1st post after 24 years of RLS

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Icantsleep
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Re: 1st post after 24 years of RLS

Post by Icantsleep »

Rustsmith wrote: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.
I'm curious how much mirapex you use (I forget if you've augmented before)

Actually curious what all your doses are, but also curious what CPAP you use .

Are you a side sleeper ?
Did you need to try a few different models before finding the right one ??

Rustsmith
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Re: 1st post after 24 years of RLS

Post by Rustsmith »

My Mirapex dose is 0.25mg and I augmented first on mirapex, then on Neupro and went back on Mirapex because I was about to do an interstate move, so I had to wait until I got in with a new doctor before starting opioids. As for clonazepam, I take a 1mg Quick Dissolving Tablet and learned that I have to take it while sitting in bed because I am going to be out in just a couple of minutes. As for Tramadol, I take 200mg of the ER form, which I would take at lunchtime and I normally take 600mg gabapentin. With that said, my current treatment is much heavier in the way of meds and I would prefer not to give the specifics because it is only a temporary thing to help me get over the major problems that were created by taking Wellbutrin last week.

I have been on CPAP ever since I was diagnosed with RLS. I was fortunate to actually get a formal diagnosis of UARS, which in those days required a nasal catheter to measure the vacuum created in the esophagus below the split to the lungs when the throat closes off. The catheter was most uncomfortable, but it was only for one night and provided clear evidence of UARS.

I have used two different CPAP machines over the last 8 yrs. Both worked fine, but I switched models when the computer module on my first one gave out and made it impossible to get my AHI numbers.

Yes, I am mostly a side sleeper, but found out from the sleep study that I spend more time on my back than I thought that I did. The bigger issue has been that I had nasal blockage for most of my life, so I mostly breathe through my mouth. That means that I must wear a full face mask that covers both my nose and mouth. The doctor tried various chin straps and nasal systems and all that they did was cause my lips to blow out when I would exhale.

My current CPAP model is an auto-CPAP made by Resmed. After going through the "titration" CPAP study at a sleep clinic to get my pressure settings and being fitted for a mask, I passed on the "lease-purchase" deal that the doctor's office offered and ordered everything from CPAP.com using the prescription that my doctor was required to provide to me. Insurance will usually not cover CPAP machines and masks for UARS patients, so I bought it myself and paid about the same thing was my insurance co-pay would have been. CPAP.com delivered everything in a couple of days and they have treated me wonderfully over the years that I have been doing business with them.
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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Re: 1st post after 24 years of RLS

Post by Icantsleep »

Rustsmith wrote:My Mirapex dose is 0.25mg and I augmented first on mirapex, then on Neupro and went back on Mirapex because I was about to do an interstate move, so I had to wait until I got in with a new doctor before starting opioids. As for clonazepam, I take a 1mg Quick Dissolving Tablet and learned that I have to take it while sitting in bed because I am going to be out in just a couple of minutes. As for Tramadol, I take 200mg of the ER form, which I would take at lunchtime and I normally take 600mg gabapentin. With that said, my current treatment is much heavier in the way of meds and I would prefer not to give the specifics because it is only a temporary thing to help me get over the major problems that were created by taking Wellbutrin last week.

I have been on CPAP ever since I was diagnosed with RLS. I was fortunate to actually get a formal diagnosis of UARS, which in those days required a nasal catheter to measure the vacuum created in the esophagus below the split to the lungs when the throat closes off. The catheter was most uncomfortable, but it was only for one night and provided clear evidence of UARS.

I have used two different CPAP machines over the last 8 yrs. Both worked fine, but I switched models when the computer module on my first one gave out and made it impossible to get my AHI numbers.

Yes, I am mostly a side sleeper, but found out from the sleep study that I spend more time on my back than I thought that I did. The bigger issue has been that I had nasal blockage for most of my life, so I mostly breathe through my mouth. That means that I must wear a full face mask that covers both my nose and mouth. The doctor tried various chin straps and nasal systems and all that they did was cause my lips to blow out when I would exhale.

My current CPAP model is an auto-CPAP made by Resmed. After going through the "titration" CPAP study at a sleep clinic to get my pressure settings and being fitted for a mask, I passed on the "lease-purchase" deal that the doctor's office offered and ordered everything from CPAP.com using the prescription that my doctor was required to provide to me. Insurance will usually not cover CPAP machines and masks for UARS patients, so I bought it myself and paid about the same thing was my insurance co-pay would have been. CPAP.com delivered everything in a couple of days and they have treated me wonderfully over the years that I have been doing business with them.
Thanks for this info

Without getting too in depth , how did both you and your doctor feel about going on mirapex again after 2 DA augmentation experiences ?
Do you take .25 every night?
How long have you been on it this time ?

