New to site. RLS since childhood. Diagnosed 1993

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Bedbboc
Posts: 19
Joined: Sat Jun 20, 2020 5:53 am

New to site. RLS since childhood. Diagnosed 1993

Post by Bedbboc »

Hello,
I really wish I had known about this site sooner. Thank you all for being here.

I remember restless legs from very early childhood, maybe eight years old. It might have been earlier I thought it was normal, my mother had it. In 1993; I was 40 years old, a co worker told me about sleep disorders. I made an appointment, had a sleep study, was diagnosed with RLS. I was told I repeatedly came to almost total wakefulness every 12 seconds during study.

I have been taking carba leva dopa aNd mirapex that exceeds recommended dose for 27 years. I take a week to two weeks off every 3-5 years with no other meds and afterwards the medications work ( minimally) for a few years. I have been receiving iron infusions twice a year for 5-7 years. The iron helps and without it I am low ferritin and anemic.

Since December 2019, I have been getting significantly worse. Nothing helps for long. I have been afraid of opiate treatment but I began taking methadone two days ago after stopping mirapex and sinamet without titration, per my RLS specialist. He is rude and insulting. My neurologist is great but makes referral to RLS Specialist once every 5 years or so. I have been seeing the same neurologist for 17 years.

Methadone, 5 mg tabs, I or I.5 per day is Helping but not enough.

This is the initial dose and can be adjusted.

I’m concerned about tolerance, stigma and ability to continue use of methadone as it is so regulated. I fear the use of controlled substance will cause problems for me due to over concern of Med community.

I have zero drug abuse history and often reject offers of pain relief when offered as drugs frighten me. Drug addicts in my family.

Will they get me stable and then decide to stop? Will my chart suggest that I’m an addict on methadone to someone not aware of RLS?

Thanks again

Rustsmith
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Re: New to site. RLS since childhood. Diagnosed 1993

Post by Rustsmith »

Welcome Bedbboc. Glad that you found us but I am so sorry that you needed to.

You will find that many of us rely upon opioids for the control of our RLS. Once you have augmented on one or more dopamine agonists, you are pretty much limited to using them. This is why the RLS Foundation is putting so much effort into political advocacy. The advocacy efforts are attempting to educate our legislators and the government regulators (like the FDA and CDC) of how much we are dependent upon opioids for any level of quality of life. It was shocking how little any of them knew about how much we need access, especially when people like the head of the CDC were totally ignorant of this. Fortunately, the advocacy effort is making progress, but still has a long ways to go. The red tape involved with getting opioid prescriptions isn't quite as bad as it was a couple of years ago (e.g., no requirement for paper prescriptions any more), but it is still very difficult if your doctor or pharmacy doesn't understand. The stigma is still there, but all we can do is try to educate the medical community one person at a time (and move on from the ones who are not willing to learn). If you go to the RLS Foundation website www.rls.org and click on the Advocacy tab, you can get an idea of what you can do to become involved.

As for opioid tolerance, it is not something that occurs very frequently with RLS. It does happen, but there are people in this group who have been taking the same low dose of opioid for decades. Rather than tolerance, the bigger concern for some of us are the variety of side effects that can occur with long term use. Fortunately, if tolerance does become an issue for you, taking an opioid vacation to reset your tolerance is not a major problem. Yes, opioid withdrawal is not pleasant, but it is not as bad as dopamine withdrawal. I have gone through opioid withdrawal two times. Both times, the withdrawal was not as bad has having to put up with untreated RLS during the time before I could get started again.

As for your question about getting your stable and then deciding to stop. A decision to stop is not something that would be made just because the "got you stable". Once we start on opioids, it is pretty much a life-long treatment just as treatments for diabetes with insulin or a blood thinner following a cardiac event or stroke. That does not mean that at some point your doctor may not get cold feet and decide that (s)he doesn't want to write opioid scripts for you, but that decision is not one that would be made for your medical benefit, it would be because of some sort of issue within the doctor's practice.

