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.
badnights
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Re: Cannabis

Post by badnights »

wow. I thought you'd tried everything.
Just goes to show us that giving up is always a bad policy.

I have mentioned here before that when I stop iron, I have a backlash of worsened WED after 1-3 weeks. Likewise when I add the iron back in, the WED improves in 1-3 weeks. I don't notice the changes in days like you, but in weeks, so it was often a while before I made the link between cause and effect.

Now I've had an infusion, and all winter was able to survive quite well on 6 mg hydromorph contin instead of 9 mg, but now I need 9 more often and I'm sure my iron levels - which I can't get checked cuz it's not an emergency - would allow Dr B to recommend another infusion, but I have nowhere to get an infusion because I can no longer travel due to the coronavirus.

I had other benefits as well, possibly attributable to the iron (happened at the same time): need less food, have fewer hot flashes, less depressed, other stuff.
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

Re: Cannabis

Post by QyX »

I had taken those iron tablets I am taking right now for the first time a few years ago but at that time, I was still sleeping okayish with Carbamazepine and taking or not taking those tablets didn't seem to make a difference, not short-term or long-term. Then I read reports in this forum from people who were saying that iron tablets did not work for them and only an infusion made a real difference. Based on those experiences and observations, I simply could not imagine that iron tablets sold as nutrition supplements would be potent enough to make a real difference in severe RLS cases, especially when you consider how difficult it is for the body to absorb iron via the digestive systems.

The reason why I started taking those tablets again was a recommendation given by the doctor who prescribes the medical marijuana for me. Those tablets are also not just iron tablets, they also include folic acid and a number of important vitamins. A blood test revealed that I am low on folic acid due to treatment with Oxcarbazepine. So all this together made me purchase the product again. I am still surprised it is working but also afraid it will stop working at some point but right now, sleeping at night became so easy that I completely stopped worrying about it, at least for the time being.

The tablets I am using contain 14 mg of Iron(II) gluconate. The recommended dose is 2 tablets per day for 4 weeks. I take 4 for the time being and will do a blood test at my next appointment with my neurologists. Blood tests in the past revealed levels who would be considered normal for a person of my age. I guess it will be interesting to see, if this number is going to change and if so, how much.

It is interesting that you mention those hot flashes. I always thought those were a side effect of opioid medication but now I am not so sure anymore.

badnights
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Location: Northwest Territories, Canada

Re: Cannabis

Post by badnights »

Do the tablets have 14 mg ferrous gluconate, or 14 mg elemental iron in gluconate form? I would think the latter, and even that is pretty low. I was taking ferrous sulfate, 325 mg of the sulfate which contains 65 mg elemental iron. I took three of those daily - more than most people who take one or two. Right now I am taking two (after not taking any for a few months post-infusion).

I didn't realize opioids led to hot flashes. Mine are most likely related to menopause, but I was intrigued to notice that they disappeared almost completely during the time the infusion was benefiting me, and are back now in full force.

I am pleased the iron seems to be working for you. Good thing you tried it again!
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

Re: Cannabis

Post by QyX »

I think I have to upgrade to a more potent product. Right now it slowly starts to feel like that I need to take more to maintain a stable effect. I am going to check out what is available here without a prescription.

There is clearly a positive effect for me, my pain level is just lower and opioids work a bit more reliable. But it also feels like that it would be better if I would just take more and more.

QyX

Re: Cannabis

Post by QyX »

I wanted to give an update on my iron tablet situation. So a few days ago I had RLS symptoms who were very unusual and weird for that time of the day. Additionally the symptoms persisted even after I was using additional medication (10 mg Oxycodone + 0,15 g marijuana flowers) but then I remembered: I hadn't taken the iron tablets the night before. I had the dose increased up to 6 tablets because it seemed the more I take, the more improved my symptoms. As it turns out, the symptoms did disappear.

Today I finally went to the pharmacy and purchased pharmacy grade iron tablets. The once I have now contain 567,7 mg Ferritin(II)sulfat, so 100 mg elemental iron per tablet. I decided to start by taking 2 per day. I took some 1 hour ago and right now my legs feel unusually relaxed. Would be nice if really start to profit long-term from iron tablets.

