What med cocktail works for you??

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.
mutsy67
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What med cocktail works for you??

Postby mutsy67 » Mon Jun 25, 2018 5:34 pm

The stickies in this section of the board lists so many possibilities that my head hurts. I will have to research each one for possible restrictions to all the other meds I take for autoimmune and endocrine diseases, so would kind of like an idea on what others mix & match with success. Especially as it seems a combo/cocktail at low doses works best for most.

So, if you care to share - what cocktail do you each take??

Rustsmith
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Re: What med cocktail works for you??

Postby Rustsmith » Mon Jun 25, 2018 6:17 pm

My current combination for RLS is 5mg methadone and 600 mg gabapentin plus 0.25mg pramipexole for PLMS. Plus, about 5 nights out of 7 I add a 5mg THC edible to help me stay asleep longer in morning (after the gabapentin wears off).
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

mutsy67
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Re: What med cocktail works for you??

Postby mutsy67 » Mon Jun 25, 2018 6:48 pm

Thanks Steve, very helpful. Is the thc really common for folks on here? I do live in a state with medical marijuana, but after suffering with undiagnosed hyponatremia (caused from a medication) for many years the thought of a altered state is so scary to me...I never want that feeling again - granted there must be a difference between being high and having a swollen brain, but altered is altered to me. :/

ViewsAskew
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Re: What med cocktail works for you??

Postby ViewsAskew » Mon Jun 25, 2018 6:52 pm

Mine varies so frequently, not sure it helps to share! Right now I am slowly decreasing methadone to take a 2 month vacation from it. I am in hell, lol. This is voluntary - I do not have to do this. I am one who has tolerance to opioids, however, so taking a break every couple years can reset receptors and allow me to reduce how much I take.
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.

mutsy67
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Joined: Sat Jun 19, 2010 5:37 am

Re: What med cocktail works for you??

Postby mutsy67 » Mon Jun 25, 2018 7:16 pm

Ann,
I understand completely, but if you would like to share the things that you were able to take together with some success, that would be helpful to me. And maybe to others as well. Although it's quite possible others aren't as confused as I am (also researching meds and all the supplements required to manage endocrine diseases, so it's all just so overwhelming.) But again, I understand if you'd rather not.

Polar Bear
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Re: What med cocktail works for you??

Postby Polar Bear » Mon Jun 25, 2018 10:41 pm

For RLS I take Ropinerole 4mg which is spread over the 24 hour period
(yes 4mg is much too high, I started on it when 4mg was an acceptable daily dosage).
Also Tramadol ER 50mg x 2 daily
Also Cocodamol 30/500 x 4 daily.

Note: I also take Citalopram 10mgs mornings and Amitryptiline 50mg at night (for fibromyalgia and sleep) and these may or may not have a negative impact on RLS symptoms. I think they don't have a negative impact on me but of course it could just all be part of my RLS Symptoms package.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: What med cocktail works for you??

Postby Rustsmith » Mon Jun 25, 2018 11:06 pm

mutsy67, of those of us who live in states where marijuana is legal (especially in the states where recreational MJ is legal), there are quite a few of us who have found that products that are high in THC is helpful. I use it just before bedtime and by keeping the dose on the low end (I use half of what is recommended for the recreational users who are looking for a buzz), the only time that I notice any effect is on the occasions where I need to head for the bathroom during the middle of the night. In those cases, I notice that I cannot walk a straight line and am therefore very careful to keep from falling. I rarely notice any effect when I get up in the morning and a cup of coffee is usually enough to overcome any residual effect on the rare occasions when I notice anything.

But, if that is a concern, the mixed products that also contain CBD are supposed to help overcome the intoxicating effects of pure THC. These products are more expensive due to the cost of concentrating the CBD, which is why I don't bother with them.

And I totally understand about your concerns with hyponatremia. My sodium levels naturally tend to run on the low side and I have experienced clinical hyponatremia during several marathons that I have run. Throwing up is never fun and is really embarrassing when it is on the street in front of hundreds or thousands of people. I tend to sweat too much salt (possibly due to being a carrier of one of the less common, less critical cystic fibrosis genes). I participated in a research study during a marathon several years ago. Out of over 2000 participants in about 6 major races around the world, I was one of only 2 in the study who ended up both hyponatremic and dehydrated. In all of my long races since that time, I would take salt pills every half hour during the race just to maintain normal sodium levels. I should also add that I am normally hypotensive, so any elevation of my blood pressure is a good thing in my book.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

mutsy67
Posts: 23
Joined: Sat Jun 19, 2010 5:37 am

Re: What med cocktail works for you??

Postby mutsy67 » Tue Jun 26, 2018 4:58 pm

Polar Bear wrote:For RLS I take Ropinerole 4mg which is spread over the 24 hour period
(yes 4mg is much too high, I started on it when 4mg was an acceptable daily dosage).
Also Tramadol ER 50mg x 2 daily
Also Cocodamol 30/500 x 4 daily.

Note: I also take Citalopram 10mgs mornings and Amitryptiline 50mg at night (for fibromyalgia and sleep) and these may or may not have a negative impact on RLS symptoms. I think they don't have a negative impact on me but of course it could just all be part of my RLS Symptoms package.


