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: 688
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Post by QyX »

Okay, I think now I have something that is an interesting update.

As it turned out, the positive effect of iron tablets on my insomnia were and are limited. I already described how up & down the situation was and now I was simply waiting for the situation to stabilize, which finally happened. So at least at my current dose (1 tablet at night) there was basically no net positive effect on my insomnia. It looked like there was maybe some potential for a better outcome but at higher doses, I developed chronic urinary urgency. Some days, I had to run to the bathroom 5-8 times per hour!

HOWEVER: the effects of the iron tablets on my pain related symptoms was (and is) quite significant and all those weird non-painful sensations I often have in my legs are basically completely gone. Additionally, it often felt like my legs were somewhat disconnected from the rest of my body. I had like two completely different feelings for them, like my legs were living their own life. Just because of this "disconnect" feeling alone I could always tell that something is just terribly wrong with my CNS.

So all this improved dramatically, up to a point where, even at peak symptom time (between 11 pm & 3 am for me), I am now completely (95-98%) RLS symptom free. This is honestly quite insane and I have never reached such an outcome on the level of physical symptoms before. Sadly the insomnia was still giving me trouble and this made it even more clear and obvious, that my insomnia is not just all RLS, given my ADD and Asperger-Diagnosis and the psychotic episode I had when I was 19.

Cannabis itself, while powerful for insomnia was in that context not fully effective long-term. I was demanding more from Cannabis then it could do long-term. If I would teak breaks every couple months, it properly would work a bit better but I most likely would feel even worse in the off-weeks. After not knowing what to do for a few weeks, I kind of crashed into a depressive mood & frustration again.

Then early this week, I decided to try Melatonin again. I already wrote about it in the past but then in context of taking the weaker iron tablets, it somehow felt it was not effective anymore and all the benefit was coming from the iron. So I stopped it and kind of forgot about it again. I mean, it was obvious that it had a positive effect but it was also triggering RLS symptoms and seem to lose most of its positive effects after 2 days. Ultimately it never was that clear what Melatonin was really doing for me. It was just so ambiguous and for a while Cannabis worked so great, that I did not miss the Melatonin at all.

But here I was again: terrible insomnia for almost 2 weeks and I was close to feeling burned out and exhausted again. So I thought: okay, let's try Melatonin again. This time we will finally see if it can make a difference or not. I had some hope because the best year in medical school I had so far were those 6 months were I was taking Melatonin for the first time while Carbamazepine was still working. But because Melatonin made my RLS worse (or because Carbamazepine was getting weaker and RLS was progressing) I was forced to stop it.

Now we have the situation that those stronger iron tablets and medical Marijuana basically fixed the physical side of my RLS symptoms. So maybe, just maybe, Melatonin will maybe (!!!) work again. Gotta try, right? Because with my insomnia in the past 2 weeks, it felt like my body was simply not knowing when it was morning or night, when it was time to get active and time to get sleepy. I was always in that middle of nowhere state, with no motivation and no desire to do anything at all.

It felt like something was just really broken. So I started taking 3 mg Melatonin together with my iron tablets and Cannabis and slept like a god. It triggered some RLS symptoms for maybe 20 - 30 minutes but it was really low level and no problem with Oxycodone and Cannabis in my system. In the end it took only two days of Melatonin to fix my day - night structure. The past 3 days, I was able to fall asleep within 20 - 30 minutes. I go to bed at roughly 9 pm, wake up once every night around 1 am because Cannabis wears off, I vape another dose of medical marijuana and then wake up at roughly 5 am because opioids wear off. At 5 am, I then take my opioids and sleep / snooze another hour before I get out of bed.

So the Melatonin triggers some RLS symptoms and in the past it was similar and then got worse over a few weeks until I am forced to stop it. But at that time, I wasn't using Cannabis nor iron tablets. So I think there is a real chance that the outcome will be different this time and maybe I don't even have to take it every day because this situation now allows to me to use less Cannabis, so tolerance will reduce and I can take more on the days where I don't take Melatonin.

