Restless Legs Syndrome (RLS) Discussion Board

badnights---

That's why all of these comments about medications are so fascinating! You can be SURE
of ONE thing : any slight suicidal feeling would have me OFF of the medicine right away!

Thanks for your suggestion badnights (alternating cannabis with pregabalin). I had actually already thought about it and did use pregabalin for that reason last autumn. I tried it again last week - took 50mg - but it induces all sorts of odd effects in me - numbness in my arms, tremors in my hands and strange weak feeling down my legs, tiredness, a nebulous but unpleasant 'druggy' feeling all the following day. And that's before I get to a dose that makes me tired. So I'm not sure I want to persist with it. I think I got used to the effects the last time I took it but every time I start taking it I stop again and I think it's because I just don't really get along well with it.

Your side effects sound bad.

Wierd coincidence, I saw my doctor last week and she suggested I try nabilone, a synthetic cannabinoid that mimics THC. She suggested it for sleep, rather than for symptoms. I was a bit leery - from comments on this board I think a higher ratio of CBD to THC works for WED - but I tried it last night for the first time. An hour later I didn't think it was working but then I realized I was tired - so it was more of a natural feeling of tiredness than a drug-induced one.But way too subtle, I needed my usual zopiclone and pregabalin too, and I still couldn't sleep for real until 6 AM, even though I went to bed earlier and slept soundly for the first 5-10 min...I had a hard time staying asleep for the first part of the night, as usual, but I went back to bed every time and ended up getting a total of 9.5 hours, which is unheard of. Maybe tonight I will take it earlier.

My understanding is that for sleep the THC is actually the most important. However, THC is the component that gives the cannabis high and also the psychosis, depression and other unlooked for experiences. As I understand it, CBD seems to have a tamping down effect on the THC so that it isn't so likely to cause the undesired effects. Thus, it is preferable to have a strain that has CBD as well as THC but really it is the THC you want for sleep.

As usual, I don't have the science to hand but I read it on the internet so it must be true .. There was a lot about it on one thread here - I think it was just called 'medical marijuana'. I have some pure CBD oil which is quite good for settling anxiety and was very helpful when I had panic attacks during withdrawal from Oxycontin but it is absolutely useless for inducing sleep.

Your comment about starting to sleep properly from 6 am made me realise just how much of a difference cannabis has made for me. Every night was like that, even when rls urge-to-move symptoms were under control, due to rls insomnia. Since my daughters got me some cannabis about a month ago I mostly have an almost normal night. I bake it into cookies and have one about 30 minutes before I go to bed at about 10pm. I start to get a stoned feeling about 45 minutes later and within 15 minutes of that I usually fall asleep. It doesn't always last all night and it doesn't keep me asleep if I get even mild urge-to-move symptoms but otherwise it is fantastic. I do sometimes vape some for a boost or in the early hours of the morning if the first dose has worn off and I wake up.

As it is illegal here, I don't know what strain I have. I have had two different supplies to date and one was definitely considerably stronger than the other - as in it made me feel much more stoned. That one was also much more effective in getting me to sleep but either is infinitely better than not having any cannabis. I am monitoring myself carefully as I know that Rustsmith suffered a devastating period of depression which he attributed to too much THC in his cannabis and I understand that it builds up in the system over time.

Badnights,
I took only gabapentin for years and it was effective. IIRC (& my dates may be different than what I've posted before because I've done some record checking and memory mining recently), I started it in 1995 after I had augmented on sinemet. I took 100mg whenever the RLS kicked in, which was 3-4 nights a week and anytime I flew. At that time, the RLS was only in my legs, only at night (or sometimes when I flew), and felt like bugs crawling on my bones.

I continued with that regime, occasionally taking 200mg, until 2001, when I stopped it following a miscarriage. I started it again in 2004 - my new neuro had me taking 100mg three times a day. He said it wasn't meant to be taken as needed but needed to build up like a SSRI.

Over the next five or so years, he increased the dose until I was taking 900mg 3 x day. I got stupid and gained some weight but it was working so...Then, either it stopping working or the RLS progessed beyond it's ability to help (I have it 24/7, in my legs, trunk to my bra line, arms, neck, and back or my head and it feels like little bugs biting my bones). He had me stop it (cold turkey) and switched me to clonazepam.

We retried it last fall and it did nothing for the RLS and made me suicidal. But, it, by itself, worked for a long time.