Since you are new to opioids and the board, there is a paper that you should read. The title is "The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome". It was co-authored by many of the leading US experts on RLS and was published by the Mayo Clinic. If you do a search on the title, you should be able to find free access to it. Although it was written for doctors (and may be something that you will eventually want to share with a doctor or pharmacist), most of it is also pretty easy to understand by those of us who do not have a background in the field of medicine.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Bedbboc
Posts: 19
Joined: Sat Jun 20, 2020 5:53 am

Re: New to site. RLS since childhood. Diagnosed 1993

Post by Bedbboc »

Thank you Steve
I guess my concern is related to lack of trust in my doctor. I will work on that.

Thanks for this insight.

I read the Mayo Clinic article. Amazing, I have a learning curve ahead.

I’m on day three of 7.5 mg of methadone and I’m sleeping, really sleeping, I cannot remember feeling better.

I’m grateful.
Thanks again to all.

Bedbboc
Posts: 19
Joined: Sat Jun 20, 2020 5:53 am

Re: New to site. RLS since childhood. Diagnosed 1993

Post by Bedbboc »

I am feeling really sleepy. This is day four on 5-7.5 mg methadone. Will the tired feeling go away with time?

Rustsmith
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Re: New to site. RLS since childhood. Diagnosed 1993

Post by Rustsmith »

That is something that I will have to let others answer. I experience opioid-induced insomnia with any opioid. I know that there are some side effects that go away after a few days. Of course, it could also be that with your RLS being adequately treated, that your body is simply trying to catch up on all those hours of sleep that you missed over the years.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: New to site. RLS since childhood. Diagnosed 1993

Post by ViewsAskew »

Bedbboc wrote:
Sun Jun 21, 2020 8:28 pm
I am feeling really sleepy. This is day four on 5-7.5 mg methadone. Will the tired feeling go away with time?
I'd cut it back and try for a dose that "just barely" covers your symptoms - this helps in two ways. I've found (been taking methadone since 2005) that when I take less, I have less daytime sleepiness. Additionally, I could tolerance is helped by keeping your dose low. While most of us don't have tolerance,I am one who has had issues. I have done a lot to reduce my dose - from iron infusions to taking the dreaded pramipexole (which started the whole merry-go-round).

See what happens if you take 2.5 mg one day, and 5 mg the next, for example. Or try 2.5 mg a bit earlier in the day, then 2.5 about an hour before bed and see if that works.

As Steve noted, some of us have insomnia with opioids. I have that, too. I initially feel a bit sleepy after taking them, but at some point, I really wake up. That lasts - for me - until I hit about the 5-6 hour mark. Then I get sleepy again. I really had to try lots of things to get the timing right to avoid the insomnia at night, and the sleepiness in the daytime.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Bedbboc
Posts: 19
Joined: Sat Jun 20, 2020 5:53 am

Re: New to site. RLS since childhood. Diagnosed 1993

Post by Bedbboc »

Thank you. I an considering the possibility that I am sleeping to make up for years of sleep loss.

The suggestion that I reduce to the lowest dose that helps is what I did. I cutback tonight from I/2 tab afternoon and one tab in the evening- to I/2 afternoon and 1/2 evening or bedtime. Totaling 5 mg instead of 7.5 mg . I will see if this helps.

I’m a bit distressed over what I’m learning about mirapex and sinamet. I speak to my doctor tomorrow.
Thanks again.

ViewsAskew
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Re: New to site. RLS since childhood. Diagnosed 1993

Post by ViewsAskew »

Bedbboc wrote:
Mon Jun 22, 2020 6:01 am
Thank you. I an considering the possibility that I am sleeping to make up for years of sleep loss.

The suggestion that I reduce to the lowest dose that helps is what I did. I cutback tonight from I/2 tab afternoon and one tab in the evening- to I/2 afternoon and 1/2 evening or bedtime. Totaling 5 mg instead of 7.5 mg . I will see if this helps.

I’m a bit distressed over what I’m learning about mirapex and sinamet. I speak to my doctor tomorrow.
Thanks again.
How did it go?

I LOVED the sleep initially. Like you, I figured I was making up for it. A few months in, though, I was ready to be more awake when I woke up as well as sleep fewer hours. I have always struggled with sleepiness during the day and wakefulness at night. Not sure how much the drug accentuates that, but my gut feeling is that it does to some extent.

