1st post after 24 years of RLS

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badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

If's definitely something to try. You might be able to lower the codeine dose if you took the patch at the same time. Alternating can be confusing but lots of us have done it successfully, and might be the best way if you only get codeine side effects after a few weeks. One caution if you alternate - you will need to take a higher dose of patch than if you combine it, which means you might not be able to go a while month before augmenting; you might have to alternate on a fairly short schedule.

As Steve said, you will have to experiment to find out what works. You probably won't get it right first off.

Something to keep in mind if you ever decide to go off the clonazepam, is that the codeine contin next-day drowsiness might not be so bad if you're not taking clonazepam, which has a 40-hour half-life and might be making the codeine contin drowsiness worse.
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.

Icantsleep
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Re: 1st post after 24 years of RLS

Post by Icantsleep »

Ok so ....
I put on half a 1mg patch on at 7pm (only 0.5mg)
It probably took a few hours for it to start working and maybe 6-7 hours before it was peaking
I slept very solid after that but felt dizzy upon waking at 8am.
I also took a mere 22.5mg codeine at 9pm and a tiny 7.5mg at 130am when I woke up with rls .

Here’s my question :

To help prevent adverse effects like skin irritation and most importantly augmentation , could I take the patch off when I wake up and then apply a new patch in the evening (or even late afternoon)
As horrible as my RLS is at night , I do not have rls during the day.

There is not much literature that I can find , but I came across this https://www.hindawi.com/journals/pd/2015/475630/

I need this med to last as long as possible... like the rest of my life .
Would it not be advantageous to use it only when necessary ?
Is there any harm in using the patch intermittently ?

Edit ... I took the patch off at 10am
I plan on putting a new one on around 5pm for an anticipated 10pm bedtime

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

I would do the same thing. (That said, I have no medical knowledge on the topic.) From the sounds of the study you found that was done on Parkinson's patients, there is no problem with using it only at night.
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
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Re: 1st post after 24 years of RLS

Post by Icantsleep »

So it's been 3 months
... mostly awful

I continued with Neupro patch 0.5mg (half of 1mg) for about 7-8 weeks
I would apply it generally about 5-6 hours prior to anticipated bedtime and then take it off in the morning (I would go back to bed for an hour as the adverse affects would linger and make moving around difficult .)
I continued with about 30mg Codeine to help do some of the work while trying to avoid OIC .

It worked great initially. But did cause nausea and concerning lowering BP

I was then worried about RLS symptoms in arms and worsening of symptoms so actually reduced to 0.25mg (quarter patch)
I upped my Codeine back to 60mg nightly which obviously caused unbearable OIC

I figured this would be as good a time as any to take a 10 day holiday from the patch
I upped Codeine to 75mg (45 and 30mg respectively through the night )

I lasted 9 days before resuming at 0.25mg then quickly to 0.5mg
I needed reduce Codeine to 15mg which finally stopped the OIC

I plateaued with the patch performance quickly but wasn't having any side effects , so I upped it to 0.75mg (3 quarters patch)
I completely eliminated my rls for 3 days

I went back to 0.5mg nightly as low BP was again confirmed and I didn't want to risk augmenting .

This worked ok for a few days, but now I'm back to multiple wake ups through the night caused by rls .

I should mention that during the brief holiday I would only get RLS in my legs
When I use the patch I get it equally in ARMS and legs (sometimes concurrently)

I'm unsure how long Neupro patch will be beneficial.
I'm constantly trying to find middle ground between patch performance/possible augmentation/adverse effects with Codeine performance/OIC

I reduced my Clonazepam to 0.625mg about 6 weeks ago and plan to reduce to 0.5mg soon.
This is to potentially help with a safer administration of a stronger longer lasting opioid (if i can tolerate OIC of course)
I have also found that Clonazepam puts me in an unnatural state of sleep and can potentially exacerbate my RLS. ( this is a theory at best)

I believe I go through rebound overnight and attribute 2 wakenings to Codeine use(4 hours after each dose respectively)
I need a contin or ER variety of opioid ( NOT tramadol)

I can and have at times fully eliminated THC OIL.
This reduces drowsiness and could help with respiratory concerns

Oh .... I got a whole new bed and frame (and refurnished my bedroom as well )
.... I may exchange for a more firm mattress
I currently have a tempur pedic probreeze "teal" with smart base
I might go to the firmer "orange"
I will post in another thread all about this and the accompanying sleep tracker app (it's very accurate)

I see my movement disorder neurologist for the second time tomorrow
He is the one directing me to cut the patch .

