1st post after 24 years of RLS

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

Post by Polar Bear »

You are taking 30mg Codeine and then if necessary adding to it some 4 hours later.
That's quite a moderate dose of Codeine and great if it does what you need. Have you ever tried taking 45mg Codeine

I take 60mg Codeine initial dose at 9pm together with Lyrica and then boost with 15mg at 3am, or 30mg on a really bad night.
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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Re: 1st post after 24 years of RLS

Post by Icantsleep »

Polar Bear wrote:
Thu Aug 20, 2020 7:32 pm
You are taking 30mg Codeine and then if necessary adding to it some 4 hours later.
That's quite a moderate dose of Codeine and great if it does what you need. Have you ever tried taking 45mg Codeine

I take 60mg Codeine initial dose at 9pm together with Lyrica and then boost with 15mg at 3am, or 30mg on a really bad night.
I take 30mg x 2 every night
It does not do what I need

I will be upping the doses slightly or even add a third dose
I aim to eliminate Lyrica .... I have not had any for 2 nights now

I actually had less rls last night for reasons unknown
... I still however cannot keep my eyes open

Icantsleep
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Re: 1st post after 24 years of RLS

Post by Icantsleep »

So I've stopped Lyrica

Moderate withdrawal feelings of anxiety were wiped out almost immediately by my clonazepam dose .
It was actually the first time in a while I felt clonazepam do something.
... with that said , and as I've mentioned before , medications that help induce sleep also antagonize my rls .
I cant exactly just stop or even reduce clonazepam at the moment .
I could try taking less THC oil or less CBD oil .
I currently take significant doses

What I will likely do tonight is up my codeine slightly... probably to 37.5mg and 37.5mg respectively.
Then maybe up to 45 and 45 soon

What I likely need is low dose buprenorphine or low dose oxycontin , but I'll need to work my way up to that reality.

All I know is I currently have RLS basically all night , other than 30 minute intervals of sleep here and there .

This has got to change

Oh ..... I also want to buy a whole new bed
I was thinking a tempur pedic with base .
More on the firm side
Money is not really an object at this point
Suggestions are welcome !!

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

Post by Polar Bear »

We have a memory foam bed. Not a tempur medic but similar. It turned out to be slightly too firm but this was easily resolved by getting a 3" memory foam topper.
Utter bliss.

I hope your 7.5mg Codeine increase proves helpful.
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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Re: 1st post after 24 years of RLS

Post by Icantsleep »

So I made 2 changes last night

I'm not sure which helped more
... my sleep specialist wouldn't approve with 2 changes at once but I really really really needed better sleep

I reduced my CBD dose by 50% (40mg to 20mg)
I increased codeine by 25% (2x 30mg to 2x 37.5mg)

The reduction in RLS symptom severity was significant

I'm pretty sure it was more the codeine , but I'm now reevaluating why I even take CBD oil .
I was taking it for severe tension headaches along with help for sleep
.... I've since managed the tension headaches with Chiropractic adjustments, and I already have clonazepam and THC flower and oil to help sleep

I will do the same doses tonight but plan to eliminate CBD oil within a week
I will continue with same 75mg total codeine dose

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

Post by Polar Bear »

I'm glad the extra Codeine seems to have been of benefit and look forward to hearing if this continues to be the case.
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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Re: 1st post after 24 years of RLS

Post by Icantsleep »

Polar Bear wrote:
Mon Aug 24, 2020 8:47 pm
I'm glad the extra Codeine seems to have been of benefit and look forward to hearing if this continues to be the case.
Last night was even better

I had minor RLS ONCE when my first dose of codeine wore off .

Somehow either reducing my CBD oil by 50% or increasing my codeine by a mere 25% (or both) drastically reduced my symptoms.
I've gone from 8 occurances of severe RLS to just one at worst moderate occurrence in a span of 2 days .

It may not last, but this is immensely encouraging .

I felt better today than I have in months

I sure hope this continues !

ViewsAskew
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Re: 1st post after 24 years of RLS

Post by ViewsAskew »

Icantsleep wrote:
Tue Aug 25, 2020 5:52 am
Polar Bear wrote:
Mon Aug 24, 2020 8:47 pm
I'm glad the extra Codeine seems to have been of benefit and look forward to hearing if this continues to be the case.
Last night was even better

I had minor RLS ONCE when my first dose of codeine wore off .

Somehow either reducing my CBD oil by 50% or increasing my codeine by a mere 25% (or both) drastically reduced my symptoms.
I've gone from 8 occurances of severe RLS to just one at worst moderate occurrence in a span of 2 days .

It may not last, but this is immensely encouraging .

I felt better today than I have in months

I sure hope this continues !
I hope so, too!
Ann - Take what you need, leave the rest

Managing Your RLS

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.

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

Post by Polar Bear »

Me too !!! .👍
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

@icantsleep
Your codeine, even at 37.5, is a fairly low dose. You need a more potent opioid or possibly, just more codeine. When I was using codeine I took up to 180 mg as well as 1800 mg gabapentin, and it still wasn't enough. Really, 30-40 mg codeine and some weed is not going to be enough. Whether the weed actually takes care of symptoms or just makes you sleepy is another question.

I currently use hydromorph contin (the extended-release version of hydromorphone) and it takes care of the symptoms, plus it lasts longer than codeine. Oxycontin would be my least-favorite option, but you're not likely to get to choose - doctors often prescribe what they're familiar with, and I happened to get a doctor who was comfortable prescribing hydromorphone. Buprenorphine would be a good one, too, from what I've heard. I might be switching to that.

