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: 514
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Fri Feb 15, 2019 12:24 pm

So a couple days ago I started taking Melatonin again, first day 5 mg but now it seems 2,5 mg is already enough. Melatonin always made me tired and sleepy but I was forced to stop taking it since even a small dose was causing RLS related pain. However with the Cannabis, this is no longer an issue, it seams.

One of my main problems, aside from RLS itself was always that I don't get tired at night. It is more or less completely random when I get tired but unfortunately almost never at night.

For now, the main problem is that THC affects me for too long the next day. However this can be solved easily once I get a prescription for cannabis flowers at my next appointment so that finally can inhale.

The spray is a nice thing to have but I found out that your eating habits can have a crazy strong influence on how much cannabinoids get actually absorbed. I read a german study from January where it says that fat can increase the absorption of cannabinoids in the stomach by up to 300%, depending on how much fat you take together with THC and / or CBD.

So in the past days I tried to eat the same every evening when I take the spray and my results got more predictable. However it can also happen that I fall asleep fast and then I wake up hours later because suddenly the THC starts have a stimulating effect. It is not that big of a deal and the stimulation goes away after about an hour ... but ya, it could be better.

So I can't wait to get my hand on cannabis flowers.

In the end, this finally points towards a real long term solution for my problems. Also I am happy to report that I have no psychiatric side effects from THC except the classic THC effects during a night. Overall a high dose of CBD in the morning is very helpful in reducing THC side effects and improving sleep at night.

QyX
Posts: 514
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Tue Feb 26, 2019 5:39 pm

Okay, I have news.

Today I finally got a prescription for Cannabis flowers. My doctor prescribed 3 different strains ... one with high THC (14%) and low CBD (0,1%) ... 2nd one with high CBD (12%) and low THC (0,5%) and a 3rd strain where THC and CBD have about the same concentration (6,8% THC & 8% CBD).

Luckily I live in Berlin where we have a few pharmacies who have Cannabis flowers on stock. Otherwise it can take several months until a pharmacy can deliver the flowers. The demand is currently way higher than the supply because Germany currently imports 100% of its medical Cannabis from countries like Canada, Austria and the Netherlands.

Together with the flowers I got a medical Vaporizer. If you are interested about the Vaporizer, this is the device I got prescribed: https://www.storz-bickel.com/us/en/mighty/ ... I have to say, it is a super neat device which also works on batteries and it even fits in a normal pants pocket.

For now the situation is like this: I can sleep when I take a little bit of Melatonin (2,5 mg) together with the Cannabis. The big problem with the spray is: it is almost impossible to predict how long it takes for the spray to have an effect. And the effect itself is hard to predict. One evening I take 4 sprays and it is great ... and the next day, I take 3 sprays and I am completely overdosed. Sometimes it can take less than 90 minutes for the full effect ... and on other days I barely have an effect after 4 hours. What I eat and drink during the day and after I used the spray influences the way I respond to the spray a lot.

Also, the spray just affects me too long into the next day which can make it really hard to get out of bed. While I normally feel great in the afternoon, I often get nothing done in the morning.

So for now doctors orders are to reduce the spray dosage and use it as a baseline medication. Then use Cannabis flowers depending on how my symptoms are. A big problem with the spray is that when you realize late at night ... "oh, I did not take enough" and then take something extra ... a) it will take quite some time until you have the effect ... and b) it will impair you the next day even more.

So I think especially when you need Cannabis only for pain and sleep management at night, smoking / inhaling Cannabis is the best option. You get an effect within only a few minutes. It is way easier to control the dosage .... overdosing and "underdosing" (is this even a word) is super easy with any form of oral Cannabis medication. Doesn't really matter if it is a spray, an oily solution or cookies. Especially when you have not much experience with Cannabis you might accidentally overdose with oral Cannabis versions. You have to keep in mind that it can take up to 4-6 hours for the THC to show its full effect.

Anyway, for the moment I really like the analgesic power of Cannabis. My overall body feeling is so much better ... and my doctor and her assistant told me that I appear way more relaxed, less anxious and socially engaged. I was a bit shocked that it was so obvious that my condition was so bad.

