MM dosages? and intro

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wantok
Posts: 101
Joined: Fri Apr 01, 2016 3:14 pm

MM dosages? and intro

Post by wantok »

68 year old female. I have had PLMD (and RLS) for 9 years. I kind of inherited them from my mother when she died. Controlled many years by benzos. Quit them 2 1/2 years ago. Tried mirapex, requip, neurontin. Didn't tolerate them for different reasons--requip because it made me nervous (I have paradoxical responses often to drugs and supplements.) Went to Stanford Sleep Clinic RLS specialists and was amused to find out they don't believe you can have PLMD if you are treating your sleep apnea (since I was treating mine successfully I guess I am imagining my PLMD?). Have also tried soap (think it worked for a while actually, but then these conditions wax and wane in my experience), compression socks, stretching, hot showers. The last two help some but not always. I generally do not do well with prescription drugs so I am not eager to go in that direction but may have to. Have a pacemaker so I haven't tried TENS.

I do suffer from sleep maintenance insomnia (can go to sleep normally and sleep two hours and then awaken every two hours and sometimes stay up for hours). I describe it as loosing my sleepy juice. Once in a while I have sleepy juice and sleep much better. I tried a couple different medical marijuana things but found dosing difficult. Also stuff with THC was recommended, or more THC than I needed to make me relax and I just got stoned. The supplements for sleep that have not worked include melatonin, GABA (and many more). I just ordered wulinshen as -- sort of building off of Stanford's theory -- if I can sleep more deeply maybe the PLMD won't cause awakenings.

Of course, all suggestions are welcomed about anything. Tonight I am going to try Charlotte's Web. I am sure individual differences require playing with this, but I would love any positive experience detailing dosing. Many thanks in advance.

Wantok

stjohnh
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Location: Palo Alto, California

Re: MM dosages? and intro

Post by stjohnh »

Wantok,

Welcome to RLS family. There is a separate section for marijuana in the Non-prescription treatment section, with LOTS of information. My summary is this: Medical Marijuana (MM) helps some people with the jerky legs, but a fairly mild effect, and few can control the jumpy legs with MM alone. RLS has 2 separate sleep problems: 1. Jumpy legs keeps people awake and 2. the underlying brain problems cause insomnia, even if the jumpy legs is controlled. MM helps quite a few people sleep better. Smoked works quickly but wears off quickly. Swallowed ("edibles") take an hour or so to start working, but last much longer. Sounds like you live in California, possibly close to me (I live 2 miles from Stanford). The MM stores here usually have the mantra "for sleep use indica strains or high CBD edibles." Several people that use MM for sleep say this is not what is best for RLS insomnia, THC edibles are best. Usually starting dose is 5mg THC. Most edibles are sold in 100mg packages, so you will break the candy or cookie or whatever into smaller pieces to get the 5mg.

Another non-prescription alternative is kratom, also has several sections in the non-prescription treatment sub topic.

As you have found, all the meds that work for RLS have significant side effects, most of us here have figured out how to live with those, since the side effects, while nasty, are still better than legs jumping and no sleep. The insomnia of RLS almost never responds to standard prescription sleep meds.
Blessings,
Holland

wantok
Posts: 101
Joined: Fri Apr 01, 2016 3:14 pm

Re: MM dosages? and intro

Post by wantok »

Thanks much, Holland, for taking the time to respond and give your very helpful comments.

I didn't clarify that my RLS is really secondary to PLMD. I do get RLS but not often and I know the difference.

I did try the THC edibles at the recommendation of the marijuana doc as they were the only thing that made sense for maintenance issues. Like I said, just got stoned. (I had forgotten why I didn't go the smoking route, but you reminded me.)

So is the conclusion above to start cycling through the meds until you can find one you can tolerate to control the legs? Stanford seemed to think that there is PLMD and PLMD--the only one that matters obviously is that that disturbs sleep, thus my conclusion that deeper sleep would be part of this picture. (In my sleep study night I did not have many PLMD awakenings, but that is certainly not my regular experience of this problem.) They were actually irritated with me because I got a doctor's recommendation to see their RLS specialists but my principal complaint was PLMD. Is my strategy to address light sleep illusory?

