New to the Organization, Old to the syndrome

bbengtsson · Post by **bbengtsson** » Tue Sep 02, 2008 1:14 pm

I'm new to this site so I'm not sure where to put my story so I'll put it here.
My earliest memory of RLS was in the early 80's. I remember wrapping my legs in heavy duty Ace Bandages thinking that would help...it didn't. I didn't know the letters RLS until the mid 90's when I read about it in a Sunday magazine. I remember thinking "Hey I'm not the only one!". I went to my Primary care doctor and asked for Clonazapam. Clonazapam (klonopin) worked fine for quite some time ~ 2 years then a different doctor wanted me off of Clonazapam (it was starting to not be effective). She put me on Mirapex which initially worked and then stopped working inside a month. I went back to Clonazapam. Some time later, new doctor, I tried Requip. I started with the Ramp up kit and it seemed to work fine. After about a year, I had to up my dose from 1mg to 2mg. Now I'm having issues with Requip. I have to end this post but will start another just focusing on Requip.

ctravel12 · Post by **ctravel12** » Tue Sep 02, 2008 2:22 pm

Hi Bob and welcome to this site. I am sorry to hear about your rls but am glad that you found us.

This is the correct forum to be for New to RLS. Please go to the sticky post on thus forum that says "Managing RLS". There is alot of good information for you to read. Also there is an excellent article from the Mayo Clinic Algorithm. Please read it and if you are able to print it out, please bring it to your dr.

There are also two good sites that I am going to give you to read.
www.rlshelp.org and www.wemove.org

It is important to get your ferritin level checked (iron deficiency). You will have to request this as it is not included in the normal blood work routine. The ferritin level should be at least 50 or above. My neurologist wanted mine between 100-150 and the last b/w that I had done it was up to 135 as he had me on iron supplements.

You had said that you are having issues with requip. Are you having rls anytime during the day or night time? If so, you may be augmenting (having rls anytime day or night) Your dose may be too high; however I am not a dr nor have any medical knowledge but would talk to your dr about this and see what he/she can give you.

I see that you are in Mesa Az. Are you very far from Tucson, Az.? They have a support group there and will give you the info if you want to contact them.
Contact name - Jane Anderson telephone # 520-760-5039 the e-mail address is Tuscon@rlsgroups.org If nothing else you can either e-mail them or call and they may be able to answer some of your questions too.

I hope that I was able to be of some help to you and please let me know how you are doing. Remember one thing your quality of life is very important.

Sojourner · Post by **Sojourner** » Wed Sep 03, 2008 5:54 pm

b, Welcome to the rls family and glad you found us. Your story, so far, sounds all to familiar. Ugh! But, also sounds like you may have a doc, or two, that is familiar with rls. That's good. Look forward to your next post.

Best wishes,

M.

ctravel12 · Post by **ctravel12** » Sat Sep 06, 2008 3:37 pm

Charlene,

Thanks for responding to my letter so quickly.

I appreciate all the good information and links you gave me.

I was browsing the RLS site the other night and came across an audio clip from a call in show with a Dr. Mark J. Buchfuhrer.

This is where I learned the term “augmentation”. I mentioned in my post that I had a problem with Requip. I believe I’m suffering from augmentation. I was originally taking 1mg of Requip and it worked very well (except for some bouts of nausea). Over time, it began to work less and less then I had my dose bumped up to 2 mg. I had some issues with nausea from time to time but it seemed to be related to what I ate. I never could figure out what the combination was. I would sometimes just get instantaneously nauseous and have to immediately lie down.

Requip seems to be hit or miss. I need to take it at least 1 hour before I plan to go to bed. Sometimes after an hour, I get the yawns and have to go to sleep. Other times, it’s as if I missed my mouth or took a sugar pill. When I get to bed, the RLS symptoms are as intense as ever so I have to take another pill and wait another hour before I can go to sleep. I used to be able to gently rub my feet on the bed and wait for what ever medication I was on to kick in. Not now, if the symptoms start, there is no way I’m going to get to sleep. My legs require much more aggressive movement to satisfy.

I now have episodes of RLS during the day if I’m in a meeting or sitting in the same place for an extended time. I’ve never had daytime RLS unless I was trying to sleep during the day.