Today then, I felt so good /normal RLS wise, even after taking Melatonin, that I decided to try my ADD medication (amphetamine salts) again. ADD medication is a serious RLS symptoms trigger for me. So much, that I completely stopped taking it. Initially, ADD medication improves my RLS symptoms but when the medication wears off, I get a horrible RLS symptoms rebound that can't be treated with opioids. Those rebound symptoms respond to Cannabis though, however they require quite large doses and ultimately do nothing against the following insomnia.

HOWEVER: I am somehow convinced that those iron tablets are a real game changer for my physical RLS symptoms and this is now the ultimate test. If I can tolerate ADD medication again without having rebound RLS symptoms or rebound insomnia, that would indicate that I also might tolerate Melatonin long-term and maybe even regular caffeine again.

In the last 3 days, I felt so normal and great, that if it stays like this, I 100% will be able to go back to medical school and finish it. If now even ADD medication works again and I won't have those rebound symptoms, I am quite sure and optimistic, that I will be able to fix my life.

I think this really is it for me because I don't see any other options or roads I could take. This experiment will determine how good or bad I will be able to function well and what compromises I have to take.

Maybe, just maybe I am real lucky here. It is certainly possible. A lot is possible right now.

It is already absolutely crazy, insane and mind boggling to me, how well and great I am able to feel today.

Now the big question is: can I make it last?

I kind of think I deserve it. I worked so hard for this. Just please please please, this needs to work because it really would prove something: that you can even treat the worst RLS and that it absolutely makes sense to never give up and try absolutely everything that you can try safely.

Oh dear, if I don't have rebound RLS symptoms from the amphetamine medication today, I will go absolutely nuts.

Pleaasseeeeeeeee!!!

badnights
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Location: Northwest Territories, Canada

Re: Cannabis

Post by badnights »

If you have no rebound, YAY!!!

If you have rebound, that doesn't change the fact that the iron is helping you immensely. You still have a much better QoL than before. And if you have no rebound at first but then have rebound on the second day, or the fourth week, that may change what you try next, but it will not be the end of trying.

You've already shown that vast improvements can still come for any of us if we refuse to give up. Think of the state you were in a few years ago, around the time you joined this board. But yes, it would be nice to have a story of blatant, obvious, in-your-face success! How encouraging that would be. I hope you slept like a baby last night...
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: 688
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Post by QyX »

So the rebound I had was minor but the ADD medication kept me awake longer than I would have expected. However I still slept in the end and I feel fine again today. I guess ADD stimulants are just horrible for me and I knew that it is very unlikely that ADD medication would work long-term again. As long as Melatonin works things are good.

Now I have to wait and see if I will be able to continue on this path, if so, a lot will be possible again.

Polar Bear
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Location: N. Ireland

Re: Cannabis

Post by Polar Bear »

QyX you are working so hard at this and achieving so much. I applaud you. :)
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: 688
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Post by QyX »

Thank you Betty!

Things are still looking great, having absolutely no trouble sleeping whatsoever. Two days ago, I was awake a little bit during the night but only because the opioids and the Cannabis wear off and so that I to redose to fall asleep again.

The way things have changed, it still feels unreal even though it was a long time coming when you look at my progress over the past months but it was always either unstable or I needed lots and lots of marijuana to fall asleep which made it unreliable long-term. But this has changed. Now with lower doses I am falling asleep faster than ever before.

Now the big question is: how long will it continue like this?

Polar Bear
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Location: N. Ireland

Re: Cannabis

Post by Polar Bear »

Hopefully for a long time.
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

badnights
Moderator
Posts: 5616
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Cannabis

Post by badnights »

I hope for the very best for you. Keep your curiosity and determination and hope, and you will keep having good things happen.
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: 688
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Post by QyX »

Okay, I guess I can now make the first prediction how the current situation will develop over the next few months.

As I already feared, Melatonin still does trigger RLS symptoms and while iron tablets significantly can delay that process, it still does happen. So taking Melatonin daily is not an option. However: it doesn't seem like it is really necessary to take Melatonin every day. The past week, I was taking Melatonin only every 2nd day and I was still able to sleep okay.

