Page 24 of 35

Re: Medical Marijuana

Posted: Thu Jun 15, 2017 4:01 pm
by NatWest
Hi Carol,

It's frustrating just to read what you're going through. Hopefully, things will improve. I know there are a number of states that claim to have medical marijuana, but the only thing they sell is Charlotte's Web. Which, actually, might work for rls ... but there are so many things that can be treated if people do a little research instead of trying to streamline it for business/manufacturing purposes, and end up selling a bunch of stuff that doesn't benefit anyone except the seller. We're fortunate here where I am (Oregon) because mm has been available since 1999, and, at least, we are free to try anything until we find what works. And, I was fortunate, because the first time I went to the dispensary after getting my state issued card, and told them what I had, there was a guy there who knew exactly what I needed because he had rls, too. And, what was really fortunate for me, he normally only worked at one of the growers' greenhouses, not at the dispensary. So, it was purely coincidental that he happened to be there.

I hope things will come together for you. But, even here, what I need isn't always available, so about 1/3 of the time I'm experimenting. Please keep us posted on how things are going! Peggy

Re: Medical Marijuana

Posted: Thu Jun 15, 2017 9:38 pm
by pinkynose
Thank you Peggy. Just getting a response from someone who understands my frustration is a help. Not that I wish it on you or anyone else. Xo

Re: Medical Marijuana

Posted: Thu Jun 15, 2017 10:02 pm
by ViewsAskew
pinkynose wrote:Thank you Peggy. Just getting a response from someone who understands my frustration is a help. Not that I wish it on you or anyone else. Xo


That is one of the best parts about this board, isn't it?

Re: Medical Marijuana

Posted: Mon Jul 03, 2017 12:23 am
by pinkynose
Hi all. Here's my update:
A few nights ago about 2 hours before bedtime I tried 1 vape of 9lb hammer by itself and although it had a nice relaxing effect it also activated my brain. I'm guessing that was from the 20% saativa. 5 hours later I was not asleep so I had to take Ativan to knock me out.

Last night I tried adding 1 vape of CBD with 1 vape of the 9 lb hammer. It made me feel yucky and wiped out but again I could not sleep. The saddest part was I couldn't even read, just lay there and not sleep. At least with the prior experiment I was having a little fun:) Once again after a few hours I took something to sleep.

My governor signed a bill recently not to allow the sale of the MMJ plant so my plan to make my own cookies once I found the right strain is on hold. That method has been the best for me and I just have to hope that his bill will be appealed.

Wishing you all a happy and safe 4th of July.
Carol

Re: Medical Marijuana

Posted: Mon Jul 03, 2017 1:44 am
by yawny
Carol, that's frustrating, I'm so sorry. Your experience is exactly what happened to me when I first got started with MM. It activated my brain, I couldn't sleep and I was miserable. From my experience, and what stoners at the dispensary have told me, Sativa doesn't necessarily activate your brain or give you head effects. Several have told me that categorizing Sativa for daytime or energy, and Indica for nighttime and relaxing, is oversimplifying. That you have to focus on the characteristics of the individual strain. That said, I've tried strains that people love for sleep and have had no effect, like I drank water, and another that energized me. A friend's boyfriend gets energized when using Indica, and tired when using Sativa. So, it comes down to the individual strain and how it affects you. Don't give up hope, you just need to keep experimenting when you have the options. If you find your brain activated again, you might want to try chewing on a peppercorn, or gently inhaling freshly ground pepper. It's supposed to lessen the effects of the marijuana. Fingers crossed that bill is appealed.

Re: Medical Marijuana

Posted: Mon Jul 03, 2017 6:34 am
by ViewsAskew
Hope the bill is repealed, Carol.

That activation thing (hasn't happened to me with MM, but with many other substances) is SOOOOOO annoying!

Re: Medical Marijuana

Posted: Mon Jul 03, 2017 11:47 pm
by NatWest
Hi Carol,

I've had that happen to me, too. Some strains seem to really ramp up my imagination, so my thoughts are going all kinds of weird places, which would be fine if I was sitting around having fun with friends, but not so fun when you're trying to go to sleep. I have found strains that I use with the Critical Mass that make me feel sleepy and relaxed, and my brain just kind of zones out, and some have the added benefit of making my legs feel somewhat numb and heavy, like it would be impossible to move them. Usually, there are people in the dispensaries who know which varieties are more stimulating and which are more relaxing. But, all that said, it may take some experimenting. I'm using one now called Gorilla Who, that is very relaxing, and kind of fogs my brain up, so I couldn't think about anything even if I wanted to! LOL :)