So at least for the moment I am really optimistic that my situation will improve further. It is really nice to have all the options with 3 different strains and there are more available in case things do not work as I want them to work.

And I think especially the low THC / high CBD strain is a very nice thing to have. I can get instant benefits of Cannabis without getting high or stoned.

I kinda feels like I am getting premium deluxe treatment compared to other patients. Here in Germany, it is so hard to get a prescription for Cannabis ... and even when you have one ... as long as you do not live in a liberal state and a big town, you will have a real hard time finding pharmacy to fill your prescription. And overall, we currently only have maybe 15.000 to 20.000 patients in total who get medical Cannabis. In a country with over 80 million inhabitants and millions of people who smoke street Cannabis it is a disaster and a shame that only a few patients have access to it.

Anyway, I will keep reporting and in case you have any questions, feel free to ask.

stjohnh
Posts: 953
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Cannabis

Postby stjohnh » Tue Feb 26, 2019 6:01 pm

QyX wrote:Okay, I have news.

...
So I think especially when you need Cannabis only for pain and sleep management at night, smoking / inhaling Cannabis is the best option. You get an effect within only a few minutes. It is way easier to control the dosage .... overdosing and "underdosing" (is this even a word) is super easy with any form of oral Cannabis medication. Doesn't really matter if it is a spray, an oily solution or cookies. Especially when you have not much experience with Cannabis you might accidentally overdose with oral Cannabis versions. You have to keep in mind that it can take up to 4-6 hours for the THC to show its full effect.

...


And I think especially the low THC / high CBD strain is a very nice thing to have. I can get instant benefits of Cannabis without getting high or stoned..


My experience with oral cannabis (as commercially prepared brownies, cookies, etc) was it was reliable and predictable. Interesting that your experience has been different. I usually took 15mg of THC (with an unknown amount of CBD- they are labelled only with the THC content) 2 hours before bedtime. Ninety minutes later I felt the effects (slightly stoned) and by bedtime very sleepy, stoned feeling, and easily fell asleep. No stoned feeling when waking up in the morning.

It will be interesting to hear your experience with the high CBD preparations. The experience of many on this board is that (contrary to popular press), RLS patients need a substantial amount of THC to get improvement in sleep.

My experience with inhaled cannabis (smoked flowers or vaped oil) is that it is fine if I needed a quick boost (happened maybe once a month or so), but not much help on a regular basis as its effects wear off in an hour or two.
Blessings,
Holland

QyX
Posts: 514
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Tue Feb 26, 2019 7:37 pm

Wow, when I was younger and consumed Cannabis for recreational purposes, it always affected me way longer than only 1-2 hours.

In the future, I will still use the spray or maybe an oily solution however simply at a reduced dose. In the past weeks, I tried my best to eat every night the same thing and the exact same amount, to make my response to the spray more predictable.

I talked with the doctor about the issue and she believes it might have something to do with all the other drugs I am taking, especially the opioids.

Before today, the last time I smoked / inhaled Cannabis was last year in the summer when I visited a friend and I still was able to feel some effect the next day in the evening.

Maybe it is a simple case of slow biotransformation ... which could explain why it takes so long to have an effect and why it is noticeably affecting me for such a long time.

The brand with high CBD and low THC is called Aurora. I inhaled one capsule which was about 133 mg (0,13 gramm) of cannabis flowers. And while this brand only has a concentration of 0,5 THC, I still can notice the THC quite cleary. Of course, it is not as dominant as when I use the spray but I am really surprised how strong the effect still is, especially with all the CBD.

My doctor said that it is normally activating, however she suspects that because of my Asperger-Syndrome I might have opposite effects. And exactly that seems to be the case. Right now I feel really tired in a very natural way without feeling crazy stoned or high. Ya, the THC effect is there but it is not overwhelming or stimulating like the spray is when the THC initially kicks in. It normally takes a while until the effect turns around and I start to feel like I want to sleep.

So for the moment, I will only use the Aurora brand and the other with an almost equal amount of THC and CBD. The high THC low CBD strain is something I want to try when I have a better understanding how inhaling cannabis flowers affects me.

