at all.

The good news is that the Sinemet has been helping my sleep and in turn it has helped my studies. I am back passing exams and understanding things in classes so much easier. I am shocked just how much good sleep can make the difference between passing and failing.

We'll see how the Wellbutrin works. I hope it does, and I can go longer than a month before having to go back because things aren't working as well as they were in the past.

[becat]

HI mylo,
I think that is good news that your sleeping better. Wonderful about the school, exams are never fun, but harder when it all seems not to information you have even heard. It's like a whole new you with sleep, I know the feeling. Good stuff.
Yeah, ok, so you added the Wellbutrin, but the great thing in what you wrote....the doc told you to let him know right away if it's not working. That is the kind of doc we wish for any of us.
You hang in there. Keep up the good work and know that we're with you.

[Mylo]

Yes, my doctor rules. He is never in a hurry to just get my appointments over and done with, nor does he prescribe things without an indepth discussion first. He stresses the importance of telling him how I'm feeling so we can treat the depression and RLS. He also tries to prescribe me meds that are low cost and low side effect. He definately understands the life of a college student.

I wish I could clone him and share with everyone. :/