What makes your RLS worse?

Neco · Post by **Neco** » Sun Jan 25, 2009 6:41 pm

Well, like I said.. The only way to really get the Methadone to work better is to have less of an extreme between the high and low amount of Methadone in your system.. The way to do that is to break up your dosages.

It may or may not require extra medication though.. If you absolutely can't get through the night without the full prescribed dose you are on now, then you'd have to discuss with your doctor about obtaining an extra pill a day, to be taken in the daytime. If you think you can get by you have a few options on how to attempt spreading your dose out.

The easiest way is to take your full usual dose at night, then the next morning or sometime during the day before it starts bugging you, take 5mg. At that point you can try taking only 10mg at night time. That way your supply will not be impacted by a negative in your remaining pills. The other way is to just take 10mg right off the bat and try to hold out until the morning, to get that 5mg you withheld the night before, during the daytime.

If you are really gutsy, take your 15mgs as usual, then the next morning when you wake up take 5mg, sometimes in the afternoon, no earlier than 12pm and no later than 3pm, take another 5mg, and then a half-hour to one hour before bed, take your remaining 5mgs. Using this method you still use the same amount every day, but take 3 doses instead of one.

The benefit of splitting doses vs one big dose is that in a 24 hour period, the amount of medication in your system remains at a constant level. This level may be lower than you are used to and it may take you a few days to adjust before you can truly decide it is NOT enough. In contrast taking one big dose gives you that immediate large supply in your system, but only lasts for X number of hours, then it drops off and you feel a LOT worse because you may have even less in your system than if you had split the doses up.

Think of it like the turtle and the hare.. Slow and steady wins the race, while fast instant relief may work for a few hours, but you may not make it to the finish line at the end of the day.

So again, you can try this on your own.. Split your supply into 2 or 3 doses a day.. If you go with two, take a minimum of 5mg and no more than 7.5mg (1 to 1& 1/2 a pill). If you take 3, take only 5mg per dose. That will keep your supply in check and you won't run out on accident. If you think any combination you have tried has potential to work with you, if you only had more medicine per dose, discuss this with your doctor.. Tell them that you feel the medicine is not lasting long enough and that you have problems feeling your RLS during the day, tell them about your car trips like you have told us. Use that discussion to lead them into your question, and ask about a small increase in your supply, so you can take more than one dose per day to try and keep a constant level of medication in your system.

Just make sure you express to them you would like to try spaced out doses to give you better coverage, but you don't think you can do it with only 15mg to split up over the day.

Unfortunately, I am not knowledgeable enough and have no personal experience with benzo's, or how to stop them.. Those who have stopped them suggest reducing your dose very slowly as it can be real difficult and cause lots of insomnia and other withdrawal symptoms. You really should tell your doctor that you want to get off the meds and would like instructions on how to very slowly ween yourself off of them.

Post by **ViewsAskew** » Sun Jan 25, 2009 8:15 pm

Zach wrote:Unfortunately, I am not knowledgeable enough and have no personal experience with benzo's, or how to stop them.. Those who have stopped them suggest reducing your dose very slowly as it can be real difficult and cause lots of insomnia and other withdrawal symptoms. You really should tell your doctor that you want to get off the meds and would like instructions on how to very slowly ween yourself off of them.

Just my experience...my doctor didn't have a CLUE about how to stop a benzo. When I was vomiting in his office, he was shocked at how severe it could be. Said he'd never seen or heard of that.

Huh. Just read through the posts at the ashton benzo forum (see link below) to hear all about the difficulties from gazillions of people.

This benzo forumis the best place I've seen for help. It follows a method by Dr Ashton (I think that's her name) who is a doc in the UK. When I asked Dr B about the method she uses, he said it didn't make sense. But, I'm not going to argue with the scads of people who've used it successfully. It seems to work well and better than other methods, at least for people who have difficulty.

Since about 50% of people have NO trouble stopping them, seems to me the best approach is to taper by .25 mg each week. If at any time that causes problems, especially in the last 1 mg, then read about alternative approaches, such as the Ashton method.

edited to clarify sentence and add link

SquirmingSusan · Post by **SquirmingSusan** » Mon Jan 26, 2009 1:12 am

Here's the website that talks about getting off various medications. http://www.theroadback.org/workbook.htm I think that most benzos are tapered with Valium. Clonazepam is 10-20 times stronger than Valium (I can't remember which, 10 or 20 times stronger) so it's easier to cut the dosages down.

Aiken · Post by **Aiken** » Mon Jan 26, 2009 2:41 am

Ann--

I've just skimmed Ashton's method, and it seems almost identical to the way my doctor told me to get off of Ativan. The only difference is that I used clonazepam instead of diazepam, and I went a little faster than Ashton suggests (because I could).

What does Dr. B think makes no sense?

Post by **ViewsAskew** » Mon Jan 26, 2009 3:14 am

Not sure...I can see if I can find the email trail but that was over three years ago.