All in all, this is so fascinating and I got really lucky with finding a doctor who really knows what she is doing and offering me all the options our health care system provides.

QyX
Posts: 514
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Wed Feb 27, 2019 8:51 pm

So first evening and night with Cannabis flowers and I must say the analgesic properties are incredible. Holy cow! I was already able to cut my average opioid dose by 1/4 .... now I estimate that, should the effect be consistent in the future, I will be able to cut my dose by maybe 50% and an additional 1/3 of my Oxcarbazepine dose ... which would be nice since my insurance will have to pay for the Cannabis and is already paying 100% of my opioids but the Oxcarbazepine I have to cover myself and it is a big problematic to make my insurance cover it.

So, wow. The really interesting thing is ... I did inhale the flowers in the evening and my main dose later at night. However I did have great pain relief throughout the complete next day and I skipped one major opioid dose without even noticing it while even now at 9:13 pm where my legs start to go crazy I am barely noticing any symptoms.

Also it seems that the flowers have better hypnotic properties. But this is kinda a complicated thing. I can still notice that there is something in my brain keeping me awake. I can sleep, yes ... but it takes some time until I fall asleep ... even with me being so tired that I basically fall asleep while just sitting. It is a bit of weird thing and I don't understand 100% what is going on here.

A factor is maybe that I am consuming nicotine in an e-cigarette ... and nicotine is a stimulant, it does worsen my RLS (especially the pain part) but somehow I enjoy making all these big clouds ... and it is more "fun" when I add some nicotine to the liquid. I know ... it is simply addiction that creates the illusion of "fun" and when I want real good sleep, I have to stop it ... at least during the night.

Also now with Cannabis as extra pain medication I can reduce the other drugs and figure out if they have any stimulating properties that I might not recognize any more because I take them for such a long time now.

I am honestly surprised. The spray already had some good analgesic properties but the flowers ... just wow.

In case I would life in the U.S. ... before going through all the drama to get opioids I would try to get Cannabis. In many states it seems way easier to get Cannabis than opioids. However the 1st: as opioids have tolerance issues unfortunately the same can happen with Cannabis. However the 2nd: it most likely depends a lot on the indication and probably some people are probably hunting more for the "high" and associate the stoned feeling with relief. However the 3rd: it seems that extra CBD can help with tolerance or avoid it even all together. Anyway, I guess when you have to use THC I would recommend using some extra CBD in the morning. It will also help with reducing some unpleasant effects the THC can have.

I don't know what to make of the "high" (stoned) feeling. It seems that it is somehow unavoidable. Yesterday I tried the low THC (0,5%) and I still was able to notice the THC. It was not as dominant as it is in the spray but still quite noticeable. When you just take enough, I am sure you could get really high, too. Also I noticed that while the low THC strain had some analgesic properties overall it seems that the pain relief properties are mainly related to the THC. And the THC makes you high. Not much you can do about it. I tried adding extra CBD at night ... but it did not change a thing. THC makes you high and the CBD basically reduces and balances a few side effects.

So what to do about the "high"? ... So I can't really sleep while I am high. THC at first has activating properties and it can increase your heart rate quite noticeably at first. I can sleep when the high effect wears down a bit. Then I suddenly start to feel tired. With the low THC strain, I felt tired almost immediately but the effect was not in any way shape or form strong enough.

A cool thing is that when you have some nice to eat and watch, then the high can be quite pleasant. However when you have or want to do something activate, the high feeling can limit you in your activities. So should you consider Cannabis as treatment, you might have to do a few lifestyle adjustment in the late evening.

Also I know some people who enjoy it to be social while being "high" ... however I never really enjoyed it. Only when the other people around me were "high" too. So I will be looking for future ways to limit the high, especially the impairment the next morning.

The best way to do this is to find out which is the minimum dose THC I need. Unfortunately the problem is: the "high" is kinda the thing I need to be tired later. It causes my brain to finally shut down, make it stop thinking and stop caring about things I can't change anyway. There is this devil thinker in my brain who always cries for attention ... and I kinda like thinking. So I think and can't sleep. And when there is something interesting the next day, even as child I had severe problems sleeping on these days and the older I got, the worse the problem became.

