More time lost to RLS - Has my kratom... - Restless Legs Syn...

Restless Legs Syndrome
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More time lost to RLS - Has my kratom/neupro system stopped working?

involuntarydancer
involuntarydancer

I am at the change-over time of my system of alternating kratom with neupro. I have been on the kratom phase for about 8 weeks.

I started a 1mg patch of neupro three days ago and reduced my kratom dose (didn't totally eliminate it straight away as didn't want to shock my system too much). Neupro has always been very effective for me but this time it didn't work at all. Had RLS nearly all night - not terribly severely - I managed to stay in bed - probably shouldn't have but it's so difficult to get up unless physically jerked out of bed - but sleep was very fragmented. Same for the next night so last night I put on 2mg patch (and left on the 1mg of the night before). STILL no sleep and horrible symptoms all night.

I am wondering if this is the effect of withdrawing from kratom (I haven't taken any for 2 days) or has my RLS just got worse or what? I have not made any major changes to my diet which remains very plain and restricted or to any other aspect of my life. Still taking oral iron regularly. I could barely function this morning and went back to bed. Have spent most of the day there feeling sorry for myself and enduring a horrible restlessness in my body and intermittently sleeping when it recedes slightly.

I know I should consider myself lucky because at least I can stay in bed. This time last year that would not have been possible but I feel like I am watching my life drift past in a misery of sleep deprivation and inability to function at any kind of normal level and I am too peevish to look very appreciatively at silver linings.

Rant over!

15 Replies
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It will depend on the dose of Kratom I'd imagine but in saying that many use Kratom to withdraw from the likes of heroin so you'd imagine it shouldn't have any big withdrawal syndrome. I've not noticed one myself, I had been taking about 7 - 14 grams a day for 3 or 4 months.

If it is the Kratom wean off slower and the RLS should abate. If its an increase in RLS you'll not get the RLS under control without using something with the patch.

Might be worth swapping Kratom for cannabis in the short term.

Hope you get relief soon, take care.

So sorry to hear of this development.

Must be incredibly frustrating after going through all the "correct " procedures.

I have no good advice to give you except sincere commiserations.

It certainly sounds like withdrawal.

A number of options occur to me.

Could you email Dr B?

Would using acombination of Clonidine and Diazepam (valium) be useful- if you have a tame Dr.

The last thing I can think of is to start using Gabapentin along with the Neupro- this is a strategy often advised by the good Dr.

I do hope you get over this.

Just on another note- I met with my new Dr the other day (old one had retired ) I was a bit worried would she continue the opiate medication- but no worries- she was delighted to have a patient who had done their reseach and had suggestions! Then I asked to change my sleeping pill from Halcion to Ambien. She was happy enough to do that- but the discussion re RLS ensued.

Oh Dear! She gives her patients Phenergan and if that doesn't work then Amitryptoline is brought out. I cautiously explained that both antihistamines and SSIs were generally bad news for RLS. Blank!

So-- a bit of work to do in that department.

I know I suggested this before- but it would be very useful if the RLSUK could publish a one page information paper for GPs- just briefly outlining the basic meds , augmentation and meds to avoid. And links to relevant useful pages.

Sorry for hijacking your post , involuntarydancer, but while you are buzzing around you might like to lay out the bones of such an undertaking.

I would be happy to organise printing etc.

Keep strong and at all costs- keep the faith - and your sense of humour.

We are all with you.

Can't help you with this boy just wanted to say hope it doesn't last very long and you found alternatives that works for you.

Stay strong.

Bx

Just been researching "Narcolepsy" - which may apply to you and raffs. One cause is long term deprivation of REM sleep.

Both of you have used kratom and it may be possible that this substance interferes with the quality of sleep and so induces the Narcolepsy.

Just a thought!😦

Cheers.

raffs
raffs in reply to Madlegs1

I wish Kratom were to blame but I rarely use it now its more a back up when the prescribed drugs fail, (although on occasions I would use it when the RLS is going mad despite all efforts and I want to rip off my legs and beat myself unconscious with them).

Cannabis I think interferes more with REM and when I stopped using it the dreams I got were very vivid, made more vivid by the fact the cannabis had been preventing dreams/preventing recall of them. I think Cannabis could be the culprit here:

herb.co/2016/05/25/sweet-dr...

Tonight I was falling asleep watching TV - well my body was but my mind wouldn't and now I am like up for the night :( and being too tired to do much I'll likely sit in a stupor :( and unfortunately no cannabis to blame it on. I think I get so exhausted and so used to fighting it that I automatically fight sleep without realising it until such times as the body says f**k you I'm sleeping and shuts down.

There was talk of investigating me for Narcolepsy but that evaporated into the ether, but I put it down to severe exhaustion; I wish Kratom made me sleep - I wouldn't be typing this now!

Great to hear your Dr is practising so well. Maybe you could brand Primum non nocere on their forehead backwards so they can see it in the mirror!

