I'm new...

[Dr. Grammy]

Hi,

I live in New England and am in my mid-60s. I've had RLS about 7 years. It's worsening almost day by day, now making me squirm 24/7. My neurologist prescribes Requip and neurontin which help some but leave me groggy. I work 8 to 10- hour days, which gets challenging.

All my (recent) labs were normal except TSH, which was slightly elevated. I'm planning to ask my PCP if she'll prescribe thyroid hormone, justin case it might help...

Looking forward to visiting the board now and then.

[Polar Bear]

Hi Dr G, and welcome to the discussion board tho we are sorry that you have rls/WED.

You say that all your recent lab reports have been ok and I wonder if this included your ferritin levels. This ferritin blood test shows how well you are storing iron, as opposed to the iron levels in your blood. The ferritin test is not done as a matter of routine and needs to be specifically requested. Docs often say that a level of around 20 is ok but for those of us who suffer from RLS/WED it is best to be at least 50 and preferably nearer 100.

I have had this condition for 30+ years and it is mostly under control with requip and tramadol, tho having said that, tonight I find myself at the computer at nearly 2am with my legs doing a dance all of their own.

Have you tried any other medications other than requip and neutontin.

The link in my signature will take you to The Mayo Clinic Algorithm which is a great guide for the treatment of RLS/WED both for yourself and for your doctor.

[Dr. Grammy]

Thank you for your suggestions. I like the Mayo link. Lots of good info.

I tried clonazepam a few years ago, but it turned me into a zombie even on a low dose. I slept nearly 24 hours and was groggy for three days after taking last of only 4 pills!

I tried Sinemet but misunderstood the neurologist's instructions--forgot to overlap it with the Requip, d/c'd the Requip instead that night, and had what she later said were Requip withdrawal symptoms. I jerked and writhed for hours. I would consider trying it again sometime, and do it right!

My iron level is around 130. I take one multivitamin with iron per week (the rest of the week, without iron). I'm wary of taking more, as too much iron can cause medical problems.

[Polar Bear]

When you say your iron level is 130, do you know that this is specifically your ferritin level.

With regard to the drug Sinemet, was your doctor changing you from requip to Sinemet, i.e. to take Sinemet every night. This is not a drug to be taking regularly. It has a very very very high rate of causing augmentation (worse rls) and should only be taken now and again. I think I heard it should only be taken about twice a week,

[Dr. Grammy]

My ferritin level was 131. I was supposed to take the Sinemet regularly, switching to it from Requip. Perhaps it's a good thing I didn't, if it is likely to cause augmentation.

TSH is my current concern. It was 5.04, where normal is said to be .45 to 3.98. Though this seems a small elevation, I've read studies that suggest "normal" was originally set with a study group that (unwittingly) included some people with hypothyroidism, artificially elevating the wnl range.

I'm planning to ask my PCP if she'd consider giving me a trial on Synthroid.

[Polar Bear]

Your ferritin level of 131 is excellent. I thought I was doing well at 90.

Sorry I can't help with your questions on thyroid.
All I know is that a high TSH reading means thyroid isn't working ok, but I think a high reading can also be exacerbated by stress or acute illness.

[Neco]

I tried Sinemet but misunderstood the neurologist's instructions--forgot to overlap it with the Requip, d/c'd the Requip instead that night, and had what she later said were Requip withdrawal symptoms. I jerked and writhed for hours. I would consider trying it again sometime, and do it right!

Was this involuntary, or were you compelled to do it?


I don't know much about Requip withdrawal symptoms, but that almost sounds like severe Augmentation, which would be understandable.

Sinemet is a horrible, HORRIBLE medication for daily RLS, and 75% + of patients who take it augment on it (symptoms become severely worse).


If the Requip and/or other medications are not controlling it, and/or you cannot tolerate those side effects, have you discussed opiates with your doctor? They are effective for people in 99% of cases and are a completely legitimate treatment.

[Dr. Grammy]

"Was this involuntary, or were you compelled to do it?"

Hmmm. Did you mean to write "voluntary" instead of "involuntary"? Involuntary = compelled, I think. Not sure what you're getting at, anyhow.

It wasn't like a seizure, which would be described as involuntary. I simply couldn't stop writhing.

Well, in a sense I suppose I could have... I generally have a choice once the symptoms start: I can either try to ignore them (not move) and have a major myoclonic jerk about every 10-15 seconds, or I can move rhythmically and ward off the jerk.

When it's really bad, like during a long car ride, once the jerking starts I fend off the next jerks by banging my knees together steadily. That might work for half an hour to an hour, while I'm waiting for the meds to kick in. If it doesn't work well, pretty soon I'm banging my arms/hands rhythmically, too. When it's really bad, after a while I'm also banging my head against the back of the seat and seat rest. A sight to behold! I ought to keep some wild music in the CD player, so passers-by will assume I'm just REALLY getting into the music.

Most of the time it's nowhere near that bad. But generally, these days, I'm either feeling the start of symptoms or feeling quite medicated--dizzy, a bit nauseous, groggy. I get 2 to 4 hours per day of feeling normal.

I've now heard & read enough about Sinemet to decide not to try it again.

