1st post after 24 years of RLS

[Icantsleep]

I will be upping Lyrica tonight to 50mg
I will continue upping it by 25mg every 7-10 days up to 150mg
I will NOT be trying Neupro patch for as long as possible, if ever

Acquiring a longer lasting or stronger opiod sounds interesting in theory, but not one of my specialists will prescribe me one
My RLS is happening the entire time i try to sleep, not just in 3 or 4 hour intervals , so it's not just the codeine wearing off
My family doctor however might step up should it be deemed necessary (by who I'm not sure )
He has been the only one to prescribe me meds for a few years now (and he admittedly knows very little about RLS/WED.
No one else wants the burden or the responsibility
...although my pharmacist has shown great interest

My long term sleep specialist began distancing himself from me dramatically when the mirapex he prescribed me was obviously causing augmentation.
He almost refused to advise me as to how to take my Lyrica since I didnt bow to his exclusive "care" and finally decided to try it with my family doctor writing the script .

He mentioned again today that there isnt really anything more he can do for me , as if I was suddenly cured or this disease wont progress and more aggressive care will be necessary (as in my current situation)

All I know is I have severe RLS when I attempt to sleep EVERY NIGHT

It is uncontrolled and I'm having a very difficult time getting it fixed .
What's perhaps most upsetting and least encouraging is that locally no one with the apparent knowledge or expertise wants to help me

[ViewsAskew]

I read a book quite awhile ago called How Doctors Think. One of the takeaways is that when doctors don't have success, they start pulling away. They like healthy patients better - no challenge to their self-worth. It must be very hard to have difficult patients and not feel like a failure that you cannot help them! Few doctors want patients like some of us - who've had years of misdiagnosis, wrong treatments, etc.

I often find (just me - no idea if this is borne out by studies or other peoples' experience) that younger doctors work better. Maybe 3-5 years out of school. Not so long that they know it all, but long enough that they have some experience to build upon. Finding those doctors has often helped me the most.

[Icantsleep]

This is a possibility I suppose
3-5 years in is a good place to get them


What is now important is to figure out why I'm symptom free during the day and evening, but once I'm just about to fall asleep, a random leg or arm starts going bananas
..... and then it's a party in a new body part all over again
... and this goes on for 8-10 hours until I sleep 2 hours

Perhaps I should take Lyrica closer to bedtime
(I am currently taking it first )

How far apart do I take all my meds ?
Would be neat if a doctor could tell me lol

.... I'm just frustrated and woulda rather been asleep 8 hours ago
Just like every other night lately

[Rustsmith]

The half life of Lyrica is about 6 hrs, so taking it closer to bedtime should help with your nighttime symptoms. Taking it closer to bedtime would also help if Lyrica helps you fall asleep. I take gabapentin (same class of meds) about 30 minutes before bedtime because he is one of the very few meds that helps me fall asleep in a reasonable amount of time.

As for your symptoms occurring only at night, that is one of the characteristics of RLS and is even part of the diagnostic criteria. The need to move urges should primarily occur during the evening or at night when attempting to relax or rest.

As for doctors, in addition to View's suggestion of looking for a young doctor, you might also look at the doctors at the nearest major medical school's neurology department. I believe that professors of medicine are more likely to 1) be knowledgeable in the treatment of RLS and 2) admit when they have hit the limits of their knowledge. My personal experience has been that the professors are also more willing to write opioid prescriptions for chronic conditions like RLS possibly because they are covered by the school's insurance and may be less likely to be concerned about attracting the attention of the DEA.

[Icantsleep]

So ... I relax and rest just fine ....
No RLS

It's when I decide I'm going to actually sleep that I have the onset
The moment I begin to drift off ... bam !
And then I have it essentially the entire night (which becomes morning and all day ... I just got out of bed at 5pm )

For the last 6 months perhaps I was getting my rls almost exclusively when asleep .
Now that I've run into problems with my DA again ( been off it 10 days now) It happens the entirety of my "sleep"

It feels like the more drugged i am to make me sleepy, the worse the symptoms get
ie : Clonazepam, Lyrica , THC etc

[badnights]

As for your symptoms occurring only at night, that is one of the characteristics of RLS and is even part of the diagnostic criteria. The need to move urges should primarily occur during the evening or at night when attempting to relax or rest.