I will be asking how to potentially get more (safe) performance out of the patch
I was skeptical that although he seemed to understand augmentation, his initial recommendation was to alternate between Mirapex and Neupro patch every 2 months to thwart augmentation.
.... most of us would never consider this after already going through profound DA augmentation.

I will see what he has to say

I also may seek advice from a naturopath ...
Perhaps explore a SIBO breath test or even go a complete different route and try LDN

I have an appointment with a hematologist in 5 weeks to discuss my sky high ferritin
I believe this is caused by gut inflammation
... I apparently have inflammation somewhere

Other than a slightly consistently low platelet count , I haven't had anything out of the ordinary in blood work for years .

I'd like to find the source of my high ferritin and even perhaps the cause of my idiopathic RLS

I'll wrap it up for now but come back with what the Neurologist says

stjohnh
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Re: 1st post after 24 years of RLS

Post by stjohnh »

Icantsleep wrote:
Sun Mar 28, 2021 10:14 pm
So it's been 3 months
... mostly awful

...

I should mention that during the brief holiday I would only get RLS in my legs
When I use the patch I get it equally in ARMS and legs (sometimes concurrently)

...

I'll wrap it up for now but come back with what the Neurologist says
This sounds to me like you are augmenting on the Neupro.
Blessings,
Holland

Icantsleep
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Re: 1st post after 24 years of RLS

Post by Icantsleep »

... seems likely , but my rls symptoms aren't as severe or as frequent
My OIC is non existent
And I don't get the severe rebound I'd get from a short acting opioid/opiate

Of course things change fast

What I need long term is a longer acting opioid with less side effects than my current Codeine.

..... or what would you suggest ??

Icantsleep
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Re: 1st post after 24 years of RLS

Post by Icantsleep »

So more frequent and severe rls in my arms last night .

Both my movement disorder neurologist and I agree that DAs aren't going to cover my rls, especially as a long term fix
He's given me 2 options :

Wait for my pain management appointment in 6 months (give or take) to have them recommend a longer lasting opioid with minimal side effects (.... Basically a unicorn)

Or

A spinal stimulator


Spinal stimulator would be via a trial run out of Toronto (about 4.5 hour drive from me)
Their office will be contacting me soon to discuss details

... I'm open to other ideas from the forum, but it seems these 2 options are now the front runners

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

There are a lot of opioids out there. It is quite possible that one of them will have an acceptable side-effect profile in you. But 6 months is a long wait and the experimentation will make it even longer.
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:
Sat Apr 17, 2021 5:48 am
There are a lot of opioids out there. It is quite possible that one of them will have an acceptable side-effect profile in you. But 6 months is a long wait and the experimentation will make it even longer.
The manager of CPM Ontario has been trying to reach me for a few days now
My referral got completely botched
....unbeknownst to me I could have gotten in as early as January but I'll live in the present and not look to lay blame .

I believe I will talk to her tomorrow morning .
She seems keen on dealing with me personally

I'd love to find a medication with a bearable side effect profile
Right now anything more than 30mg of Codeine causes significant problems, and that's obviously not enough for symptom coverage

I've also determined that anything more than 1/4 of a 1mg Neupro patch causes augmentation.
I'm undecided if I'm better off with none at all

.... perhaps if I take lengthy breaks I could wear 1/2 a patch for 2 or 3 days if my OIC is extreme
Otherwise DAs have lost their benefit altogether

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

.
...unbeknownst to me I could have gotten in as early as January but I'll live in the present and not look to lay blame .
An admirable stance, to be so equanimical about it. Looking forward.

You will probably need to stay completely away form DAs for at least a year.

\I'm glad you're - oops - did you talk to her? How did it go? Are they taking you seriously?
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.

Icantsleep
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Re: 1st post after 24 years of RLS

Post by Icantsleep »

badnights wrote:
Thu Apr 22, 2021 4:48 am
.
...unbeknownst to me I could have gotten in as early as January but I'll live in the present and not look to lay blame .
An admirable stance, to be so equanimical about it. Looking forward.

You will probably need to stay completely away form DAs for at least a year.

\I'm glad you're - oops - did you talk to her? How did it go? Are they taking you seriously?
I don't think I could possibly convey how bipolar and flip floppy this individual is

I'll elaborate once I actually get something in writing as it's been all talk

Last week it seemed I was about to finally get the care I need
Everything short of promising me a cure .

I will say that today I was told that my RLS is stress and anxiety related, and that needs to be the focus .

