what meds are best

[debbie]

Right now my DR has me on a anti seizure medication called Mirapex
He has told me the bad thing about this medicine is that after awhile it will no longer work and it is getting to that point. Not only that but it is very expensive. any suggestions on meds that I could talk to my DR about.
allot of people do not understand what RLS is and how it affects a person.
I think up until about 2 months ago he really thought it was all in my head Till the weekend I ran out of my med and was up all night, legs jubmped and jerked all the next day. By that time I was physcially & emotionally exausted!
I was walking the floors, I got angry then all I could do was walk the floors and cry, I had taken as much as I could take of my anxiety medicine and my anti depressants at night that I take to help me sleep. I was a walking Zombie, my husband did not know what to do he took me to the ER where they gave me a shot of valium and sent me home. No not the end yet, I still walked the floors barely aware I was awake but legs still jerking and jumping as I call it. He would put me to bed and I would get right back up he said, at that point I only remember bits and pieces and nothing. He sat and cried he said it was like watching a junkie and he swore that he would never say anything about my meds or about my jumpy legs again. I have had this and suffered with this since I was 8 and now I am 46. It was not until about 6 yrs ago that I found out by accident that other people had this to.
My hubby told me today that I better get on line and get the names of other drugs out there that work cause he don't ever want to see me like that again. I guess I was so tired and am so tired of these jumpy legs that I was to my breaking point that night. I can feel the med is not working as good as it did in the begining please any suggestions I am desperate.
Thanks so much in advance
Debbie

[becat]

Hi Debbie and welcome.
I am just so sorry your having a rough time. Ok, bit more than rough rightr now. Most of us have been there.
It sounds to me like you may have RLS in a genetic form. Parents or Grandparents having passed it on to you. That is key information. This may effect what you use and how long it works. BUT THERE IS HOPE.

Mirapex is one of the Parkinson's medications. I can't tell you at this moment where I read it, thus I dont' repeat it often.......But your right. Mirapex can have a time limit on it's effectiveness for those of us with genetic RLS. Often the normal thing for a doc to do is up the dose. That is becoming a topic of conversation among some, is that the rigfht thing to do? It seems that after a certain amount of exposure, time or amount, rebound and/or augmentation occur. Meaning symptoms come on stronger and faster. You may simply be done with it, depending on how long you've used it.

There are so many medications used for RLS. There is not just one I could name for you. All of us have slightly different symptoms, levels of severity, and some have pain. So all of us take medications or a combination of medications that work for us. I wish I could tell you just one that would work.
I'd like to know what you take for anxiety? Certain medications can certain make RLS worse.
Ok, lets do it this way...........What are your major issues?
Sleep?
Pain?
twitching and jerking?
Lets go by top three issues and lets try to find something that have been effective for others.
I'll check in soon to see if you've answered.

[32yrsw/rls]

I TAKE ALPRAZOLAM GENERIC NAME FOR ANXIETY.
HOW RIGHT YOU ARE, MY MOM HAS THIS AS WELL AS MY GRANDMOTHER AND COUSINS ALL ON MY MOM'S SIDE OF THE FAMILY, MY SISTER AND BROTHER HAS THIS ALSO. I HAVE ALWAYS FIGURED IT WAS GENETIC BUT DID NOT KNOW FOR SURE TILL I RESEARCHED AND CAME HERE.
I ALSO HAVE PLM ALONG WITH SLEEP APENIA AND HAVE A CPAP MACHINE
MY DAD, MY BROTHER AND MY SISTER ALL HAVE SLEEP APENIA. WHEN I DID MY SLEEP STUDY I HAD TO GO BACK A SECOND TIME FOR ANOTHER SLEEP STUDY BECAUSE MY LEGS JERKED AND MOVED SO MUCH THE FIRST TIME THEY COULD NOT COMPLETE THE STUDY BECAUSE OF SO MUCH MOVEMENT OF MY LEGS. THEY SAID I WAS THE FIRST ONE THEY HAD SEEN [AND THEY SEE ALLOT] THAT MY LEGS MOVED AS MANY TIMES AS THEY DID THAT THE STUDY HAD TO BE DONE OVER BECAUSE OF IT.
I SAID TO THEM NOW DO U SEE WHY I CAN NOT SLEEP
I DO NOT KNOW WHAT KIND OF MEDS TO EVEN LOOK FOR I HAVE BEEN ON MIRAPEX ABOUT 1 YEAR NOW B4 THAT ALL THEY WOULD GIVE ME IS ALPROLAZAM. THEY ARE THE ONLY 2 I KNOW, WHILE MY PHYSCIAN KNOWS ABOUT RLS I NEED TO TELL HIM OF OTHER MEDS THAT OTHER RLS PATIENTS USE TO SEE IF THEY WOULD WORK FOR ME. ANY AND ALL SUGESTIONS APPRECIATED
THANKS SO MUCH IN ADVANCE
DEBBIE

[becat]

Hi Debbie,
Well, your taking Xanax, and that one is ok. If you've taken that for a long time you may need a break from it, called a drug vacation.