So ... I relax and rest just fine ....
No RLS
It's when I decide I'm going to actually sleep that I have the onset

Note two of the defining criteria of RLS/WED: (1) Symptoms are worse, or occur only, in the evening and at night; and (2) Symptoms are triggered by physical and mental relaxation. The fact that you lie down (physical relaxation) and decide to sleep (mental relaxation) is what triggers the symptoms. It is an evil, evil disease.

The most important thing you can do is get off the Mirapex (as I've said before). That means things will get worse for a time. It would be better to do with an opioid but is possible to get through it without. My suggestion: keep working with your new sleep doc, and order some kratom. IF new sleep doc begins to "get it", work with her, otherwise use kratom to get off the pramipexole on your own.

He mentioned again today that there isnt really anything more he can do for me ,

Meaning, he is at a loss and is giving up. There are things that can be done, but he is not willing or able to do it for you. Luckily, you have a new sleep doc who might be more interested in learning. It would be best if you could prepare some resources to bring her - and read them yourself, too. I suggest:
- the paper that explains the use of opioids to treat WED/RLS https://www.mayoclinicproceedings.org/a ... X/fulltext;
- the Medical Bulletin for healthcare providers published by the Foundation - see my signature link for how to access it; and finally
- the 2nd edition of a lovely little book written for doctors but understandable by regular folks like us, CLinical Management of Restless Legs Syndrome: https://smile.amazon.com/Clinical-Manag ... 200&sr=8-7 - - hope that URL works, it's my smile.amazon link). In fact, this little blue book is something you should have if you at all can afford it. Read the relevant parts. Mark the parts you want HER to know, and bring it with you to your next appointment.

I will continue upping it by 25mg every 7-10 days up to 150mg

Good

How far apart do I take all my meds ?

You may want them all to hit peak effectiveness at the same time, at bedtime or slightly after. That's hard to figure out. I hope everyone forgives the nonsense I'm about to type, and corrects it, but:
- - You can look up the duration til a medication kicks in, to know when its effectiveness should start. Or better still, use your own experience with the medication. Next you need to know when its effectiveness will end.

- - Effectiveness of many medications (especially extended-release ones) will continue to increase as their concentration in the body rises, then declines as the medication is eliminated from the body. The effective period varies from person to person with any one medication, so again, it's best to use your own experience to know how long a medication "lasts" in you. But you could also roughly estimate the time by looking up the half-life of the medication (after one half-life, it's half gone; after two half-lives, only 1/4 of it is left); it will be most effective for the time between when it kicks in and the end of the first half-life.

- - As an example, if you figure that the Mirapex takes 1.5 hr to kick in and lasts 5 hours and codeine takes 15 minutes to kick in and lasts 2 hours, and you want them both to hit at once.... take the Mirapex 1 and 1/4 hours before the codeine.

- - If you had lots of extra meds, you could take more at bedtime so that the effectiveness lasted longer.

You might not need another doctor. As I understand it, you have:
- an old long-term sleep specialist who has thrown up his hands and given up, so let's forget about him;
- a new sleep specialist who maybe is just beginning to bone up on augmented RLS/WED, so let's work with her; and
- a family doctor who prescribes opioids recommended by the specialists.
Still, I tried to find out who else was out there, but the internet is full of holes when it comes to good WED/RLS doctors. I did not find anyone in the Ottawa area except those at the West Ottawa Sleep Centre, and I assume you're already going there? Of the doctors there, Qasim Alikhan has mostly good reviews, including one from a patient who was treated for WED/RLS (no further details), though he is mainly a respiratory sleep guy.

-- There is also a guy in Mississauga who at least understands some of the less commonly known things about RLS/WED, but I don't know if he can treat severe, refractory WED/RLS in an augmented or previously augmented patient, nor if he will accept an Ottawa patient: Dr. Philippe Rizek, a neurologist and movement disorder specialist at Credit Valley Hospital (2200 Eglinton Ave W).

