Cannabis

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.
QyX
Posts: 397
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Location: Berlin / Germany

Cannabis

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.

stjohnh
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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.
Blessings,
Holland

badnights
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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
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

QyX
Posts: 397
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.

ViewsAskew
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Re: Cannabis

Postby ViewsAskew » Wed Dec 12, 2018 7:47 am

You certainly have had a difficult time of it. I can see why you feel as if you are in some kind of different reality.

Hope this approach helps.
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.

QyX
Posts: 397
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Sat Dec 29, 2018 2:31 pm

So here is a little update on CBD:

it is neither sedating nor activating however it does have significant antidepressant, mood stabilizing effects and drastically improves sleep stages, especially REM sleep. Unfortunately falling asleep at a normal time is as difficult as always and analgesic effects are poor.

Still, overall I feel more relaxed, less anxious and being able to dream again is quite nice. So without any doubt, CBD has positive effects but as other people stated, for staying asleep and falling asleep, THC seems to be needed.

And from the beginning my doctor made it clear that CBD is just the beginning and THC will be added in the next weeks.

This was all about learning in what positive and maybe negative ways CBD affects me.

This of course now will make it much easier to determine what effects THC will have on me.

As she told me at the last appointment, the next step will by adding a Cannabis extract which contains THC and CBD at a ratio of 1:1.

I will update this thread as soon as I have more to say and hope that other people can share their Cannabis stories.

Cannabis seems to have quite a potential when it comes to RLS ... but as I see it, the more severe cases will still be dependent on opioids but maybe Cannabis is a way to keep opioid doses within those magic CDC guidelines that unfortunately became law in some U.S. states.

I have some hopes to cut my opioid dose by about 1/3 but I am not sure how realistic this really this.

At the moment nobody really knows how my RLS and my overall mental health will respond to long term exposure of a THC / CBD combination.

The prescribing doctor is quite excited about the experiment and I am trying to not get my hopes up.

My recommendation for the moment is the following: if you are suffering from depression related to RLS ... before trying the regular antidepressants who most of the time worsen RLS symptoms, maybe give CBD a shot. But get it from a place where you can make sure that it really contains CBD.

I am using a oily CBD solution that contains about 5% of CBD. One drop solution is about 1,3 mg of CBD and at the moment I take 10 drops in the morning and 10 drops in the evening.

stjohnh
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Location: Palo Alto, California

Re: Cannabis

Postby stjohnh » Sat Dec 29, 2018 3:04 pm

QyX wrote:So here is a little update on CBD:

it... drastically improves sleep stages, especially REM sleep.


Is this a comment from the literature or its effects on you? If on you, how did you determine this?
Blessings,
Holland

QyX
Posts: 397
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Sun Dec 30, 2018 12:58 am

stjohnh wrote:
QyX wrote:So here is a little update on CBD:

it... drastically improves sleep stages, especially REM sleep.


Is this a comment from the literature or its effects on you? If on you, how did you determine this?


This is my own experience. I don't remember dreaming much in the past years and when I did, it was basically always associated with bad overall sleep quality.

Now when I manage to sleep, no matter the time, during the day or at some point during the night, I feel much more rested and the hypersomina I had in the past, often sleeping from 7 am in the morning until late into the evening and still feeling tired and without any energy, this is now gone.

And the way it feels, it seems to be connected to CBD since I had the change directly after starting CBD and the effect is ongoing.

However, as I mentioned before: I still have severe trouble sleeping at night ... and even when I manage to do so one night, it wont be possible the next day, even when I get up super early and stay active all day long.

So taking CBD is as 1st setup but unfortunately not enough.

As far as the evidence goes, I am not aware of any evidence that shows how CBD is affecting RLS or overall sleep quality.

Some people experience CBD as stimulating, others as sedating and the effects are also dose dependent. But since CBD has little to no side effects, I guess there is no harm in trying CBD. You just have to make sure that whatever you buy really contains CBD.

badnights
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Re: Cannabis

Postby badnights » Sun Jan 06, 2019 7:22 am

My prescribed buccal spray contains 2.5 mg CBD and 2.7 mg THC per dose. I use 2-3 sprays a night, so about 7.5 mg CBD. I don't notice any difference in the quality of my sleep.

When I was travelling last September, I tried a similar product, a non-prescribed water-based tincture, and I was able to sleep without zopiclone 3 of the 4 nights I used it. So one night recently, I tried 5 sprays to see if I could eliminate the need for zopiclone. The result was a ruined night. I was awake and disturbed - stoned I guess, but a really weird stone, it was exceedingly unpleasant - all night except for about 2 hr in the morning when it finally wore off. I don't even know what I was doing most of the night. Not sleeping, wandering around unhappy and frustrated, eating, who knows.

