RLS or ? Help please... - Restless Leg Syndrome Message Board

mshiss · 06-08-2001, 04:10 PM

I'm hoping someone here can point me in the right direction. I've been having this strange "buzzing" sensation in my legs, back & arms for about 1 1/2 years. After a recent surgery, it went away during the time I was on the pain medicine. Then the sensations came back with a vengance, just about 2 days after I stopped taking the pain med. It kind of felt like the nerves in my body were all going haywire, my legs were jumping all the time & I had to move them almost constantly at night. I was also having this problem with my arms, every time I was just about asleep, my arm and back would jerk so hard the bed would shake. So of course it was impossible to sleep! A few days ago, it got a lot worse in the daytime, my arms and upper back started up while I was driving and it jerked so hard that I almost wrecked my car on the interstate. Needless to say I was very frightened. It had never been that bad during the day & now I'm almost afraid to drive.
I called my neurologist (I have severe migranes) and he called in something on Tuesday, it's called Mysoline, the only problem is that even at 25mg it caused me to feel like I'd been drugged out of my mind. Not even the morphine that they gave me after surgery made me feel like that!
HELP!! Does anyone have a suggestion???
Thanks!
Tammy

vickie valentino · 06-16-2001, 08:06 PM

TAMMY, FOR SOME ODD REASON PRESCRIPTION PAIN MEDS HELP STOP THE HORRIBLE CRAWLING FEELING, THAT I CANT LAY STILL FEELING RLS DOES TO US. HAVE YOU CONSIDERED ASKING YOUR DOCTOR IF YOU CAN TAKE ONE DOSE OF PAIN MED AT BEDTIME. ALSO AVOID DRUGS SUCH AS BENADRYL AND ANY PRESCRIPTION ANTI-NAUSEA DRUG. I TOOK SOME PHENERGAN ONE DAY AND I COULDN'T KEEP MY LEGS STILL ENOUGH TO SHIFT MY CAR. I HAD TO PULL OVER AND WAIT.CERTAIN MEDS THAT MAKE NORMAL PEOPLE SLEEPY, MAKE PEOPLE WITH RLS CRAZY. WATCH WHAT YOU TAKE AND SEE YOUR DOCTOR ABOUT TAKING SOMETHING LIKE DARVOCET OR LORTAB AT BEDTIME. PEOPLE MAY SAY THEY ARE ADDICTIVE, BUT THERE IS A DIFFERENCE IN ADDICTION AND TOLERANCE. I HAVE BEEN ON PAIN MEDS FOR TWO YEARS AND I AM NOT ADDICTED. I JUST CUT MY DOSE IN HALF FOR 2-3 DAYS THEN TRY TO GO 2-3 THREE DAYS WITHOUT, EVEN LOSING SLEEP AND THEN GO BACK ON MY USUUAL DOSE AND I SLEEP LIKE A BABY. IT IS WORTH ASKING. THERE ARE MANY SITES THAT SUPPORT THE USE OF NARCOTICS FOR RLS. GOOD LUCK

Baglady · 06-18-2001, 11:49 AM

Hi mshiss - I feel for you, been there, done that. Still do it if I'm not taking my medication. Let your doctor know about your symptoms. Ask him about RLS/RLMD, and see if he feels you should have a sleep study for the purpose of diagnosis.

There are so many drugs used for this syndrome. What works great for me may be awful for you. This is an odd syndrome inasmuch as they really don't know what it is or what causes it, possibly different cuases in different people, hence the wide variation in effective medicines.

But you CAN be helped! You don't have to live like this. The first med they tried on my was lortab, and it hit me so hard I couldn't wake up no matter what for 16 hours, for you it was Mysoline. I've been on klonopin (1 mg. just before bed) for two years, and was on xanax for three years before that, and have had no problems with addiciton.

The only difference in my life? I wake up feeling great, rested and relieved. I quit my day job and began a nursery business and go to bed at night dog tired from work and not the previous nights lousy sleep, and when I wake up I'm ready to go.

Don't wait - waiting, and the exhaustion you are carrying is dangerous. I can't tell you how many car accidnets I nearly caused due to inattention and sleepiness.

mshiss · 07-04-2001, 12:57 PM

Thanks for your help! I have found out that the mysoline was reacting with the depakote that I'd been taking for migraines. My doc cut out the depakote for 3 weeks and now we're going to try to re-introduce it at very low doses. Hopefully I won't have the same reaction to it this time!
Tammy
By the way, the mysoline really is helping, the buzzing feeling is still there, just really muted & the "jumping" is pretty much gone! HURRAH!!!!!