-- In Montreal there is the Center for Advanced Research in Sleep Medicine, affiliated with the University of Montreal. It was started by Jacques Montplaisir, a researcher and profressor, who was involved in a lot of the early RLS/WED genetics research. He seems to be more involved in other aspects of sleep lately, but he has a team of clinicians in the sleep clinic, so it might be worth a try if you could get it. They might not do out-of0province, though. Web page on how to get a consultation: http://www.ceams-carsm.ca/en/consultation.

-- There is also the Sunnybrook Health Sciences Centre at the University of Toronto, Medicine department, Neurology division. A number of doctors there include RLS/WED among their areas of interest. Does not mean they know anything about treating refractory augmented WED/RLS, though. ALso, you would need a referral, and - this kills the idea unless you can use a Toronto address - they only accept patients within their "catchment area" (they show a map). https://sunnybrook.ca/content/?page=Dept-Med-Div-Neuro

-- Then there's the Montreal Neurotherapy Center, which I'm sure would take you and your money no matter where you're from. It advertises itself as treating sleep disorders and specifically mentions RLS, but their methods flirt with the fringe. They don't say what they do specifically for WED/RLS, but for the range of disorders that they treat (pretty much anything neurological), they use "neurofeedback" (neurological biofeedback), which has not been shown to work with RLS/WED; transcranial magnetic stimulation, which has had some reported successes in case studies of WED/RLS; and other stuff that might be good or might not, no studies.
-- -- They offer a free 15-minute phone consult ("If you or your loved one are still experiencing these issues and have reached the limits of current/past treatment, register for a free 15 mins phone call to learn more about Sleep Disorder Treatments")
-- -- They also offer teletherapy, which I think means you could have most of your followup by phone.
-- -- I can't tell if they actually know anything about RLS/WED, and I don't know what it costs. (https://neuromtl.com/sleep-disorder/)

[Icantsleep]

I appreciate the lengthy replies and information.
I would rather not share specific names of doctors in a negative light .
If we could strike from the record those names associated with negative reviews, that would be appreciated.

I have Kratom but am hesitant to add it to the mix ...
Out of curiosity, what opioid ( preferably taken for the short term ) would you recommend to help me manage life without mirapex?
Would I take it in conjunction with Codeine ?
.... I'm at the point where I might cave and go back to mirapex (or the neupro patch ) for a few nights until I have a solid plan to treat my RLS without a DA .
I'm just so desperate and once again losing hope (and my mind)

[Icantsleep]

Anyhow ...
So moving on, I found my symptoms were less severe when I took clonazepam 2-3 hours earlier (as in first, and before all other meds)
This also led to me being less anxious about my bedtime routine (imagine that lol)
My symptoms were especially less severe for the last couple awakenings (I had 4 in total )
I was able to get back to sleep relatively quickly
This gave me a significant boost of energy and has given me a bit of hope
I wont get too far ahead of myself .

Oh ... I also took my 50mg Lyrica about 2 minutes before my lights out indica vape as opposed to taking it hours earlier
Basically I swapped the Lyrica and Clonazepam in terms of when I take them

I plan to do the same tonight

[badnights]

glad you've figured out a positive change.
A new opioid would be Instead of the codeine, probably.

[Icantsleep]

So things have gotten pretty dire .
I suppose I can still up lyrica from current 50mg
.... I think it's the horrible lack of sleep as opposed to the lyrica , but I can feel extremely depressed

Codeine remains at 30mg x 2

For a 1030pm bedtime I have been doing :

0.75mg clonazepam 8pm
3 draws high THC sativa 815pm
Codeine 30mg 9pm
CBD OIL 30mg 930pm
THC OIL 10mg 930pm
Lyrica 50mg 10pm
4 draws high THC indica 1015pm
(Probably get rls about 2 minutes after closing my eyes and need to get up )
Codeine 30mg 130am (whether RLS wakes me up or I'm already up)
Perhaps another 3 draws indica

I now get RLS more frequently and the most severe since commencing lyrica

I think clonazepam antagonizes my rls a bit , but I cant exactly stop taking it
I wonder if I'm overdoing the cannabis lately and it is affecting my dopamine
I think I've become tolerant to 60mg of codeine
I believe I've adjusted to Lyrica and may need more

I definitely feel incredibly drugged anywhere from 2-6am
I will still get severe rls regardless

I take my codeine with a fruit smoothie each time with chia seeds etc . to help with constipation.
I'm not sure if sugars in the middle of the night amplifies my rls

I'd love to know the source of my rls , be it a dopamine or an iron or an inflammation problem .
Perhaps I could have some carrier screening done to find a potential mutation (???)