The spray is still useful at the lower dose, but I need to supplement it with zopiclone. So I will look for something with less THC, maybe 2:1 CBD:THC. I have no idea if such stuff exists but even if I continue with the 1:1 stuff, I will check the price at the liquor store (now also a marijuana store since the stuff became legal here in October) because the price of the prescribed product was outrageous even with my insurance covering most of it.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

QyX
Posts: 397
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Wed Jan 09, 2019 5:44 am

Here is another little update. So after about 1 month of CBD use I can say that it has stimulating properties. The first I think I noticed that I had trouble sleeping even around a time where I normally don't have any problems. I did not know what to make of it. Sometimes the situation simply worsens and you can't really tell what's causing it.

However yesterday I forgot to take CBD at night and I was able to sleep during a time where it is normally almost impossible for me to sleep. Unfortunately this my sleep was interrupted by classic RLS symptoms and a urge to move which made me get up.

So maybe this points to a solution. Higher doses of pure CBD in the morning and only a small dose of CBD in combination with THC for the night. Or maybe even nothing at all. I have to see if this pattern is consistent and will continue in the next days. Also at the moment it is hard to predict how THC will affect since I haven't used it in years and I won't have any until my next appointment which is at January 22nd.

Polar Bear
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Re: Cannabis

Postby Polar Bear » Wed Jan 09, 2019 6:53 am

I hope this proves positive for you.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

QyX
Posts: 397
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Tue Jan 22, 2019 5:02 pm

Okay, so today I got my 1st prescription for Savitex which contains THC & CBD in the same ratio as the buccal spray. I have to say the spray is really expensive (314 EUR for 3 x 10 ml) and it will be a long and most likely complicated battle until my insurance will cover the cost. For the CBD I pay 115,00 EUR for 20 g.

It's been a long time since I smoked Cannabis the last time. So I have no idea what my response to THC will be.

I will keep you guys posted and hope that others can share their experience with Cannabis here.

At least in theory Cannabis could be one of the most important substances to treat RLS and it could especially help to avoid opioid tolerance and keep the opioid dose lose and additionally could help to maintain sleep.

I am optimistic but I also try to not have too much hope.

I was told to start with one spray at night and then slowly increase the dose by one spray per day. Also the prescribing doctor told me to use it in the morning too.

When I remember correctly:

day 1: one spray at night
day 2: one spray at the morning, one at night
day 3: one spray in the morning, two at night.

In addition I take 10 drops of CBD in the morning and 5 drops in the evening. The CBD should help in avoiding a high during the day. I hope it works because I could not stand being stoned during the day.

QyX
Posts: 397
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Wed Jan 23, 2019 11:28 am

So I started yesterday instead of the original planning with 4 sprays instead of only one. The reason is that I was told yesterday to come see my neurologist early in the morning. Normally when I have an appointment in the morning, I have to pre-plan this for 2-3 days to make sure Clonazepam works as a sleeping medication.

However because of other appointments I had, I already used Clonazepam two days in a row and because my brain is so weird and strange, it only works 2 days in a row and then I have to take a break of 10 to 14 days before it will work again.

This appointment today was very important and I somehow had to make sure I will be there. And the spray was the only option I had.

I started with 2 sprays but after two hours the effect was only minor. One reason could be that I also had taken a higher than normal CBD dose in the afternoon since I forgot to take it in the morning. The effect I had at first was analgesic and it seemed to have some muscle relaxant properties. But I did not get tired and was awake as always even though I got up at 3:30 am and was in town until the evening.

So I decided to take two more sprays since I saw no other option to get tired. And ya, one hour later I could feel the effect of the spray. At some point I was definitely a bit stoned. My mood improvement, my muscles and overall body felt relaxed and I finally developed some appetite since I barely did eat anything in the past two days. I simply was not hungry.

So I started eating and damn, even though I was eating nothing special, the food did taste amazing. It reminded me of my experience with Cannabis when I was 18. After one more hour I really felt like I smoked a real joint which was so weird. I felt almost the same just there was no taste of a joint in the air but feeling like I did smoke one was so weird. I kinda did not expect that the effects would be so strong and they got stronger each minute.

In the end my brain finally started slowing down and started to think less. Normally my brain just likes to think and think and think and always finds something interesting to think about. I would say that this feeling is kinda the main reason we hy I can't sleep. So to experience how my brain was slowing down and finally started resting was very interesting.

In the end I maybe slept 3 to 4 hours max. It was not much considering that I was awake for 24 hours and had spent almost 10 hours walking through the town. But still ... normally I would not have slept at all. So this was still something and much better than nothing and missing the important appointment.

So maybe, just maybe Cannabis / THC will help my establish a more or less normal day / night routine.

Also I still feel pretty good today, relaxed and somehow optimistic. Because I took a higher dose than prescribed yesterday, I skipped the morning dose of one spray and only took it just now.

