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.
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QyX

Re: Cannabis

Post by QyX »

I can order oils in the pharmacy or even make them myself but the pharmacy can only produce oils with strains here available in Germany. And Red No. 1 is currently not imported and as far as I know there are no plans for it to come to Germany.

When I vape during the day, I tend to need to less opioids during the day. And it is very easy to move the onset of more significant symptoms later into the night. But what I don't like is when Cannabis is making me lazy. So I normally don't vape before 7 pm.

Insomnia was always my greatest problem in context of RLS since access to high potent opioids was never an issue for me. My first RLS doctor put me on Oxycodone without me asking for it. My symptoms were simply that extreme.

The Cannabis I mainly got for insomnia but it is also quite nice that it helped me reducing my opioid and Oxcarbazepine dosage a bit.

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Cannabis

Post by Icantsleep »

So ..... what do you do when you get a chest cold ?
Do you vape anyway ?
What if it is severe ?

My kids just gave me something God awful, the worst of it is in my chest now
I had 3 draws of the Red #1 after bedtime 50mg tramadol only saw me fall asleep for 30 minutes before RLS onset.
It did work .

I then woke up 3 hours later without a voice .
It was the only way I was going to stop the rls though .

I did take a Red #1 gel cap , and will likely take at least 2 tonight
.... cause there is no darn way I could vape anything right now
(And we arguably have the best vaporizer for medical use in the Mighty)

QyX

Re: Cannabis

Post by QyX »

I haven't had chest cold in a long time but here is what I would do: block the cough with Codeine. Tramadol doesn't work for this purpose but Codeine is quite potent in that special situation. That should make it possible to use a vaporisator even when having bad chest cold.

Of course there is always the possibility to consume cannabinoids orally. I still use small doses of Sativex spray, containing THC to CBD in a 1:1 ratio. If it would be really bad, I would increase my Sativex dose or consider creating my own extract from medical marijuana.

Recently I saw footage on YouTube of somebody using an adapter for the Mighty to vape through a small bong (water pipe) to have an extra water filter. Maybe this would work better in your situation. But I don't know if it is really worth buying a pipe and then you have to clean it all the time without having much additional use but all the work of keeping it clean and free from smell.

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Cannabis

Post by Icantsleep »

So I tried going without any cannabis of any form .
I may have taken something had I needed it, but that wasn't necessary

I only took tramadol 25mg early afternoon then 50mg just as rls began right before early bedtime
I walked around for 5 minutes
.... slept 3 hours under my 20 pound queen size weighted blanket
Got up
Ate two pieces of toast
Took my usual 0.75 mg clonazepam
Back in bed
Slept kinda choppy , but got another 4-5 hours

No rls at all

I woke up with my leg kind of numb in places from the weighted blanket
(my left leg, which traditionally is the leg that experiences the most rls)
I've been using the blanket almost every night since I got it about 5 weeks ago .
The numbing seems to be going away now ...

On top of that, the sleep I got definitely helped fight whatever virus my kids gave me

I might try the same thing tonight
I hadnt had a day off from vaping even a very very small amount in perhaps 6 months

Oh ... mid afternoon i feel asleep for an hour trying to keep my eyes open while watching Netflix with no rls at all.
That is something that would normally be unheard of .

For some reason , going back years , my rls symptoms often decrease substantially when I'm really sick .

QyX

Re: Cannabis

Post by QyX »

When I am having a severe cold with fever, I tend to need more opioids than usual but I also have no trouble sleeping at that time.

Since I am using these 3 new strains, I was able to drop my Ocxcarbazepine from 1.200 mg to 600 mg daily and it could be that this drug plays a role in my insomnia issues. Carbamazepine I had to stopped because it suddenly was causing significant alertness and Oxcarbazepine is quite similar to Carbamazepine. So I would not be surprised if Oxcarbazepine has stimulating properties, too .. however they seem to be quite mild.

For now I am very happy that I seem to be able to improve my situation from week to week a little bit.

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Cannabis

Post by Icantsleep »

So my streak of no THC and no symptoms ended last night at 2 :(
Was still very sick so no vape
Had moderate rls give me an issue 3 or 4 times
.... plus the culmination of being sick and trying to push myself back into a "normal" sleep pattern gave me a 16 hour headache (which was more problematic than the rls)

Will see what I decide to do tonight

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Cannabis

Post by Icantsleep »

So I would advise anyone who uses cannabis daily for months , then takes a few days off to really ease back when resuming

I tried to take 25mg tramadol instead of 50mg for my bedtime dose with plans to vape if necessary

Sure enough, 15 minutes after going to bed I got rls symptoms
I took a mere 3 draws of my 25% THC bedtime indica and was way too blasted to sleep
... sure it stopped the rls , but it was way too much for about 2 hours
I missed my window for sleep, then had rls more often then not the rest of the night and morning

QyX

Re: Cannabis

Post by QyX »

Ye, I can see how this can happen.

