1st post after 24 years of RLS

[ViewsAskew]

It's sad but there's no way to tell what the side effects will be until you try them. I hope the Neupro is helping and that the Butrans Monday is the beginning of a wonderful new period in your life

It is absolutely UNREAL how well a mere 0.25mg of Neupro patch (one quarter of a 1 mg patch) works to take away my rls symptoms.
I do get very minor "evening " symptoms prior to bedtime if I'm motionless, but both going to sleep AND overnight saw ZERO RLS WHATSOEVER.

This basically never happens

How do I need a strong opioid or even a very invasive spinal stimulator, when the tiniest dose of a drug with no side effects at all provides complete relief ???

So unfair that it won't last

How do I make last ?????

That is true for me with pramipexole. I need a tiny amount of it compared to the opioid dose I need.

[badnights]

So unfair that it won't last

How do I make last ????

1. Keep the dose as low as possible
- by letting a few symptoms still appear
- by adding a low dose of pregabalin or gabapentin, or a very low dose of an opioid

2. Keep your iron stores up.

3. Cultivate a positive outlook. I know it's hard! but I'm convinced it actually helps.

[Icantsleep]

So unfair that it won't last

How do I make last ????

1. Keep the dose as low as possible
- by letting a few symptoms still appear
- by adding a low dose of pregabalin or gabapentin, or a very low dose of an opioid

2. Keep your iron stores up.

3. Cultivate a positive outlook. I know it's hard! but I'm convinced it actually helps.

I've just come off my best 5 weeks since my Mirapex started doing more harm than good... at least 4 years

I had a frantic few days about 6 weeks ago trying to secure my Buprenorphine prescription.
I did in fact get it filled but wound up canceling the order.

The deal breaker was that I couldn't (shouldn't) wear it in the sun / pool
... the pool was basically the only place my 3 year old autistic daughter will look at me , so I needed that connection no matter what .

Having the option of Buprenorphine helped, but one day later , motivated by my desire to share something (anything) with my daughter, MUSIC led me to a breakthrough .

... yup ... music
Or more specifically music I loved in my early teens through early 20s

The phenomena is known as FRISSON ... aka the chills you get from listening to emotion provoking familiar music
I went from having RLS 7-8 times a night to best case scenario NONE AT ALL within 2 days

Unfortunately my supply of this type of music isn't infinite, and my circadian rhythm disorder has just recently severely affected my breakthrough... but this whole FRISSION thing needs to be looked into.

Beth I managed to do #1 with codeine and continued to take 0.25mg rotigotine
#2 my iron actually came down from 900 to 635
I am working with a high ferritin clinic and I have an ultrasound next week to examine the inflammation route cause for my rls
( I do definitely have enough iron ... perhaps too much )

#3 is true

Once I made this unexpected progress, I was so motivated to keep it going and my outlook, without trying to jinx the situation, became so much more positive.

As I said , my CRD has thrown me off and I'm now up all night and (not) sleeping all day, but MUSIC/FRISSION was a game changer and let me believe if we work hard/smart enough there is relief out there !!

Music

Try it !

[badnights]

How wonderful! Music is incredible. Music lives in a different part of our brain, and tapping into it can, it seems, actually make changes in our brains. I wanted my dad to get music therapy after his stroke, but I couldn't find anyone nearby who did it.

Re the high ferritin, you may still have insufficient iron in your brain. It sucks that there's no practical way to tell.

Music. Just when you think there's nothing left to try....

[Rustsmith]

One of the things that many of us have used when our RLS is out of control has been "distraction". The usual list includes things like crosswords, Suduko, a very good novel or movie, etc. Something that keeps the brain engaged.

So it sounds like music is able to do this for you. I tried it a long time ago, when I was just starting my severe RLS journey. It didn't do very much for me, but that is probably because music hits a little bit different part of my brain. My mother started me out with piano lessons (she was the teacher) when I was about 6. I never learned piano, but played in band up through my freshman year of college. I am back at it now. The thing is, I see music a little bit differently as a musician. Just as a writer or an editor probably wouldn't get much help from reading a novel, my reaction to music usually doesn't generate the Frisson reaction that you describe, no matter what type of music.

[Icantsleep]

One of the things that many of us have used when our RLS is out of control has been "distraction". The usual list includes things like crosswords, Suduko, a very good novel or movie, etc. Something that keeps the brain engaged.