Thanks to all of you - Raffs, madlegs and Bkc for your very kind replies. After spending the whole day in bed I am, as usual, starting to come to life as the night proper commences. I feel a lot better and think it was probably very mild withdrawals I was experiencing. I read elsewhere that kratom withdrawals can last about 3 days. So far my RLS seems to be at bay though I am now wearing two x two mg patches - one from yesterday which I left on to get any residual benefit and a new one applied earlier this evening. It would be disappointing if that failed to cover the urge-to-move. I already take cannabis as an edible most evenings in an attempt to induce sleep. I take it whether I am on kratom or neupro. I don't find it has much impact on my urge-to-move symptoms but it does help sleep sometimes.

I am intrigued by your suggestion of narcolepsy, Madlegs - I really hope you are wrong - it seems a very tricky illness to manage and I doubt if Raffs would be too happy to add another condition to his already burgeoning collection either.

Also interested to read of your experiences with your G.P. Sounds like you will be able to work with her at least, even if she needs some additional education ('amitriptyline'!!!). I do agree with your suggestion for a one page document which carries the stamp of the UK RLS. It's a great idea. I would be happy to carry out any work to assist that but I don't have any connection with that organisation and would have thought they might want to produce their own document?

Your work on this site already makes you connected! They run it. Darragh Brogan ( from Galway parish) is the Chair. ☺

raffs
raffs in reply to Madlegs1

Damn good idea, in fact a bloody great one.

We've all experienced that crap where the Dr looks at you as if you've just molested their kids when you point them in the right direction. taniabacon was told that her GP didn't read info given by patients so a legitimate info sheet would carry much more weight than any of us.

Can I suggest it comes with either super-glue or a 4" nail just to make sure we can attach it securely to the Drs who don't listen? :)

To Madlegs:

First, thanks for all your helpful suggestions and supportive comments. Think it was defintely withdrawals that caused the latest crisis but, as suggested by web research, they only lasted 2 to 3 days. Still have broken sleep but am functioning much better - not miserable and actually achieving stuff during the day.

The more I think about your idea of a sheet to take to GP the better I like it and as I said I am more than happy to have a go at drafting one - to be used on RLS UK headed paper I suppose - for authenticity. Sorry to sound a bit hopeless but am just not sure about how to go about initiating it. I could do up a proposed draft and email Darragh Brogan saying that it had come up as a suggestion on the forum? I anticipate that they might have reservations about it being prepared by a non-medic (I am not a medic) - no doubt there would be the inevitable insurance implications ... It is worth a go though, if only to get the ball rolling. What do you think?

I'm all for going ahead with it- I wouldn't be put off my the nonmedical qualification-"after all - if this site proves anything - it is that the vast majority of the medical profession haven't a clue about rls and should welcome some help.

I assume Rlsuk has a medical panel that could over view the article and approve or ammend as necessary.

It wouldn't need to have a print run , since it only needs to be put up on the website under free commons to be printed by any individual for handing to medics.

Main thing is to get started- plenty of drafts will only make it better.

But ONE page is paramount.

Good luck.

Not keen on adding any more as I got diagnosed with Arthritis last week. If I was a horse someone would have taken me out and shot me by no :)

When I was a kid I used to collect Garbage Pail Kids stickers - now it seems I collect health problems. Would much prefer to be collecting super models or lottery wins :)

Nightdancer had up that the patches actually don't last the 24hrs so there will be no gain from leaving it on. I've started to put it on earlier so the levels can get back up before night and the legs have been quieter since, (keeping fingers crossed its not a coincidence).

Do you dream much involuntarydancer? I was taking cannabis for quite a long time on a regular basis for pain & RLS and since stopping have had very vivid dreams - some quite disturbing but all interesting :)

To Raffs:

Really sorry to hear of the arthritis diagnosis, Raffs. That is an awful blow. I hope you manage to maintain your good humour and seemingly irrepressible positivity.

I have been away in the West with limited internet coverage hence delay in responding.

I couldn't say that I've noticed cannabis affecting my dreams much but I always know it has been a better run of sleep when I start to notice my dreams. More often my sleep is so broken up that dreams don't get started and the knock on effect is that on nights when I do sleep, I think I have a lot of deep sleep to compensate so don't dream then either. I have had a better run recently and have had 'normal' dreams/dream recall over the last three days. The patches seem to be working much better and I am back down to 1mg patch.

I'm not sure if I have the dose of my cannabis right - maybe I need more (or maybe I am becoming habituated). It doesn't seem to make much difference to my sleep at the moment - in fact it doesn't even make me feel particularly stoned. I think the effects (or lack of them) were masked by the kratom which definitely had a very noticeable pleasant buzz to it. I don't miss it though - the patches give a much more even sleep for me.

Sorry to hear all this involuntarydancer. I hope it is just a blip

Wow. Sorry you are going thru this. I completely understand wanting to follow the proper steps to get off meds. I'm at the same point too. Hope you find a solution. I'm not at all versed with any meds or solutions just wanted to offer up some empathy. I've been there...on line in the living room all night until the sun comes up because I cant lay down. Good luck and good sleep!

Thank you for your kind thoughts, tms. Actually quite a few sleepless moons have passed since I posted this. With hindsight, it was definitely mild withdrawal symptoms from the Kratom. I have discontinued neupro as a treatment because I found I augmented too quickly on it.

The experimentation continues to find something that works so as to enable something like a normal life. The list of treatments that haven’t worked gets longer.

I never did manage to produce the proposed information sheet for GPs.

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