Relatedly, I am not sure I understand your last comment re "insomnia of RLS". I am not sure I have that. Both of these conditions developed more or less simultaneously along with the death of my mother. One insightful doc said she thought that menopause (also at this time) was not the cause, but a kind of PTSD that raised cortisol levels at night as a response to the emotional trauma surrounding my mother's passing. I wake up and I don't have sleepy juice (99% of the time).

Thanks again. (We are definitely blessed in having this communication option!)

Wantok

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: MM dosages? and intro

Post by stjohnh »

wantok wrote:....
I did try the THC edibles at the recommendation of the marijuana doc as they were the only thing that made sense for maintenance issues. Like I said, just got stoned. ....


That is the disadvantage (or advantage, depending on your point of view) of the THC edibles. The stoned feeling, assuming you take the THC an hour before going to bed, only is noticeable if you get up to pee or get a drink of water. Gone by morning.
Blessings,
Holland

Rustsmith
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Re: MM dosages? and intro

Post by Rustsmith »

I did try the THC edibles at the recommendation of the marijuana doc as they were the only thing that made sense for maintenance issues. Like I said, just got stoned.


Wantok, I am one of the members who "regularly" uses THC to help with my sleep. I use gabapentin to help me fall asleep but it's affect wears off after about 4 hrs, so I would wake up and not be able to go back to sleep until mid-morning. With the edible THC I find that since it kicks in about an hour or two after I take it, the THC helps me stay asleep longer. On mornings where I still wake up too early (like today), I still have bit of a stoned feeling, but I find that after getting something to eat (and maybe an aspirin if my head hursts), the stoned feeling disappears in less than an hour.

I should also like to add to the discussion that there is some disagreement among the experts about those of us who have both RLS and PLMD. There are some diagnostic guides that say that if you have RLS, you cannot have PLMD because the movements are due to the RLS. Since the numbers indicate that 85% of us with RLS have the PLM movements during sleep, that means that 15% do not have the movements. So, I am not sure that I completely agree with that definition. Regardless, the treatments for the two "diseases" is similar.

So your question could be one of the chicken and the egg, is your RLS secondary to the PLMD or is your PLMD secondary to the RLS. In my case, I had the symptoms for both that were pretty much equal in their disruption of my life. Both responded to treatment, so I am not one to be able to choose between the two.
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.

wantok
Posts: 101
Joined: Fri Apr 01, 2016 3:14 pm

Re: MM dosages? and intro

Post by wantok »

My experience: PLMD is involuntary leg jerks always as I am just falling asleep. RLS is a compulsion to move, sometimes accompanied by involuntary movement that I can have before bed or during the night. But as you said,doesn't seem to matter insofar as treatment. That is why I was thinking that the MM used to address epilepsy might be helpful (but I still haven't gotten to the MM section here) and was going to try Charlotte's Web tonight, including a plan to smoke it again upon awakening (if this worked for several hours of sleep, this would be a big improvement). I should add that my ferretin is around 30 at the moment and I am dealing with that.

ViewsAskew
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Re: MM dosages? and intro

Post by ViewsAskew »

The jerks you have falling asleep may not be PLMS - they may be hypnic jerks. I have both and I am never aware of the PLMS - they happen when I'm in deeper stages of sleep and then waken me to pre-sleep or stage 1 sleep.

Glad to hear you are increasing ferritin!
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.

yawny
Posts: 264
Joined: Sun Nov 08, 2015 4:20 pm

Re: MM dosages? and intro

Post by yawny »

Hello Wantok, Welcome to our group...the people here are awesome. Your symptom description sounds very similar to mine. I've been experimenting with Cannabis and hoping to report my results to the group when I have consistent results but your post moved me to report sooner. Hopefully something I'm doing can help you.

I'm fairly new to RLS with a diagnosis in 2015. Like you, my RLS is possibly trauma induced as the RLS appeared after loss and my husband found I demonstrated symptoms of Post Traumatic Stress. I too have had paradoxical responses to medications so I'm leery of pharmaceuticals. Except for a few nights trying Mirapex, I've not been on the usual RLS medications because I'm trying everything else first.

