Hi all,
I was told recently that cannabis, in whichever form you choose, may be helpful in relieving restless leg. Do any of you try this with any success? I had a weed cookie last night, very low dose, and it SEEMED to help, but I had only reduced my Mirapexin, not refrained completely, so I'm not sure if it was psychological or not!
Thanks for input.
Mirapexin is no longer first line treatment and inevitably worsens RLS over time.So do consider reducing it completely.
Iron is now first line treatment. Get serum ferritin above 100, preferably 200 by pills every other night or an iv infusion. Pregabalin and gabapentin are then prescribed.
In your case, cannabis definitely helps withdrawal symptoms as you reduce mirapexin. If you do start to reduce completely, go slow, reducing half a 0.088 pill every 2 weeks, using cannabis and/or a low dose opioid to settle the withdrawal symptoms.
I second Joolsg's recommendation re: tapering off the Mirapex. I was taken off of it cold-turkey (I was on a low dose but am, we have learned, very sensitive to dopamine levels) and it was the worst 10 days of my life. It's been 3 1/2 years and my brain is still not recovered from the withdrawal. Dopamine Agonists should NEVER be first line treatment - but most general practitioners haven't gotten the info. I was started with gabapentin, then my general practitioner started me on the DA roller coaster. Yikes.
For me, cannabis did not entirely control my RLS - except at the very beginning. I now take Horizant (extended release gabapentin enacarbil) as well as traditional gabapentin and two low-dose hydrocodone tablets. I supplement this with cannabis when I have break-through symptoms. I also use cannabis for other non-specific (ie, they don't know what's wrong with me) disorders, and it helps me cope with life that is mostly pills and 'resting.'
I also agree with Joolsg re: iron. In the US (at least in my town), it's nearly impossible to get them to run the correct tests. I finally found a doctor who knew a psychiatrist who knew a doctor with knowledge (an oncologist, interestingly). He did the correct tests and found that I have very low brain-iron stores despite low-normal ranges showing up with the typical iron test. This isn't unusual for RLS victims.
Three rounds of iron infusions later, and my RLS symptoms reduced by maybe 80%. Not enough to leave other meds, but enough to make a massive difference.
I would have gone crazy long ago without cannabis. At the minimum, it relieves some of the anxiety that goes with RLS, lack of sleep, and a looming morning alarm...
If it has been more than 8 weeks since you had your last infusion, you should get your ferritin checked. Why are you taking both Horizant and gabapentin? Also are you aware that you can get the Horizant for $150 for 3 months?
I get my ferritin checked every 6 months or so, and my shrink sends the info to the oncologist so he can weigh in. The numbers and ratios are complex, which may be why the neuros I've seen have been wrong about ferritin most of the time.
It's unlikely that most of us will find any serious relief with iron pills, which is what insurance wanted. The oncologist knew how to code it so insurance would pay. He also knew how to push the right insurance buttons. He also explaoned that bones are greedy for the iron and that oral iron rarely makes it to the brain - and iron pills are a GI horror show!
My insurance initially denied Horizant starting this year, but my sleep/RLS doctor did their paperwork and advocated for NOT changing meds on me again. It worked, and my insurance copay was $60/month. I've hit my out-of-pocket limit now, so drugs have been "free" for a couple months (except the hydrocodone, which insurance refuses to cover).
And even though I referred to this in another post, for ease of this thread, I do take both - Horizant does not last as long as I need, so I must take regular gabapentin to catch daytime RLS breakthrough before I take the Horizant at bed. The official dosing instructions for Horizant (take at 5pm) are not appropriate for many people.
If in checking your ferritin every 6 months you find it has gone down so you need another infusion, you might want to have it checked more often. The usual recommendation is to have it after 8 weeks.
I would - but so far 6 months has been what I've been able to finagle. And half the time, it's the wrong tests. I have to get my shrink to order them or I end up getting the classic CBC tests.
I need a new GP. But that's a layer of trouble I'm not addressing right now. Basically, I figure out where I want to go and she writes the referral. I won't go to any of the hospital's preferred clinics; my experience with those has been highly traumatic and, more than once, ended up with me better than worse.
Down today with a migraine. It just never ends.
I am so sorry. Having a good doctor who understands all of this is so hard to get. When you are ready to change, let me know the city and state you live in and I may be able to give you the name of a knowledgeable one.
