1st post after 24 years of RLS

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Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Postby Icantsleep » Tue Sep 24, 2019 7:25 pm

debbluebird wrote:Do you think they could change your tramadol to codeine? Once you augment with mirapex it's hard to take it again. Some people are able to take it 2 or 3 nights then take an opioid the next three nights, etc. I found that mirapex caused my sleep to shorten. It took years to figure this out. I went from sleeping 8 or 9 hours to 6 hours. Then after augmentation and being off it for awhile, when returning to it I could only sleep 2 hours. I know for sure it caused my sleep to shorten.
Now I take gabapentin 600 mg every 8 hours and methadone every 8 hours. They are the only things that work for me. I've tried about 20 different meds.
Good luck


Would I switch to codeine from tramadol because of its augmentation possibilities?
I actually started on codeine for a few days before tramadol, but tramadol seemed to work as well with less next day sedation

I was told I could do either one.... just not both at the same time

debbluebird
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Re: 1st post after 24 years of RLS

Postby debbluebird » Thu Sep 26, 2019 1:37 pm

Another option, if you went back to codeine, would be to cut it in half and space out the time. It lasts 4 hours.

Winegarden
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Re: 1st post after 24 years of RLS

Postby Winegarden » Wed Oct 09, 2019 11:45 am

Is that what doctors suggest in some situations too?

Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Postby Icantsleep » Thu Oct 10, 2019 2:54 am

I now have a script for codeine ER 50mg (or 60mg, whatever the lowest is)
I'm holding off to take it until tramadol is out of my system, and kratom/clonidine are ineffective.

I continue night 3 of tramadol ween tonight

Going from 125mg to zero in 9 days is the plan .
(Dropping 25mg somewhere out of my 3 doses every 2nd night )

Will use kratom and possibly clonidine to combat this , along with usual THC and a bit higher clonazepam as needed.

badnights
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Re: 1st post after 24 years of RLS

Postby badnights » Sat Oct 12, 2019 1:11 am

Hi Icantsleep
Is your circadian rhythm disorder definitely separate from your RLS/WED? You probably realize this, but WED/RLS (unless the symptoms are treated effectively) will push our bedtimes later and later. In un-augmented WED, the symptoms fade in the middle of the night, so that's when we go to sleep; the evil disease then adapts to this new schedule and starts up the symptoms later in the evening; and the cycle continues.

Plus WED/RLS is associated with insomnia, a hyperalterness that makes it difficult to sleep even when you're exhausted, this also tends to push our bedtimes later.

Blood iron work cannot reveal anything about levels of iron in the cerebrospinal fluid (and brain) - except, if ferritin (an iron storage protein) is low in the blood, that means iron stores are low somewhere in the body - probably the brain is iron is high in the blood. But if serum ferritin is high, there is no way to tell if it's high because you're not lacking iron anywhere, or because there is inflammation somewhere in your body, which raises the amount ferritin circulating in the blood. And perhpas there are other reasons. Low serum ferritin means you have a problem, high serum ferritin means you still don;t know anything more.

Gabapentin can have extreme effects on mood. You could try another medication of the same type - pregabalin/Lyrica - but very cautiously, to see if you don't get mood effects.

I doubt you can replace tramadol with gabapentin. Won't be effective enough, and anyway you should avoid gabapentin cuz of mood issues (could try Lyrica).

I'm unsure however, why I get severe rls 2 hours after taking my midnight dose of tramadol and THC

Either the tramadol is not enough, so your natural nighttime worsening overpowers the Tramadol, or the THC is causing the worsening. Or you're taking/doing something else?

should mention that now 4+ weeks into mirapex withdrawal I'm seeing a newer reduction in the severity of the rls.
I thought I had hit baseline , but I'm going to continue leaving even the smallest dose of mirapex out of my system for a bit longer .
I agree!

I do aspire to try to taper and eliminate tramadol as well to get a further idea of where my rls is sans DA AND opiod
I plan on continuing clonazepam for a while
Before you try eliminating tramadol (I see you've started already_ oops) give your body time to adjust to the absence of DAs. It takes a lot longer for some of us than anyone had previously estimated (years). (Most people less tho.) Give yourself 3 months if you can. And don't be averse to resuming an opioid afterward, if you still need something. Hopefully you won't need it tho!
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.

badnights
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Re: 1st post after 24 years of RLS

Postby badnights » Sat Oct 12, 2019 1:16 am

debbluebird wrote:Another option, if you went back to codeine, would be to cut it in half and space out the time. It lasts 4 hours.