You asked me about the other tablets: it seems like one tablet contains 14 mg of elemental iron.

badnights
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Re: Cannabis

Post by badnights »

I wish my response was that fast! For me, it takes a couple of weeks after I reduce iron before the symptoms get worse, and again a couple after I re-start iron before the symptoms get better. This same pattern happened at least 4 times with iron pills - once I quit completely, another time I reduced from 3 to 2, or I reduced from 3 every day to 3 every second day, etc. Each time it took 2-3 weeks for the ill effects, then a week before I realized why, then 2-3 weeks after upping the iron before seeing the benefits.
So a few days ago I had RLS symptoms who were very unusual and weird for that time of the day. Additionally the symptoms persisted even after I was using additional medication (10 mg Oxycodone + 0,15 g marijuana flowers) but then I remembered: I hadn't taken the iron tablets the night before
This is exactly what happened to me every time I reduced my iron pills, and right now it is happening again, I think because the infusion has worn off. It is mild enough that I can do stuff, but I can't nap- - the symptoms push through and force me to get up. It is very very aggravating and depressing. Napping is what keeps me going so I am having a rough time.

And around 3 or 4 PM it gets so distracting that I can't do serious work. I have started taking my nighttime meds earlier to deal with it, but then I need to sleep earlier otherwise I'm still in need of sleep when the meds wear off, but evil thing - I cannot sleep, even though I take the meds, I take the zopiclone, even if I take extra zopicline, I cannot sleep. I find myself sitting up in bed in a weird sleep state that is not restful at all.

As usual, it took a while for me to realize that lack of iron has been causing this. Because I can't travel to the States, I can't get an infusion. I have been wondering if I should return to 3 pills a day x 65 mg elemental Fe, which is what I was taking before the infusion. Right now I am only taking 2. I've been holding off in case I actually go get a blood test, but I don't even know if the labs are open. I should just forget about the test, forget the infusion, and take 3 pills! so that in 2 weeks the misery might be over.
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

Re: Cannabis

Post by QyX »

Two days ago I decided to take a break from using medical marijuana for two reasons: I want to better understand the effect those more potent iron tablets are having on me and to simply reset my brain a bit. Personally, I am not that big of a fan of the psychotropic properties of THC, especially the way it interferes with your sense of time and your short term memory. Additionally I have hayfever and THC can significantly worsen some of the symptoms for me so I just needed a break.

In the past days it became quite obvious that those iron tablets don't just let me sleep but they also make me sleepy. The feeling I get from those tablets is very similar to how you would feel when you have eaten a lot and just feel tired and lazy because you have eaten so much. When I took those iron pills during the day, I often was so lazy and sleepy that I could get nothing done.

But this made me think: maybe I can sleep without marijuana now? And no doubt about it: I sure can (at least I could in the past 2-3 days). Of course things are much more complicated than that. I've used medical marijuana daily for the past 14 months now and since THC is stored in the fat issues, there is still a relevant amount of THC in my systems. But still: that I was just able to stop without my RLS symptoms going crazy or developing any kind of withdrawal symptoms is remarkable.

Yes, my opioid dose has increased by maybe 30% for now but this is not surprising. Other than that I have no clue what is going on here. When I started using medical marijuana, I was in quite a bad shape, depressed and suffering from out of control insomnia again. So I don't think it is possible for me to completely avoid medical marijuana but maybe I don't need as much anymore as I needed in the past. Maybe it is enough when I just use it on 2 days and can live without it for the rest of the week?

But in general I have no idea what is going on right now. As great as medical marijuana can be for insomnia & pain, the psychotropic side effects are still significant and I just wanted to feel all normal so badly again. Most likely I will restart medical marijuana in the next days but this time I will try to keep the dose as low as I possibly can and only use it when there really is a need or when my opioid dose is going to explode. I wish there would be effective marijuana without all the psychotropic side effects but it seems like that all the therapeutic benefits are mostly related to THC. The CBD oil I am still taking but it doesn't seem to have any effects on RLS pain or insomnia. At least as far as I can tell.