So it sounds like music is able to do this for you. I tried it a long time ago, when I was just starting my severe RLS journey. It didn't do very much for me, but that is probably because music hits a little bit different part of my brain. My mother started me out with piano lessons (she was the teacher) when I was about 6. I never learned piano, but played in band up through my freshman year of college. I am back at it now. The thing is, I see music a little bit differently as a musician. Just as a writer or an editor probably wouldn't get much help from reading a novel, my reaction to music usually doesn't generate the Frisson reaction that you describe, no matter what type of music.

I wouldn't just chalk this up to distraction

Frisson is a profound physical reaction
I don't get it from doing puzzles etc...
... I suppose it is similar to RLS , where If you don't experience it, you don't really know what it is ..

Anyhow... I did my abdomen ultrasound :

INDICATION: Male, 46 years old. "Suspected hepatic steatosis vs iron overload in patient with elevated ferritin."
TECHNIQUE: Focused study of the hepatobiliary system
COMPARISON: None
--------------
ADDITIONAL HISTORY: None
TECHNICAL NOTE: Abundant intestinal gas.
LIVER: Liver echogenicity may be mildly increased. Multiple cysts are noted up to 14 mm, at least one of which appears to have a septation
GALLBLADDER: Multiple polyps are noted up to 4mm.
INTRAHEPATIC DUCTS: Unremarkable.
COMMON BILE DUCT: Not well seen. Short visualized segment measures 3 mm.
PANCREAS: Not fully visualized.

Next will possibly be a "workup for inflammatory disorders " to potentially find a link to RLS
I wonder if these cysts and polyps are causing inflammation...

Unfortunately I don't follow up until late September to even begin booking tests

On another note I'm still waiting for my first appointment date with Dr. Murray at Sunnybrook in Toronto.
IMO he is the top RLS doctor in Canada who is actively treating refractory/ DA augmentation cases

Edit ... just got an email for a September 8th appointment with Dr. Murray !!

[Polar Bear]

It's wonderful that you have received such an early appointment with Dr Murray. Time will fly.

[Joe A]

First post to board. I live in Toronto/Canada area. My sleep specialist started me on Tramadol 2 months ago after being satisfied i am a candidate with Refractory RLS. it is the only Opioid he will prescribe in his practice. Unfortunately it, along with Gabapentin, does not seem to be giving me adequate/consistent relief. My lack of sleep recently and stress it is causing me is bordering unbearable. I have a telephone consult with the sleep specialist next week, but am afraid he is going to say "nothing more i can do for you". I am seeking any possible name of a Dr. in Toronto area that will prescribe other Opiods to try. Icantsleep mentioned he was referred to a Dr. Murray at Sunnybrook. I would love to hear what this Dr. Murray is offering and if icantsleep's regular doctor made that referral. My regular doctor (not my current RLS Dr.) has referred me to Sunnybrook for other matters.

Joe A

[Icantsleep]

Hi again everyone
Been a while

I wish I could say I've been gone for 6 months because my symptoms disappeared but not quite the case.
Taking care of 2 kids under 6, with one of them having very special needs is so consuming I really don't have time for myself
However ....
The whole music thing (frission, chills etc ) continued to be beneficial .
That said, the chills would happen less and less often , and the benefits were not as profound

I should say that high iron was ruled out as the cause of my RLS
there was some hope that some sort of inflammation was occurring and causing rls but not the case .
I have slight elevated iron in my liver , but this is otherwise unrelated to the RLS itself

Other things contributed to a virtuous circle as well.
Joe I'm so sorry I've been absent all this time ...

Dr Murray , along with my other doctor suggested diprydamole prior to me going on Codeine contin or Buprenorphine OR Spinal implant surgery.
..... diprydamole was super difficult to obtain , so while I waited I continued my Clonazepam reduction.
Then my symptoms really started to go away !
Then I was more active
Swimming, bike rides , even GOLF which I absolutely loved and was so happy I was able to do (I hadn't played in 6 years)
I believe the golf was actually EXTREMELY good for my RLS / dopamine .
I was able to maintain a regular sleep pattern longer (I have a non 24 hour circadian rhythm disorder that has massive negative implications to my sleep and life)

The only medication I changed was going from 0.75mg Clonazepam to less than 0.5mg
October and November 2021 were the best months in easily 5 years (before DA augmentation occurred)

Everything was going smooth ... only getting rls every 3rd night or so
I even made it through kidney stones disrupting my sleep prior to and after American Thanksgiving , the stress of a stock market crash , omicron (I believe I had it for Xmas)

What seemed to throw me off was having my city occupied by freetard truckers which rendered our police force usless (I live in Ottawa)
I felt helplessly held hostage and could not sleep .
.... this led to extreme sleep deprivation and severe RLS .

