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I'm having a REALLY hard time with this RLS............ I'm having a REALLY hard time with this RLS............

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  #1  
Unread 05-05-2003, 07:46 PM
I'm having a REALLY hard time with this RLS............

I have slept almost none at ALL in the last few nights because of this Restless leg syndrome. It's gotten so bad now that it is even begining to bother me during the daytime and it used to be only at night. I think I'm literally going to go nuts!!! My GP put me on Amitryptyline for it at 25 mg (but only on the nights that it bothered me) and the first few times I took it , it seemed to help but after that it didn't help at all. When I told my GP that he said to keep on taking it for a while............huh? I told him he only had me taking it as needed. and he said I should be taking it every night and he doesn't know why he told me to only take it as needed....ok? Anyway..since my last surgery...March 20....the RLS seems to be much worse..I don't know if RLS can be triggered by stress but at this point I am thinking .YES!!!!
My surgeon said I should up the dosage of the Amitryptyline ..(.which I found out is Elavil) to 50 mg per night because 25 mg wasn't enough to do anything for anyone he said. So I did.but I could almost swear that this has only made things worse!!!!!

Reading on another post today......I found a website that said Elavil is contraindicated in people with RLS because it can make it worse!!! So BOTh of my docs have had me taking elavil for RLS when it is known to make RLS worse. I'm SOOOOOOOOOOOO tired of asking for DIFFERENT medications because the ones I'm on aren't working or I am sensitive to them for one reason or another. I have a whole bag of rx's that I can't take but I paid good money for them. DOES ANYONE KNOW WHAT MEDS WILL WORK FOR RLS TO GET ME OUT OF THIS MISERY??? I MUST HAVE SOME SLEEP!!!

I have an appointment at 11:00 tomorrow and I am hoping he won't throw me out of his office and tell me I am a lunatic! If anyone has a clue .PLEASE respond. Thanks so much.

Dawn
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  #2  
Unread 05-05-2003, 09:16 PM
I'm having a REALLY hard time with this RLS............

There was a thread on this a couple weeks ago that I also posted on. At the top of the page click the search button and type in "restless legs". I think it was around April 22.
Hope you get some relief!

Sue
  #3  
Unread 05-05-2003, 09:23 PM
I'm having a REALLY hard time with this RLS............

I see a sleep specialist who says that Clonazepam (low dose) is the drug of choice for RLS.
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  #4  
Unread 05-05-2003, 09:46 PM
Hi Joselle.......

Good to see you......Do you know the name brand for Clonozepam?

I hope you are doing better with your hernia repairs..I am going absolutely nuts!!! I so expected to be feeling better by now. I was doing semi-well . mostly in the mornings but now with this RLS kicking in so badly, I wake up with so much pain even in the mornings.(I guess rom tossing and turning so much at night) I honestly think I'm going to lose my mind!!! Lots of s to you...you are a doll.

soohoo..I checked the thread you referred me to and there was lots of good info but nothing that I havent already tried. I know that I have a form of RLS that is passed down through the genes......my sister and I both suffer miserably with it! I have tried heating pads, cold packs, vitamins,, hot baths, bananas, been checked for anemia and yes even the massages although I will skip on the leg beatings...LOL.

I really just need to some sleep. This is getting absolutely out of hand! I can't even sit at the computer for more than a few miutes at a time much less get some sleep. I am at a loss on what to do. I've had this for years, but never to this extent. I kept both of my daughters awake last night with my walking around the house and going to the computer room and going outside to walk, and going to the kitchen and groaning in aggrivation.something has GOT to give!!!!!!!! There has to be REAL treatment for this.

Thanks gals for posting. Joselle, if you know that brand name please let me know....my surgeon is not one who is up on generic names of meds.......

Dawn
  #5  
Unread 05-05-2003, 09:53 PM
I'm having a REALLY hard time with this RLS............

Hi,
I hope I can help a little. The name brand of clonazepam is Klonapin. Hope that helps. I can relate to what you are going through. When I finally went to my doctor with my RLS he put me on quinine. I was very skeptical at first, but it actually worked. I took it every night around 5pm before the symptoms came on. The other thing I notice is my symptoms are completely gone since I am on the pain meds again.
I hope you can get some answers soon. If you do a search on RLS you should find some good info. You are right about the elavil. Alot of antidepressants can make symptoms worse. I take prozac and it doesn't make my symptoms worse, but I know that it is one of the ones that is supposed to. What ever you do stay away from things like benadryl, tylenol PM etc. They will make you really go crazy.