I don't have daytime RLS very often, or at night, and can sit for hours with no symptoms, but it didn't start that way. I started with RLS only. While resting before bed, the symptoms would start. My legs would ache, pull, experience unbelievable discomfort where I had to move. This went on for at least a year until Vitamin E and massaging my legs stopped working. But then I started Iron and Magnesum supplements and within 2 days my RLS symptoms went away and were replaced with aggressive PLMS. I still do not know why this happened. Like you, I have PLMS jerking just as I fall asleep. The jerking usually starts in my fingers, and then continues to everywhere, even my neck. I wake up to it and then start to fall asleep again, and it repeats. It is there the entire night and into morning. But as soon as I come out of sleepiness, it stops. I have also developed spasms in muscles where my stomach, back, or thigh, will spasm (feels like my muscles are popping) as I'm going to sleep and wakes me up. I have these spasms everywhere, even in my face. Also new is small, unpainful twitching in my muscles that is there all the time. I can sometimes see the muscles moving.

I have to use something every night. I'm always tired and it's changed my life dramatically but I'm buoyed by hope. I've successfully used Xanax, or Lunesta, or Cannabis to get 4-6 hours of sleep, with a few 7 hour nights. I don't use Xanax or Lunesta very often, maybe once a week in an attempt to not build tolerance to them. So I primarily use Cannabis.

When first trying Cannabis last year, I was told to use Indica with high THC. I had never smoked it before so, a little intimidated, I tried every other product they had at the dispensary. The only thing that worked was a CBN adhesive patch by Mary's Medicinals. It worked for 2 weeks then stopped. I then tried making brownies (actually blondies with no chocolate) with high THC Indica flower strains. I made Cannabutter and substituted the butter in the recipe. I took it 2 hours before bed and never could find a dose that didn't make me stoned. For me, this meant being awake, my mind creatively spinning on ideas, and staring at the wall for hours. Sometimes I lay in a stoned relaxed state that appeared to mimic the sleepy state right before you nod off because my PLMS would start and I could lay there observing everything for hours. It was awful and I stopped my Cannabis experimentation feeling very unsuccessful. Several months passed and I re-read the Non Prescription Medicines section on Medical Marijuana and studied what was working for other RLS members. I noticed that I was using high THC only while several other members were having success with high THC and high CBD together. So I tried Cannabis again.

Now I'm having success with using a vaporizer with high CBD:THC flower along with a homemade edible with only high THC. Both used concurrently right before laying down for sleep. My results are inconsistent. I can usually get at least 4 hours solid sleep before I wake and need something else. I always have another dose of cookie next to my bed, made from a strain that only works for a few hours (so I'm not groggy in the morning). Or I will use the vaporizer again and that'll give me another 3 hours and is quicker than waiting for the edible to work. However, sometimes I get 5-6 hours from the vaporizer and cookie before bed. I'll wake a few times, and roll over and right back to sleep with no symptoms. My best guesses for the inconsistency I'm seeing is hormonal changes that women naturally experience but also possibly a food sensitivity or gut issue. I'm exploring those now with gut, hormone, adrenal tests and going gluten free. I know I have adrenal issues from years of high stress and grief. I've also experienced insomnia for years but less so on Cannabis.

My ferritin was around 30 but now it's 78 after 3 months of supplementation. I take 50 mg (2 pills) Thorne Iron Bisglycinate with 500mg of Vitamin C, twice a day. I take it on an empty stomach and don't notice any discomfort. It's recommended to take Iron 2 hours after you eat, and allow 1 hour after you take it before you eat. If you take thyroid medication like I do, allow 4 hours on either side since Iron really interferes with it. I keep daily notes on a post-it in the kitchen and track everything because I can't keep any of it in my head.

I'd be happy to share details on the vaporizer and cookies if anyone is interested.

wantok
Posts: 101
Joined: Fri Apr 01, 2016 3:14 pm

Re: MM dosages? and intro

Post by wantok »

Yawny,

Thanks so much for taking the time to detail your story. I do not know if I can get the CBN patch which I had been interested in before, although I remember it was expensive (I just wrote to Mary's Medicinals to see if I can get it in the Bay Area.) Also, I am not sure if I need to take Slow Fe (time release) iron away from food?