So next week I am going to make an appointment with my cannabis doctor and see what she has to say about the situation.

badnights
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Location: Northwest Territories, Canada

Re: Cannabis

Post by badnights »

Very interesting.
In the past days it became quite obvious that those iron tablets don't just let me sleep but they also make me sleepy.
Our brains undoubtedly use iron in many ways that are not yet understood. I noticed after my infusion that my sleep was more restful, I was able to go to sleep earlier, and my depression was a lot better. Holland also noticed some surprising effects that seemed completely unrelated to WED/RLS.
So I don't think it is possible for me to completely avoid medical marijuana but maybe I don't need as much anymore as I needed in the past. Maybe it is enough when I just use it on 2 days and can live without it for the rest of the week?
That would be great.
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

Re: Cannabis

Post by QyX »

Okay, I have more news. There is undoubtedly a super interesting dynamic process going since I started taking those stronger iron tablets. Almost 3 weeks, I have to say that I am experiencing massive improvements in my energy, motivation, mood, anxiety, sleep and pain. In the last 3 days, I felt so rested from sleeping and was waking up so fast after I slept that I really can't remember when I felt like this the last time. The way it feels like right now is like somebody would have turned some switch in my brain from off to on.

For so many years, my normal state of existence is feeling sleepy and tired even on days, where I slept enough. Of course there are exceptions and I sometimes have phases where at least half of the day is good but feeling "normal" never lasts longer than more than one day. Where this leads, I honestly have no idea but if the situation would continue to improve and then stabilize, that would be absolutely magical but even so far, the effects of those iron tablets are quite impressive and feel like nothing I have experienced so far. And I can tell, because over all the years, going back to the times when I was diagnosed with ADD at 14, I've been prescribed medication that a ffect the central nervous system.

Regarding my sleep and insomnia: this probably a much more complex problem than I ever explained here so far and I think to fully understand how absolutely massive and insane the currents developments for me are, I have to offer some more background and context.

So as I already said, with 14 I was diagnosed with ADD and got a prescription for Ritalin (Methylphenidate). I can remember having sleeping issues maybe starting at the age of 12 / 13. Ritalin improved my situation for about one year quite a bit but with 15 I developed more and more depressive thoughts. When I was 16, my father committed suicide and when I was failing in what you could call college, I had a full psychotic breakdown with hospitalisation at the age of 19.

It is not really clear why that happened. Some say the reason for the psychotic episode was cannabis however in the weeks before the episode, I didn't use cannabis and only when I was already psychotic started using again. The much more likely reason is that it is a mixture of trauma and genetics. My father had a psychotic depression when he killed himself and my aunt (the sister of my mother) has a classic bipolar I disorder with several psychotic episodes. And since I was having obvious mood swings for quite a while before I was psychotic, the obvious diagnose was a bipolar I disorder for me, too.

So I got put on Lithium and atypical antipsychotics and took those drugs for roughly 7 years. As you all can imagine, this was pure horror for my RLS but at that time nobody knew. When I later noticed that antipsychotics could trigger mild RLS symptoms, I didn't bother too much about it because the symptoms were not painful and always went away within 60 minutes. So I never told anyone about it.

The thing was: even before I had the psychotic episode when I was 19, I already had horrible insomnia and I think the psychoses never would have happened if I had been able to sleep. But in the months before episode, I barely slept and this kind of insomnia never disappeared ever again which is why I continued taking antipsychotics even though I knew it would be better to just take mood stabilizers for bipolar disorder, if possible.

When I was 26, I started to have a horrible reaction to antipsychotics and Lithium. My whole body started to rebel against them. But as you can probably imagine, when you and your doctors are all 100% convinced that you have a severe bipolar I disorder where stopping the medication would lead to catastrophe within months. So I went through quite an ordeal and honestly since all this happened, when I had those horrible reaction to antipsychotics and Lithium and my brain simply started to malfunction more and more with all kinds of bizarre neurological symptoms that nobody could explain, it was by far the most horrifying experience I've ever made. It also went on for such a long time.

I could feel that something horribly wrong was going on in my brain and we were almost completely powerless to do something about it. At one time, my insomnia was so crazy and bizarre, that I was only able to sleep when I used the amphetamines that I've gotten for my ADD. Other than it was impossible to calm my brain. Benzodiazepines didn't work at all for many months, withdrawing from my antipsychotics was also the most ugly and horrible process I've ever lift through. Then later, when Benzodiazepines finally started to work I've got talked into taking them long-term by two different doctors because nothing else was working and nobody had any idea what even theoretically could be tried. As you can imagine, stopping them later was quite an ordeal, too. But then because nothing was working again, I took them again and so this drama went on for over 2 years until I discovered Carbamazepine. It didn't make me normal but still so much better, at least good enough that I finally could go to medical school.

