1st post after 24 years of RLS

[Icantsleep]

It's such an up-and-down disease. How were the last two nights?

Absolutely God awful

I did not get any sleep last night
Was the first night without tramadol

I took codeine 4 times along with kratom once , clonazepam twice and plenty of high THC indica

Rls was the same as first night without mirapex

Also now finally constipated

[Polar Bear]

Sorry to hear this. "Absolutely God awful" just about describes it !!
Do you need to reconsider your Kratom dosage.

I'm sure you're onto the oranges, loads of fluids etc for the constipation.
I have been fortunate never to have suffered with constipation with codeine and I've been on it for years. However, recently I had occasion to be taking well over my usual dosage for several days and indeed it struck with a vengence. On the 5th day I was about to take a laxative when things took care of themselves naturally. It was not a comfortable time!! I'll make sure to be ahead of the symptoms if I'm ever in the same situation again.

[Icantsleep]

So pharmacist suggested to do codeine 15mg evening then 50mg tramadol night then codeine or kratom early morning, with clonazepam and THC somewhere overnight as well
That's what I did last night
I had rls wake me up 4 different times

It was far better than the night before, but at this point I'm just surviving
The seemingly easy attempted transition to codeine has failed for now .

I clearly cant take codeine and tramadol together daily (or can I ? ... it's been stressed to me that I cant )
... I may have to concede and go back to tramadol or tramadol/kratom

I know it was one night but the rebound rls from lack of tramadol was insane
4 doses of codeine did nothing but leave me constipated (one dose of tramadol changed all that )

If I knew I was guaranteed a better quality of life on codeine or codeine ER I'd subject myself to the insanity again

.... problem is I have no such guarantee

I may have to eventually resume low dose mirapex
.... so frustrating

[Bridgercan]

Hey Icantsleep—very sorry to read the hell you’re going through!! Absolutely god awful describes it very clearly & my empathy goes out to you. Just writing to say hang in there, that’s there’s someone out here in RLS land tonight sending good energy your way, and I very much hope your night is a little better than the last two! -bridger

[Icantsleep]

Hey Icantsleep—very sorry to read the hell you’re going through!! Absolutely god awful describes it very clearly & my empathy goes out to you. Just writing to say hang in there, that’s there’s someone out here in RLS land tonight sending good energy your way, and I very much hope your night is a little better than the last two! -bridger

Thanks for that energy

I received it in a calming form
My rls did wake me up 3 times , but was not severe

It appears for the short term that :

15mg codeine 6pm
Vape sativa sparingly 8pm
50mg tramadol 10pm
Vape indica sparingly 1030pm
Bed 11pm
Rls 2am (estimate)
Get up eat tiny meal
Clonazepam 0.75mg 230am
... possible vape indica 245am
Rls rls 530am (estimate)
Kratom 1-2g
Wake 9am (but not get out of bed until 11am )

.... is what I've got right now

It seems I require 10pm 50mg tramadol, and that I absolutely cannot go without my clonazepam at some point
.... otherwise it would be great if i could replace codeine with kratom , and perhaps merge the clonazepam/late kratom dose somehow so I dont wake again, and so I'm not taking something to get me back to sleep as late as 7am

I need a little something of something at 6pm , or it seems to throw off everything
... and that 50mg tramadol is the imperative bedtime dose

With this said , My night was definitely better than the last two

I appreciate your energy very much
It was indeed helpful

You hang in there too !!

[Icantsleep]

So another update
I only had 2 sleep interruptions , 1 of which wasnt even rls
End of daylight savings time helped
Did have rls at 630am (730am old time)
Took 1 gram kratom and right back in bed
Slept til 930am, but felt very all around slow and physically and even mentally depressed

I could not get out of bed until noon

I'm not sure if the kratom dose agreed with my 430am clonazepam dose (or the overall combo of codeine, tramadol, THC, clonazepam, kratom as described in previous post)

I either need to change codeine dose back to tramadol for now, or forego a 6am or later kratom dose (and perhaps just vape thc again if necessary for rls)

I just feel like I took 5 different drugs last night (which I did)

[Icantsleep]

So I went back to tramadol 25mg for evening dose
Did not take any kratom

Had no RLS all night

.... sure I was up with my screaming 1 year old for hours and missed my sleep window, but I was able to rest quietly for hours sticking to tramadol, strong indica and clonazepam

Hoping I can continue with more of the same tonight without the screaming daughter
... also would be nice if tramadol wasnt so hard on my intestines

Kind of double posting here and in Augmentation thread, but thought no RLS whatsoever was worth talking about .

Such an up and down disease indeed as badnights said .

[Icantsleep]

I do not tolerate tramadol
My bowels hate it
I have isolated this side effect to tramadol

In one day without tramadol, codeine made me constipated even though it did nothing for rebound rls .
I then went back to tramadol and whammo, my bowels are lightning fast

I do not tolerate not taking tramadol as this gives me insane rebound rls

Should I try to get off tramadol again by attempting to switch to codeine, and take 0.0625mg mirapex when the rebound gets insane ???

Tramadol is not the long term answer either way

I am currently in a vicious cycle from hell

[ViewsAskew]

I wonder if you have augmented on tramadol? As you noted, likely not the long term solution for you! It is the only thing outside of the dopamine agonists that can cause that.

