Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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.
Posts: 360
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany


Postby QyX » Mon Nov 26, 2018 9:25 pm

So today I got a call from my doctor. She wants me to go see a specialist who has experience with prescribing Cannabis.

I had to laugh so hard. Like jeez. I never mentioned it to her. It was completely her own idea and the way she sounded, she honestly seems to believe Cannabis could make a difference. This is so weird and at the moment I don't know how to feel about it. When I was younger, like 17, 18, 19 I used and abused Cannabis like many other teenagers. The first couple years were great and it helped me sleep which way I always had so a hard time stopping it.

But then my sleeping issues became more severe, I started smoking way too much and together will all the family, the psychological consequences of the suicide of my father when I was 16 together with a genetic vulnerability for mood swings and psychosis, I developed a full blown psychosis, most likely not caused by Cannabis but for sure it was a factor.

After that episode I did not tolerate Cannabis anymore. It always made me anxious and paranoid. So I stopped smoking it and only after a few years went by I started trying it again. I started enjoying it again but it was not as exciting as before. I did not feel any need to smoke and started to prefer a clear head more and more ... and so over the years I basically lost all interest in it and only smoked when I was with friends who were "really into it".

Anyway, the younger people in Germany probably just smoke as much as the teenagers in the U.S. but when it comes to the older generations, most people are sceptical about Cannabis. There is no political majority to legalise Cannabis like it is legal in states like California however a majority wants that Cannabis is available via prescription in cases where conventional treatment options don't work.

So my case: I tried more than 50 different drugs and I can honestly that I have absolutely no clue what else I could try. And what the hell, I am taking opioids more potent than Heroine so what's the big deal about trying Cannabis? I don't know. It is just so weird. I met so many doctors who are sceptical about Cannabis or believe it is the devil himself.

I am fully aware that we now have quite a lot scientific evidence that suggests that Cannabis is an effective treatment in all kinds of disorders like some rare forms of epilepsy, multiple sclerosis and chronic pain in general.

It is just so weird that it seems so logical and natural for my doctor to tell me to go see a doctor she knows and get a prescription for Cannabis. I have to admit, the thought of trying medical Cannabis crossed my mind too but in the end it always felt like a stupid idea and I never would have thought she would be open minded about it.

For a long time I believed there is some magic drug that can solve my sleeping issues but after trying every available drug on the market, the conclusion is that there is none for me. Just some pills to improve the situation and take away the pain but nothing that lets me function in a normal way.

It is so weird that this is happening to me ... feels so unreal, like I'm in the wrong movie .... it is both, funny and frightening ... frightening because I am already developing new hope and I'm afraid that this will be just another big disappointment.

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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Cannabis

Postby stjohnh » Tue Nov 27, 2018 12:52 am

Well, good luck. You certainly deserve some considering how much trouble you have had. I use cannabis edibles every evening to help me sleep. My experience, and I believe the most common experience of RLS patients trying cannabis, is that it doesn't help for urge-to-move symptoms. Many say it helps sleep, but some don't seem to get any benefit at all. In California, the vendors usually say, "use indica strains or high CBD strains" to help sleep. That advice may help for the common insomnia problems, but doesn't seem to help the RLS sleeping problems. I definitely need the THC or it doesn't help. I take edible cannabis that has 15mg THC every night.

I also take kratom, gabapentin, dipyridamole and 0.0625mg pramipexole every night. This does a very good job controlling urge-to-move symptoms, gives me 7-8 hours sleep nightly, and I feel moderately energetic until noon, at which time I start feeling progressively more tired and irritable. I make sure that my dose of pramipexole is low enough that I have some urge-to-move symptoms in the early evening. I believe that helps to reduce recurrence of the augmentation I suffered 2 years ago. I have been on this regimen for over a year now with no dose increases or symptom worsening.

Kratom and pramipexole control urge-to-move. THC and gabapentin help me fall asleep and stay asleep. Dipyridamole helps me feel a lot more normal (less like a zombie) during the day.

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Location: Northwest Territories, Canada

Re: Cannabis

Postby badnights » Sat Dec 01, 2018 6:08 am

feels so unreal, like I'm in the wrong movie .... it is both, funny and frightening ... frightening because I am already developing new hope and I'm afraid that this will be just another big disappointment
I tell myself there's nothing wrong with going thru life in experimental mode. Everything you try is an experiment. What works now won't work later, and conversely, what didn't work before will work at some point. None of it is worth getting excited over. I tell myself.

I hope you sleep, QyX
Beth - Wishing you a restful sleep tonight
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Posts: 360
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Tue Dec 11, 2018 4:15 am

Okay, some interesting news. Yesterday I had the appointment.

We will start with a CBD only solution to evaluate my response and see what CBD does and doesn't do for me, what symptoms improve and which doesnt or if there is any affect at all before we later add THC as an extract where you have THC to CBD in a 1:1 relation. If needed of if I want to try it, I can also have regular weed for inhalation, for example at night when I have the most severe RLS symptoms.

She also treats ADD / ADHD with Cannabis so it seems I just ended up at the right place. And because all the conventional therapies failed or are not sufficient is just the perfect argument to experiment with Cannabis. There is simply nothing else left to try and under this circumstances my chances that my insurance will cover the cost are very very good.

So this will be a up after very interesting thing to try and it is so much more complex than I thought. I also absolutely love her systematic and scientific approach. It is kinda rare to find a patient who is so bangged up, already tried all the stuff a doctor normally would prescribe.

I had a really good day yesterday, haven't felt that optimistic in a long time but even though I was awake from 02:00 am and was crazy tired at 7 pm in the evening ... I fall asleep within a couple minutes ... but only woke up 4 hours later when my RLS said hello and even with Benzos and everything, I was not able to go back to sleep.

Seems like that my brain doesn't like Benzos again. I wish I would understand why. If they would work reliably, they would be such a nice tool but they only work when they want to work. No idea why this is happening to me all the time and none of Doctors even have a theory.

Honestly, my brain is so messed up, it is wired very different from normal brains. Everything seems to work different except for opioids and a couple of antiepileptics. But everything else is either just not working or makes everything worse.

Maybe I should have looked into Cannabis years earlier ... however I was so afraid of getting seen as someone who just wants to get high and just can't enough since I am already taking opioids and from time to time stimulants for my ADD.

Again I am starting to feel that I live in some kind of different reality. How can that be that I seem to all those "junkie" meds. Sure, I understand the medical reasons behind it but explain this to the public.

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