's

Pamela
  #6  
Unread 05-05-2003, 09:54 PM
I'm having a REALLY hard time with this RLS............

Hi (((Dawn))) so sorry to hear you're having such trouble with the RLS... it's always something, isn't it? I sure know what you mean about thinking you should have been better by now, I'm feeling that way myself these days.

I think the brand name you're looking for is Klonopin:

http://remedyfind.com/rm-4017-Klonopin.asp

It's mentioned in this link about treatment of RLS:

http://www.helioshealth.com/sleep/sleep_07_04.html

They say it doesn't stop the leg movements but lets you sleep despite them. I notice in there they also mention caffeine can be a problem... you don't drink coffee these days, do you? Hope this helps!
s,
-Linda
  #7  
Unread 05-05-2003, 10:20 PM
Thanks Pamela and Linda....

Pamela....That was alot of helpful info, thanks. I have tried both the Benadryl and the Tylenol PM hoping for some relief and all I got was more sleepiness BUT the same leg problems which then made me a zombie with RLS. I will ask my doc tomorrow about the Klonopin....Thanks. At this point they could shoot me one of those wild animal darts and I would be THRILLED!!! Also what you said about the pain meds makes perfect sense...I have been on pain meds for so long.(3 surgeries in 9 months) and I have been lowering my intake dramatically so that could have a connection, I will also discuss that with my doc tomorrow.

Sweet ((Linda)) ..Honey.You are always here holding everyones hand and giving out such useful info but you NEVER ask for support for yourself. You have been through so much lately. I think of you so often and how many times you have helped me through the rough spots. You are such a gem to all of us. I know your recovery has been rough but you are always so tough..I wish I were more like you. I hope you are getting more time with your wonderful kids....I know you were down about that. Thanks for always being here for everyone. I hope YOU are doing well. You are one week LESS post-op than I am, how are you feeling? Lots of to you sister!!! Thanks for the links. I am going to have a look now......as soon as I walk around a bit...

Dawn
  #8  
Unread 05-06-2003, 07:29 AM
I'm having a REALLY hard time with this RLS............

I know that it's said that Clonazepam just lets you sleep through the leg movements, but I can tell you for sure that at least in one case (my husband's) the Clonazepam also stops the leg movements. He only takesa 1 mg a night, too. But he's still worried about losing his memory!

I'm sorry to hear you're having such problems, Dawn. It sounds like a combination of things and when things finally settle down you'll probably find that your sleep problems are less, too. We've finally found a good sleep specialist and can't say enough about finding the right doctor.
  #9  
Unread 05-06-2003, 10:25 AM
I'm having a REALLY hard time with this RLS............

Hi,

I was the one who started a thread about RLS a month or so ago. I was given Clonazepam for it. It started helping me sleep through the night.

Yesterday I pushed myself with a 3 mile jog. Last night my symptoms of RLS was driving me nuts. I couldn't get comfortable at all. I was only to take the Clonazepam before bedtime but I took it at around 7pm. Of course I was asleep my 8pm...Knocked me out.

Right now I feel twitchy so I took a Clonazepam this morning. HOPE it doesn't knock me out because I need to drop of urine to see if my UTI is FINALLY gone.

Anyway I think my point of this is that I wonder if the push of exercise made it worse of if fatigue has to do with it.

ANY input?
Good luck Dawn. I know to well how uncomfortable this is.
Renee
  #10  
Unread 05-06-2003, 11:30 AM
I'm having a REALLY hard time with this RLS............

(((((Dawn))))))) I'm so sorry the RLS is so severe for you

I also have the type of RLS that is passed through genes: my mom has a very mild form of it; my sister and I have a slightly more severe form of it; my niece and my DD both have an extremely severe form of it. And my son's is aggravated by some of the meds he's on, however, normally, his is almost non-existant.

((((Dawn))))) according to the way you describe your symptoms, it sounds like, since your last surgery, you have symptoms with about the same severity as my DD's. Since she's only 7 and I've spent many sleepless nights where her leg was twitching sooooo bad that she couldn't even lie down, I can understand how frustrated you feel.

I think that, yes, stress can add to the RLS symptoms. So does fatigue, hormonal unbalance and anemia. And those are only the symptoms I can think of that make my RLS symptoms worse. I'm sure there are other. Some meds can also make the symptoms worse. And any stimulants can add to these symptoms.

((((Dawn)))) All I can say to you is that I hope that you feel better real soon and that you find a combination that, finally, helps all of your symptoms, without aggravating others.

Sending lots of your way.
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