When I am too wasted from Cannabis, I can't sleep either but also have some weird stimulating effects and have to wait until they are gone.

Since yesterday I am only using 2 doses of Sativex per day, one each every 12 hours and no other Cannabis products at the time.

When you vape between 0,5 and 1 g of Cannabis flowers every day over a longer period of time, Cannabis will lose its hypnotic properties until you take a break. At least this is what happening to me. But what is really interesting: when I use low dose Sativex, I still can sleep but I am not having any proper day - night structure.

Bottom line is: THC / Cannabis can be solution for RLS insomnia but it is not a perfect one.

For the future, I will also get some strains with less THC. Currently all strains I am using have between 18% and 25% THC ... for the future I will obtain some Orange No. 1 which contains around 11% THC. I liked in the past but didn't get a 2nd prescription.

QyX

Re: Cannabis

Post by QyX »

So, interesting ... I am still able to sleep with only small doses of Sativex.

The only issue is that my day-night rhythm is not in tact and I tend to sleep mostly from late morning until evening .... but this day I managed to sleep from midnight until 4 am in a very natural way.

I have to say, this is all very interesting. It feels like the chronic use of cannabinoids somehow regulated my brain so that I have less trouble getting tired in a natural way. So maybe smaller doses of THC are helpful with falling asleep fast while higher doses tend to have stimulating properties initially. At least that's how it feels at the moment.

The downside of not vaping and only using Sativex is, that I have to take more opioids again. Currently I am at 120% of my average dose which is about 200 mg of Morphine (or 100 mg Oxycodone) in 24 hours.

I am not looking to completely replace vaping with Sativex but it might be cool if I can get Cannabis to work in a way that I only need to vape on 2-3 days of the week. While THC is a really good RLS painkiller, too much THC also makes me lazy and sleepy and can make it very difficult to get going.

When you look back at how I started with Sativex, this is very interesting to see how my response to it has changed. It feels like a reliable drug now while in the first months, it was pretty random when I was able to sleep. There was no feeling of getting tired in a natural way.

So right now I am not sure how to proceed. Even with increased opioid usage, I still have significant pain symptoms right now and it is only 9 pm here. So it looks like that the RLS pain symptoms will make me vape again today.

To conclude: I am very happy that I am getting more options now. Less Marijuana and more opioids on days where I have to function and only use Sativex on a daily basis while I can reserve vaping for the really bad days or after going to the gym, where I afterwards often feel very stimulated, get additional RLS symptoms and normally can't sleep either.

There is now absolutely no doubt in my mind, that I made a huge step in the right direction with using medical Cannabis.

When you have RLS and are in doubt if Cannabis is the right thing for you, I definitely would give it a try. It seems to be a real game changer and might be the best overall option for RLS related insomnia.

I can say that it feels really good to get more and more control back.

Can't wait to see what my doctor has to say about all of this.

QyX

Re: Cannabis

Post by QyX »

So lately my situation has massively improved. For whatever reason Cannabis has developed in to being an extremely reliable sleeping agent. I have slept every night in the past 2 weeks. It is like the long-term use of Cannabis has somehow rewired my brain.

Because I sleep every night atm, I am experiencing an uptake of RLS symptoms and have to take more opioids during the day to manage pain symptoms but still everything is so much better now. I am coming back to life more and more every day.

Not sure what happened but atm Cannabis seems to work wonders!

Polar Bear
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Re: Cannabis

Post by Polar Bear »

I really hope this continues for you.
Betty
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

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Cannabis

Post by Icantsleep »

QyX wrote:So lately my situation has massively improved. For whatever reason Cannabis has developed in to being an extremely reliable sleeping agent. I have slept every night in the past 2 weeks. It is like the long-term use of Cannabis has somehow rewired my brain.

Because I sleep every night atm, I am experiencing an uptake of RLS symptoms and have to take more opioids during the day to manage pain symptoms but still everything is so much better now. I am coming back to life more and more every day.

Not sure what happened but atm Cannabis seems to work wonders!
Happy for you

I seem to be getting opposite effects
The culprit being my non 24 hour circadian rhythm disorder rather than the cannabis .
... as regular and routine i keep the rest of my life, I'm just not tired enough to sleep until later and later each night .

You mention you've slept ever night for 2 weeks
... is there a regular pattern with your sleep/wake times ?