I have a new PCP now and asked him to let me try Clonazapam again. My thinking is to get off of Requip for awhile and let things reset. (I heard confirmation of such a thing in the audio clip mentioned above)

I tried .5mg and 1mg of Clonazapam without success. I don’t want to go any higher in dose because I’m afraid of having “medicine head” in the morning. However, .5mg of Clonazapam with 2mg of Requip works very well. The results are much more predictable than with Requip by itself. Mixing drugs was not my plan, but that’s where I am at the moment.

Side note: I’ve found that if I drink beer in the evening (on occasion) that it exacerbates RLS and seemingly negates the effect of Requip. Have you ever heard anyone else mention that?

I’ve never participated in a forum such as this RLS site. I didn’t know if I should email you or post this information. If you think the info above is worth posting, feel free to do so.

Brad Bengtsson

Post by **ViewsAskew** » Sat Sep 06, 2008 5:02 pm

You mentioned alcohol...definitely can worsen RLS. Since you're new to the site, a great place to start with info in by reading the "sticky" posts in each section, but particularly this section if you haven't. I am pretty sure they mention other triggers such as alcohol, level of exercise, caffeine, etc.

Per the clonazapam, I know I am a littlle more skeptical than most, but I take Dr B to heart when he says there are better alternatives. Both books that he co-wrote and rlshelp.org, where he writes, are invaluable to me for finding out a starting point for treatment and what to do with things like augmentation. I highly recommend reading posts here about augmentation as it's a bit complicated and can be difficult to overcome.

Welcome to the board and I hope you find what you need here.

Aiken · Post by **Aiken** » Sat Sep 06, 2008 11:20 pm

I second the note on alcohol. Alcohol drives my RLS insane.

About 18 months ago, I was in a position where I couldn't take my regular meds, so I tried getting buzzed instead just to get through the evening. However, while alcohol may have a dulling effect, it's such an RLS magnifier that I spent the evening going out of my mind.

Here's the telling thing: Even though alcohol generally makes me rather ill after the buzz wears off, and even though nausea is one of the worst things in life, that never kept me from having a drink now and then. A buzz is fun, I could accept the tradeoff. Along comes RLS, and it's so much worse after drinking than the nausea after drinking, that I've completely stopped drinking. I won't touch alcohol anymore. That's how scared I am of what it does to my RLS.

ctravel12 · Post by **ctravel12** » Sun Sep 07, 2008 4:43 am

ViewsAskew wrote:
Per the clonazapam, I know I am a littlle more skeptical than most, but I take Dr B to heart when he says there are better alternatives. Both books that he co-wrote and rlshelp.org, where he writes, are invaluable to me for finding out a starting point for treatment and what to do with things like augmentation. I highly recommend reading posts here about augmentation as it's a bit complicated and can be difficult to overcome.

I am sure that there are better alternatives for some of the people but I feel that if it works for you why would someone want to try another med????

I know that some members here take methadone, vicodin, tramadol etc. and if it works for them that is great; however if it does not then you would take the meds that will work for you. Like we all have said in the past "what works for one may not work for another".

If it is not broken why fix it.

Post by **ViewsAskew** » Sun Sep 07, 2008 5:52 am

Charlene, maybe I'm missing something. I believe that the original poster said that he switched from Clonazepam and to Requip because it wasn't working. Besides, it's important, to me, that people hear what the doctors say about the drugs. I'm thrilled that Clonazepam works for you. But it doesn't work that well for many, it has an extremely long half-life which causes problems for some people, and is much more difficult to stop for many people.

You are right, if it works, don't mess with it! But, if it doesn't work or isn't working well, why risk this? And if you haven't tried other things first - such as Ultram, a shorter acting benzo, or an anti-seizure, maybe wait to try Clonazepam until seeing if those work.

ctravel12 · Post by **ctravel12** » Sun Sep 07, 2008 2:09 pm

ctravel wrote:

I tried .5mg and 1mg of Clonazapam without success. I don’t want to go any higher in dose because I’m afraid of having “medicine head” in the morning. However, .5mg of Clonazapam with 2mg of Requip works very well. The results are much more predictable than with Requip by itself. Mixing drugs was not my plan, but that’s where I am at the moment.

Brad Bengtsson

No Ann you are not missing anything. He did mention that at first the clonazapem was not working; however taking a lesser dosage of the clonazapem along with requip works very well.