I know you mentioned the interstate move for going back to it, but do you plan to eliminate mirapex now that you've got your tramadol script ?

So ... like you I have enlarged and often swollen turbinates
My left side is worse
I decided not to have invasive surgery up here in Canada years ago
(I could have gone to the USA and paid $10000 for a 10 minute procedure with a laser , but it may have only temporarily fixed the problem)
I went with a steroid spray for years .
.... now I just rely on breathe right strips and an elevated head of my bed

I'm not sure if this is your exact issue as well, but either way we both breathe through our mouth

I MUST be able to breathe through my nose to sleep (or at least to fall asleep )

I run into problems when I add medications to the mix ..
THC , clonazepam, and most lately codeine.
Combine that with exhaustion , and I stop breathing.

Tramadol does not give me this problem , however it sure gives me other unbearable problems .... sigh ...

I'm surprised my sleep specialist hasnt brought my UARS up lately when trying to convince me to fix my rls naturally.
I think he was more interested in ditching me completely at that visit

The following visit he put me back on mirapex 0.0625mg
He mentioned methadone, but politely explained he no longer had his license to prescribe it (how convenient)

Did you find your rls improved when you started using the CPAP ?
(Did you at least notice your sleep improved ?)

Lastly , was your UARS itself the reason you went with the CPAP , or were the use of rls meds part of the decision ?

... sorry , I apparently asked you like 7 different questions

Rustsmith
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Re: 1st post after 24 years of RLS

Post by Rustsmith »

I switched back to mirapex when I augmented on Neupro and have been taking some level of it ever since. During the move and before starting on methadone, I was taking as much as 1mg/day. When I started with methadone (4 yrs ago), I immediately dropped to 0.25mg mirapex and have been on that ever since. My doctor said that she left me on the mirapex because I also have severe PLMS and that methadone isn't as effective at controlling PLMS. Her concern at the time was to help me get more and better quality sleep than I had been getting during the year while I was augmented. Recently, she has been talking about eventually taking me off of mirapex, but that hasn't happened yet.

As for my CPAP, I haven't noticed that it has any effect upon my RLS or my sleep quality at all. In fact, the primary reason why I used it in the beginnig was because my wife said that it stopped my snoring. Now, every neurologist that I talk to asks if I am still using it, presumably due concerns about stopping breathing due to my medications. As for your sleep specialist trying to convince you that CPAP will fix your RLS, I frequently hear that line from other RLS patients and I believe that it is strictly a sales pitch to try to sell another CPAP machine.

As for the reason why I breathe through my mouth, it is because I had a severely deviated nasal septum that was not fixed until I was 35 yrs old. Up until then, people would tell me to breathe through my nose and I couldn't understand what they were talking about because it was impossible to draw a full breath without opening my mouth. I understand now, but breathing through my mouth is habit now and isn't likely to ever change.
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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Re: 1st post after 24 years of RLS

Post by Icantsleep »

Got my CPAP today

Lots to learn and lots to get used to ....

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

Icantsleep, it doesn't sound like the Tramadol is a good fit for you; your body seems to be saying No to it, for whatever reason. Can you raise the codeine instead? And trying gabapentin or Lyrica again might be a good idea - what did they do to you before?

I hope your CPAP makes a difference. Let yourself get used to it, it can take quite a while.

I just had surgery to correct a deviated septum that I didn't know I had - but it explains a lot - and I was convinced to get alar batten grafts too - they stick a piece of cartilage in the outer wall of each nostril to stop it from collapsing inward on inspiration. My complaint had been twofold, one was that inward collapse when I was exercising, and the other was being unable to breathe thru my left nostril when I was lying on my right side and increasingly at any time. Post-surgery, I can tell my septum is not blocking the left side anymore, from the way my nose blows and other things, but ironically and maybe I should say tragically, I can no longer breathe thru my left side at all (without pulling the skin away beside my nose). I am very upset about it. Basically, I breathe worse now. I see the surgeon on Thursday.
Beth - Wishing you a restful sleep tonight
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Polar Bear
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Re: 1st post after 24 years of RLS

Post by Polar Bear »

Beth, how very upsetting. I wonder will you need a little further surgery and do hope your appointment on Thursday proves positive.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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ViewsAskew
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Re: 1st post after 24 years of RLS

Post by ViewsAskew »

Oh - that is horrible.
Ann - Take what you need, leave the rest

Managing Your RLS

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Rustsmith
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Re: 1st post after 24 years of RLS

Post by Rustsmith »

Beth, I had septum surgery when I was 35. Up until the surgery, I could not take a full breath through my nose - ever. Turns out that my septum was C-shaped and blocked both sides. When I went back for my first followup appointment, the nurse asked how I was doing and I told her that I was able to get more air through my nose than anytime before in my life. The response from the nurse was "wow, you really were bad". I understood when the doctor started pulling gauze packing out of my nose. It seemed like he pulled at least 3 feet out. My breathing got so much better that I was able to start running for the first time in my life - and many of you know where that went over time.