QyX

Re: Cannabis

Post by QyX »

Icantsleep wrote:
You mention you've slept ever night for 2 weeks
... is there a regular pattern with your sleep/wake times ?
Yes, sort of.

So I vape two times each evening somewhere around 9 pm to 11 pm and take additional 3 doses of Sativex (2,7 mg THC + 2,5 mg CBD per dose) plus additional 7,5 mg CBD oil.

The vaping I mainly do for pain relief to boost the effects of opioids and to cause some initial relaxation and mild sedation. I know understand that the effects of vaped Cannabis are not lasting long enough to keep me asleep. However taking Cannabis orally seems to do the trick. As it turned out it is very important (in my situation) that I get a stable release of THC into my system so that I fall asleep and stay asleep.

Just vaping or just using oral Cannabis meds would not work for me.
I seem to be getting opposite effects
The culprit being my non 24 hour circadian rhythm disorder rather than the cannabis .
... as regular and routine i keep the rest of my life, I'm just not tired enough to sleep until later and later each night .
This is exactly the issue I had in the past 10, 15 years. But the chronic, daily use of Cannabis has changed this now. For whatever reason it is now very easy for me to fall asleep at about the same time every night.

During the summer, the effects I had with Cannabis were sometimes quite poor but I kept going and now the effects are great, very reliable and relatively fast acting. I normally can fall asleep within 90 minutes of vaping Cannabis.

I guess now we have to wait and see if this continues.

QyX

Re: Cannabis

Post by QyX »

New update with somewhat good news but before we come to that, I also have to say that - at least at the moment - Cannabis is not as reliable as it was in late October and November.

What happened in late October and early November was quite exceptional. For a total of 4 weeks I basically had no sleeping issues whatsoever. In the past 3 weeks, Cannabis only worked really good on 4 days per week. But this is still very good compared to the summer and seems to indicate, that I should take small breaks every couple months to reset tolerance a bit.

Now the news:

So far I've been obtaining Cannabis prescriptions from a private doctor where I was sent to from my Neurologist since she does not have any experience with prescribing Cannabis flowers. This meant I had to pay the doctor and the expensive prescriptions (1g medical Marijuana costs about 20 EUR in German pharmacies, a 3 month supply of Sativex 360 EUR, CBD-Oil 130 EUR month and every appointment with the specialist an extra 120 EUR) all by myself.

At least I was lucky enough to have a family who is able and willing to support me financially.

Today I had that appointment with my Neurologists and she is willing to continue prescribing the cannabis medicine in the future. We will now send an application to my insurance and they have to decide within 4-6 weeks if they will cover the costs for medical Marijuana. That insurance can cover the costs for Cannabis is a relatively new thing in Germany and it is still quite a struggle to get insurance companies to cover the costs. Ultimately it might be necessary to sue my insurance, something that other patients had to do ... but we will see what they say in my case.

Since I have the support from two different doctors, I am pretty optimistic that my insurance will ultimately be forced to cover the costs. It is only a matter of time now. This will also open the possibility to use Sativex and CBD-Oil in higher doses then I am currently using it.


The 2nd good news is that she referred me to a doctor where I can get an iron infusion. I don't know yet how difficult it will be to get an appointment and how long I have to wait for one but at least my doctor is supportive of this therapy. It is just too bad she does not do it herself due to lack of experience with it. I am also her very first patient where she is supportive of the use of Cannabis flowers. Normally she only does prescribe oil solutions and Sativex.

So I don't know ... I don't think I have much reason to complain, at least compared to other patients.

I should have pushed for iron infusions much earlier and not given up after I heard she is not doing them herself when I asked her about it last year for the first time. And then well, I wanted to see what medical Marijuana can do for me before I wanted to push for iron infusions a 2nd time. But damn, it is honestly something that should have done during the first year of my diagnosis.

Given the potential benefits of iron infusions, it is really a sad state of affairs that all the most effective treatments for RLS (iron infusions, opioids & medical Marijuana) are so difficult to obtain or are either hugely expensive.

But sure, if you want DAs, a class of drugs that cause augmentation in about 80% of the patients within 2 years, this never seems to be a problem.

So I hope the fight with my insurance won't be too bad and there are already plenty of cases where the insurances were forced to cover the costs for far more less serious medical issues like ADHD.

But in the end, what I really want are those iron infusions. Medical Marijuana is great for RLS but those iron infusions can be a real game changer.

I am already so impatient ... damn ...

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Cannabis

Post by Polar Bear »

QyX. What excellent news. Impatient yes, but so exciting. A new direction of hope for you.
Betty
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

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