Beaverton, Oregon, west of Portland. Tualatin or Tigard would be fine. I would be fine with OHSU as well, though they dont seem to do much GP stuff as far as I can tell. Getting into Portland can be hard because of geography and road congestion, though SW Portland is often OK.
I would LOVE a GP recommendation if you know of someone.
Dr. Tracy Bazan is a neurologist at 5050 NE Hoyt St #315, Portland, OR 97213 (503) 215-8580. She does telehealth appointments. I would call and ask if she is familiar with the Mayo Clinic Updated Algorithm on RLS.
You are awesome! Thanks.
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Thanks! I will. I've found that the boards are a very rich source of knowledge, comfort, and community. Only those with a particular disease can really understand the awful parts of it.
What would be interesting would be to see what other issues people have with their RLS. I have so many medical problems that are idiopathic (which is an improperly used word in much of medical literature, I find...), and it feels like they should be connected somehow.
My (now dead) little brother and I joked, as he was dying, about how he and I were born about 75 years too soon. I think that's true for many of us.
75 years ago, epilepsy was a mental health disease. Now we know better. Hopefully medicine gets back on a more human-focused track and refocuses on why more and more people are becoming so sick with no diagnosis or treatment available. Of course, they will have to tear down the siloing of knowledge, and my experience has been doctors SAY they want to collaborate but actually don't. It just looks nice to say that. So many liars.
And until humans are returned to their rightful place in the medical ecosystem, many lives, including my own, will continue to be diminished nearly to the point of uselessness... and that is soul crushing.
Do you want to come off Mirapexin? If so post back here and I can give you some advice.
I am now experiencing with cannabis. It may not 100% stop it but it’s worth a try. I’m trying to get off Tramadol. I have gummies and drops and was told at the dispensary to try vaping. It’s quicker than the other.
Vaping is a funky beast. Are you vaping flower or cartridges? The cartridges are convenient but DANGEROUS! Be careful, friend. Experimenting with different strains and learning about terpenes is a good way to start. I often buy a few strains, but only a gram -get a feel for what works for what. Good luck!
PS: one tends to feel a hit very quickly. Some new smokers (more than you may think) don't feel anything the first few times. I don't know why. My brother and I were both that way. Maybe it has to do with too many years being in rigid self control. A body learns to hide what it's really experiencing.
That's my theory, anyway. Your mileage may vary!
I turned to Cannabis after augmenting on DAs. It saved my life and kept me from having to go on opioids. It is not a perfect solution and it does not work for everyone, but It's worth trying. I have found that smoking is the best delivery system as its affects are instantaneous. Orally can take up to 2-3 hours to kick in. and some say its not as effective.
For me it provides between 75%-100% relief. but the draw back is that it really only lasts 2-3 hours So I still wake up every few hours. But for me getting 2-3 hours of RESTFUL sleep at a time is more than I've gotten since I was a kid. Even on the DA I was only getting 3-4hr per dose.
Its worth trying
Ditto on the life saving. During withdrawal from the DA, I lost my poor mind. It just broke. I was desperate for help - and the only ones who responded were my bewildered terrified husband and my pot.
I find edibles are good for intense-emotion days. I can calm enough to think, and my body is doing less Fight! Run! Freeze! Kind of stuff. They do take awhile. Best done on an empty stomach - faster, more effective. For me, anyway.
I hear ya! DA withdrawals are aweful! I really mean it wen I say it saved my life. I don't think I would have made it through without it.
And I get the sympathetic Nervous system responses too. Over the past few years I started to realize just how much long term anxiety has affected my health. And from what I've observed, there are a lot of RLS sufferers that also have problems with anxiety, childhood trauma, ptsd etc. I think it plays into this condition. weed has been helpful on multiple levels.
Yup! Just bring sick and seeking help (with an overdose of PTSD for my trouble...).
Weed isn't for everyone, but it suits my body and mind when I am deep in overwhelm. And I've done some of my best (newbie) meditation with a small hit. It is a special plant to me. I grow much of my own, so I have developed a relationship with those plants, and they serve me well in return. So glad it is legal where I live!
That's true, cannabis is a real salvation. At least for me, and to be honest, I haven't tried anything that would work just as well as cannabis. After discovering cannabis concentrates and convenient dab pens from smokefox.com/collections/da... , I started to use cannabis whenever I feel like it, and it helps me feel better instantly.
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