1st post after 24 years of RLS

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Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Ok well

I clearly put a pretty negative spin on today

Cant blame the new guy cause hes got nothing to go on yet
I gave him my sleep logs but he needs a bit of time to process the data

We literally spent half the appointment contacting my old (but still technically my current) specialist for my file

Did I really want to be prescribed a strong opioid today ?

Maybe I should give a bit of Lyrica a try .
.... I really dont know about a closely monitored patch

Perhaps this is the moment I seize and try to fix a handful of natural problems

My circadian rhythm disorder

My diet
My diet in respect to inflammation

... and also find a different time of day to take my one and only medication I am truly dependent on (clonazepam) so I can attempt to sleep in a bigger single chunk

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

Icantsleep, people DO care, even the doctors care, but this is a very hard disease to treat, and it requires a lot of experience which they probably don't have.
Arrg I just hit refresh on my browser instead of submitting a reply
Lost a whole bunch of thoughts
It's not just you. we all do that. I've gotten so that I write replies in a text editor and copy them to the discussion board when I'm ready.
So the reason I had no RLS for a couple nights is because the disease was anticipating me having later bed times
...
.... then I cant drag myself out of bed ... and then the cycle continues
Yup. I hate this disease.

I agree with Steve, you most likely are going to need a strong opioid (low dose), and should stay away from all dopamine agonists. But - and this really sucks - since your doc is new at this, you might have to be a guinea pig for him, and try the Lyrica and Neupro. If you do that tho, don't waste any time - tell him it's not working as soon as you're sure.

Maybe suggest to him - if you can't get a stronger opioid - that you try a combo of the Lyrica and the Neupro.That way you can keep the dose of each lower than otherwise - reducing the liklihood of augmentation on the Neupro and whatever side effects on the Lyrica. I'd be very careful of the Neupro, tho. Unfortunately with your CRD it might be hard to tell if symptoms are starting earlier in the day, so you;d have to be very alert to any possible changes.

Re diet, pick something and start with it. Drop sugar and fast carbs. Or drop hyper-palatable highly processed foods. Or drop gluten. Or add dark leafy greens and colored vegetables - lots. Something will help. Are you taking vitamin D? It's the one thing besides iron that there;s some evidence to support taking.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Re: 1st post after 24 years of RLS

Post by Polar Bear »

Icantsleep - right now you sound in a total spin.
I hope you take this in the spirit in which it is intended - but I wonder in your desperation for sleep, are you bouncing from med to med, from dosage to dosage, and ending up running around in a circle, knowing exactly what you are doing and yet not knowing what to do.

It certainly hasn't helped that you saw a neurologist who doesn't have the knowledge to prescribe and monitor opioids - that kind of baffles me !!

I canot recall if there is a reason why you are not using your Codeine regularly as part of a treatment. I think there is but it escapes me. Just haven't time to read back at the moment.
At present you are sometimes taking a Codeine 15mg.... that amount is so little, here in the UK I can buy a med over the counter and take two pills to get 16mg.
I would suggest if you are going to try Codeine then try it properly. Or settle of one of your other medications and use it as a med at a proper dose for rls instead of dipping in and out. Try for a given number of days. (Yes I know you may have reasons not to do so that I can't recall).

I may be well wrong here but it sounds like you are frantically trying everything and yet nothing is getting time to prove itself. Sometimes side effects can't be tolerated from the off, and sometimes it's possible to work through them.

Just my thoughts. We all get to feel really desperate and at times I've been known to hardly know what I've taken with an extra this and that.
And yes indeed, I've lost many's a long post when I hit the wrong key.
Also, I've logged on of a morning and found a post that I did during the night..... with no recollection of it at all.

We all care about each other.

And Badnights post is so informative, as always.

Again, sorry if I'm repeating myself or contradicting information that you have already provided.
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

Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

I take vitamin D 3000iu almost daily

I am trying to make the transition from tramadol to codeine.... slowly

I tried a straight swap of merely 25mg/50mg/25mg tramadol to 7.5/15/15/22.5 codeine but the rebound from lack of tramadol was like mirapex withdrawal

I'm aware the codeine dose was a bit low , but this was the first time in my life taking that much .

