My story

For everything and anything else not covered in the other RLS sections.
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sunkitten
Posts: 1
Joined: Mon Aug 09, 2004 2:23 pm
Location: Kingston, ON, Canada
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My story

Post by sunkitten »

I'm new here and just found this discussion board this morning.

I've had RLS since my mid-teens (I'm now 44). When I wasn't on any prescription medications, the RLS didn't strike that often or that severely.

In 1995 after a diagnosis of depression, my doctor put me on Zoloft (sertraline) which I know can exacerbate RLS symptoms. A few years later, I was prescribed 0.5 mg of clonazepam per day to be taken at night, to help with the RLS symptoms and to help me sleep.

Recently I had to go off the zoloft for a few days, and when I finally got some again yesterday, I took my full dose, and then tried to sleep last night. What a disaster! The RLS was in my shoulders and upper arms, as well as my legs, and is still not gone. I'm so tired i can barely keep my eyes open or type coherently and yet I can't sleep. :(

I'm wondering if anyone had changed their clonazepam dose and had good results with that.

Thanks,
Sharon

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Re My Story

Post by jan3213 »

Welcome Sunkitten!!

I'm Jan

I'm sorry you have RLS but am so glad you have found us!! You'll find lots of friends and support here!! There are a lot of knowledgeable people here ready, willing and able to help you so feel free to ask any questions--someone will see your posts!!

Now, to answer this one. In MY OWN experience, I have had RLS for approx 20 years (I am 57). You can see my bio on page 1/New to RLS/New Members and Current Members Please Help. You can see that I am on Mirapex and Clonazepam (generic Klonopin), but I ALSO take 20 mg. Prozac (which I did not list on my bio) for depression. It does not bother me; HOWEVER, antidepressants usually DO cause RLS to be worse. There is a gentleman on this site called Jumpyowl, who is really knowledgeable about such matters who may see this and help you with information about medication. Anyway, welcome. Anytime you need to talk, vent, or just need to ask a question, feel free. Even though I've had RLS for a long time, I've learned so much since I've joined the forum just from reading everything I could on this site. I would suggest that. And, if you feel like it, please fill out a bio under New to RLS/New Members and Current Members Please Help. Thanks so much!

Jan

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Post by Sole »

Welcome Sunkitten! I'm sorry you had to find yourself here but this is certainly a great place to be, under the circumstances.

I've had RLS since I was 19. Wan't diagnosed until 3 years ago, or so. I was prescribed Klonopin for anxiety. The first night I took it, I was amazed at the effect it had on my legs. It was wonderful. I continued taking it, with good results, until recently. Yes, I had to up the dose over time. I was taking 2-3 mgs at night. Started out with .5. That's the bad thing about Klonopin. Your body adjusts to it and it becomes ineffective. However, that's how it is with many drugs. I'm not surprised that.5 mgs isn't helping you anymore. It's the lowest dose. Your Dr. should know this and should be upping your dose accordingly. If, after adjusting your dose, you get good results again, you can take drug holidays. Which means, you could ever so often, switch to a similar drug and let your body reset. Allowing the Klonopin to work effectively again.

Most Dr.'s are hesitant, when it comes to Klonopin, because of the possibilty of dependence. Hopefully, your Dr. is one who knows that the chance of addiction is slim, when used appropriately. I'm not so lucky. My new Dr. was determined to get me off of the Klonopin. Which was ok because she was willing to work with me until we found another drug combo that is working. Right now, I am taking Mirapex (which 80% of RLS patients find effective) and Ristoril. I started with the Mirapex. It did a great job calming the legs but I still couldn't sleep. I started taking the Ristoril 3 nights ago and am happy to report that I've had 3 nights of good sleep.

Could you possibly switch to an anti-depressant that does not exhaserbate the RLS? There are a few. Like Wellbutrin or Remeron. Here is a link that describes the many medications used for RLS and there effects. You'll notice that most anti-depressants DO make RLS worse...as you already know. http://www.rlshelp.org/rlsrx.htm

Here is a link to the RLS algorithm, which is a very easy to read tool for you and your doctor. http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf

From what I understand, the experts recommend that for those of us with refractive/severe RLS it is best to take dopaminergic drugs. That's what Mirapex is. It's an anti-parkinson's medication. Jumpyowl is much more learned about all of the drugs so maybe he'll have advice that's more helpful.

You're doing the best thing that you can possibly do for yourself. And that is to get informed! Read, read and read some more. Train yourself to be your best educated advocate because the medical community is very uneducated about RLS. Keep us updated. Again welcome.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

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