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: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Post by QyX »

So the exact diagnosis would be: "Non-24-Hour Sleep/Wake Disorder or Non-24 or just N24. It is rare, very rare: only 0,03% of the population are affected by this and the overwhelming majority of these people are blind.

Here is some more information: https://www.circadiansleepdisorders.org ... -QandA.php

I think until 2017 / 2018 I just a delayed sleep phase disorder which then developed into Non-24.

Sadly, not much can be done. I do benefit a lot from Melatonin and I can achieve entrainment for up to a week but then Melatonin starts to trigger RLS symptoms and I have to stop it until my RLS is under control again.

I guess this also means that there is no point in trying to finish medical school. A normal life will be impossible for me. I've seen the stories of other N24 patients in the past days. They can't cope either. Now I am forced to rethink my life. I have no idea what I can do now.

Icantsleep
Posts: 175
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Cannabis

Post by Icantsleep »

If you've gone only 2-3 years without a regular sleep / wake schedule, I would think it could be reversed .
Mine began as delayed sleep phase around 1990, but became a non24 around 1998
If it wasnt for my rls, I believe I could fix it .

I was never as motivated as I am now, living with 2 children who rely on me
They need structure, and that's what we need too.

We both know melatonin wont help us but light therapy can help .
Basically you need to just do everything at the same time each day

Meals
Meds
Exercise
Wake time with a light box if possible (because the sleep time is what is least controlled)

The longer you can go with the same structure, the easier it becomes
You'll likely "fail" and get to a point of no return where you'll need a few days to reset to a "proper" schedule

Also ... it is easier to correct and maintain during the summer
Drag your **** out of bed and get some sunlight as early as possible in your day, and then AVOID all forms of light later in your day

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Post by QyX »

I do have light therapy glasses now. It is a device called "Luminette".

Additionally, I think I will get regular glasses that will filter blue lights so that I can control my exposure to blue light as much as possible.

Not every non24 case can be treated successfully. It is a minority where treatment works and even with RLS, I think Melatonin still plays a huge role because there might be a dose low enough where it does not trigger RLS symptoms.

If light therapy works for me, that would be amazing. Will see. I don't have much hope since part of the disorder is that the synchronisation simply fails can't be maintained. But we will see if this is really true for me.

Iron tablets, Vitamin B12 and folic acid certainly have proven useful. Also we will see what stopping Oxcarbazepine does to me. So far I am still able to manage my RLS.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Non-circadian

Post by badnights »

I read about non-24hr back when I read about pretty much every major sleep disorder and parasomnia, around the time I first developed this WED/RLS problem.
I guess this also means that there is no point in trying to finish medical school. A normal life will be impossible for me. I've seen the stories of other N24 patients in the past days. They can't cope either. Now I am forced to rethink my life. I have no idea what I can do now.
You;re again falling into the trap of thinking you know the future. If you can develop non-24hr, you can undevelop it. You don't know what breakthroughs will be made in sleep medicine. None of us is able to predict our life with accuracy. It's not appropriate to decide something's impossible.
I do benefit a lot from Melatonin and I can achieve entrainment for up to a week but then Melatonin starts to trigger RLS symptoms and I have to stop it until my RLS is under control again.
That's not ideal but so much better than nothing.

You posted another reply that sounds much more positive as I was composing this post :) :) ah - my smilies aren't working
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

badnights
Moderator
Posts: 5852
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Cannabis

Post by badnights »

Qyx, I missed your other post earlier, sorry.
QyX wrote: the speed and the amount of THC that is absorbed significantly depends if and what you have eaten before you used the medication. That is the reason I recommended vaping.
icantsleep wrote: a medical vaporizer would be the most effective and definitely the quickest way to ingest your cannabis ........ oils can be so unreliable
I know the cold vaping and avoiding cartridges is much better than some vaporizers, but what I researched suggests that it is still bad for your lungs. I am very leery of damaging my lungs more because working out makes me happy and pretty much nothing else does; and I can't do it when I'm having asthma issues.

