1st post after 24 years of RLS

[ViewsAskew]

Has your doctor said you could try codeine contin? I wonder if a more potent opioid wouldn't be better, like hydromorph contin?

I've had a filled Rx for a while
I tried it once and it certainly stopped the RLS at the time.
It seemed a bit too heavily sedating and most concerning it lasted about 20 hours ... perhaps I would adjust (?)
I tried many months later cutting a contin tablet in half which had a predictable outcome.
It hit me within 90 seconds very hard and only lasted about 2 hours .
I still may try a full 50mg tablet in the future .
I believe me taking 1/6th the Clonazepam than I did the first time I took it would help.
I also am sure that Codeine Contin would cover me adequately.

Some recent hilights :

Continued to taper Clonazepam to 0.125mg without major problems
.... I'm unsure if this is making my RLS worse (at least in the short term) as opposed to making it better as previously thought .

I finally got a confirmed case of Covid , which actually made my RLS symptoms nearly disappear for a few days, although headaches and congestion wouldn't let me sleep practically at all.
RLS then returned quite severe, and for the first time since quitting Neupro patch many months ago, I now have been gettimg RLS in BOTH ARMS as well as left leg/hip/trunk

My mother who helped out with my kids including the youngest who has ASD can barely walk (or drive to my house) due to a wide array of back problems .
Youngest with Autism is a stressful challenge unless she is sleeping .
My wife now has (likely treatable) cancer , although if she's gone we have no idea who would take care of my young children, bearing in mind I have a non24 hour circadian rhythm disorder on top of my RLS .
I am unable to keep any sort of routine , which I believe makes my RLS worse when I sleep during the day .
(I usually fast forward drastically once I'm going to bed past 6am to try and stay up and sleep at 6pm instead , and then slowly make 10pm or 11pm my bedtime. With that said ... I have zero capability to take care of my children by myself bearing this in mind)

Lots of stress and a lack of time for my own self and sanity are likely driving my RLS among other things .

I'm going to try to completely eliminate Clonazepam, although it may present problems
It has been suggested I try turmeric for potential inflammation etc ...
It's a longshot .
Somehow easing stress would probably help more

Anyhow ... that's some of my news

Just a big, big virtual hug.

[Icantsleep]

So still dragging myself through life
Some days better than others

Still committed to gettimg off of Clonazepam.
Got it down to about 0.07mg nightly.
Decided to switch to a liquid(syrup) form which caused a significant problem when mixed with my Codeine.
For whatever reason I'd feel nothing after taking the Clonazepam liquid, but feel SUPER DRUGGED 1/2 hour after taking 45MG of Codeine .
This happened a couple nights in a row .

... so I went back to solid crumbs of Clonazepam with no problems
I think I will ordering a diamond scale from Amazon to help me weigh the crumbs effectively down to the end of the taper

Biggest withdrawal symptom seems to be SEVERE headache after dealing with stressful life situations.
I'll be fine for days or weeks, but when stress presents itself, I can't seem to handle it.

Clonazepam doesn't prevent my RLS
I was finding I'd walk into rooms and forget why I was there .
.... with reduced Clonazepam use, this has gone away.
Long term Clonazepam use can apparently lead to early onset of dementia ...
But above all, Clonazepam may actual contribute or even cause my RLS
When I feel the effects of withdrawal (headaches etc) I simultaneously experience little to no RLS whatsoever.
My RLS seems to be slightly less severe as a whole as well .

Anyone else come off of Clonazepam and it have positive or negative effects on their RLS or their life in general ???

[badnights]

I never took clonazepam for long, so I don't know what it's like coming off it. I know it's very hard for a lot of people.

Clonazepam doesn't prevent my RLS
I was finding I'd walk into rooms and forget why I was there .
.... with reduced Clonazepam use, this has gone away.

Awesome! I had the same effect from zopiclone, which is not a benzo but still is a hypnotic, and it went away when I stopped the zopiclone.

I found that a sleeping pill would bring on the WED/RLS unless I already had it under control with some other medication when I took the sleeping pill. That happens because the sleeping pill induces relaxation, which is what triggers the symptoms. Evil. It is terrible to have WED/RLS symptoms when you have a sleeping pill in you! You have to walk when your brain is asleep, so you stumble into walls and furniture - - it is a horrid state to be in, moving about in a sleepy nightmare.

I'm glad you're getting off the clonazepam but I'm sad it's so hard!

[Icantsleep]

Well ..... it's sure been a while

Basically what happened is I continued to wean off of Clonazepam while making no other medication change.

MY RLS WAS 98% GONE FOR 3-4 MONTHS .
I thought I had found the source of my rls , and that I was "cured"

I slightly upped my Codeine dose late/November early December when I switched to a syrup.
I tried stopping my 1/4 of 1mg rotigotine patch , but that led to rls symptoms.
I still use 1/8 of 1mg patch nightly
I continue to use cannabis very sparingly and absolutely strictly as medicine.
.... the big change was the Clonazepam, which I have completely eliminated from my life .
I used a jewelry scale and reduced ever so slightly over many many months , and haven't had any in perhaps 2.5 months .

I didn't want to jinx my good fortune so I avoided posting but it RLS did unfortunately come back after many weeks of sleep deprivation due to my whole family gettimg Norovirus in March .

I seemed to get less rls the less Clonazepam I took, and this led to a massive virtuous cycle which saw me enjoying my life much much much more .

As mentioned , huge disruptions to my sleep like recent dental pain and subsequent dental surgery, neck/shoulder nerve pain and the gastro issues are what now fuel my rls
Oh .... and also my non 24 Circadian rhythm disorder when I'm day sleeping, which is now more often a delayed sleep phase CRD .

If I had consistent perfect or near perfect conditions to sleep , I believe I wouldn't have rls symptoms

CLONAZEPAM DID NOTHING TO HELP MY RLS .

While weaning down , any and EVERY night I took a bit more to sleep I would get exponentially worse RLS.
Unfortunately I'm not "cured" , but my life has been significantly better without Clonazepam.

[Polar Bear]

Well done on getting off the clonazepam. Especially as you have been dealing with medical issues. I hope your sleep conditions improve.

[badnights]

Icantsleep your story is such a hopeful one