Pramipexole must be used carefully - after severe augmentation, I do use it. I initially said I never would. But, for me at least, I find that it is the single best solution short of not having any symptoms at all. Together - and used very specifically - with the methadone. I am closer to "normal" than I have been in many, many years. Too many doctors do not realize that Sinemet should never be used daily for RLS/WED, and that other dopamine agonists should never be used regularly when serum ferritin is low, and it must have regular drug holidays when it is used. The problem is that we have no idea how frequently for each person that they should occur, nor how high serum ferritin should be, making it something that should be used much less casually than it is. (My opinion, of course!)
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Bedbboc
Posts: 19
Joined: Sat Jun 20, 2020 5:53 am

Re: New to site. RLS since childhood. Diagnosed 1993

Post by Bedbboc »

I used just 2.5 in afternoon and 2.5 at bedtime yesterday. I woke up with leg movements 3 x but the restless legs did not persist after getting out of bed. I was able to go back to sleep within 30 minutes. Usually once I awaken or am awakened by RLS symptoms I am up all night. The symptoms do not go away. Since starting methadone the symptoms last only a short time.
This is a lot easier to deal with.
Thank you for asking

ViewsAskew
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Re: New to site. RLS since childhood. Diagnosed 1993

Post by ViewsAskew »

You might find that changing the timing also helps. I originally took it at one time. Then I split it into 2, then 3 doses. I now either take 100% in one dose at 5:30 PM (for a planned midnight bed time), OR, take 80% at 5:30 and 20% at 10 PM, depending on whether I am taking any pramipexole. I found that splitting it was helpful initially, but as the symptoms have decreased (there were 24/7 initially after augmenting) throughout the day, that I can take most or all at one time.

And, you might find that in about 2 weeks, you need less - that is because of the long half life.

Let us know how it goes.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Bedbboc
Posts: 19
Joined: Sat Jun 20, 2020 5:53 am

Re: New to site. RLS since childhood. Diagnosed 1993

Post by Bedbboc »

View Askew and All
I got my best nights sleep last night in a long time. Nice dreams.

I stayed with half a 5 mg tab afternoon and half at bedtime, total of 5 mg of methadone. I slept from 8:30 pm until 11:30 pm. I was awakened by leg movements that persisted for about 5-10 minutes after I got up. I did NOT drink coffee. Coffee has been the only way to stop leg movements for 30 years. I returned to bed at midnight and slept until 7:30 am. More sleep at night and I’m less groggy today.

Thanks for pointing out that the long half life will assist in keeping the amount I need lower. Perhaps I will need even less methadone over time?

The doctor ordered enough methadone for 5 and a half more doses. I left him a message and have not received a response, I’m sure he will get back by next Monday.

Thanks again to all. I’m journaling specific details on paper and in combination with this I will have the information I need going forward. It really helps me to feel less alone in this. I have been alone with this for 30 years and again, I’m glad to have found the site.

Bedbboc
Posts: 19
Joined: Sat Jun 20, 2020 5:53 am

Re: New to site. RLS since childhood. Diagnosed 1993

Post by Bedbboc »

Has anyone experienced a reduction in appetite while taking methadone? My appetite is much lower. It might be due to compulsive eating related to dopamine side effects no longer being an issue. I took mirapex and sinemet for almost thirty years and I did not realize that I was experiencing compulsive behavior related to those medications, if I was. I think I assumed that I gained weight because I got older but my appetite now is similar to my normal appetite before I began treatment thirty years ago.

Polar Bear
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Re: New to site. RLS since childhood. Diagnosed 1993

Post by Polar Bear »

Yes since coming off ropinerole I find I don't eat so much when awake at night. It used to be ridiculous what i could get through during this time. I am still awake at night but not feeling the same need.
Also during the day I'm not grazing the same between meals.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: New to site. RLS since childhood. Diagnosed 1993

Post by ViewsAskew »

I absolutely eat when my symptoms are not controlled. LIKE A LOT! And, pramipexole? Heavens did it make me want to eat. Like waking up in the night and finding myself at the refrigerator, even though I wasn't hungry. Between the two, eating was a huge issue and contributed to a lot of weight gain.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Bedbboc
Posts: 19
Joined: Sat Jun 20, 2020 5:53 am

Re: New to site. RLS since childhood. Diagnosed 1993

Post by Bedbboc »

View Askew
Please help. I have sent and saved to draft a PM to you twice, it was long and involved and now lost, is there a way to retrieve? If not how do I get a message to you.

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