Basically on the days where I use Melatonin I can now use less Cannabis and therefore have a stronger response to Cannabis on days, where I can't take Melatonin. Taking Melatonin, it often feels like I am wearing "glasses" because Melatonin gives me a sense when it is day / night. It seems like in my natural state my body doesn't seem to know when it is day or night. Taking Melatonin seems to help my body to know when to get sleepy. Without it, I just seem to be in this nowhere land.

Bottom line: this slowly starts to look like I have discovered a viable long-term solution. Got to say: it is fascinating one dose of Melatonin seems to work not for one but for two days. I have no way of explaining this but my current theory is that as long as I don't relapse into a state of insomnia, it is much easier to fall asleep than when I am in a chronic state of insomnia.

The one problem left right now is the urinary urgency I sometimes experiences. It seems to be connected to the iron tablets I am taking but is most likely also a side effect of Oxcarbazepine. Looks like the problem is serious enough that I will need treatment for it. Currently I use low doses of Cannabis during the day to manage it but Cannabis is not as effective in that area as I want it to be and I really hate the cognitive impairment during the day. Anyway, I think this problem can be fixed and then with an even lower average Cannabis tolerance, it should become even easier to sleep on the days where I don't take Melatonin.

badnights
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Location: Northwest Territories, Canada

Re: Cannabis

Post by badnights »

What time of day do you take the melatonin, how much do you take, and what time do you go to bed afterward?
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: 688
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Post by QyX »

badnights wrote:
Mon Jun 15, 2020 7:55 am
What time of day do you take the melatonin, how much do you take, and what time do you go to bed afterward?
Currently I take 3 mg of Melatonin. Right afterwards I vape some Marijuana and then normally fall asleep within 10 to maximum 20 minutes. So I basically take it directly before I go to bed and it even can put me to sleep when I don't feel tired at all. That's the magic of Melatonin: it can make me tired even in situation where I don't feel tired / sleepy at all.

At the moment I am thinking that 3 mg is maybe a bit too much since the combination of vaped marijuana + cbd oil + melatonin can make me sleep quite deep and long. Next time I order melatonin, I will also get 1 mg and if available 2 mg tablets. Like between today and yesterday, my sleep was so deep that when I was waking up late in the morning today it felt like I was coming out of a coma even though it felt like I slept just fine the day before.

I also don't fully understand under what conditions exactly melatonin does trigger RLS symptoms. It might be that taking some CBD directly with melatonin could reduce the risk of triggering RLS symptoms.

Melatonin can put me to sleep just as fast as Dopamine-Agonists like Pramipexole could do in their best days.

So what I do want to try in the next weeks is this: maybe I can take a smaller dose (1 mg) on a daily basis? Or I can do something like 1 - 2 - 1 - 2? without triggering RLS symptoms?

In any case, even when Melatonin does trigger RLS symptoms, it only seems to take 1 or 2 days until my brain chemistry reset and I can take it again.

Also interesting: yesterday and the day before yesterday Melatonin wasn't triggering any RLS symptoms at all. Why? I don't know. I can't explain what is going on. I don't have any big or great theories on what is happening but I can clearly say that the way I sleep with Melatonin and the way I feel after I wake up seems to be the way normal, healthy people seem to feel.

I guess we will see how this develops and what techniques and methods I can develop to be able to take Melatonin as often as possible without triggering relevant RLS symptoms.

Kinda wish I would know more about what is happening. One of my old doctors said about Melatonin that he tried it with many patients but it never worked for them. At least as far as I know, it is a bit unusual that someone shows such a strong reaction to Melatonin but when you consider that I don't have a natural day - night rhythm, it kind of makes sense that I would show a strong a reaction when this natural systems seems to be completely broken for me.

Polar Bear
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Re: Cannabis

Post by Polar Bear »

Dr put me on a 13 week course of Melatonin and it did nothing for me.
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

badnights
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Location: Northwest Territories, Canada

Re: Cannabis

Post by badnights »

I am pretty sure my circadian rhythm is being screwed up by the opioid med, and if I wasn't taking that I would be fine for day-night. So my situation is probably not analogous to yours. But I would give almost anything to sleep deep and long every night - or even once a week! Heck, once a month would be delightful..... So I think I am going to try melatonin again. It was very long ago the last I tried it, and it seemed to have no effect.