Winegarden wrote:Is that what doctors suggest in some situations too?

Winegarden, I'm not sure if you were referring to Deb's post, but if you were, doctors do recommend that sort of thing, though I have not personally had a doctor recommend halving a codeine tab and taking it at two separate times. If you did something like that you would have to keep in mind that you would only be getting a half dose, which might not be strong enough to control symptoms.

The reason Deb recommended codeine instead of tramadol is probably because there are a few reports of someone augmenting on Tramadol (including one on this board - see Taco Bill). It's the only non-dopamine medication ever reported to cause augmentation in WED/RLS.
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: 62
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Postby Icantsleep » Sat Oct 12, 2019 6:26 am

badnights wrote:Hi Icantsleep
Is your circadian rhythm disorder definitely separate from your RLS/WED? You probably realize this, but WED/RLS (unless the symptoms are treated effectively) will push our bedtimes later and later. In un-augmented WED, the symptoms fade in the middle of the night, so that's when we go to sleep; the evil disease then adapts to this new schedule and starts up the symptoms later in the evening; and the cycle continues.

Plus WED/RLS is associated with insomnia, a hyperalterness that makes it difficult to sleep even when you're exhausted, this also tends to push our bedtimes later.

Blood iron work cannot reveal anything about levels of iron in the cerebrospinal fluid (and brain) - except, if ferritin (an iron storage protein) is low in the blood, that means iron stores are low somewhere in the body - probably the brain is iron is high in the blood. But if serum ferritin is high, there is no way to tell if it's high because you're not lacking iron anywhere, or because there is inflammation somewhere in your body, which raises the amount ferritin circulating in the blood. And perhpas there are other reasons. Low serum ferritin means you have a problem, high serum ferritin means you still don;t know anything more.

Gabapentin can have extreme effects on mood. You could try another medication of the same type - pregabalin/Lyrica - but very cautiously, to see if you don't get mood effects.

I doubt you can replace tramadol with gabapentin. Won't be effective enough, and anyway you should avoid gabapentin cuz of mood issues (could try Lyrica).

I'm unsure however, why I get severe rls 2 hours after taking my midnight dose of tramadol and THC

Either the tramadol is not enough, so your natural nighttime worsening overpowers the Tramadol, or the THC is causing the worsening. Or you're taking/doing something else?

should mention that now 4+ weeks into mirapex withdrawal I'm seeing a newer reduction in the severity of the rls.
I thought I had hit baseline , but I'm going to continue leaving even the smallest dose of mirapex out of my system for a bit longer .
I agree!

I do aspire to try to taper and eliminate tramadol as well to get a further idea of where my rls is sans DA AND opiod
I plan on continuing clonazepam for a while
Before you try eliminating tramadol (I see you've started already_ oops) give your body time to adjust to the absence of DAs. It takes a lot longer for some of us than anyone had previously estimated (years). (Most people less tho.) Give yourself 3 months if you can. And don't be averse to resuming an opioid afterward, if you still need something. Hopefully you won't need it tho!


So I'll try to address the circadian rhythm disorder ...
I'm very glad you asked.

I'm actually full blown backwards with my sleep pattern at this very moment while trying to figure out my mirapex withdrawal/ tramadol situation
I have just left my wife and 2 small daughters tonight and moved myself into my parents basement to help facilitate this process
My disorder has hurt me physically, mentally and socially for years, but when it coincides with new medication regimes, I needed to isolate myself and eliminate certain variables .

I slept fine until age 15, where I developed a very profound delayed sleep phase circadian rhythm disorder (fancy way for saying I was a night owl )
I could basically do very little until after 12pm and sleep was rarely possible before 3am
My grades plummeted in school as I would constantly fall asleep in class
This is something that is somewhat common with 18 year old males but ...
This stayed with me until age 24, when this worsened and became a non-24 hour circadian rhythm disorder.
Something very common with blind people of any age (about half ) , but not with 24 year old sighted males.
I would have 4,5,6,7am bedtimes, to the point the only way to correct it was to go through chronotherapy (fancy way for saying I'd stay up 3 hours later/go to bed 3 hours later each day)
Once I was close to a normal sleep pattern, I'd slow down the "therapy"
I could never go backwards, only forward around the clock

Why I never grew out of this is unknown, but may have something to do with drug use (abuse) from ages 16-18 which, along with alcohol and daily cannabis, included perhaps 15 LSD experiences, perhaps 30 involving mushrooms, maybe 15 involving powder cocaine , and perhaps 10 that involved Crack at age 18 ( yes ... Crack cocaine)
And yes ... these had profound effects on my dopamine levels

I thought I overdosed at age 18 with Crack, but it was likely a combination of things that gave me a massive case of stress vertigo
This contributed to anxiety and avoidance tendencies when this snowballed into full blown chemical imbalance a month or two later )

I then ceased all hard drugs

This anxiety probably cant be fully attributed to drug use as I have pronounced family history of anxiety and mood disorders on my father's side.