Anyway, the way I am slowly starting to feel, it reminds me of better times, of days I sometimes had before my RLS got so bad. I really don't want to get my hopes up too much since as you can see, my insomnia is quite a tricky problem and goes way beyond just RLS and is without a doubt connected to the psychotic episode I had, the mood swings in my teenanger and early 20s, my ADD and my autism spectrum diagnose. All this points into the direction of dopamine. Something is clearly not working properly in my brain in that area completely independent from my RLS which of course explains why my case is so damn complicated and difficult to treat.

The iron now really seems to have a major major impact. I will keep reporting on this and I think even my doctors will be quite happy and interested in those developments.

Regarding sleep, I have to add that I still think it would be completely impossible to sleep without of cannabis. Kind of weird that now cannabis, which for sure played a role in the psychotic episode when I was 19 is now the substance who is as responsible for my well being as opioids and iron tablets seem to be. The question I am still asking myself is: where did my bipolar disorder go? The last manic episode I had is more than 12 years in the past. Some say, I probably never had a bipolar disorder but I think it is more complicated than that. I just think that the RLS problem is dominant, that certain symptoms of bipolar disorder can't be experienced anymore and what is left of it are those mild depressive symptoms I've been showing for years.

badnights
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Location: Northwest Territories, Canada

Re: Cannabis - and Iron

Post by badnights »

Nice chronological summary of the incredible tortures you've endured that are related to your insomnia. I like your matter-of-fact manner of telling.
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

Re: Cannabis - and Iron

Post by QyX »

badnights wrote:Nice chronological summary of the incredible tortures you've endured that are related to your insomnia. I like your matter-of-fact manner of telling.
Oh thank you. I know it is a long text and I because my brain is faster than my fingers, I tend to 'swallow" some words from time to time, sorry for that :mrgreen:

Regarding my insomnia and RLS symptoms and general mental health: I continue to experience a robust improvement in virtually all areas. Last week, I had 3 nights in a row where slept so well and deep that when I woke up, it almost feel like I was in a coma. This made me wanna try if maybe taking just one iron tablet is enough. I still slept great but for some reason why too long and when I finally woke up, I could instantly tell that I would not be able to sleep next night. Also my mood was slightly depressed, which can happen easily to me when I sleep too much.

As a consequence I had two days that weren't so great and so I went back up to two iron tablets which improved my mood within half a day back to what it was. The amount of Cannabis I use is now reduced by half. On average I inhale 4 times per day in the hours before I go to sleep. In the past days inhaling only two times was enough.

But it is not just that. The amount of mental energy I had in the past days is just incredible. I felt strong, motivated and energized like some black magic was happening. In all those years, I have taken over 60 different substances and drugs that affect the central nervous system and I never experienced even anything remotely similar to what I am experiencing right now.

I wrote up parts of my story in that other post to provide some context as to how completely insane, absurd and crazy those currents improvements are for me. This now made me understand that I never had a real chance of finishing a normal school or university. That I still managed to finish best in my class in private school and made it to med school now looks quite insane and bonkers to me.

Now the big question is: will I be able to maintain the current dose of two iron pills without running into problematic iron levels? My hope is, that after I build my iron levels for a few weeks / months one pill is maybe enough to achieve the same effect I'm currently having with two.

What is clear to me however is that I will need to see a hematologist to develop a long-term iron supplement strategy that maximises my mental and neurological health without putting any of my organs at risk. Additionally I've been researching the general background of why iron is necessary in the brain. I will post some of it in the next days but I can already say that it is quite shocking that no doctor (except my cannabis doctor) ever recommended trying iron tablets and when I tried it myself a few years ago, it probably wasn't long enough and I had too many other issues that probably made it impossible to notice any improvements I might have had at that time.

So for the first time ever it feels like I am winning the battle / fight against my RLS.

And this also makes me wonder: why isn't it a general recommendation for all RLS patients to eat least try oral iron supplementation? The RLS guidelines in Germany are outdated but considering everything that is known about iron for many years, it seems wrong that it isn't mentioned.

This also shows: you can have all the opioids, medical marijuana and anticonvulsants in the world. Those substances can improve RLS a lot, no doubt but when your brain iron levels are completely messed up, they are not enough to let you live. After all those years, I can clearly say that things are now improven for the better.

A big thank you for all the support and nice words I experienced here over the past years. There is no good RLS support community in Germany, the online forum there has barely any traffic so I am so glad this forum here exists.

brossman
Posts: 27
Joined: Sat Apr 20, 2019 4:20 pm

Re: Cannabis

Post by brossman »

You certainly have had quite the journey! Just curious about people's experiences for timing of day for taking iron supplements. I usually take mine first thing in the morning. Is there a better time to take it? Could it work better for sleep if you took it at night?