It does seem that I might be getting augmentation with Requip, as I've had to take it more and more often. These days, I take .5 mg every 4 hours during the day, then 2mg at night (which gets me 4 to 5 hours sleep). I'm lucky to have a job that lets me steal a nap most mornings (locking door, cozy couch, no problems as long as I get my work done).

Yes, I'm considering opioids, but I expect to have to show a track record of trying other meds first. And I'm wary, since they can have side effects too, including grogginess and tolerance.

[Neco]

What you're describing does sound like augmentation - especially if your symptoms started coming sooner and were more intense than they were before.

As for involuntary vs compelled: They aren't the same, not really. When you are compelled to do something you are making a conscious choice due to some kind of logic, but it is somewhat against your will, you'd rather not have to do it.

When something is involuntary it automatically happens, and bypasses the thought process completely. Almost like a reflex... i.e your Myoclonic jerk. I actually get something similar, I think as a side effect from Methadone, where I get involuntary spasms/jerks.

RLS/EKD literature describes part of RLS as "a compelling urge to move", which is what you described above also and what I meant by being compelled to do something.

Hope that clears it up a little... I'm an English nerd, of sorts.



According to Mayo, failing both Sinemet and Requip should be enough criteria to move onto opiod therapy.

At least that's my view, I guess. Logically you could try Mirapex next, and IMHO after failing both Requip & Mirapex, it would be stupid for any doctor to prolong the suffering by continuing to withhold opiates.

But then again, those of us who are on opiates are on them because everything else failed, and some of us live in constant fear of losing access to them for varying reasons, so we tend to viciously defend them.

If you can stomach more trial and error, then I would try Mirapex next. But it is a good idea to get your doctor on board and get some of verbal or written agreeement, that you will try X Y and Z, and if that fails then they will try opiates..

Either way some doctors are nuts. Some flat out won't prescribe for anyone, unless they are dying or something, and others will flip out and go all "you're drug seeking".

So bring it up gently, unless you know your doctor will give you a fair shake. Better to find out now, then when you have exhausted all measures and badly need something that works, in case you have to try elsewhere.

[Dr. Grammy]

Thank you--I will definitely consider opioids. I'm relatively new to this neurologist, and suspect she will want me to give Sinemet and probably something else a try before considering opioids. We'll see. Doing her bidding for a few months is part of gaining her trust and goodwill.

In the meantime, I should be getting some Synthroid in the mail in a week or two, and have some hope that it might help...

I'm very grateful for your suggestions.

[Neco]

I strongly urge you to refuse Sinemet at every turn. Please, do not take this medication.


I don't think it is even recommend for RLS anymore by ANY authority figures and its use is actually discouraged.

75% or greater is an abysmal failure rate for any medication. Prescribing it for daily use is almost askin to medical malpractice imho as you are condemning a patient to hours of torture, and most people will not realize the medication is the problem until they figure it out themselves or are told.

I was caught in a vicious cycle the first time I tried it. I would take some, and it would work for a while, then all of a sudden my symptoms would be back, be worse, and I could need to repeatedly increase my dose just to get a few hours of respite.


I really urge you to look for medical literature that discourages the use of Sinemet, and give it to this neuro. If giving it to people with daily RLS or RLS more than 1 or 2 times a week is her standard practice, she is doing something wrong.

[Neco]

IF you haven't seen the Mayo Algorithm yet, click the link in my signature.


Also just some quick points, from the algorithm

3. A patient with RLS taking 2 tablets of carbidopa/
levodopa (25 mg/100 mg) before bed has worsening
RLS during the afternoon and evening. Which one
of the following is the most optimal strategy?
a. Add another dose of carbidopa/levodopa at 3 PM
b. Change the timing of the same dose of carbidopa/
levodopa to 3 PM
c. Continue carbidopa/levodopa before bed but add a
dose of pramipexole or ropinirole at 3 PM
d. Continue carbidopa/levodopa before bed but add a
dose of gabapentin at 3 PM
e. Discontinue carbidopa/levodopa and substitute a
dose of pramipexole or ropinirole 2 hours before
bed

The correct answer listed in the document is e (Sinemet = carbidopa/levodopa)

[Dr. Grammy]

Thanks--I know it's not a good med. But if it winds up being a hoop I have to jump through, I'll give it a try, and as soon as the 1st side effect emerges I'll call the neurologist, explain what's happening, and tell her I'm discontinuing it. The first time I tried it, I didn't take it as directed. If I'm required to take it again, I'll take it as directed, and if it fails (even after a couple of days), that should count as one step on my way toward other meds that might work better.

I work in a health-related profession (not a physician) and have a fair idea what the hoops consist of and how to negotiate them. (We'll see if I'm right!)

You're very kind to be so concerned. I know I may well have to face more pain and discomfort. I keep trusting that within a few months I will find meds that really help.

[Polar Bear]

Do you think she would be amenable to reading a copy of the Mayo Clinic Algorithm. Show her highlighted material confirming that Sinemet should not be used on a regular basis.

[Neco]

Yes, please print out a copy of the Algorithm and take it to your next appointment, or better yet, call and ask if she'll accept a copy to read, and then quiz her on it the next time you come in to discuss your treatment.


I don't mean to sound badgering, but so many of us have suffered so much because of ill-informed, or outright malicious doctoring of this nature. We take each persons suffering very personally, because we know what they have been through.