Still not sleeping...

Madmom,
thanks for that info. So there's two of you. But your success with it was prior to the time that it became a daily occurrence, if I read you correctly.

Did you get the feeling that if you hadn't been told to take it daily, a low dose of it would still be working, and your WED/RLS would not have gotten worse? Or do you think it would have gotten worse regardless?

Legsbe, Thanks for the info on which substances help what symptoms. I did look back over that thread to refresh my memory. I doubt I'll be able to move my bedtime earlier because I am on a pretty low dose of hydromorphone (for me) and it barely covers my symptoms. Part of the way I've lowered my dose so much is by letting my bedtime move later. If I take the HM earlier, it's worn off too much before the peak symptoms hit. So I can't take the nabilone earlier else I will be sleepy and symptomatic, and it also will wear off before it's needed.

That said, I took it at 11:30 PM last night instead of 2 AM, because it seemed to linger and cause sleepiness all day. But the same thing happened today. It's only two nights, not enough to be sure, but I was always ultra-sensitive to smoking pot back in the day - small amounts made me so nauseous I had to fall asleep to avoid puking, or it simply put me to sleep without nausea - so maybe the nabilone is the cause.

Madmom, I am very sorry to hear things are still bad for you. Are you still taking some pramipexole/oxycodone? Or are you solely on clonazepam? Symptoms 24/7 is very hard to bear. Rachel

Madmom - that all sounds pretty grim. I also have symptoms 24/7 and take a myriad cocktail of medications in order to control it. My ropinerole is too high, a throwback to the days before it was decided that a max dose of more than 1mg was acceptable.

You have talked about Gabapentin, I do have some that the GP gave me for shoulder pain. Initially I thought, yippee .... this will be useful for my RLS, but actually I'm reluctant to use it for the reasons you mention. I'm carrying extra poundage as it is, (thank you steroid medication) and also I think from weird uncontrollabl overeating which I think was compulsion from the ropinerole when I'm on my nocturnal wanderings.

But especially as you mention, the Gabapentin side effect of possible depression. I take a very low dose of citalopram and don't want to do anything that could possibly upset the equilibrium. i can very easily become over anxious and over thinking, the citalopram helped me deal with this, and now I am down to 10mg which is probably now only a psychological crutch that I fear releasing.

I note the members who have mentioned their Gabapentin induced depression and my heart goes out to them.

It takes a real determination to cope as you do with symptoms also in torso/neck/head......

I am gradually coming to the view that the dopamine agonists (in my case pramipexole) do something subtle but weird to our appetite. In the 10 years or so I was on it, I gained nearly 30 lbs. I never thought this was attributable to the drug - just to overeating - in particular sugary substances and carbs. But since I came off it last year, without even really trying, the weight has gradually come off. I have lost nearly 20 lbs and that is notwithstanding a blip in the Summer when I was on pregabalin and put on 8 or 9 lbs.
What is most noticeable to me however is that I seem to have recovered my original attitude to food - sure, I still love the sweet stuff, pastries, cakes, chocolate etc - but I don't eat it in the compulsive way I did when I was on pramipexole and not with the same grim determination. I feel like I did when I was much younger in my attitude to food - kind of lighter and less in thrall to it. I'm wondering if it is something to do with the dopamine receptors - the sweet stuff seemed to give me a bigger rush of dopamine when I was on pramipexole.

Dopamine meds all carry the risk of increasing compulsive behaviors. For many, this is eating since it is a social thing and is usually enjoyable, especially the things high in sugar and carbs. For a smaller group, it is compulsions for shopping and or gambling. Given a choice in the matter, I suspect most of us would choose the option of 30 lbs over destroying our credit and/or savings.

I got the internet shopping thing really bad. Not only did it deplete financial resources but a huge amount of time shopping online. And now I have too much stuff - far too much stuff - even taking it to the charity shop is a daunting task. And we are moving to a much smaller house this summer ... Lucky I finally came off the d/a

Rustsmith wrote:Dopamine meds all carry the risk of increasing compulsive behaviors. For many, this is eating since it is a social thing and is usually enjoyable, especially the things high in sugar and carbs. For a smaller group, it is compulsions for shopping and or gambling. Given a choice in the matter, I suspect most of us would choose the option of 30 lbs over destroying our credit and/or savings.

Unless you are diabetic or compromised in some way and what you are eating will kill you.

I want neither option!