It is really too soon to say for sure but I discovered and listened to Dr. Earley's talk on opiods. I happen to have on hand prescribed opium (paregoric) for control of diarrhea and started taking a small amount before bedtime. For two nights my PLMD has been minimal to non-existent. I am crossing my fingers as this is an easy fix for me, assuming it will work long term. His talk does not mention specific research on paregoric (he says methadone works the best) but I have written to him for any thoughts he might have about paregoric. Taking larger amounts of the paregoric that I need for diarrhea causes all kinds of side effects but I am hoping in the smaller doses I am taking before bed that I can tolerate it.

yawny
Posts: 264
Joined: Sun Nov 08, 2015 4:20 pm

Re: MM dosages? and intro

Post by yawny »

Unfortunately, I have no experience with time release Iron...if you don't get a response from someone here soon, you could start a new topic in Non-Prescriptions Medicines and ask others. You'll surely get helpful responses.

So glad you found some relief with the Paregoric! My only suggestion is to build an arsenal of medicines/supplements that work, even if for a little bit of time, for you. You never know when what's working will stop or change, and then you have backup. Many people rotate meds to prevent tolerance. I haven't used anything in the opioids category but am curious about Kratom because several users report that it's good for jumpy legs like ours. I've also read that Tramadol is similar. I'm currently watching my symptoms and keeping a daily log including medicine used, how I slept, what I eat, activity level, and supplements tried. Hoping this will provide some clues to this crazy roller coaster?! Please keep us updated on what's working for you, or if you have any questions.

So the info doesn't get buried here, I'm going to respond with more information on the Mary's Medicinals medical marijuana transdermal patch in another section, Non-Prescription Medicines, Medical Marijuana... viewtopic.php?f=20&t=9228&start=270

stjohnh
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Location: Palo Alto, California

Re: MM dosages? and intro

Post by stjohnh »

wantok wrote: ... I happen to have on hand prescribed opium (paregoric) for control of diarrhea and started taking a small amount before bedtime. For two nights my PLMD has been minimal to non-existent. I am crossing my fingers as this is an easy fix for me, assuming it will work long term. ....


Before settling on paregoric as a good long-term solution, I'd make sure that you have a reliable source for it. Many doctors are quite reluctant to prescribe any narcotics, especially off label.
Blessings,
Holland

wantok
Posts: 101
Joined: Fri Apr 01, 2016 3:14 pm

Re: MM dosages? and intro

Post by wantok »

I can get more paregoric than I need because of my Crohn's, but I found after the 3rd night that the side effects (even with only a few drops) kicked in and turned me into a zombie in the day. As yawny pointed out, it can help, but only every so often. Are there any doctors in the Bay Area who will prescribe methadone?

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: MM dosages? and intro

Post by stjohnh »

I'm sure there are doctors that will prescribe Methadone in the Bay Area, however I don't know the names of them. What did the Stanford RLS specialist you saw say about that? Also the recent to change to the recommendation by the FDA about the opiate prescribing may be changing the landscape everywhere.
Blessings,
Holland

wantok
Posts: 101
Joined: Fri Apr 01, 2016 3:14 pm

Re: MM dosages? and intro

Post by wantok »

Stanford told me that I couldn't be having PLMD because my CPAP was controlling my sleep apnea. And they offered me Requip, Mirapex, etc. I didn't know about methadone at the time, and the visit was not a pleasant one since they were upset I was seeing them as my primary doc had referred me as someone with RLS.

ViewsAskew
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Re: MM dosages? and intro

Post by ViewsAskew »

I do not understand why the docs would say that. PLMS - periodic movements during sleep - happen without apnea. Sure, they can be worse with uncontrolled apnea, but it's not like controlling apnea means you won't have PLMS.

According to a few sleep books, PLMD is only diagnosed when you have NO other sleep disorders. PLMS is common to many other sleep disorders. 80% of RLS patients also have PLMS. They even found a gene that seems to cause it.

I've had PLMS since I was a toddler. I didn't get RLS until I was a teen. And, until the RLS meds caused issues, I had mild RLS while having severe PLMS. Now they both are bad. But controlling the RLS doesn't mean I have fewer PLMS.
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.

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