My MM experience

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
ViewsAskew
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My MM experience

Postby ViewsAskew » Fri Nov 11, 2016 11:44 pm

So far, I'm not encouraged by it. We'll see.

Because I didn't want to spend a LOT of money on a real vaporizer that doesn't get so hot, I opted to try a vape pen and oil. I went with a 3-1 CBD to THC because I mostly wanted it to knock me out. I didn't change my prescription meds.

First night I puffed so lightly, not sure how much I got. I slept heavily for most of the night, but each time I did wake up - very zombielike - I was stretching my legs. For me, that is what I call pre-RLS. It's the sensation I get before I get the full-on willies. All day I was sooooo tired. I normally walk the dog at least an hour and then go for a walk later for another hour. Dog and I went to the easiest walk - flat, no hills - then came home in 30 minutes and I went to bed at 10:30. I can't tell you when I've done that!

That second night, I puffed a bit harder - burned my throat - and will not be doing that again! I woke up at about 1:30 with mild symptoms, but really out of it. I bumped into walls on the way to the bathroom, came back and fell asleep while doing legs exercises. I woke up about ten more times with pre-RLS.

As I type this - about 2 in the afternoon - all I want to do is go back to sleep. It's much like gabapentin for me.

I am going to give it a couple nights off. I am going to switch my meds around so that I'm only taking pramipexole and no methadone. Then I will try again.

I also bought a creamy mix of coconut oil, essential oils, and cannabis for my knee. I have chondromalacia and it's been acting up lately. Definitely takes the pain away for a few hours.
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.

leggo_my_legs
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Re: My MM experience

Postby leggo_my_legs » Sat Nov 12, 2016 8:47 am

Good for you for experimenting! We can only stumble on what works by trying different things, right? Was your sleep at least restful on it? I wonder if edible might be more gentle? Your plan of a drug reset sounds good. I hope your knee feels better!

ViewsAskew
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Re: My MM experience

Postby ViewsAskew » Sat Nov 12, 2016 7:21 pm

Indeed. I think it was restful, but I was so tired the day after that I didn't feel rested. But it may not be related to my sleep. No idea.

Last night I intended not to take any. But when I got to the pharmacy to get my methadone script, it wasn't there. Dr B's main admin is on pregnancy leave. So, the email asking for the script went unanswered. I sent on Thursday late, so, wasn't surprised when there was no answer on Friday. I figured I'd call on Monday. I ended up having to do something and couldn't call until Tuesday. They submitted and I talked to the pharmacy who said they would order it and it would be there Thursday or Friday. Not hearing anything, I went on Friday at about 6 PM. Not in stock. It's an e-script and cannot be transferred. So, after 8 days, the stash I had with me in California is down to 3 halves. I had a bit of a meltdown at the pharmacy. The pharmacist said that just because they order it doesn't mean they get it - it's up to the manufacturer. Then change manufacturers! That is ridiculous. Because it's schedule II, there are no options when it's out. More care should be taken to ensure it is available.

Since I didn't intend to jump from 15 mg to 2.5 mg of methadone in one day and increase the pramipexole so much, I decided to take a tiny puff before bed. Pramipexole makes me have very fractured sleep. I woke up about the same as I would without having had any. But the puff was SO tiny, I am not sure.

To your point, edibles might be better because I am having a really hard time regulating how much to puff. I didn't want to use them because Dr. B said they are in your system for MUCH longer (though I haven't looked that up) and longer is usually bad for me since I tend to be sensitive to things that make you sleepy/tired the next day.

In the meantime, just hoping I can get through the weekend with such a small amount of methadone without going into withdrawal. I tend to have very minor withdrawal symptoms, so it shouldn't be bad. Of course, my kratom is in Chicago...so can't use that, either.

Thanks for asking about the knee. Icing, ibuprofen, reducing activity, and doing PT exercises - should be better soon.
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.

Polar Bear
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Re: My MM experience

Postby Polar Bear » Sun Nov 13, 2016 3:02 pm

Ann, what a palaver - to not get your meds on time.... to have the fear of not getting your meds on time.... what a stress !!

Do you have any idea when your med will be available?
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

legsbestill
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Location: Dublin Ireland

Re: My MM experience

Postby legsbestill » Sun Nov 13, 2016 9:26 pm

What a nightmare, ViewsAskew; an absolutely dreadful concatanation of events. I really feel for you and hope you manage to get your meds sorted soon. Good luck with the mm experimentation. It is so useful to hear of your experiences. I hope you will continue to post about it.