[Icantsleep]

I wonder if you have augmented on tramadol? As you noted, likely not the long term solution for you! It is the only thing outside of the dopamine agonists that can cause that.

Long term that is another obvious concern
... in fact I thought that was happening at some point over the past 2 months
I hadnt planned on being on it long term, and need off of it regardless.

The big problem with tramadol is that , and I'm not positive about this, but I seem to be in that group of 5% of people that do not tolerate tramadol
Either way my intestines hate it .

It works fairly well in terms of rls symptoms, but I just cant digest anything
I get a bit of fragmented sleep , and then gotta be near a toilet the moment I wake up

If I'm going back to low dose mirapex I gotta do it right .
.... combo therapy or on it's own
So so exhausting and frustrating

[Icantsleep]

So the reason I had no RLS for a couple nights is because the disease was anticipating me having later bed times

As I've eluded to before, I have a non-24 hour circadian rhythm disorder that I really need to fix

Although I've kept medication times and meal times and bedtimes the same for the past couple weeks , I've been unable to get any sleep once I'm in bed last few nights.
I come close , but last few days actual sleep doesn't occur until 5am even if I'm in bed at midnight

Then I get rls an hour later

.... then I cant drag myself out of bed ... and then the cycle continues

I do need to figure out my meds for rls
.... but I need something rls friendly to get me to sleep

Clonazepam and indica THC is not enough
Perhaps tramadol has become alerting (?)

I just cant sleep , and I'm getting even more exhausted and more scared

[Icantsleep]

Ok

I see new neurologist for my follow up 6 weeks ahead of time on Wednesday
Going to get me off of tramadol

But then what ?
What's my plan ?

I've got two daughters age 3 and 1
I need to treat significant nightly RLS symptoms, but I cant become a sedated zombie.

I only have symptoms at night .

How do I replace tramadol ?? (which I took to help stop mirapex)

Should I resume mirapex ?
Should i resume mirapex in combination therapy ?

I am dependent on 0.75mg clonazepam
I cannot change that anytime soon
I have an Rx for medical marijuana
I have access to kratom (although new neurologist is not familiar with it)
I have codeine (and a script for codeine ER)

I could try a bit of Lyrica
.... my big question is do I go back to a small dose of DA, or go the opiod route ??

Or both ?

I'm nervous, and want to make the right decision

(I know some of you have already given suggestions...
I do read and appreciate them. I would value any more input prior to my appointment in less than 2 days)

[Rustsmith]

You need to see what your new neurologist has to say about where to go with your current treatment.

Since you have augmented on mirapex, you should not go back onto it or any other DA again. You will simply augment again and this time it will happen much quicker than before. And then you have to go through DA withdrawal all over again.

Lyrica might help, but in some ways it is just a stronger version of gabapentin, which didn't go well when you tried it. Horizant is also available, but it becomes gabapentin once in the blood stream, so it will have the same effect on you.

Most of us who have been through augmentation find that we have to take some sort of opioid medication to control our urge to move issues. Tramadol and Codeine are weak opioids, but thankfully the required dose that most of us need is very small. And there are lots of options available for the opioids. Many RLS specialists prefer methadone while others seem to prefer meds such as oxycontin, oxycodone and hydromorphone. They all have different side effects to consider. And methadone, like Tramadol ER has a long half life so it only requires one pill per day (important if you are like me and are continually forgetting to take my pill on time).

The final option is one that your doctor cannot prescribe, and that is the combined use of kratom and MMJ. This is an approach that some use and feel that it works well for them. But kratom isn't as strong as the prescription opioids, so it may not be sufficient on its own once you are off of the tramadol.

[Icantsleep]

Arrg I just hit refresh on my browser instead of submitting a reply
Lost a whole bunch of thoughts

My mind isn't right

The mirapex I would only take in combo therapy at max .125mg
I'm not sure if I'd need it to cover rls symptoms from tramadol rebound

Not a fan of ER
Although would like something with a time frame of codeine ER

I only need something for 8 hours
I've had a mere 15mg codeine and 4 draws of a sativa covering me the last 6 hours of late evening.
I plan to take my only tramadol 50mg right now and hope to be asleep in a hour with the help of a strong indica

Getting to sleep and OVERNIGHT when I actually fall asleep is where I need help
My RLS is the worst (and most disruptive when I am asleep )

I'm going to stop looking at this screen
I had other stuff in the page I lost but I'm going to try to chill out

I welcome other ideas
I know there arent many options and no easy fix

Thanks Steve for your reply

[Icantsleep]

UPDATE

I had follow up with new neurologist

Old sleep specialist hadnt even sent my file over to him .
Had to request it again literally during my appointment

New guy wanted to put me on neupro patch
I said that I would just likely cause augmentation
He then mentioned Lyrica

He couldnt prescribe me anything stronger for 2 reasons

He didn't have my medical history
He doesnt have the knowledge to prescribe and monitor opiods
I thought he was the guy ....

He does want to help me
He wants to refer me to yet another specialist here in Ottawa

I told him I already had the old guy
Maybe that was a mistake... I'm not sure

New guy is calling old guy to see just who is gonna do what for me

Right now I'm the one monitoring my tramadol (which I want off of) codeine, THC , clonazepam, kratom etc

No one else ... just me

I should probably just start fresh instead of going back the old guy

I'm just at a loss

No one cares