Clonazepam was introduced and I was out of school for 4 months with home tutors )
I took clonazepam and a variety of antidepressants for years
I also drank very heavily and consumed cannabis daily.
I had sky high anxiety

Hard drugs ceased at 18, but alcohol continued until age 31 and marijuana until age 26 (at which point I really knew I had bad rls, which I was self medicating with marijuana to treat)

RLS began subtly at age 20 (I hope you're still followimg me lol)

I believe the circadian rhythm disorder came first .

Rls now (and has for years ) been the primary thing prevents me from keeping a regular sleep schedule.
I was also essentially a professional poker player until recently, but I would only play once my pattern was off, and not vice versa
With that said , I've quit that altogether now to eliminate that obvious variable (hey , I had to make money somehow)
I now believe I could retrain my sleep pattern and align with my children , but RLS prevents me from doing so

---- THC may in fact contribute to current worsening
I have considered this and have dialed back my overnight use considerably

---- if I'm going to get to 3 months without mirapex , I'm likely going to do it with kratom , or a bit of kratom in the morning to alleviate any withdrawal, and switch tramadol to codeine
I am simply not tolerating tramadol at the dose needed to stop rls
It 100% is the reason I suffer from drastic numbing of my midsection , and possibly the reason I have not digested food in 2 months (the other possible reasons are the mirapex withdrawal, or quite simply such little sleep. You'd think those would have sorted themselves out by now though , so I believe the tramadol is what wreaks havoc on my bowels )
This is now the primary reason I want off tramadol

My apologies for the long post

Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Postby Icantsleep » Sat Oct 12, 2019 9:41 am

Boy I sure aired it out there

I guess I thought full disclosure might be helpful

fuz_mind
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Re: 1st post after 24 years of RLS

Postby fuz_mind » Sat Oct 12, 2019 2:50 pm

hi

i hear you....

i'm not medically trained and can only share from my own experience.

lyrica had a similar but much smaller side effect profile for me than the gabapentin

i have and still am on tramadol and clonazapam (actually it was the combination of tramadol and clonzapam that helped my neurologist work backwards and diagnosed the rls...don't ask me how he did it....)

i usually take 100mg tramadol & 1.0mg clonzapam at night because of pain. my previous experience with 50mg tramadol didn't work as well at night as I would just wake up from the pain. 50mg tramadol or 50mg + 0.5mg clonazapam works when i have day time/evening symptoms. but u do develop tolerance to tramadol over time. i don't have access to tramadol ER. so on bad days, i head straight to the GP for IM tramadol.

i'm a big fan of IV iron even though it's a pain to convince my neurologist to order it (until the forum members directed me to the guidelines!). my experience with iv iron has been good. i am actually able to stay asleep. usually about 4 weeks post iv iron, my sleep quantity increases without need for sleeping tablets and tramadol. and I'm talking about 2-3 hours a night to 5-6 hrs within 4 weeks (occasional 7 hrs). i do hope you get that treatment somehow and the support from the forum moderators who have been amazing with sharing information and guiding in advocating for your own treatment 8)

stjohnh
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Re: 1st post after 24 years of RLS

Postby stjohnh » Sat Oct 12, 2019 3:04 pm

Icantsleep: Wow, complicated and difficult history. I'm sorry you have had so much trouble. I think you said you had a referral to a specialty neurologist. You definitely need an RLS specialist. The correspondence of another circadian rhythm disorder (RLS is a circadian rhythm disorder), your young age of onset of RLS and odd responses to some medicines all make your situation more complex than any ordinary neurologist is going to be able to make sense of. You didn't say it directly, but it sounds like finances may prohibit you from going to an RLS Quality care center in another country. That would probably be your best option if there is any way to swing it. ? Loan from parents?

By the way, it would be helpful to me if you would put your location (UK as I recall) in your user profile (click your user name at top right of page, profile, then edit profile). Actually I wish every one would put their location in their profile. Most members are in USA, but there are members all over the world.