THC does not turn me into a different person but it makes me feel quite different. And with taking Cannabis daily, it kinda forces you to experience this every day ... even when you feel just perfect and just want to continue feeling like this. I would love to hear from others how they experience the high and what to do with it.

Oh and I have to add one thing: my overall mood & energy have dramatically improved. I got this effect maybe 3-4 weeks after I started using the spray and then at some point started to increase the CBD to reduce THC side effects I suddenly felt a massive increase in energy, motivation and mood.

I believe I still have a long long way to go but without any doubt, I am making real progress here.

stjohnh
Posts: 953
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Cannabis

Postby stjohnh » Wed Feb 27, 2019 9:04 pm

QyX wrote:So first evening and night with Cannabis flowers and I must say the analgesic properties are incredible. Holy cow!...

I believe I still have a long long way to go but without any doubt, I am making real progress here.


Yay!! You deserve to have something go right. :D
Blessings,
Holland

QyX
Posts: 514
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Fri Mar 01, 2019 6:49 pm

So I am investigating something. While the Cannabis can make me really tired and sleepy, there is still something going on that has a tendency to wake me up and gives me a hard time falling asleep. I suspect the cause for this is the opioid medication ... especially the Oxycodon.

When I got Oxycodon for the first time, it was so stimulating that I was not able to sleep at all. Only with the help of Benzodiazepines. So as a consequence we stopped Oxycodone and switched to Hydromorphone who was not that problematic.

But because of tolerance issues I ended up taking Oxycodone again ... but back then, I had Carbamazepine helping me out who was not only sedative but also a bit hypnotic. And later I thought I just got tolerant against the stimulating properties of opioids in general ... and I had no choice anyway.

Only the combination of Morphine and Oxycodone at night was powerful enough to make my symptoms tolerable. A lot of times I tried to reduce the Oxycodone or get rid of it. But it was simply impossible.

But with the Cannabis I now have a "window of opportunity". Yesterday I took the Oxycodone late in the afternoon and guess what: my sleep at night was much better.

And when I woke up at night because I developed a few RLS symptoms that normally require opioids ... I just inhaled a little bit of Cannabis and it put me right back to sleep maybe 10 minutes later.

And so today I finally got a lot done. Did some major cleaning in my apartement, installed computer upgrades and took care about other stuff.

So I will investigate my opioid theory in the next days and will try to reduce my dose as much as possible. It won't be possible to get rid of them completely since I simply can't be high 24/7 ... but for now these are some major steps in the right direction.

Polar Bear
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Re: Cannabis

Postby Polar Bear » Sat Mar 02, 2019 5:16 pm

QyX, we are all with you here !!
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

QyX
Posts: 514
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Sun Mar 03, 2019 9:24 pm

Polar Bear wrote:QyX, we are all with you here !!


Thank you. I really appreciate the support.

I am grateful this forum exists and gives me an opportunity to talk to other RLS patients, learn from their experience and share my own story.

Unfortunately there is no german speaking RLS community. Even here in Berlin, the biggest city in Germany it is kinda impossible to find a RLS support group. To me it feels that most people diagnosed with RLS have either not very severe symptoms and barely need medication or they have some form of secondary RLS, caused by nerve damage (as a long-term consequence of Diabetes, for example).

But those primary forms, where patients have symptoms starting at a relatively young age, who because of the severity of the symptoms. need daily medication seem to be rare.

The self-help community for bipolar disorders, parkinsons, multiple sclerosis etc. are all so much bigger ... and RLS feels a bit like a forgotten disorder and only a few experts really realize how bad RLS can get.

QyX
Posts: 514
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Wed Mar 27, 2019 9:31 pm

So the situation did improve further. It seems that especially "Bedica" (14% THC, < 0,5% CBD) is working well for me. For a while I believed that Bediol (6,8% THC, 8% CBD) has some special hypnotic properties. But in the end it seems that Bediol is not lasting long enough to reliably put me to sleep.