ViewsAskew
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Re: My MM experience

Postby ViewsAskew » Sun Nov 13, 2016 10:02 pm

Yeah, it's truly unbelievable. Yet, so true.

The pharmacist suggested I go to urgent care. $80 on my insurance. So, since I had 2.5 mg for each night until Monday, I decided to wait. I'll call Dr. B's office then and either ask for a hard copy script I can take anywhere, or call pharmacies first to find one with it in stock and have an electronic script sent. It's a bit of a drive to Dr. B's - but will absolutely do it if I need to.
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.

legsbestill
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Location: Dublin Ireland

Re: My MM experience

Postby legsbestill » Sun Nov 13, 2016 10:57 pm

I really hope you don't have to make the drive and everything can be sorted with less of a strain for you - also that the 2.5mg will suffice and you get some rest in the meantime.

ViewsAskew
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Re: My MM experience

Postby ViewsAskew » Mon Nov 14, 2016 4:29 am

Yeah, so much for the rest theory, lol. I HATE pramipexole alone. I like it half and half with methadone - they each counteract some of the worst in the other. But alone? Constant crazy thoughts, songs in my head, all while being tired, but not able to stay asleep. I took a gabapentin last night and it helped a bit, but not nearly enough. If I take more, though, I'll be non-functional the next day. Legs are not too bad - really shouldn't complain , but certainly aren't quiet as when I take methadone or a mix of the two.

Oh, and I dropped on of my methadone tablet halves....I went on a protest march (that was fun and kept me from thinking of my legs) and had to take my meds in the dark while walking. Oops.
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.

legsbestill
Posts: 299
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: My MM experience

Postby legsbestill » Mon Nov 14, 2016 8:37 pm

It just keeps getting worse!

Well done for the protest march but bloody bad luck to drop the precious methadone half.

It is very interesting though to hear you on pramipexole and methadone. I knew you took the two but not exactly why. Also, if you don't mind my asking, how much gabapentin did you take? I have a load of pregabalin left over from earlier in the summer and I decided to try 10 mg last night to access some deep sleep which I don't seem to be getting at all with OxyContin and neupro. I had a wonderful, restful sleep for nearly 10 hours which was obviously bliss but inevitably felt dopey and lethargic today.

I really hope you get the methadone script sorted today.

ViewsAskew
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Re: My MM experience

Postby ViewsAskew » Tue Nov 15, 2016 5:25 am

I took 20 tablets today at the pharmacy - that will get me up to 10 days to find a place to get the rest. So, at least no more withdrawal. It makes it feel like RLS in the arms and trunk. Dr. B says this isn't truly RLS, and it is a bit different, but it's very similar and RLS meds don't cover it.

I called the doctor multiple times, never got through. Will keep trying tomorrow. His office mgr is on maternity leave and they clearly are not handling it all well without her. The phone was on for the service during office hours - then sometimes it would be busy. At least I got something.

Long story on the drugs I take...I took pramipexole for severe PLMS. Within 7-10 days, I augmented and had RLS daily (up until then I had it very mildly and not very often). Doc said to take more, and more, and more, until I had 24/7 RLS. Using an opioid to stop the augmentation worked, but symptoms never went back to what they were. They did reduce some - only 16 hours a day now, lol. Because I have tolerance, I wanted to reduce my opioid intake - I went from 10 mg to 25 over a few years. So, in 2008, I think, I started alternating methadone and pramipexole every two days. Over the last few years, I've played with how I do it to minimize the withdrawal effects of stopping it methadone quickly. Since I've had two infusions, I've found I can take pramipexole up to 4 weeks without augmenting - but really hate that drug's side effects. I get the best results with about 50% methadone and 50% pramipexole.

So, I go from only methadone to 90% pramipex0le/10% methadone and back over about a three week period, always taking at least 3-4 days with no pramipexole. When I reduce the methadone a certain point, I need something extra to keep me asleep. Pramipexole oddly makes me very sleepy initially, but after a couple hours I start awakening with increasing frequency until I'm waking every few minutes. That's where gabapentin - and now hopefully MM - comes in. I usually shake out about half the capsule - more than that and I'm a zombie the next day.

Long story as short as I could make it!
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.


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