It is my understanding that the procedure has changed and that packing is no longer used. But there may still be some sort of split or other post-surgical item that will be removed at your next appointment. At least, I hope so.
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.

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

there may still be some sort of split or other post-surgical item that will be removed at your next appointment.
All he removed was something that he called a "crust" but it looked brown and gelatinous and disgusting to me :) He said there was nothing to account for the lack of airflow thru that nostril (not even the "crust"), that it was clear and open. I do have some small amount of airflow thru it now, so it seems to be improving. I think that's because I've been using these silicone cones that I got at the drugstore, you stuff it up your nostril to prop it open, and I do that whenever I can't stand it anymore. There's lots of airflow when the cone is in.

His explanation is that my brain has to get used to using that nostril again. That doesn't quite line up with logic for me, but I am willing to take it as meaning that I can expect more improvement. I made him give me an appt for March, though, because I think it's the cone making the improvement and if I stop using it, the wall will collapse again.

Not wanting to hog this thread, sorry icantsleep!
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 »

Been meaning to reply for a while

Sick kids and sick me and then taking care of kids every waking moment I have does not allow much time for myself.
Things did improve though .

I successfully stopped tramadol

It started with stopping Pantoprazole first , along with adding probiotics, and then I was able to reduce stress a bit .
This stopped the lightning fast BMs

I also moved all of my clonazepam dose before bed so I was covered with my new codeine dose, so I got more sleep
I still needed to stop tramadol because it still didn't allow proper urine flow and function in that area .

I lowered my tramadol dose to a mere 12.5mg for 5 nights before swapping for 30mg codeine (adding to my 7.5mg evening and 7.5mg overnight doses of codeine)

I had one night of rebound rls , then other than being constipated, everything was fine

I then went natural high fibre (lots of chia seeds in fruit smoothies) and as of yesterday am regular.

I'm concerned I now have a tolerance to codeine
My RLS is now waking me up a couple times a night (and I'm no longer constipated)
... or I'm augmenting with mirapex (I have not taken a night off since resuming 2 months ago )

I'm taking :

Codeine 7.5 mg 5pm
3 draws sativa 730pm
Mirapex 0.0625MG 830pm
Codeine 22.5mg 915pm
Clonazepam 0.75mg 10pm
3 draws indica 1005pm
Lights out
Codeine 15mg when RLS wakes me up or I wake up (at least 4 hours after 915pm dose)
... followed by 3 draws indica and/or 0.5ml of 30% CBD oil

I havent had much success logging long hours with my CPAP
I saw a new sleep medicine doctor at a major hospital yesterday to talk all things rls and sleep .
She was very knowledgeable.
She isnt too keen on codeine/opiates because of potential breathing issues .
She suggested trying 100mg maximum of gabapentin or trying baclofen, as neither of those options have been completely exhausted

I start with an overnight sleep study on Saturday night (I scored a cancelation spot)

So there's a bit of an update
I literally am getting rls this moment as I sit writing this with my 1 year old sitting on me
Gotta get up

Badnights I hope your nose has improved

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

100 mg gabapentin is a very low dose.

I suspect augmentation rather than tolerance to codeine. Both are possible but one is more likely.

Did you have a conversation about augmentation with your new sleep doc? covering these things:
- what augmentation is (a worsening of the WED/RLS caused by the pramipexole, starting a vicious cycle of increasing dose and worsening symptoms),
- the fact that you need to stop pramipexole completely or it will continue to get worse,
- the fact that during the stopping, you will have more intense symptoms that will need extra medication, and
- that after your body has adjusted to the absence of pramipexole, you should need less medication, and at that point might even be able to get away with no opioids.

She might be only partly aware of what it's about. 100 mg gabapentin would be quite ineffective.

Re everything you've done so far, congratulations! You're off the tramadol and getting some sleep, thank goodness. For the best fiber, add more vegetables to your diet, especially leafy greens and colored vegetables (not the starchy ones).

oh and my nose seems better - I still don't breathe properly out of the one side but it is better than right after the operation.
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 »

So I thought I'd finally update this post

Been busy (or overwhelmed) with kids and the whole Covid 19 thing .
... My RLS did not go away but did improve , and side effects of codeine were somewhat managed , (at times it was in fact very terrible)

Mirapex just isnt working out.