When I realized I was in the 50% that gets clobbered when stopping benzos, I found the Ashton method and the UK forum. It sounded logical to me, but I wasn't (and still am not) a doctor. I was stopping clonazepam and couldn't take .25 steps without heroin like withdrawal symptoms.

I wrote him, gave the link, and asked what he thought. I can't remember exactly what he said, just that he didn't see any merit in it.

cnash962 · Post by **cnash962** » Mon Mar 09, 2009 3:50 am

Klonopin tears me up, also when I'm "hormonal" that is not a good time for my disorder either. Believe this one I can have caffeine and not be affected at all but cream of wheat will set me off. So far the only drug that helps is Requip 1mg every 6hrs and I will be heading back to the neurologist this week because I know things are getting worse. I also have PLMD but it doesn't bother me to much. I get some relief when I lay down but for a while. I am completely affected, head to feet. I hate it, I wish there was something better.

gymper · Post by **gymper** » Mon Mar 23, 2009 5:15 pm

Ranked from absolute worst to worst:
1. Chocolate - it's an absolute nightmare for RLS.
2. Ice cream.
3. Soda (the sugar).
4. Any sugary type thing at night.
5. Coffee at night.
6. Staying up too late - once the RLS has kicked in, it's almost too late.

Post by **ViewsAskew** » Mon Mar 23, 2009 11:15 pm

Cnash - so sorry you are being bothered so much. I was wondering...was it always head to toe? And did you start out on that much Requip in the beginning?

I do believe that there are better things. It just varies so much from person to person that finding the better thing can be very difficult.

Aiken · Post by **Aiken** » Tue Mar 24, 2009 7:47 am

Having had a reminder experience last night:

Fevers. Fevers make my RLS suck really badly. Really, really badly.

cnash962 · Post by **cnash962** » Thu Mar 26, 2009 1:40 pm

[quote="ViewsAskew"]Cnash - so sorry you are being bothered so much. I was wondering...was it always head to toe? And did you start out on that much Requip in the beginning?

I do believe that there are better things. It just varies so much from person to person that finding the better thing can be very difficult.[/quote]

I was diagnosed as having primary RLS and in the beginning it wasn't this bad just in the last 5 years or so it has gotten like this. The neurologist finally put me on 2 mg Requip every 8 hours and there is so much more relief. I'm am not getting the extreme power surges anymore (hated those).
I'm still learning more about this disorder as it progresses and I am so surprised by those who have not heard of it at least to the degree that I have it and I work in the medical field.

Post by **ViewsAskew** » Thu Mar 26, 2009 9:14 pm

If the RLS was not as bad when you started the Requip and then it got worse while taking the Requip (within 1-2 years of starting it), then it's possible the Requip is causing it to be worse. If you are familiar with augmentation (as related to RLS), then ignore me. If you are not that familiar, it might help to read the post about it in the Pharma sticky.

As you noted, many in the medical community are sorely lacking accurate and up to date (or any, really) information about RLS. I hope that changes soon.

Alan · Post by **Alan** » Thu Jun 04, 2009 6:36 pm

Alcohol--especially red wine
Being too warm--hot weather, too many covers. First thing I do when it starts is throw off the covers
Anxiety--I think anxiety about having RLS can actually bring it on

Sleuth · Post by **Sleuth** » Sun Jun 07, 2009 11:50 am

2. Ice cream.

That's interesting. I have been on an ice cream binge for the past couple of months. I eat it when I'm getting read to go to sleep. I mean LOTS of it. For some reason, it has become my pacifier when I get into bed.

Dale

Wayne · Post by **Wayne** » Sun Jun 07, 2009 12:25 pm

Aiken wrote:Having had a reminder experience last night:

Fevers. Fevers make my RLS suck really badly. Really, really badly.

Interesting. My one experience with fever was pretty neutral, I didn't have any increase. Earlier this year (while on a business trip, no less) I had a bad urinary tract infection and was given cipro.

That night I was really fevered, I didn't notice the RLS and didn't even take any meds, except the Cipro, and I slept fine. The fever had broken by morning.

bbengtsson · Post by **bbengtsson** » Tue Jun 09, 2009 3:44 am

I've had RLS for 30 years.
Sometimes beer will drive me absolutely nuts...sometimes it doesn't effect the RLS at all.
A few years ago I took a Dristan pill because I had a sinus infection. I thought I was going to go crazy with my legs.
I keep hearing about ice cream being bad. Don't know about that, but it seems that dairy products make my meds work better. (.5 Clonazapam, 2mg Ropinorol) I've been careful the past couple of weeks to always take my meds on a full stomach. The results have been very good. About 1 to 1.5 hours after the meds, I'm ready to sleep.
I haven't had to double dose since.
Sitting for any length of time gets my legs going. I just bounce my legs a lot or slap my feet together to get relief.
TORTURE: Being on a long airline flight with no meds.
Exercise doesn't help me a bit.
My wife thought it was stress related and convinced me to listen to a relaxation audio. It was very nice until I got totally relaxed and the legs kicked in. In my mind, relaxation to an RLS sufferer is like grain alcohol to a recovering alcoholic.