QyX

Re: Cannabis

Post by QyX »

brossman wrote:You certainly have had quite the journey! Just curious about people's experiences for timing of day for taking iron supplements. I usually take mine first thing in the morning. Is there a better time to take it? Could it work better for sleep if you took it at night?
I am taking one pill in the morning and one pill at night. Was thinking of taking everything at night but haven't tried it yet. There is no way to know what is better until I have tested it. It could be, maybe not. Most likely it is completely irrelevant in the long-term but as long as I am building up my iron, it maybe could make a difference for now.

Today I had hypersomnia again. On average I slept roughly 7 hours per night in the past 2 weeks but today it was 9 hours, then I woke up for 20-30 minutes only to fall asleep again and sleep 5 more hours and then I only woke up because I was experiencing mild symptoms of opioid withdrawal together with RLS pain symptoms. After I fixed this with medication, I still felt all kinds of weird but right now I feel kind of okay again.

Right now, this is really a bit of a rollercoaster ride. When I felt so normal in the past days, it felt like absolutely everything is possible again but this hypersomnia episode reminded me that the overall situation is still far away from what it needs / should be. I think this is a process now, who will be going on for a few months while. For cannabis to become really effective and stable, it took 9 months but for me personally, it honestly doesn't matter that much as long it takes. To have weekly improvements is great.

Of course there is also no telling how good it will get and right now it is really difficult to not be optimistic, even I you should know better. Just this time, it feels so different.

Rustsmith
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Re: Cannabis

Post by Rustsmith »

Is there a better time to take it?
I cannot comment about morning vs night as increasing my ferritin level didn't help my RLS. However, it is important to take oral iron supplements on an empty stomach. That means 3 hrs after a meal and preferably 2 hrs before. If you are taking iron sulfate tablets, it is also important to take a Vitamin C along with the iron or else down it with some orange juice.

There are a couple of other caveats when it comes to oral iron supplements. They should not be taken at the same time as thyroid meds (which also require an empty stomach) because the two cancel each other out and you don't get any benefit from either one. You should also avoid taking iron supplements around the time that you take a calcium, magnesium or zinc supplement (which includes TUMS). Calcium, magnesium, zinc and iron are all absorbed by the same cells in the intestines and when they are all competing, iron loses out and does not get absorbed.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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

Re: Cannabis

Post by QyX »

Quick update: I had another hypersomnia episode. It played out similar than the last time: again I had three days were I felt great and was functioning well. Then for some reason I couldn't sleep even though I was awake for almost 20 hours at this point. So I vaped more marijuana until my brain stopped fighting and I was sleeping. I woke up after 7 hours, felt all kinds of weird, was awake for maybe 5-6 hours and then fall asleep again for another 10 hours.

After waking up again, I felt even more weird, like my brain was wrapped in fog. Couldn't get anything done that day, felt super sleepy at that night I slept another 10 hours, 4 more hours in the afternoon and then another 8 hours during the night. Only today I am starting to feel normal again.

I have sadly no idea what is going on or why this is happening but it always seems to happen when I had a bunch of great days, then when I am about to start feeling really great, I suddenly can't sleep anymore, have to use a lot Cannabis to finally get to sleep followed by 1-2 days of hypersomnia.

If I had to describe the way it feels: it is like on the more normal days it is like my brain is demanding too much of itself, it gets out of balance and as a consequence I suffer from a mini burn-out where I need to sleep a lot to recover from all the activity it had on my "normal" days.

Sleeping bad or not sleeping at all for one night is not that big of a deal for me. I guess we are all used to this. But that it then switches from insomnia to hypersomnia is a bit weird. It is like an overreaction. Not sure what I can do against it. Also on those hypersomnia days, my mood drops down quite a bit and I am fortunate to have marijuana with potent antidepressant properties (Bedrocan / Jack Herer is the name of the strain I use for this) to get me out of this hole quickly.

I am also really impatient with the current process. I so badly want to finally rely on myself again and not be afraid that every day could be one of those days where I can't sleep again, followed by 1-2 days of hypersomnia and bad mood.

Anyway, I can clearly tell, based on my average activity and how much I am communicating with other people, that I am doing much better compared to the situation in the previous months. As long as this process continues, I feel like I don't have much reason to complain.

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