I'm pretty sure I knew it wouldn't .
I seem too be damned if I do and damned if I don't take it

For a midnight bedtime I was doing :

3 draws high THC sativa from my vaporizer
Mirapex 0.0625MG 10pm
Codeine 30mg 11pm
CBD OIL 30% 0.5ml (upped to 1ml) 1130pm
(I later added THC oil 30% 0.35ml) 1130pm
Clonazepam 0.75mg 1145pm
3-4 draws high THC indica 12am
... then usually codeine 15mg when I woke up with rls along with a bit more of the indica about 3-4 hours later

I lasted a few months without a break with Mirapex, but felt I needed to take a break
I would get RLS in my arms
I would up codeine to as high as 90mg and increase cannabis
After a mere ONE day without mirapex I had no rebound rls
I took a one week break and then resumed with brief success
I felt it necessary to resume as codeine was not covering me , and side effects were too much

Very recently I found myself needing another break as I'd get my nightly RLS in my arms
This time the rebound was severe and after only 4 days I resumed mirapex
I then would get RLS in my arms and hands
I've now stopped again and have begun LYRICA 25MG and I now have a prescription for Neupro patch 1mg (to be cut in half)

I should try and summarize
I've gone through severe augmentation with mirapex after using it 13 years
I resumed it after a 3 month break
I took if for 3 months then took a week off
I resumed for another month or two
I stopped for 4 days
Resumed for 4 days
I'm now off it again and now taking Lyrica and am trying to wash out mirapex as long as possible before probably beginning Neupro patch (and not going back to mirapex)

I've upped codeine but would rather not go past 75mg because of imminent constipation.
I seem to tolerate Lyrica fine so far
I take it in place of mirapex for now .

Not sure where im going with this ...
My RLS occurs only when I try to sleep or an sleeping , but it is modearate and occurs almost constantly

Any advice regarding Lyrica or Neupro patch or even another resumption of Mirapex ????
Another opiate/opioid does not seem to be an option ... at least not yet .
(I believe my DA situation is the biggest variable with my nightly RLS )
I'll stop rambling for now .. been too long since my last update

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

Post by Polar Bear »

Icantsleep - I also use Codeine and Lyrica to control my rls symptoms. As my rls is 24/7 I take the Codeine starting at breakfast time.
Only 15mg at breakfast. 30mg at lunchtime. 60mg at 5pm and 60 mg at 9pm. Occasionally 15 or 30mg during the night.
Constipation does not appear to be an issue.
I also use Lyrica. It was initially prescribed to help with the burning issue of peripheral neuropathy in my feet and legs. As a bonus it is very helpful for RLS and was very welcome as i was prescribed at a time when I was weaning off ropinerole.
My lyrica was originally prescribed at 100mg x 2 daily but gradually upped to 200mg to get control of the neuropathy.
Your dosage of Lyrica at 25mg is very modest.

Regarding your mirapex I'd be very reluctant to start it again.
Some times after having been off it for a long time people do use it at a very minimal dose to support another medication.
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

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

Hi icantsleep. I'm glad you checked in. I have some thoughts for you.

Your codeine is probably wearing off, causing you to wake at night. A longer-acting opioid would be better. A higher dose of Lyrica might help, Betty is right, 25 mg is tiny. For some people it helps deal with the symptoms, and it also helps to address insomnia.

I also agree with Betty about eliminating the pramipexole, but I will be a bit more blunt. You will probably never really recover from augmentation unless you stop the pramipexole completely for a long time. If you don't get off the pramipexole completely, recovery will never happen. For most people, it takes anywhere from 1 to 4 weeks without pramipexpole just to recover from withdrawal. It takes even longer, an unknown amount of time, to reverse the effects of augmentation (insofar as it is possible to reverse them). The three month break you took may not have been long enough for that.

I think it's good that you get off the pramipexole completely. I also feel that using the Neupro patch might not be good for you. It might work for a while, but it is a dopamine agonist, and people do augment on it. In general it takes longer to augment on the patch, but that might be only because it is long-acting and therefore masks ongoing augmentation. If augmentation really does cause long-term, semi-permanent damage to our dopamine system, as some specialists have recently speculated, then using the patch will expose you to that harm for a longer period of time. And if you haven't completely recovered from the pramipexole use, you will be starting the patch in a still-augmented state, meaning a higher dose will be needed and a shorter time til it stops being effective (when the augmentation becomes obvious again).

re your CPAP, it's very hard to wear when your WED/RLS isn't controlled. It becomes much easier once those nasty sensations aren't waking you up so often.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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