Using Neupro 3 months AFTER mirapex augmentation

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ViewsAskew
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Re: Using Neupro 3 months AFTER mirapex augmentation

Post by ViewsAskew »

Icantsleep wrote:
So taking into consideration my iron is sky high, and it took a good 10 years to augment, you believe a combination of mirapex 0.0625mg with about 25mg tramadol (37.5mg is easily enough last couple days ) with properly timed 0.75mg clonazepam (I'd love to get it to 0.5mg) and very sparingly administered high THC will keep me from augmenting for .... years ?

(I also aspire to eliminate the early evening 15mg of codeine. I've already got it down to 7.5mg .
I think the mirapex cocktail covers me overnight and through the day until next dose , at least for now )

I shouldn't take breaks every few days at the beginning like you did ?

Holland thinks I can take it every day no problem as long as I'm taking a splash of tramadol

(Dont worry .... I'm not going to hunt either of you down if this doesn't work lol )

Oh ... I had ZERO rls last night and overnight and into this afternoon
I just hope its sustainable !!!
You could run into trouble because tramadol CAN augment. And, I have NO idea other than myself, that this works. I just know that I augmented in a week originally, and the more iron I have, the longer I have pushed that.

I also wouldn't push it to start. I'd stop the pramipexole every X months. Maybe 4 or six? Take a one week break. See what happens. Next time, push it to a month or two longer. See if you can get to a year. I honestly don't know how well it will work - wish I did!
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.

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Using Neupro 3 months AFTER mirapex augmentation

Post by Icantsleep »

Havent updated this in a bit

I got really sick again , so no vaping THC for the last 9 days
.... but I dont attribute my worsening rls to just this

Each night I seem to have more mild to moderate rls than the previous night
0.0625mg of mirapex worked like a charm for 3 days.

3 weeks later I am either augmenting again slowly , finally adjusting to my tiny 25mg of tramadol and need more , or both .

Either way , I sure dont sleep enough because of my minimal coverage .
I'm not sure if I should take more tramadol with or without the mirapex
Or perhaps I'll just bring back THC tonight and see what happens
(I sure as heck am not going to take more mirapex)

I'm pretty sure mirapex cannot be taken every day or I'll augment again fast
I'm pretty sure tramadol is still gonna give me adverse effects if I take more .

I WANT OFF OF BOTH OF THEM !!

I had an appointment with my neurologist today
He thinks my sleep specialist will will have all the answers and he did nothing for me

To his credit, he barely knows me, and I'm technically not his responsibility, and hes not opioid savvy.
His only suggestion was neupro patch .
(Its like we went backwards)

I see sleep specialist tomorrow
Sleep specialist avoids the neurologist, and wont seem.to work with him even though neurological does display interest in this.
.... these are the guys that thought mirapex a second time was a good idea .

I'll vape a bit of weed
I'll see my specialist tomorrow
I'll likely not be prescribed another opiate lol
I will push for a CPAP

I'll update again I suppose

Im getting frustrated

QyX

Re: Using Neupro 3 months AFTER mirapex augmentation

Post by QyX »

How did your appointment go?

Bridgercan
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Joined: Sat Jun 23, 2018 6:43 pm
Location: Spain

Re: Using Neupro 3 months AFTER mirapex augmentation

Post by Bridgercan »

Hey Icantsleep—your frustration makes perfect sense. What you’ve described is a complete RLS Kafkaesque hell, which probably feels so hard to bear. It’s truly an awful place to be. Having myself augmented twice from Requip and Mirapex, I have much empathy and compassion for you.

I hope your appointment got you some progress in the right direction. Dealing with doctors can be an exhausting test of patience, and it can be so difficult to remain an effective advocate for yourself when you’re foggy and struggling from medication and a serious lack of sleep. Is there someone you trust who can go with you to your appointments? Someone who could ask the questions you think of later or who could take notes, or do whatever to support and advocate for you? Having someone there could make a real difference in helping you get to a better place. My spouse has made a real difference for me when I’m so tired all I can do is nod my head, say yes to the doctor, because I’ll try anything without really thinking it through. He has also gotten me to button it when I’ve been about to start screaming at health care providers :shock:

When you feel like it, let us know how it went and how you’re holding up!

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Using Neupro 3 months AFTER mirapex augmentation

Post by Icantsleep »

QyX wrote:How did your appointment go?
Xmas, xmas holidays for others and a one year old who continues to battle pnemonia has kept me from doing much

The appointment itself wasnt very inspiring

One right direction is I'm being fitted for a CPAP in about 36 hours .

Other than that , I have very little support with regard to all aspects of RLS (physical and mental )

Sleep specialist not terribly interested or invested in finding a med regime that works
... or even trying to find someone who would/could help (this guy is the actual expert in the city )

I have been referred to the main hospital in the city .
I specifically asked if anyone at the neurology clinic had experience with SEVERE RLS
They got back to me after xmas and said to send in a referral
... I'll follow up in a week or two

I still have follow up with sleep guy in a few weeks
Primarily for CPAP, but we will see how far I'm into codeine replacing tramadol, and what that does for me
..... and then there's getting off of daily mirapex

What I do know is my current regime simply does not cover my rls

Get CPAP Saturday then make some decisions

Also

Bridgercan , great suggestion and I appreciate your encouragement
I do now bring my wife for a driver, a second voice, and as someone who also needs to know what the heck is going on , and where the heck this is going

Bridgercan
Posts: 67
Joined: Sat Jun 23, 2018 6:43 pm
Location: Spain

Re: Using Neupro 3 months AFTER mirapex augmentation

Post by Bridgercan »

Hey Icantsleep—thanks for update and you’re welcome for the encouragement. It sounds like you’ve got a lot to deal with right now—I certainly hope your little one is recovering! It’s saddening to hear your current regime is not working for you...and that your specialist sounds pretty indifferent to your needs...but glad to hear your spouse is going with you. Likewise, my spouse has driven me when I’m just so exhausted.

I hope starting cpap therapy goes smoothly for you and, after some time, you find it’s been worth the effort. It’s a big adjustment for sure—I’m a month into mine. I’ve found a lot of information and helpful tips and advice on cpaptalk.com. That forum has helped me immensely with getting my cpap machine dialed in and becoming generally more educated about a whole ‘nother healthcare journey. And it’s a very supportive online community as well.

In the meantime, may persistence bring you the treatment you need. Not sure about the nuances with your healthcare system, but after having gone through 6 sleep specialists in a year and a half, my experience with sleep specialists coming from a pulmonology background was not good at all for efficacious RLS treatment. I have had much better RLS care from specialists with a neuro background.

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