However- I will re-consider it if the effects of ingesting are too unpredictable, as you both warn me might happen. And I did not research very heavily; I should probably do so.
Can you share what varieties you ordered? Got to admit: I am curious
.
King Kush - 3.5g
GG #4 - 3.5g
Wedding Pie - 3.5g
UK Cheese - 3.5g

also CBD Jelly Bomb (80mg in 8 peices)
and Sugar Jack’s – Assorted THC Gummies (200mg in 10 pieces)
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: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Post by QyX »

I've been told by my doctor that there is no risk in lung damage when a proper medical grade vaporiser is used. The way the device works is that it heats up the flowers between 185°C and 215°C and then goes through a small cooling tower, so that the resulting "smoke" is mild and easy to inhalte. Some also say that inhaling THC can be quite beneficial for Asthma but I never researched this myself. Just based on what I know and experienced myself, I think there is no risk in vaping Cannabis, even with Asthma as long as you can be sure that you use full flowers in a medical grade vaporiser who have been grown in a controlled environment and are free from heavy metals or other poison. But again: I know only one asthma patient who also uses medical Cannabis. He has no problem whatsoever and said in one of his videos that vaping has even proven beneficial for his asthma. That's the extent of my own knowledge.

Maybe you should check YouTube and find some videos from english speaking patients who use marijuana and also have asthma. It is most likely a topic where there isn't enough research and probably most of it is focused on people who burn and not vape marijuana or use those horrible cartridges instead of a medical grade vaporiser who have been designed to avoid lung damage.

Have you already received your order? Do you know the THC concentrations of each strain?

ViewsAskew
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Location: Los Angeles

Re: Cannabis

Post by ViewsAskew »

For what it's worth...I recently bought "Camino" by Kiva. It is for sleep. It is 5 to 1 THC to CBN. Prior, I used Kanha Tranquility, which was a 1 to 1.

I am able to cut both in quarters. Am not at all using for movement issues, just to stay asleep. Both do keep me asleep much better. But, I like the Tranquility better.

Both take at least 1.5 hours to work. I decided that I don't care - I NEVER sleep well when I am taking my normal med mix. I awaken at least 10 times a night. I never fall asleep easily without help. I have also found that if, in the rare case, 1/4 isn't quite enough and I awaken in the first 1-2 hours of sleep, adding another 1/4 in. That works with the Camino, but NOT with the Tranquility. The Tranquility keeps me asleep for at least 7 hours, starting 2 hours after I take it. So, that one I cannot take extra of. The Camino, though, lasts a shorter time. It lasts maybe 5 hours after it kicks in. So, if I awaken and take another 1/4, I still can wake up within a reasonable amount of time.

Of course, I don't work a regular job, so don't have to get up at specific times most days.

I will try something else when the Camino is finished - maybe a 2 to 1. The 1 to 1 seems to be a bit too much of a good thing. The 5 to 1 not enough of it.

I have also noticed that I have had more daily headaches in the last week since I started the Camino. Not saying it is that - I have fibro, muscle spasms, and have always had headache and migraine issues. Between them, things hurt a lot and often. I could easily just be in a bad stretch with pain. I've changed my workout routine, also, and that can easily make my body hurt more initially. But, I will monitor the headaches and see if it is related.
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.

badnights
Moderator
Posts: 5852
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Cannabis

Post by badnights »

THanks for the info Ann. It will be useful, all this info helps me make decisions. Did you mean CBD, or CBN?
Have you already received your order? Do you know the THC concentrations of each strain?
I haven't received it yet. It takes a long time to get from Edmonton to YK. Also, there is construction on my street and some parcels that were supposed to have been delivered yesterday and today have not been, though the tracking says they have. Argh. I hope that doesn't happen to the cannabis.