My experience is that THC doesn't do much for sleep unless the urge to move symptom is first controlled.
Blessings,
Holland

Icantsleep
Posts: 62
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Postby Icantsleep » Sat Oct 12, 2019 5:20 pm

stjohnh wrote:Icantsleep: Wow, complicated and difficult history. I'm sorry you have had so much trouble. I think you said you had a referral to a specialty neurologist. You definitely need an RLS specialist. The correspondence of another circadian rhythm disorder (RLS is a circadian rhythm disorder), your young age of onset of RLS and odd responses to some medicines all make your situation more complex than any ordinary neurologist is going to be able to make sense of. You didn't say it directly, but it sounds like finances may prohibit you from going to an RLS Quality care center in another country. That would probably be your best option if there is any way to swing it. ? Loan from parents?

By the way, it would be helpful to me if you would put your location (UK as I recall) in your user profile (click your user name at top right of page, profile, then edit profile). Actually I wish every one would put their location in their profile. Most members are in USA, but there are members all over the world.

My experience is that THC doesn't do much for sleep unless the urge to move symptom is first controlled.


I have an RLS doctor
He is the top sleep disorder doctor in Ottawa

He worked at Mayo

He now works at the Royal Ottawa Mental Health Centre
He has been my specialist for over 13 years
He prescribed me mirapex 13 years ago

He told me to get off mirapex when I augmented

I did

We had discussed opiods , but I guess he forgot tramadol was one of them
He denies even suggesting it lol
He was on holiday or unreachable when I needed the meds
So when I go to my family doctor for the tramadol, he informs me he can no longer prescribe me drugs

To be honest, this was just an excuse
I do not follow him blindly
I ask questions

He does not like this

At our last session (like many previous) he just doesn't seem to want to help me
He seems aggravated when I speak
(A few others have had this experience, not just me)

His last advice (and he gave me the option to take it) was to get more sleep and the rls will get better

Quit poker and
Quit medical marijuana (I guess because that wasnt his idea)
He honestly thinks this will work for someone who just went through mirapex augmentation ??

I tried gabapentin under his direction
I even got a script 3 years ago from him for codeine

But now he wants to abandon me

I told him if I have to now live like this I'd kill myself
He said that he hoped it didnt come to that

That's what you say back to me , as I stand in your office in a mental hospital ?

"Well, you do have your tramadol"

I'm too much work for him
He doesn't want to be responsible for me
He does not want to help me

stjohnh
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Location: Palo Alto, California

Re: 1st post after 24 years of RLS

Postby stjohnh » Sat Oct 12, 2019 5:30 pm

Icantsleep wrote:...
He is the top sleep disorder doctor in Ottawa

He worked at Mayo

...
I ask questions

He does not like this

...
He seems aggravated when I speak
(A few others have had this experience, not just me)
...
He does not want to help me


Top sleep doc doesn't mean he is an RLS expert.

It is sad when experienced Docs take these actions. Happens way too often I'm afraid. Time to get a new RLS doc.
Blessings,
Holland

Icantsleep
Posts: 62
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Postby Icantsleep » Sat Oct 12, 2019 5:45 pm

stjohnh wrote:
Icantsleep wrote:...
He is the top sleep disorder doctor in Ottawa

He worked at Mayo

...
I ask questions

He does not like this

...
He seems aggravated when I speak
(A few others have had this experience, not just me)
...
He does not want to help me


Top sleep doc doesn't mean he is an RLS expert.

It is sad when experienced Docs take these actions. Happens way too often I'm afraid. Time to get a new RLS doc.


His bio states he is

He knows all about augmentation

But what good is he when he let's his ego and lack of integrity get in the way ?

He just doesn't want to do the work hes supposed to do

I left his office in tears

stjohnh
Posts: 960
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: 1st post after 24 years of RLS

Postby stjohnh » Sat Oct 12, 2019 6:03 pm

Time to get a new RLS doc.
Blessings,
Holland

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

Postby Polar Bear » Sat Oct 12, 2019 8:15 pm

Icantsleep - that is such an awful experience with your RLS doctor. He is not a kind man.
My guess is that he is stuck and doesn't know what to do but his ego doesn't allow him to admit this.

Your situation is so so difficult - As Holland has suggested, is it possible that you could make it to one of the RLS Quality Care Centres.
https://www.rls.org/treatment/quality-care-centers
I think there are waiting lists and I have no idea what the cost might be.
Do you have medical insurance?
You need to get to someone who knows what they are talking about.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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