My Regime - Kratom/Neupro - and Thanks

For everything and anything else not covered in the other RLS/WED sections.
legsbestill
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Location: Dublin Ireland

My Regime - Kratom/Neupro - and Thanks

Postby legsbestill » Wed Jun 07, 2017 3:51 pm

It is just over a year since I came off 1.5mg per day of mirapexin and suffered the torment of post-augmentation withdrawal. It took months for my severe symptoms to settle down - my sleep consultant was only prepared to prescribe pregabalin which sadly did nothing for my RLS and made me feel even more miserable. From about September, when I was finally prescribed oxycontin by my PCP and started to see an appreciable rise in my iron levels from oral iron intake, life became a little more bearable. Since then I have suffered some set-backs. A sleep study identified that I was suffering from central sleep apnea which was attributable to the oxycontin and I was advised to reduce or stop oxycontin - my sleep consultant wanted me to take neupro instead as according to her it is not possible to augment on neupro. I also developed terrible problems with nocturnal alerting which I initially thought were also due to oxycontin but which still persist even though I have now eliminated oxycontin (I never had any problems falling asleep prior to stopping mirapexin).

After the central sleep apnea diagnosis I ordered kratom which I had read about on this forum and my RLS responded well to it so that I was able gradually to eliminate oxycontin. I also ordered a Relaxis pad.

I currently use kratom - 1 dose in the evening about 9pm, 1 dose at about 1 am and, if I require it, 1 dose about 4am. I estimate that I take about 6 grams per dose (a well heaped teaspoon). This keeps symptoms more or less under control - aided by my Relaxis pad. Sometimes my RLS is so good that I only require the 9pm dose, other times I go through three or four days where even the three doses are insufficient and I am kept awake by urge to move symptoms. I still have great difficulty falling asleep and staying asleep on this regime and although I use marijuana, taken as an edible, which does help, it is not 100% reliable and can leave a dopey hangover the following day - depending on how much I take.

I intermittently replace the kratom with neupro for short periods. Nothing works so well for me as dopamine agonists - 1mg neupro works a dream at present and I seem to sleep better when I am on neupro than when I am taking kratom but I am paranoid about augmenting. I never use neupro for more than 3 weeks at at time. The time on neupro helps to reset my kratom sensitivity so that I can then reduce the kratom dose a little when I return to it. I am currently experimenting (again) with reintroducing pregabalin to see if it helps with the alerting/insomnia.

I am planning to persist with this regime of using kratom for 3 or 4 weeks and then using neupro for 2 or 3 weeks. I hope the addition of pregabalin might help with the insomnia as I would ideally like to reduce my use of mmj. If it does not help I am planning to ask my PCP to prescribe zopiclone or one of the other zs to address my difficulty falling asleep.

I plan also to try a more restrictive diet - perhaps the low oxalate or fodmap diet - although my observations to date are that my RLS does not seem to be diet related.

I would like to thank everyone on this forum for all the help, advice and encouragement I received over the course of the last year while I made this journey. Although I only joined the forum in, I think, August, I had been a long term lurker and, as such, was receiving help long before I even asked for it.

I am posting these details in the hope that they may be of assistance to anyone who is unfortunate enough to be embarking on the difficult road of post-augmentation treatment. I found it of great help to read of regimes that other people were using.

Polar Bear
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Re: My Regime - Kratom/Neupro - and Thanks

Postby Polar Bear » Wed Jun 07, 2017 6:47 pm

It is always great to hear what has been of help, and indeed what has not helped.
Yes, we are all different in how we respond to treatments but knowledge is power and there is always the hope that the experience of another will contain useful and beneficial information for another sufferer.
Thank you.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: My Regime - Kratom/Neupro - and Thanks

Postby ViewsAskew » Thu Jun 08, 2017 3:46 am

Thank you.
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.

badnights
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Re: My Regime - Kratom/Neupro - and Thanks

Postby badnights » Thu Jun 08, 2017 9:00 am

Thank you legsbe! I think you're doing the best thing with your rotation of kratom and Neupro; that will hopefully keep working for a long time.

The alerting thing is probably my biggest problem right now. I never had much of a problem falling asleep, then came WED, dopamine agonists, augmentation, some other stuff, and opioids, over about 2 years; and gradually since then my nights have gotten later and later. I am deadly curious to find out if they normalize when I go off all my meds, but if your experience is something to go by, they won't. Which is not terribly surprising, given that hyper-alertness is a known consequence of the disorder, and is what allows us to function (albeit poorly) with so little sleep that other people would be dropping in their tracks.

Can you tell if kratom is bringing on any central apnea?

You mentioned that pregabalin made you feel "even more miserable". If it made you depressed, you'll have to keep an eye on it. I got depressed on gabapentin but I now take 75 mg pregabalin as a sleep aid (AND zopiclone :(). I take a break every 3 or 4 days and do without it, just because I don't want my body to get so used to it that it freaks out if I don't take it at exactly the same time every day. That's a little backwards but it's working for me so far.

I strongly encourage you to try diet changes. If I were to do it again, I would try the GAPS protocol. I did the Wahls diet (I've posted here about it), and it allowed me to cut my opioid dose in half over about 9 months. I am still at that dose, and still more or less on the diet but I am eating more carbs than she recommends (I work out a lot), and less veggies though I want to get back up to the recommended amount.
Beth - Wishing you all restful sleep tonight
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