I can't find the THC concentrations. I swear I remember seeing them listed - 17%, 21%, like that, and all of them <0.1% CBD. But they are not on the website now. I am probably remembering a different website, that I was going to order from; but why would I have ordered from this site (cannabismo) without knowing the THC concentration? I was focused on that while ordering - I thought - - you see, I am losing my mind :( :(
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.

ViewsAskew
Moderator
Posts: 16233
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Cannabis

Post by ViewsAskew »

badnights wrote:
Tue Jul 07, 2020 6:49 am
THanks for the info Ann. It will be useful, all this info helps me make decisions. Did you mean CBD, or CBN?
CBD
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: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Post by QyX »

With all that has happened, I don't even know where to start. As you probably all can imagine, I am still dealing emotionally with the Non-24 "situation". Of course I don't know my future but when I see, how other Non-24 patients are doing, it just scares me. Only a small minority is able to life in a normal 24h cycle and not feel like chronically sleep deprived. So statistically, the chance of being able to solve my situation, especially with RLS as comorbidity is simply not that great.

However chronotherapy with the light glasses is showing its first clear major signs that some significant is changing. The light from the glasses also helps with the RLS symptoms. It is quite interesting how it all interacts. I've also been getting rid of Oxcarbazepine. I finally had the nerve and the motivation to follow through. Now as a consequence, suddenly CBD oil works much better. It suddenly has its own major analgesic properties. It kinda feels like that Oxcarbazepine was blocking / inhibiting certain effects of CBD.

At least, I know for a fact that Oxcarbazepine can completely block the effects of Benzodiazepines for me. Normally, that shouldn't be the case but for some reason it is still happening to me for unknown reasons. This was also my main motivation to stop Oxcarbazepine, so that I have Benzodiazepines as an emergency option and more flexibility because of Non-24. But now after testing it again, the sleep quality with Benzos is a disaster. I feel so jet lagged and horrible when waking up from Benzo sleep that I find it much better to not sleep. But at least I now have this option for important appointments with doctors in the coming weeks.

So in the past few days, I sometimes was taking a few drops of CBD oil and my RLS symptoms disappeared. The really interesting thing is that CBD seems amazing in treating certain burning sensations I tend to have in both my feet. Suddenly CBD does a pretty impressive job.

But overall I also feel weird and I think it is the light therapy. I've definitely shortened my circadian cycle ... maybe down from 34 to something like 26 or 28. Last night, with the help of the suddenly totally amazing CBD, I even managed to stay within the 24 cycle. But that somehow changed the perception of time and day and night in a weird way I can't explain. I am also much calmer up to a point where right now I hardy know myself.

If I had to go by my gut feeling, this certainly all seems like progress and moving in the right direction after I finally know what I have to do. But it is also a really bizarre feeling when you fix something that was basically always broken and you never even knew how things are supposed to be. Right now, my own story appears so crazy, that I have trouble believing it all myself. And then: who would have thought that light therapy is so powerful? They should do some studies with RLS but that would probably not be in the interest of the pharma industry.

How crazy would it be if I really find a treatment for the Non-24 + RLS situation.

Oh the light therapy glasses I bought, they are called "Luminette 3" (229 EUR) but there are much cheaper options when you just want to try. I went for the best researched product because with my issues, I wanted the best option available.

badnights
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Location: Northwest Territories, Canada

Re: Cannabis

Post by badnights »

it is also a really bizarre feeling when you fix something that was basically always broken and you never even knew how things are supposed to be.
I bet.
And then: who would have thought that light therapy is so powerful? They should do some studies with RLS
I agree. There are some really good graduate or post-doc studies there. I have tried various ways to re-set my sliding clock (I think it slides mainly because of the opioid alerting effect). Morning blue light seems the most promising. I had a sunrise alarm clock but I never stayed in bed after I woke up so the blue-light part of that was useless. I recently bought a portable Philips GoLite Blu Energy light, but stopped using it when I (perhaps erroneously) correlated its use with the onset of badly fractured sleep. I was maybe turning up the intensity too much and leaving it on for a full hour. Maybe too much.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Post by QyX »

@Beth: have you received your cannabis? I wonder how it works for you.