I'm really reaching here I know ....

I guess 50mg lyrica is still low and I'll start there .

I'm just very very unhappy and wish more than anything I could be present for my family

[Icantsleep]

So I had the same 6 different episodes of rls last night
No same depression, just utter exhaustion


I'm hoping the surge in rls is stress related or something short term
With that said I'll need to make an increase in meds somewhere.
Gotta start getting more sleep very soon because my problems are compounding

[badnights]

this is horrible. Can you switch to a more potent opioid?

[Icantsleep]

this is horrible. Can you switch to a more potent opioid?

Oh it's gotten worse

I upped Lyrica to 75 then 100mg
Became stupid , numb physically and mentally
literally couldn't pee
Couldnt stand at times
... worst of all it seemed to make my RLS more intense .

I get rls 8 times a night , or essentially continuous.
Over and over and over

I've just stopped Lyrica last night.
Went from 100 to 50 in one night
Then went 50 to 25mg two nights later
Then took 5 more nights at 25mg to reach zero last night.

I take clonazepam quite a few hours before bed instead of right at bedtime as it seems to antagonize rls symptoms if not taken in conjunction with codeine (or something that will cover actual rls symptoms)
I actually plan to make a small reduction in dose

I then have cannabis flower and and oils combined with codeine (currently 2x 30mg)

That's it .... and its sure not enough
I have not gone back to mirapex since starting the Lyrica

I have literally have neupro patch 1mg waiting for me at the pharmacy(with directions to start at .5mg by cutting it in half )
I am either going to need to start the patch and risk augmentation or up codeine while we decide on a strong opioid

I had a reasonably good discussion with the newer neurologist yesterday
She suggested buprenorphine but wanted more time to research
She was concerned about oxycontin side effects but its not off the table

I seem to require something with more than a 4 hour half life
She wants to talk again in a month
... I cant do this for another month

I need to be safe
I need to be myself
I also need sleep

My family doctor would likely prescribe anything but hes away on holiday until next week

My options are neupro patch or up my codeine until strong opioid materializes

Thoughts ?????

[badnights]

If upping your codeine is an option, that is the one I would choose. I would also hold off on lowering your clonazepam until you stabilize a bit and get some more sleep, but keep timing it so that it kicks in only after the codeine has taken effect. Thats what I would do, anyway. And if it's an option , plan to take additional codeine about 4-5 hours after the first dose.

It is well known (among patients) that sleeping meds make WED/RLS worse and should never be taken if the wED/RLS is not first controlled. WED/RLS is a disorder of the resting state; and sleeping pills promote that state.

[Icantsleep]

If upping your codeine is an option, that is the one I would choose. I would also hold off on lowering your clonazepam until you stabilize a bit and get some more sleep, but keep timing it so that it kicks in only after the codeine has taken effect. Thats what I would do, anyway. And if it's an option , plan to take additional codeine about 4-5 hours after the first dose.

It is well known (among patients) that sleeping meds make WED/RLS worse and should never be taken if the wED/RLS is not first controlled. WED/RLS is a disorder of the resting state; and sleeping pills promote that state.

I definitely need another codeine dose 4 hours after the first one every night , in fact I usually give up trying to sleep while I wait for the entire 4 hours to pass before taking more.

I'll take clonazepam 0.75mg in a few minutes
Then vaporize sativa
Then possibly take 25mg Lyrica one last time an hour later (I'm feeling some possible withdrawal )
Then CBD and THC oils
Then codeine 30mg
Then vaporize indica
Then try to sleep
(Then likely get RLS )
Then eventually take the other 30mg codeine
Then a few more draws indica
Then try to sleep again

Unsure if I'll add 7.5mg to each codeine dose or take and additional 15 (or 30mg) 4 hours after the second dose

What seems to be clear is I stay away from dopamine agonists

Wow I feel like I'm seriously falling apart (again)
This clearly cant continue

.... also
What stronger opioid might suit me ?
Oxycontin?
Buprenorphine?
Something else ?

(I'm asking alot with the last question, I know)