Peggy

Re: Medical Marijuana

Posted: Tue Jul 04, 2017 2:28 pm
by legsbestill
As a person in a country where there is no form of legal mmj, I would like to thank you, Peggy, for your detailed consideration throughout this thread of the various strains and means of consuming marijuana. It is impossible to know what strain one is getting with 'street' marijuana and we have no useful dispensaries to advise. Consequently, I have embarked on an experiment to grow my own as it is the only means I have found of controlling my crippling insomnia. Thanks to your recommendations regarding Critical Mass and it's genetic relations, I am growing a variety called medical mass and am hoping it will help. I am also growing Sensi-skunk automatic which is supposed to be really easy to grow and is recommended for sleep inducement and has reasonable levels of cbd. The sensi-skunk is nearly ready for harvest. I am starting to get excited about having my own 'clean' supply. My next experiment will be to obtain seeds close to Gorilla Glue that seems to work so well for you.
It is a slow enough process for me as early attempts to grow outdoors have been thwarted by insufficient sunlight (predictable here but hope springs eternal) and I am now using a tiny indoor tent with cfl lights. It can only accommodate two plants and the sensi-skunks were furthest along so they went in first!

Re: Medical Marijuana

Posted: Tue Jul 04, 2017 2:40 pm
by NatWest
Thanks! I was fortunate to find someone really helpful on my first visit to the dispensary, someone who also had rls! But the rest has been a lot of experimenting, since it seems like my symptoms are always changing and responding in new ways. So, I look to others here as well, to try to find the missing pieces and links, like putting together a puzzle in search of a good night's sleep.

Good luck with your growing! I'll look forward to hearing your results. That's something I haven't tried yet, because I don't have any place here to do it. But we're working on having a friend grow for us.

Peggy

Re: Medical Marijuana

Posted: Fri Aug 04, 2017 9:43 am
by johnny
Well I don't know about MM but after having tried several prescription meds such as mirapexin I had reached the end of the road, I was entertaining thoughts of suicide and was withdrawn from those around me.
RLS was spreading into my arms and torso and I couldn't even listen to mindfulness tapes.
Yesterday I decided to buy grass of the street and smoked it last night.
I had the first decent nights sleep in months without taking strong opioid meds to try to sleep.
I'm not promoting it but it has worked for me, I have worked in the field of addiction for many years but sheer frustration has led me down this path.
I will post further when I have had a few decent nights sleep and come up with a plan to manage it.
Hope this helps.

Re: Medical Marijuana

Posted: Fri Aug 04, 2017 12:55 pm
by stjohnh
Johnny, welcome to the RLS Community. You will find lots of helpful information here and supportive people. People can help you more if we know a little bit more about your situation. How old are you, what medicines are you taking now, what have you taken in the past? Do you live where you can get legal medical marijuana? Have you had your ferritin checked?

You mentioned suicidal thoughts, most of us have had those at one time or another. How severe are they and is suicde something you're seriously contemplating?

I'm glad you were able to get a good night's sleep with the smoked marijuana.

Re: Medical Marijuana

Posted: Fri Aug 04, 2017 11:56 pm
by badnights
hi johnny and welcome. You've probably realized there is no real "end of the road" as far as treatment goes, though individual doctors might throw their hands up in despair. That's just because it's the end of that doctor's road, not the end of yours.

I've been taking hydromorph contin for ... gosh, a long time now. 6 years maybe? I augmented really fast on ropinirole, then on pramipexole, then I got seriously depressed and intermittently suicidal on gabapentin and codeine, went through 3 weeks from absolute hell when I stopped those cold turkey (not quite cold turkey, I was given 5 mg oxycodone, which was like nothing, it had absolutely no impact). Then I re-connected with the neurologist who was responsible for that, and after putting me on hydromorph contin, he passed me along to a sleep specialist, who has managed me from afar ever since.

At first I had to increase my HM dose every 6-12 months. I moved from 9-12 mg to 18-21 mg daily over 3 yrs or so. Once I got above 15 mg, I had to increase my dose even more - take a morning dose - to prevent mini-withdrawals every afternoon. I stopped being able to orgasm. I began to seriously hate it. I tried adding other meds, but my mainstay was the HM.

Then one of my doctors suggested I try a diet - the Wahls diet - that was developed to help neurological conditions (MS, but she felt it would work for WED too). I quit gluten and dairy, quit added sugars and heavily processed food. I added huge amounts of vegetables, organ meats and seafood (not as often as I was supposed to, though). And over 6 or 9 months I gradually reduced my medication right back down to 9, sometimes 12 mg daily. This was stupendous. I wish I could have continued to drop it, but I seemed to hit a plateau. Still, to have done that with diet alone is pretty revealing.

What opioids have you tried?

My son has milder WED/RLS, and he used to smoke weed. He said it helped, so I tried some even though I've never been able to tolerate it (it makes me throw up or go to sleep. I can't seem to dose it right). The first time, using a Sativa-heavy strain, it helped. The second and third times, with an Indica-heavy strain, it made my symptoms worse. Then I got a jar of tincture, to take at night, but that seemed to have no effect. So I gave up on the whole mj thing.