With me, so much has happened in the past weeks with new insights into my situation and the problems I am facing. The peak was monday when I heard back from the clinic for sleep & chrono medicine. It was the chief physician of the clinic himself initiating first contact. Got to admit: I kind of feared something similar like that because my case is just so abnormal and extreme while he has expertise in all of the areas that are highly relevant to my personal situation right now. He even might be the best expert available for my situation in Germany. So I suspected to ultimately end up there but not that he will call me personally and establish a direct line of contact into his office.

But then I thought about it a bit more: it is also highly practical when you deal with patients who have problems coming to appointments on a regular basis or are awake during weird hours. So phone contact can make things much easier for such patients. That's also the way one of my old doctors who treated me from 2005 to 2014 started to streat me in 2012 when things started to get really bad.

What will happen? We are going to skip the initial one hour appointment and assessment in a sleep study and jump directly to some newly developed test for circadian disorders who is not yet on the market. But since his clinic is the one who developed it, they put me into the study. They will take blood at 10:45 together with a hair root probe. Than 2nd appointment, same day at 16:00 until 22:30 where I have to sit in a dark room where an assistant will take saliva samples every 30 minutes. This is going to happen at the 13th of August, so soon. Next appointment with my regular Neurologist is on the 10th, so things are moving really fast now.

And I don't think I would ever figured all this stuff out without cannabis since I mostly was in emotional denial about my situation. I just could not accept being that sick and having such an abnormal problem. Cannabis was massively helpful in figuring this all out. I think anyone who starts this thread from the beginning will come to the same conclusion. It certainly convinces me that cannabis is indeed a necessary required medication for the problem since more targeted therapies are not yet available.

I am very happy that I documented this process, how I get better with cannabis but sadly it doesn't solve all my problems. However it makes it quite clear and obvious to me where the RLS stops and other problems start since I often can treat my RLS symptoms, even the most severe ones, in almost all situations now. That's not just thanks to cannabis but other substances I re-discovered and wrote about in the past (Methylphenidate). I just have a very unique (and very broken) brain chemistry. But with RLS, I sometimes can > 95% symptom control for 3-4 days in a row now.

Cannabis is certainly not without side effects but the required doses to treat moderate and standard severe RLS are low. My RLS symptoms have been so bad because the circadian disorder (and the autism spectrum disorder + ADD) is messing up things way more than it normally would in standard severe RLS cases. But when even my symptoms can (almost) be fully controlled most of the time, then I think this is certainly possible with most other RLS patients. Just the access to the right drugs is often the problem that makes it impossible to find relief for patients who normally can be treated easily.

So I will continue updating this thread as soon something is happening, that has a dominant connection to cannabis & rls, but I guess for the future a framework that describes the interaction of RLS and the circadian disorder is more suited to my situation. It is just a bit dumb that all the stuff I am learning, and that works for me, might not work others since my case is so unique. At least I understand it now, I am just different. No surprise so many doctor had massive trouble believing me in the past. Now I will get the best care a german research hospital can produce. Who knows, it could lead to something. At least it seems like a massive opportunity to improve my quality of life and then I could study something like Psychology from home. I guess there is some realistic perspective for some kind of life again but it certainly won't be medicine.

And ye .. if I hadn't learned all those crazy pharmacological tricks in the past 16 years, I think I would have been discovered much earlier but I always found weird and undocumented ways to fix my sleep. The stuff I am reacting paradox to is just crazy. When I was at a cannabis pain self help meeting a few weeks ago, I told them that I use sativa strains to initiate sleep and even they said (most of them mildly autistic like I am) that they don't have such a paradox reaction.