So for the new prescription I got Bedica again, together with two other different strains, imported from Canada: Orange No. 1 (13% THC, < 0,5% CBD) and Penelope (9,9% THC, 7% CBD).

So I can't say much about Orange No. 1 and Penelope yet. Since my experience with medicinal Cannabis strains is very limited and good information rare, I asked my doctor which strains might worth a try. She also wants to try some sativa strains in the future which are often stimulating and affect the mind a bit more than the body. I don't know if this is really true but it is something many people seem to believe.

For now I am quite happy with the results. Now it is all about optimising the effect and finding the best strains for my personal situation.

legsbestill
Posts: 539
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Cannabis

Postby legsbestill » Sat Mar 30, 2019 11:39 am

Hi QyX,

There are a couple of strains mentioned in the incredibly long thread about cannabis started by NatWest. She mentions medical mass and also sensi star. I have also heard strawberry cough recommended. I am still searching for a strain that helps my RLS but haven't managed to source any of these strains so remain hopeful ...

stjohnh
Posts: 953
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Cannabis

Postby stjohnh » Sat Mar 30, 2019 3:06 pm

My experience is that the "usual" recommendations for marijuana (sativa more stimulating, indica more sedating, high cbd for sleep otherwise low cbd), like many other drugs, seem to affect RLS users differently than most people. While there were mild differences between strains, the main determinate of cannabis helping my sleep was the THC content. None helped urge to move symptoms much.
Blessings,
Holland

QyX
Posts: 514
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Thu Apr 04, 2019 12:38 am

stjohnh wrote:My experience is that the "usual" recommendations for marijuana (sativa more stimulating, indica more sedating, high cbd for sleep otherwise low cbd), like many other drugs, seem to affect RLS users differently than most people. While there were mild differences between strains, the main determinate of cannabis helping my sleep was the THC content. None helped urge to move symptoms much.


Ye, that seems true. When I have trouble falling asleep, often just more THC fixes the problem. A little bit of CBD is helpful but it also seems that when my daily CBD dose is too high, I am having difficulty sleeping.

badnights
Moderator
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Re: Cannabis

Postby badnights » Thu Apr 11, 2019 5:57 am

I mentioned elsewhere that I've tried Sativex sublingual spray, which is half-half THC and CBD, and it seemed to help at first but then it started to make my sleep very fractured and even caused WED symptoms sometimes. Actually I started with a water-based tincture bought in a shop; it mostly worked, but when I got prescription Sativex, it never really worked.

Recently I tried "pure" CBD oil. Traces of THC, nothing more. That also fractured my sleep, every night I took it. Brutally.

My initial experiences with cannabis for WED (smoking my son's weed lol) were that Indica strains made my WED/RLS worse and Sativa strains made it better (backwards as usual for us; the "body stone" was just an RLS/WED nightmare). I checked the CBD oil, and it was derived from 4 different strains, at least 3 of which were Sativa strains. But it was dreadful.

Next, I tried some of the spray in addition to the CBD oil, because everyone here seems to agree that some THC is necessary. Again, a bad night. I only had the energy to try that once.

I think I have to give up on cannabis, but I will continue to read the results of QyX's experiments with interest. In case you find the magic solution.
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: 514
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Postby QyX » Mon Apr 15, 2019 10:53 am

So I try to limit my CBD intake since it can have activating and stimulating properties.

I take pure CBD oil in the morning and prefer Cannabis strains with basically no CBD but with around 14% THC before I go to bed. Sometimes I inhale some strains with approx. 50:50 THC/CBD ratio in the afternoon for pain relief but when it comes to initiating sleep, I don't find those strains particularly helpful.

Overall I have better results with natural cannabis then with the Sativex spray. I only use a small dose of it now for baseline pain relief during the night.

In general, I did not have instant success with Cannabis. While it improved sleep from the start, my sleep still was fractured a lot and sometimes it still is ... but overall, I have many many nights now where I have no trouble sleeping at all.

It also seems that it works better when I take a small dose .. approx. 10 mg of CBD in the morning. I tried taking it at night too but it was not helpful.

I feel like Cannabis takes a lot of trial and error and might require some extra patience.


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