I had been taking 0.25mg of Neupro patch this ENTIRE time (since the spring of 2021?)
I was surprised I got way way way more time and milage than I thought i would .
With that said, RLS eventually returned in my arms as well .
I just recently stopped my patch and no longer have RLS anywhere but my left leg/hip/trunk 3-6 times nightly.
I've had to increase Codeine, and also eliminated THC oil as it dries me out too much which affects my breathing .

My Rls occurs nightly and especially into late morning in my trunk
Since stopping Neupro patch this happens EXACTLY the same way every sleep
I either need to take a 3rd Codeine dose OR most recently I apply Voltaren liberally to my left trunk area .
VOLTAREN had never worked before on RLS at any point in my body, but now it does .

It is my hope that further reducing Clonazepam will stop my RLS symptoms
I am now taking about 0.18mg nightly
I plan to reduce further.
Any and all drugs like Lyrica or even Magnesium that increase sedation makes my rls worse.
I feel the same thing happens with Clonazepam.

Diprydamole is the contingency plan if this doesn't work (and/or Codeine contin )
My doctors are aware of this plan .

Has anyone had or felt like Clonazepam was doing more harm than good ?

Apologies if this post may have been lengthy and gone on tangents
I'm exhausted abd my RLS had me waking around reluctantly while writing this.

[badnights]

Well there was indeed a lot of good stuff in there, you were doing really well for some time. I am so glad I wasn't in Ottawa for that B.S., it's no wonder the WED/RLS flared back up.

It sounds like you were augmenting, do you think so? If so, it takes time to recover from that. Symptoms will be bad for anywhere from 3 weeks to 6 months. At some point, symptoms go back to "normal" as your body recovers from the effects of augmentation, and then you may find you need less codeine.

I was not on clonazepam long enough to answer your question, but I am sure others will.

Watch not to put more Voltaren than recommended, it's possible to overdose.

[Icantsleep]

I was augmenting (again) for sure , for like the 7th time on a DA .
Symptoms in both legs and both ARMS simultaneously.
.... what puzzles me is why I was able to go so long before this occurred.
I suppose it took a return of "normal" symptoms before the augmentation symptoms presented themselves (?)

Now I'm not sure if I should just try to get back to baseline symptoms by remaining off the patch or to also continue the Clonazepam taper at the same time .

The ultimate goal is to reset the dopaminergic system and to hopefully do this by eliminating both DAs and Clonazepam.
It's a longshot
... but if that doesn't work , plan B won't be very fun

[badnights]

Now I'm not sure if I should just try to get back to baseline symptoms by remaining off the patch or to also continue the Clonazepam taper at the same time .

The ultimate goal is to reset the dopaminergic system and to hopefully do this by eliminating both DAs and Clonazepam.

The dopamine system will not be directly affected by your clonazepam withdrawal. Maybe you're right when you suggest it's too much at once; maybe you should pause the clonazepam taper. Clonazepam is a tricky one and lots of people have immense problems with it. One thing at a time might be better for now.

[Icantsleep]

Alright.... so ....

Once I stopped Neupro patch my symptoms completely left my right side and BOTH my arms .
I then seemed to have increased symptoms in my left trunk
This went away by resting in zero gravity ,which was something the sales guy told me would happen if I bought my tempurpedic smart base bed frame .
I really thought I hit the jackpot.
It really seemed to make my lower back and hips really really happy.
... then the RLS symptoms came back about 10 days later, and are now worse then ever .
I wonder if this has to do with the resumption of my Clonazepam taper
I can't attribute it to anything else .

I'm really not sure where to go next with the Clonazepam taper
Perhaps I'm overall better off without it, but WOW is my RLS ever out of control all night and morning .
It now almost exclusively presents itself in my left trunk area .
I should definitely mention that this seems to happen like clockwork when my Codeine doses run out of steam after 2.5- 4 hours .
I need something that lasts longer than 4 hours, but ideally not 24/7 as my symptoms are only nightly .
REBOUND RLS is BRUTAL , especially when it wakes you up .

Anyway... Clonazepam reduction is not reducing symptoms like it seemed to in the summer and fall of 2021.
I can't keep losing sleep over and over and over night after night .
Today was my 47th birthday, and was also my worst day in a good while .
I've gone back to 0.25mg Clonazepam.
I may have to introduce diprydamole or Codeine contin to avoid the aforementioned rebound rls .
I just can't continue being unable to function day after day .
Perhaps resuming neupro patch on an intermittent basis could be looked into , but it's so hard to commit to having frequent bad nights , especially when my children are so reliant on me .

Hope everyone had a nice Easter

Hang in there if you're struggling
... I know I am

[badnights]

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

[Icantsleep]

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