I was not impressed with CBD oil; it fractured my sleep badly, though not from WED/RLS. I just couldn't sleep deeply. However, I don't know if you should eliminate it completely; it seems to be required in order for THC to have its beneficial effect. Though you're getting some of each from the flower you vape, I assume.
Beth - Wishing you a restful sleep tonight
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Icantsleep
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Re: 1st post after 24 years of RLS

Post by Icantsleep »

badnights wrote:
Mon Aug 31, 2020 6:39 am
@icantsleep
Your codeine, even at 37.5, is a fairly low dose. You need a more potent opioid or possibly, just more codeine. When I was using codeine I took up to 180 mg as well as 1800 mg gabapentin, and it still wasn't enough. Really, 30-40 mg codeine and some weed is not going to be enough. Whether the weed actually takes care of symptoms or just makes you sleepy is another question.

I currently use hydromorph contin (the extended-release version of hydromorphone) and it takes care of the symptoms, plus it lasts longer than codeine. Oxycontin would be my least-favorite option, but you're not likely to get to choose - doctors often prescribe what they're familiar with, and I happened to get a doctor who was comfortable prescribing hydromorphone. Buprenorphine would be a good one, too, from what I've heard. I might be switching to that.

I was not impressed with CBD oil; it fractured my sleep badly, though not from WED/RLS. I just couldn't sleep deeply. However, I don't know if you should eliminate it completely; it seems to be required in order for THC to have its beneficial effect. Though you're getting some of each from the flower you vape, I assume.
I take 37.5mg twice for 75mg total ... and yes it's still not quite enough .
It really helped for a few nights but symptoms are returning as I adjust to the latest constipation it caused .

No matter what I wake up with RLS because of the short half life

I agree with everything you said
My pharmacist recommended the contin version of dilaudid
I actually totally forgot I have codeine contin as an option
The problem is that I'm somewhere in between doses ( I'd likely need 100mg as opposed to 50mg with regular codeine for breakthrough

Buprenorphine is on the table as well but I'd like to have that to fall back on

What I'd love is an opioid that works and that lasts .... but not something that lasts too long and isnt too hard on my digestive system
I have yet to have codeine work without digestive problems

As for the CBD , I've slowly reduced by 75% but seem to feel all around blah (unsure if it is related)
I want to try eliminating completely, but may still take a small dose to accompany the THC oil and flower .

Edit **** We also need to remember I'm still stuck on 0.75mg of clonazepam
This makes a few doctors hesitant when considering opioids
At this point its opioid or neupro patch , and messing with my already fragile dopamine receptors is likely not a good idea

In a nutshell I need medication that will control RLS safely, while still allowing me to be able to parent without overwhelming side effects
Simple right ???

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

Post by Polar Bear »

You say I take 37.5mg twice for 75mg total ... and yes it's still not quite enough

Can you clarify the above.
Do you take 37.5 mg Codeine as a dose, and then a further 37.5mg some time later.... which is how I understood it, making 75mg over a period of time.
I would consider this to be two separate doses.
Or do you take the two 37.5s at one time making a total dose of 75mg at once.

I take 60mg Codeine at 5pm and 9pm, 30mg at 1pm, 15mg at 9am. And probably 15 or 30mg at 3am.
This is supported by Pregabaline and/or Kratom depending on the time of day/night.

Your Codeine dosage even at 75mg as a single dose is very modest.
If it was me I would have no hesitation in working out exactly what dosage of Codeine I need for relief and take it from there.
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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Re: 1st post after 24 years of RLS

Post by Icantsleep »

I take 37.5mg 30 minutes or so before bed
I take a further 37.5mg when I wake up with or without RLS 4 hours later
Sometimes I wake up sooner, but I wait about 4 hours later before the second dose

I want to eliminate this immanent waking by taking something longer acting
I've just got a script for 50mg codeine ER , and then add a bit more immediate release codeine for breakthrough (like 15-30mg)
The thing is , this defeats the purpose of an extended release med because I'd be waking up .
I thought 100mg might be too much at this time, but it would likely keep me asleep

My other option was hydromorphone contin 3mg (which is apparently the equivalent of 80mg codeine.
The idea of dilaudid concers me, but in reality this would be a lower dose of opioid than 100mg codeine ER

So my options again are :
codeine ER 50mg plus regular codeine later in the night
Or 100mg codeine ER
or hydromorphone contin 3mg

I've gone with codeine for the moment , because like you said, I could up the dose until I find what is adequate.
.... this may however need a slight increase over time .
What would happen if I switched to dilaudid and needed a slight increase ?
I would imagine the next increment of dliadud would he like killing a fly with a sledhamner
... or maybe I could rotate between the two

Sigh ...
I think I'll start with the codeine (apologies for overcomplicating things)
I'm definitely doing one or the other though

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

Post by Polar Bear »

Don't worry about over complicating things in your post..... You are just thinking aloud.
Good luck with finding what level will work for you.
Again.... If it was me..... I'd first work with one med at a time to see how it could work for me. Do remember, I am just a sufferer like yourself albeit with many years of experience..
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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Re: 1st post after 24 years of RLS

Post by Icantsleep »

Well I wont be doing either contin until i figure out my OIC .
Good Lord it is bad right now .
.... to the point I'm considering trying neupro patch for a few days

Cant just quit codeine obviously, but I think I'm going back down to 60mg total tonight .

Fibre and liquids
Fibre in liquids
Liquids and fibre
(Also some soflax)

Yup ...... good times indeed

I did just take my first 37.5mg codeine dose
Hopefully just take 30mg later on tonight

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