Any way the link below was started by out dear Ann, it full of great information to research about RLS. There are two articles in particular I want for you to look at.
http://rls.org/phpBB2/viewtopic.php?t=549

1. Being the RLS Algorithm, it is the Mayo Clinic's gudie to diagnosis and treatment. They offer a PDF file that you can print off for yourself and for any doctor you see.

#12. didn't come up on my computer, saying there is an error.....BUT WAIT! Click the research tab on the top of the page, then click Restless legs at the left and whamo your there. Scroll down a bit and you start to see the listings of types of medications that most docs use.
Mirapex is a Dopamine medication. Xana is one in the benzodiazepine family.
Go and look at these articles. #12 to answer you asap. for better understanding what medications they should be looking at. #1, print it off and take it with you. Your doc needs a copy unless they are really versed in RLS.

Debbie, Yours is genetic in form based on your family history you've shared here. That may take advantage of the dopamine medications, making them something that will need a combination long with them for you. It's not uncommon for people to build a tolerance to these medications and need a change. Upping the dose does not always help.
Having had some wonderful people teach me a little bit about anxiety, you could be flipping out because you fear another night of RLS. Which probably helps to bring it on faster and harder. RLS reacts to stress faster that the "roadrunner", our reaction to that can be a bit like the "wildy coyote". So lets get you ready for the doc.

First for yourself write what 3 top issues your having.
EX: RLS
Anxiety
sleep issues
Pain maybe.

Then go to that page on WE MOVE and look to see what you would be able to take.
Miarpex may need to be replace for good or a drug vacation with another Dopamine medication. That would cover RLS hopefully.
You may need a different benzo medication to help with anxiety and the sleep issues.
Pain should be dealt with with pain medications. The lower end of them first and a low dose.

Everyone of us is different about how we cope with RLS. Same with medications. Some use none at all, a few get away with one or two, but most find that it's a combination of things that works for us. Including non-pharm ideas.
Hot baths, start learning bio feedback so you can help your body reset itself. Things so many good ideas around here and other place.
Your going to be ok. You've got us now. We understand and truely care. Even if it takes a while to adjust the meds., we're hear and will try to offer some support at the least.
Let me know how it's going. Best wishes for today.

[lyndarae]

WELCOME DEBBIE You are in good hands Becat knows her stuff. I also take mirapex and zanax and ultram I sleep but battle the bugs all day. What works for one doesnt for another. I wish you good reading and digging, education on rls is what saved my butt!!!!!!!!!! and my girls here take care and GOD BLESS~~~~~~~~~~~~~~Lyndarae

[32yrsw/rls]

I also take trazadone to help me sleep and effexor xr for my depression, I have high blood pressure, high chylosterol and just had knee surgery. Today as I type I am haveing the jumpy legs. I took my Mirapex 10 minutes ago.

Think I will retire early tonight.
I have read several posts, of people takeing Klonopin? Then I read about Klonopin and it is used also to help sleep. Is this maybe a med to talk to my Dr about?
I don't want to be sleepy all the next day though, does this happen?
I will print off the page u refered me to and make a appt soon with my DR
thanks so much
Please keep in touch
Debbie

[becat]

(((((((((hugs to ya Debbie and to Lyn)))))))))) those are always free around here.

Ok, you just gave me new info so I give you a new link. Your Effexor could be a problem for the RLS. I couldn't find much about trazadone though, sorry.

This link is about medications we should avoid. There just aren't too many antidepressant that are nice to RLSers.

http://www.rls.org/phpBB2/viewtopic.php?t=252

The trazadone list one of it's side effects as insomnia. Yeah, I know. But see this is what educating yourself is all about. When you know what the medications are and what they can effect it's easier to work with.

Klonopin is a good choice. It helps many people. Again, Deb, it's a matter to how your body reacts to medications and even different types of medications.
THIS IS IMPORTANT
At this point I would not just drop any medication you have until you've talked to the doc.. Some on your list like effexor should be weaned off, if dropped. No cold turkeys. So when you go in make sure the doc knows that your not looking for more problems and if a med change is needed do it in the right amount of time.
You may find that it's the hardest part of medication change is the coming off of one to start another. But after you have more than 2 medications it's hard for anyone to predict how you'll react or how they react to other medications. Ok, so lets play it safe.
I hope you know I'm not going anywhere. My one yr. annv. on this site is coming up and I am home for good here. RLS and how to live and cope with it is more than a passion for me. I was lost and now I'm found. I was a broken woman last year. Still have rough days, like the last couple of weeks......and a few to come, but I have my fight on and my spirit is filled with hope to share. You've got me Debbie. Tons of others around here just waiting to be here for you too. WE'll make I'm sure of it.
You are welcome to email me anytime you need to talk.
Hugs and Love to all.