I just still can't believe it ... like who would ever think that you have some kind of rare special neuropsychiatric disorder where you need experimental tests and who knows what else? Jeez ... I just wish so badly that all this would not be necessary but sadly it is ... and I feel for all the people in the U.S. who do not have access to quality care. Here in Germany, even somebody unemployed where the government pays the insurance would receive the same treatment as I do. I am so thankful that these resources are available in our country, even during Covid. When I think about it like that, I am not even sad or mad that I have this problem but only thankful that I have a family and medical & social system that cares about my situation.

ViewsAskew
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Location: Los Angeles

Re: Cannabis

Post by ViewsAskew »

@Qyx - Beth is out for awhile - a work thing. She may not see this for several weeks.
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.

Icantsleep
Posts: 175
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Cannabis

Post by Icantsleep »

Keep up updated though

I use cannabis among other things , but I'm also very interested in the circadian rhythm medicine/research

badnights
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Location: Northwest Territories, Canada

Re: Cannabis

Post by badnights »

I am so thankful that these resources are available in our country, even during Covid. When I think about it like that, I am not even sad or mad that I have this problem but only thankful that I have a family and medical & social system that cares about my situation.
Amen to that!
I guess for the future a framework that describes the interaction of RLS and the circadian disorder is more suited to my situation
Well I hope you keep posting about that, too, because even though you are admittedly an outlier medically, you still have many commonalities with the rest of us; and your research always turns up things that might be useful.

Your evening of sitting in a dark room was today - did they make you sit still or were you allowed to move if you had WED/RLS symptoms? What will they check for in the saliva? What did they check in the hair root? How fantastic that you got in with this guy!

I received my cannabis, flower and gummies both, but I left for work in a remote field camp without trying the flower. I want to age it to convert the THC to CBN??? (have to read up on that, but following yawny on this board), after which I will make cannabis-infused coconut oil from which I will make small treats to eat.

However, I have tried the gummies, and I'm intrigued by their effect. I have to bite a 20-mg THC gummy in thirds, or even smaller, and I take a tiny pinch of the CBD gummy, so probably about 6-7 mg THC and 3 CBD. I get stoned within half an hour, and I HATE that feeling. I absolutely can't abide it. So I go to bed as soon as I feel it. And if things go well, I do not need any zopicline, nor any Lyrica. (I started taking Lyria again on this last job, in the field camp, because my sleep has been so awfullly fractured without it; but I want to stop it again because it might be contributing to my depression). That's the good part. The amazing part, really.

The bad part is that things don't always go well, and I sometimes have an hour or two of wicked WED, often also with something like PGAD, and in a stoned state, it's awful. I am hoping the THC - CBN conversion might help prevent the occasional wicked WED. Keeping the THC dose low seems to help too. I REALLY want to be able to stop the zopiclone, because I am sure it is messing up my brain memory-wise.

One other bad thing about the THC: I can't use it in the field, because I don't feel I could rely on myself to deal with a bear or other threat in camp while feeling stoned. I have no worries about taking zopiclone in the field, oddly enough; even when I can't really remember what I did, it always turns out to have been something rational and appropriate. I don't feel that would be the case with the THC - I don't think I could make quick, effective decisions.

I am miserably tired. My WED is out of control, preventing most daytime napping. Plus, I now have sleep-maintenance insomnia. I can't even sleep in when things get bad; if the WED doesn't wake me up, the insomnia does. I can't nap to recover because when I do get a little window during which my body can fall asleep - they've been replacing the water and sewer lines on my street 7 days a week, 12 hours a day, since June, and I am going bananas with my house shaking from the excavator 10 meters away and the back-up beeps that penetrate my ear plugs. So I've actually rented a room in a b&b starting tomorrow for 4 days. Sorry to divert your thread like this.

I'm hopeful about the cannabis because if it can replace the zopicline and Lyrica, I feel I will be much healthier.
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.

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