The sh** she was saying to me (later which she profusely apologized for) would make anyone with RLS lose their damn mind

I somehow managed to change her mind .... at least for the next 15 minutes

She is contacting the neurosurgeon in Ottawa who is familiar with the Spinal implant (for pain) to see if he'll take me on

I seriously could not possibly describe how ridiculously insane this latest conversation was

Straight up twilight zone

More to come I guess ....


I stopped taking the Neupro patch last night BTW...
No plans on resuming

Icantsleep
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Re: 1st post after 24 years of RLS

Post by Icantsleep »

I should emphasize that this latest neurosurgeon would hopefully be wiling to treat me with medications and NOT a spinal implant

I have very low expectations for a positive outcome

Pain management apparently saw that I had 1 visit with a mental health doctor back in March 2020

One

To discuss coping with being abandoned by my sleep specialist after augmentation, and the fact that he said tramadol would be the only medication I could take (and to just get better sleep so my rls would magically stop)

TRAMADOL CAUSED ME TO LOSE 20% OF MY BODY

This one visit is now a HUGE flag on my medical record

Pain management believed that stess and anxiety were the root causes of my RLS

Moral of the story is .... no matter how dire or depressing your situation is , DO NOT TELL ANYONE ABOUT IT

Rustsmith
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Re: 1st post after 24 years of RLS

Post by Rustsmith »

Icantsleep, this is NOT an attempt to one-up your story, but runs along the same lines and has made my life a nightmare.

Late last year, just before Christmas, I had a string of days where my RLS was really bad. After very little sleep for two or three nights in a row, I took my evening meds and 30 minutes later knew it was going to be one of those nights with zero sleep. So I called the after hours number for my doctor and was told to go to the local ER and tell them to call. I did that, but the ER doctor never called. Because I told them I was slightly depressed from sleep deprivation and because I was pacing around the exam room, he decided that I was suicidal in spite of my explicit statement that I was far from being that depressed. Before I knew it, he had placed me under a 72-hr psyc hold and shipped me to a psyc hospital 3 hrs away. So now I had 3 hrs in the back of a security transport car with horrible RLS.

When I got to the psyc facility, the decided to withhold the 200mg of Tramadol I was taking simply because it wasn't on their formulary (aka too expensive). That caused me to go into withdrawal, which was very different from the opioid withdrawals I had experienced in the past. The hospital staff was totally uncaring and it was only after I got out a week later that I found out that Tramadol is also a potent SNRI anti-depressant. That explained the odd withdrawal, the horrible migraine headache, my now horrible depression and anxiety and the terrible nightmares most nights. When I got home, my doctor was livid at the way that I had been treated and confirmed that I was probably experiencing SNRI Withdrawal Syndrome, which is very similar to PTSD. Because of Covid, it took me months to find a therapist to help me with recover from the trauma and to get over the now pretty severe depression and anxiety. I spent quite a bit of time working with a medical malpractice attorney until we found out that jury awards for psyc damages are treated by the IRS as normal income and expenses for my attorney fees, expert witnesses and court costs are not deductible. If I had gone to court and won, I would have lost money overall and none of the doctors or nurse practitioners would have been impacted other than having to pay the deductible on their malpractice insurance. The only two good things from this were that the psyc hospital was closed down by the state last fall for mistreating patients and my story has been included in the handout packet that the Foundation is using for advocacy work this week in Congress.

And although I continue with therapy, I am finally starting to recover after almost 18 months.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

The sh** she was saying to me (later which she profusely apologized for) would make anyone with RLS lose their damn mind
I somehow managed to change her mind
That kind of stuff is maddening. Absolutely maddening.

You somehow managed to make her see things clearly (clearly enough to do you some good, anyway), and that's wonderful, but why did you have to convince her in the first place? there's something seriously wrong with doctors' attitudes.

And if you really want to get depressed (sorry, didn't mean to use that word), imagine all the people who are so bagged, so destroyed by the untreated disease that they can't convince anyone of anything. They get sent to the loony bin, in effect, and they STILL have untreated WED/RLS!
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.

Icantsleep
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Re: 1st post after 24 years of RLS

Post by Icantsleep »

I now have an in person consult with an actual pain management doctor next week

I won't get into specifics, but this took alot of effort and clever maneuvering .
It sure is a challenge to prove to judgemental people that you are in fact NOT crazy
I bit my tongue more than a few times when I just wanted to scream .

I came close to throwing in the towel , but that is not an option
We will see what happens next week

I would still advise people with severe RLS who are looking for treatment to omit any and all mental challenges they deal with, be it directly related to RLS or otherwise .

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