I'm on night 3 of 15mg codeine early evening/ 50mg tramadol late bedtime/ 0.75mg clonazepam early morning/ 15mg codeine late morning.
Adding the late morning dose has helped the most (because my RLS follows my CRD , even if I fight the CRD otherwise)

I plan to reduce the 50mg tramadol to about 37.5 mg and see how that goes
Getting it to 25mg doesnt seem realistic , but maybe.

I think I'd soon try swapping to a 30mg codeine dose
15/30/clonazepam0.75/15 (60mg codeine nightly)

I gotta add that for the first time in months my bowels are much happier
I'd stay on tramadol if it didn't wildly speed up my digestion
The current combination I have going is pretty ideal in terms of BM speed and frequency (near normal)

I'm kinda concerned how constipated I'll get strictly on codeine
I've combed through a few remedies

Let me get completely on codeine first , but I'd like to be able to try something like Wahls , where Beth had so much success , while remaining regular like Betty (especially considering her high daily codeine dose)

Edit ---
What drawbacks, if any , would there be to having a codeine/tramadol/clonazepam/codeine regime ?
(And THC)
I know taking both (or all 4) can amplify sedation and slow breathing
.... is it imperative that I only take 1 of tramadol and codeine ??

Icantsleep
Posts: 216
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

A couple nights ago I did codeine 15mg/tramadol25mg/clonazepam 0.75mg/codeine 15mg to bring tramadol down even further

I did not really sleep because my rls wasnt covered

Last night I made the switch to codeine 15mg/ codeine 22.5mg/clonazepam 0.75mg/codeine 22.5mg

I did not fall asleep until 1pm this afternoon because of rls rebound , which was very intense

HUGE PROBLEM was that I woke up an hour later at 2pm because if felt like i had swallowed my tongue in my sleep
Whatever it was , I experienced respiratory depression (or even respiratory arrest) likely from the clonazepam/codeine combination

It was terrifying

I take tramadol, it gives me the unbearable shits

I take codeine, I nearly die in my sleep (?)

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

Icantsleep, have you tried raising the head of your bed? (You can simulate the effect with pillows but that can screw up your back.) I have wierd parasomnias that don't happen when my upper body is elevated a bit during sleep. If I sleep flat, I sometimes wake up choking, which is I think is because my swallow mechanism is not triggered properly and saliva goes into my trachea; or I might have nightmares, sometimes with paralysis that stays beyond the normal time (for a while after I wake up); or hypnic jerks. Not only do these not bother me when the head is elevated but the WED/RLS sensations don't come as easily.

It might be worth a try. I put the head-end feet of my bed frame on two stacked pieces of 2x6 plus I stuck some old pillows between the top mattress and the box mattress. It might help the breathing thing.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Icantsleep
Posts: 216
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

badnights wrote:Icantsleep, have you tried raising the head of your bed? (You can simulate the effect with pillows but that can screw up your back.) I have wierd parasomnias that don't happen when my upper body is elevated a bit during sleep. If I sleep flat, I sometimes wake up choking, which is I think is because my swallow mechanism is not triggered properly and saliva goes into my trachea; or I might have nightmares, sometimes with paralysis that stays beyond the normal time (for a while after I wake up); or hypnic jerks. Not only do these not bother me when the head is elevated but the WED/RLS sensations don't come as easily.

It might be worth a try. I put the head-end feet of my bed frame on two stacked pieces of 2x6 plus I stuck some old pillows between the top mattress and the box mattress. It might help the breathing thing.
5 years ago I had SEVERE dyspepsia / GERD .

I've had the head of my bed raised 6 inches ever since

Definitely helps me breathe better
(I've also been hooked on breathe right strips for a good 6-7 years since it was determined I had enlarged and often swollen turbinates )

I do have upper airway resistance syndrome, although it hasn't been an issue much (until above incident ?)
I've enlisted the help of a cool mist vaporizer to help keep air in my room moist
I believe my incident was compounded by the fact I was so strained by the tramadol rebound and increased THC consumption , along with the codeine increase.

I hate waking up feeling like I havent been breathing .
Clearly you can relate .
..... dont think I've been paralyzed, but I do kind of understand how that can be VERY scary

Perhaps switching to neupro and getting off weak opiates and even medical marijuana (and figuring out my clonazepam situation) will help

I wouldn't mind your 2 cents over on my new augmentation post btw
(Although you did say to stay sway from DAs )
Sigh ........

Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Update

New neurologist is not comfortable proceeding
Knows i may augment on patch , then what ?
Apparently everyone at the elite neurology clinic in Ottawa is in over their heads when it comes to my case .
No one wants to be responsible for me

I will be referred to the Ottawa hospital, but apparently they have the same stance

I have been informed I still need to go back and see old sleep specialist of 14 years who did not want to help me after prescribing augmentation dose of mirapex .
.... because I am still his patient .

" just get more sleep " was what he told me as I was suffering rebound rls from mirapex withdrawal and the tramadol that my GP prescribed me was making me very sick
Tramadol was prescribed when Mr. Specialist was nowhere to be found

So now I need a note from my GP to give to specialist stating he will not prescribe meds even before specialist will talk to me
At least that's what he said 3-4 months ago

I have suffered needlessly for months because of this guy , and now I need to go back to him .....

QyX

Re: 1st post after 24 years of RLS

Post by QyX »

Well, one of those doctors needs to grow a pair and prescribe a potent opioid like Oxycodone.

For Oxycodone, there is a big study with RLS patients and in some countries it is officially approved for RLS.

So there is a lot of literature for RLS and opioids and especially for Oxycodone and RLS.

I would search those studies and guidelines and show them to your doctors.

Obviously, they can't put you on dopamine agonists again.

Rustsmith
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Re: 1st post after 24 years of RLS

Post by Rustsmith »

This paper was written specifically for your situation. Even if the doctor does not recognize any of the authors (they are among the leading RLS experts in the world) I still should carry a bit more weight than usual because it was published in the Mayo Clinic Proceedings.

FYI, the refractory RLS described in the paper is RLS that no longer responds to DAs and is too severe for gabapentin/Horizant.

You should print out a copy of the paper and give it to all of the doctors that you mentioned. If for no other reason than to educate them. As warning, you could run up against some sort of anti-opioid clinic policy (I did). If so, start looking for a new doctor someplace else.

https://www.mayoclinicproceedings.org/a ... X/fulltext
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.

Icantsleep
Posts: 216
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Alright so ....

I went back to see original sleep specialist with my wife .

He had a completely different attitude than 3 months ago
No need for a letter from my GP
No "just get more sleep " and blaming my RLS on poor sleep hygiene

Other than a strong opioid of course

... he did bring up methadone , but explained he no longer had his license to prescribe it .
He was supposed to begin a collaboration with my neurologist yesterday regarding all options
.... obviously he did not adhere to their planned phone appointment, and hes gone on vacation now for weeks

1st thing we were going to try was neupro 1mg OR mirapex 0.0625mg with frequent holidays

I do have plenty of brand name mirapex
I do not have any neupro patch

Sleep specialist wanted to leave neupro Rx to the neurologist
Neurologist wanted to talk to sleep specialist (he has been trying) before prescribing anything to avoid multiple prescriptions and plans
.... (I just got off the phone with him )


So we still have .... 15mg codeine/ sativa evening
50mg tramadol/ indica at bedtime
0.75mg clonazepam/indica upon waking up
Indica / possible hint of more tramadol if I wake again (I did this last night and it helped)

I am finally adjusting to tramadol adverse effects, although I'm hesitant to go full on tramadol (believe it or not, 15mg codeine with the sativa is currently enough coverage until bedtime PLUS I actually like how it slows down my bowels )

Badnights had suggested taking some or all of the clonazepam earlier (closer to the same time as the tramadol)

For at least the next 3-4 weeks , I'm to take 0.0625mg mirapex an hour or so before the tramadol once every day or two or three etc ....

I should add I do not have constant refractory RLS
I do however get moderate rls EVERY night with my current regime (especially overnight)


Thoughts ?????

Rustsmith
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Re: 1st post after 24 years of RLS

Post by Rustsmith »

Icantsleep, I just started clonazepam at the start of the week. You might see if you can get the "ODT" version of the drug. This is a quick dissolving wafer that you put on your tongue and it dissolves in just seconds. You don't swallow, it is adsorbed through the walls of your mouth and tongue. I learned the first night that you need to be in bed and ready to go to sleep when you take it, because the effect is almost immediate. And it even has a nice minty flavor.
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.

Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Rustsmith wrote:Icantsleep, I just started clonazepam at the start of the week. You might see if you can get the "ODT" version of the drug. This is a quick dissolving wafer that you put on your tongue and it dissolves in just seconds. You don't swallow, it is adsorbed through the walls of your mouth and tongue. I learned the first night that you need to be in bed and ready to go to sleep when you take it, because the effect is almost immediate. And it even has a nice minty flavor.
I might look into this further

.75mg is a tough dose in that I need to cut away .25mg of the 1mg or take 2×.5mg while cutting one of those in half ....

I'm not even sure this variety is available in Canada

Ideally I'd like to get my dose down to .5mg over time .
I wouldn't want to be any more suddenly sedated than I was last night
... the plus side would be that it doesn't last as long, and into the next morning

Perhaps this would be an easier form of the drug to taper down (?)

Thanks for bringing this to my attention

Btw ... I did take 0.0625mg mirapex last night about 90 minutes before anticipated bedtime and I took about 33% less tramadol
I tried to go to sleep before the tramadol kicked in , so I did have moderate rls for about an hour , but after that I slept rls free for 90 minutes
Then I took my clonazepam and a tiny bit of vaporized high thc indica, and I fell asleep for another 4.5 hours rls free (and I had a dream or two )

Felt tired and a bit drugged until noon but nothing odd or adverse happened
Still uncertain what I'm going to reduce tonight in terms of the small dose codeine , giving mirapex a one night break , or reducing tramadol a bit more
.... or splitting the clonazepam dose

Or doing the exact same thing I did last night (?&#$&*?)

Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

So

I'm at about day 10 of resuming mirapex AFTER I augmented and withdrew from it 3 months ago

I've got it down to :

Codeine 7.5mg 430pm
2 draws strong sativa 730pm
Mirapex 0.0625mg 9pm
Tramadol 25mg 930pm (THIS GIVES ME PROBLEMS)
Clonazepam 0.375mg 10pm
3 draws strong indica 1005pm
Attempt sleep 1015-1030pm

Then clonazepam 0.375mg and 2 more draws indica when I wake up around 3am to get back to sleep .
... perhaps even more indica or thc gel cap .
I can use very strong CBD oil as well .

I do get a little bit of mild to moderate rls somewhere ... usually after 1030 if I cant sleep at all, or 2-3am where it wakes me up .
I can live with that

My biggest issue is the tramadol , even at a mere 25mg.
I literally went back to MIRAPEX of all things so I could reduce the tramadol.

I take it with a sludge of oatmeal to coat my stomach .
If I take it any other way , it just causes mayhem in my midsection
... not just my bowels , but essentially all my muscles and body parts in the area .

I took an extra tiny 12.5mg about 330am a couple nights ago with a few crackers and water .
I slept awesome for 3.5 hours afterwards
Woke up feeling great
Went over to the bathroom ... and wow

I still feel it right now
... all through my midsection
So awkward and uncomfortable

I've tried to switch to codeine but it didnt cover my rls, and even worse, with apparent upper airway resistance syndrome, in combination with THC , clonazepam , mirapex and exhaustion .... I can STOP BREATHING !

so what the heck do i do ?

Am i likely to have respiratory problems with stronger low dose opioids?
Should I try a CPAP ?

What alternatives do I have regarding tramadol ?

I take imodium once in a while which helps , but I cant take it constantly.

.... maybe I should give gabapentin or lyrica another shot ??

I just want to find a regime I can keep for at least a few months at a time .
I'm getting discouraged that I dont tolerate much , and that I'm running out of options

Rustsmith
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Re: 1st post after 24 years of RLS

Post by Rustsmith »

I also have UARS and have used an auto CPAP for it for years even though my AHI has always been below 10.

However, not that I am on an opioid, my neurologist keeps asking me if I am continuing to use my CPAP and if I am checking the results each day. I reassure her that I do. I don't know how much that factors into her decision, but she has had me on a combination of Tramadol + clonazepam + mirapex gabapentin + THC. She is not only an RLS expert, but she is also a professor of sleep medicine, so I guess that she knows what she is doing since I have been on everything except for the clonazepam for several years now.
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.

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