Since then, mj has become legal in many places, and you can get specific strains. People know which strains work best for them -- - if you search the board, you'll find lots of posts about it. Most people find that it helps their sleep, but doesn't help the symptoms much. However, I still remember the remarkable effect it had on my symptoms the first time I tried it for RLS/WED, so I know there should be strains out there that work on symptoms. When you use it, is it working on your symptoms or just your sleep? Are you using legal weed or do you have to get it other ways? If legal, what strain is working?

Re: Medical Marijuana

Posted: Sat Aug 05, 2017 12:41 am
by Rustsmith
johnny, if you dig your way back through this discussion thread you will find quite a few places where I have posted on my experience. But rather than have you dig, here is a summary:
* I live in a state where MMJ is legal, so I have had the luxury of trying a number of options. I have smoked just a bit, but have tried both tinctures and edible products that contain 100% THC, 50-50 THC/CBD and 100% CBD. I moved here partly so that both my wife and I would have access to MJ because all MJ was completely illegal where we used to live.
* my experience has been that none of the MMJ products help with my need to move symptoms. I still have to take a low dose of methadone to control my movement issues. I also use an anti-seizure med (gabapentin) to help me fall asleep at night because sleeping pills simply don't work at all.
* I have found that THC edibles taken at bedtime help me to stay asleep. The edibles do not kick in as quickly as when smoked, but last longer. I can only use them about half the time because it seems to build up in my system and trigger depression. But on the nights when I do not use it I find that I am waking up about every hour whereas on the nights that I use it I can sleep straight through to morning.
* The 50-50 mix didn't do very much for me one way or the other.
* I have found that the 100%CBD tincture is highly effective for times when my RLS triggers anxiety but does not do anything for sleep or movement. Unlike the edibles, tinctures are almost as fast acting as smoking and just a couple of minutes after putting the CBD drops under my tongue, the anxiety is gone.

But as you will see mentioned is discussions all over this board, we are all different. So all of us have to go at this as our own personal science experiments. What works for some of us may be completely ineffective for others. So, good luck.

Re: Medical Marijuana

Posted: Sat Aug 05, 2017 3:20 am
by ViewsAskew
Lots of great points made already. Just want to say hi to you and welcome you to the board and see how you are feeling now. I have been pretty low at times myself - lack of sleep severely skews thoughts.

Re: Medical Marijuana

Posted: Sat Aug 05, 2017 9:51 pm
by NatWest
Hi Johnny,

Thanks so much for sharing your post on the discussion board. I think some of might want to ask "what is the name of that street grass you tried?" :)

As of this month, I've been experimenting for 3 years with mm, and I know it can be quite frustrating at times. In June I decided to try the Neupro patch, since it's mentioned on every webinar. I had a lot of company coming on the 10th, and thought it might be an easier way to go with a house full, including young kids, than smoking my water pipe. But it was terrible. I got so sick, then tried a 1/4 patch, which did nothing, then 1/2 a patch, which finally convinced me to give up on it after a week of experimenting and getting almost no sleep, being nauseated, and wired up. I'd been unable to find any Critical Mass for about 3 months. Finally, around the end of June I found a Critical Mass concentrate vapor pen and bought it. I actually attended a wedding on the 24th of June without having had even 1 minute of sleep the night before. But I managed to put myself on auto pilot and had a great time.

A couple of weeks ago I decided to buy some edibles, which I'd been making myself whenever I bought flower, and tinctures, which I hadn't tried for a couple of years. I'm actually having a pretty good experience right now. I got a 100% THC tincture, and a 100% CBD tincture, and I measure them out by drops into a spoon. First, take 3 hits off of a Critical Mass vapor pen, which still makes the symptoms disappear in about 15 minutes, then I take a hit of Gorilla Glue, then 10 drops of CBD tincture and 8-9 drops of THC tincture, and it's helped me to start getting a good night's sleep again. It's still not like I go to sleep at night and wake up in the morning, but I've been able to accumulate 7-8 hours of sleep over a period of about 9-10 hours, which is good for me. So far, I'm very pleased with the tinctures, and plan to keep using them for as long as they work.

I've never had any luck with stricktly 100% CBD, but the combination seems to work, and gives me up to 2-3 hours of really solid sleep. Then I just repeat everything and am usually back asleep in about 15-20 minutes.

I hope you'll continue to keep us updated on your progress. I think most of us are very interested to hear about any new things people are trying that seem to work. I use the website Leafly.com to look up the effects of the different varieties. They give the recreational effects as well as a separate list of medical effects. I look for strains that say things like relaxed, calm, sleepy, happy, and couch lock. I avoid the ones that say things like creative, because to me that says it will have my brain totally wired up when I only want to sleep. Others can make me obsessed with some particular weird subject but unable to put it to rest or think about anything else. Not good when you're trying to sleep.

Thanks again, and welcome to the discussion board! Peggy