Overall I must say I was really surprised how potent the spray was. With all the CBD I take daily I did not expect such powerful THC effects.

I have no idea how this will continue but I must say it is super interesting. The analgesic properties of THC in combination with opioids seem and I can see how there is a big chance that Cannabis could maybe fix my sleeping problems.

For the moment I am just happy that I did not develop anxiety, feelings of paranoia or hallucinations which were effects I had in the past when smoking Cannabis with concentration of THC as a teenager.

I will update this thread as soon as there are interesting developments.

For now I will the spray as prescribed.

So today: 1 spray around noon ... 1 at night
tomorrow: 1 spray in the morning ... 2 at night

and then it goes 2 / 2 ... 2 / 3 ... 3/3 ... 3/4 .... 4 / 4 and so on

However considering how "stoned" I was yesterday I kinda can't imagine taking 4 sprays in the morning and in the evening ... and then increase up to 7 sprays in the morning and 7 in the evening on day 14.

The prescription guide says that depending on the effect I should take a higher dose in the morning in case THC is stimulating and a higher dose in the evening in case it is working as a sedative.

But still, at the moment I just can't believe I will tolerate 14 sprays per day. Without a doubt I would be super crazy high or stoned for many others. When I was smoking Cannabis as a young adult with others, I recall that I was always a bit more sensitive to Cannabis and never really developed a relevant tolerance.

My doctor told me that she has patients with Multiple Sclerosis who take up to 50 sprays per day. (That dose would cost about 70 EUR daily, just for Cannabis!) ...

At the moment I don't expect that I will ever tolerate more then 10 sprays per day but sure, it will also depend on my additional pure CBD intake.

I must say, this is all super interesting and somehow very weird. I never ever would have imagined that I will get a legal prescription for Cannabis from my doctor without even asking for it when I was a teenager. And now Cannabis is kinda my last hope of finding sleep. Maybe I should have never stopped smoking it but I lost all interest in Cannabis because of the stigma and so many doctors were telling me that Cannabis is bad bad bad. Now everyone I seem to meet trying Cannabis is a good idea. They even said so in the pharmacy when I handed them my opioid prescriptions.

stjohnh
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Re: Cannabis

Postby stjohnh » Wed Jan 23, 2019 2:49 pm

QyX wrote:So I decided to take two more sprays since I saw no other option to get tired. And ya, one hour later I could feel the effect of the spray. At some point I was definitely a bit stoned... In the end my brain finally started slowing down and started to think less... In the end I maybe slept 3 to 4 hours max.

The prescription guide says that depending on the effect I should take a higher dose in the morning in case THC is stimulating and a higher dose in the evening in case it is working as a sedative...


Yay!! I'm glad something is working for you.

There is lots of evidence that the insomnia of RLS is fundamentally different than the more common insomnia of other patients. RLS patients rarely respond to commonly prescribed sleep meds, dipyridamole helps some of the insomnia symptoms in RLS patients, etc etc.

On this board it is commonly noted that for cannabis preparations to help RLS patients sleep, they need to have enough THC to feel at least slightly stoned. The common advice given to insomnia patients (most that don't have RLS) at cannabis dispensaries is "take indica strains or strains with high CBD ratios for sleep." That doesn't work RLS patients, doesn't seem to matter what strain, must have enough THC to feel stoned.

I recently had an interesting experience highlighting how RLS insomnia is different than common insomnia. I had been taking pramipexole, cannabis, kratom, gabapentin, and dipyridamole nightly. The pramipexole for urge to move, the rest for aspects of sleep. (Cannabis to fall asleep, gabapentin and kratom to help sleep through the night, dipyridamole to help restore energy during the day). 7 weeks ago I got my first set of IV Iron infusions. When the iron kicked in, I thought slowly reducing all my other meds would be the best course to take. I dropped off the pramipexole first (since the residual mild urge to move symptom I had previously had completely resolved). No problem with urge to move after stopping pramipexole, however I couldn't sleep, in spite of taking the 4 other meds which previously helped my sleep a lot. Next night I stopped all my meds except kratom (thinking it especially needed to be tapered as it stimulated mu-opioid receptors. Kratom is one of the very few meds that helps both common insomnia and RLS insomnia). Slept quite well.

Anyway, all this is to emphasize that RLS sleeplessness is different than other types, and it is likely the THC is the crucial component and the CBD may be irrelevant.
Blessings,
Holland

QyX
Posts: 397
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Wed Jan 23, 2019 3:17 pm

My doctors says that THC will help you fall asleep and CBD helps with staying asleep.

I don't know if that is true but normally when I am super tired and I kinda could sleep, suddenly my RLS symptoms can get totally cray and when I have to finally other under control with opipids, I am white awake and there is no more point in trying to sleep.


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