What I really want is to find a substitute for the Lyrica that I stopped because of depression. It helped balance some of the opioid-induced damage to my sleep architecture. I want to try vaping but I am clueless, and finding out about it is daunting. I would like a medical store to go to but the only place to buy it here is at the "Liquor and Cannabis Store". Since I stopped Lyrica, I wake every hour, or even more than that, and I can't sleep past 10 AM for the life of me even if I didn't sleep at all til 6 AM. (There's an up-side: I wake up pretty alert now.)

QyX, I think you might be better off not taking melatonin every day, but I don't have a good reason, just a hunch. The less introduced substances, the better; give your brain a break; keep it effective. Maybe.
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.

Polar Bear
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Location: N. Ireland

Re: Cannabis

Post by Polar Bear »

Beth, I don't know how you manage the stressful work that you do on so little sleep. I've rattled on plenty about my poor sleep but you are up there with me.
To vape, I don't know anything about that but I wonder if there are members who might do. I'd give it a try if I could but in the alternative I have kratom. I don't take it often now because it doesn't appear to help my sleep at my dosage and I'm reluctant to go higher. However it does calm the crawlies if needed. I
I'm sorry you are also battling depression.
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

badnights
Moderator
Posts: 5616
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Cannabis

Post by badnights »

I tried a tincture I got from my son when he was still living at home - so over 10 years ago, good grief. I tried it a few times, but it didn't help the movement and sensory symptoms, so I gave it up. But now I want something for sleep, and I found it and thought I would try it. It's a glycerin-based tincture of so-called "sativa" marijuana called Maui-waui. There is no information on concentration of THC, CBD or anything else. And it's maybe a dozen years old! I tried one dropper the first night and 2 last night. I didn't get any more sleep than usual, but I felt that my sleep was more refreshing. Who knows. Tonight I'll try 3 droppers. It must have degraded at least somewhat.
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: 688
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Cannabis

Post by QyX »

Hey Beth,

I think you really should look more into Cannabis. It is not a magic cure for RLS related insomnia however it can influence and improve all primary RLS symptoms. Almost all strains I use personally are imported from Canada and as far as I know they can all be ordered online in your country. I would start with a strain that contains somewhere between 4 - 8% CBD and 6 - 14% THC.

In my opinion it doesn't matter if you use Indica or Sativa/Hybrid strains since both can work and not work. Just don't use the high potent stuff without CBD until you better understand your personal reaction to THC since it can alter your overall perception, mood and sense of time quite a bit if you use higher doses.

Canada produces some of the best medical Marijuana in the world and all the strains are available for online order.

One other thing to note: in the end there is no real medical Marijuana. What they sell as "medical" is the same stuff you also can buy in coffee shops in Amsterdam. The only relevant difference is that medical Marijuana is produced in a highly controlled / regulated environment compared Marijuana that is sold.

And please be careful with the oral solution that contain THC. It is so damn easy to overdose. It happened to me quite a few times so even when I thought I know what I am doing, I still messed up.

Regarding my Melatonin: I really wish I could take it every day. When I started taking it again a few weeks ago, I already knew it was unlikely that I will tolerate daily because of worsening RLS symptoms triggered by it. The past days have been weird. I've been taking it daily even though I knew I shouldn't. But the sleep is just so amazing when you combine iron tablets + Cannabis + Melatonin. When I wake up, I often feel almost completely normal and just great. Today I was out in town and it was just so great to feel completely normal.

But in the back of my mind I know it will not last and now all the walking already triggered symptoms. So the odds that Melatonin won't trigger anything tonight are low.

When last week I tried to sleep without Melatonin, on some days it is not an issue and others I have to stay up so long where I reach point where I can take Melatonin without triggering RLS symptoms. So at least for now, I can only keep a normal day / night schedule with daily Melatonin.

For now I have to goals:

a) reduce Cannabis tolerance so that I can sleep better on days where I can't take Melatonin

b) investigate if there is a way to avoid or delay the triggering of RLS through Melatonin

One piece of good news I do have though: it seems like even when Melatonin triggers RLS symptoms, it only takes 1-3 days until it works again.

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