Thank you Betty! I had to look up cocodamol :D I also take requip, an opiate, and amitryptiline a long with antiseizure med but but the second 2 are for small fiber neuropathy. The Amitryptiline (75 mg) used to help me sleep but not anymore :(

Polar Bear
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Re: What med cocktail works for you??

Postby Polar Bear » Tue Jun 26, 2018 5:10 pm

mutsy67 - I'm not convinced that the amitryptiline does much to help me sleep either but it is also considered to be helpful for fibromyalgia.

The opiate that you take for small fibre neuropathy should also be helpful with your RLS symptoms.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

mutsy67
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Joined: Sat Jun 19, 2010 5:37 am

Re: What med cocktail works for you??

Postby mutsy67 » Tue Jun 26, 2018 5:15 pm

Rustsmith wrote:
And I totally understand about your concerns with hyponatremia. My sodium levels naturally tend to run on the low side and I have experienced clinical hyponatremia during several marathons that I have run. Throwing up is never fun and is really embarrassing when it is on the street in front of hundreds or thousands of people. I tend to sweat too much salt (possibly due to being a carrier of one of the less common, less critical cystic fibrosis genes). I participated in a research study during a marathon several years ago. Out of over 2000 participants in about 6 major races around the world, I was one of only 2 in the study who ended up both hyponatremic and dehydrated. In all of my long races since that time, I would take salt pills every half hour during the race just to maintain normal sodium levels. I should also add that I am normally hypotensive, so any elevation of my blood pressure is a good thing in my book.


Steve! You are the first person I've come across who also experienced hyponatremia! It was the scariest 6 years of my life. Tens of thousands of dollars, many hundreds of dr appointments and dozens of tests and it turned out I diagnosed myself. :D which was doubly difficult since I was really mentally impaired. I lived in a chronic state with acute episodes where I would be unable to stay awake (I always couch that, but I should just come right out and say I would lose consciousness, but that makes what happened to me all that much more scary!), I ended up in the hospital for a week after one episode where I was in a fugue state. I learned early on that a bottle of Gatorade would bring me out of an acute episode...and despite telling every dr that, they could not figure it out. Gah! Turned out to be oxcarbazepine that I was taking for small fiber neuropathy.

Thank you for sharing the info as well. I do take CBD oil now, but it's pure oil with 0% thc. The pain dr that does my oxy script requires drug screens, so I'm limited. But I've contemplated getting my mmj card and doing a 50/50 mixture...its just so scary to me. I hated being "altered" there was nothing "high" about it, just fear.

mutsy67
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Re: What med cocktail works for you??

Postby mutsy67 » Tue Jun 26, 2018 5:22 pm

Polar Bear wrote:mutsy67 - I'm not convinced that the amitryptiline does much to help me sleep either but it is also considered to be helpful for fibromyalgia.

The opiate that you take for small fibre neuropathy should also be helpful with your RLS symptoms.


It has been suggested I have fibro...but there are many other diseases of connective tissue and endocrine system that it's just hard to tell where one starts and the other ends. The oxy is for the rls plus connective tissue, I didn't word that well. I'm just up against the need to go on LDN (low dose naltrexone) for my autoimmune thyroid issue and that means coming off the oxy. But I'm certain that I'm augmenting right now, so it's all very complicated! And figuring it out while sleep deprived ...well, you know. :/

Rustsmith
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Re: What med cocktail works for you??

Postby Rustsmith » Tue Jun 26, 2018 6:01 pm

Tens of thousands of dollars, many hundreds of dr appointments and dozens of tests and it turned out I diagnosed myself.


Through experiences with my wife's health (she has MS), my own experience with RLS and medical care following a number of marathons over the years, now the experiences reported by a number of our members any my career experiences as an specialist engineer, I have pretty much lost faith in the ability of the medical profession to do anything other than treat the blatantly obvious. I keep reminding myself of the quote from Ann Landers "Remember that half of all doctors graduated in the bottom half of their class".

What I have found is that many doctors are unwilling to admit what they don't know. So, they either concoct some sort of diagnosis within their specialty training (be it neurology, endocrinology, gastroenterology, etc.) or else they blame it on the patient and say that it is "in your head" or that the problem you are describing isn't important. This is similar to what a number of engineers would do when given a problem that they hadn't encountered before. Many were unwilling to admit that they couldn't fix it, even when the root cause of the problem was outside of their field of expertise. They just weren't willing to admit that they didn't know enough to handle it. There were only a few of us who were willing to look at things with a broader view and then solicit help from an expert in a different field. I was fortunate to be able to work within a network of similarly minded experts and over the years we all got many promotions simply because the difficult problems given to us got fixed and stayed fixed. For medicine, I keep thinking back to the old TV show "Dr. House". He was a horrible doctor when it came to patient interactions, but he would think outside the box when given a difficult problem, would access other specialists and almost always found the real problem rather than simply writing a script and sending the patient home.

The pain dr that does my oxy script requires drug screens
The doctor who writes my methadone scripts also requires drug screens. When I first started with him I was concerned about MMJ (I had a card but let it lapse because I can still legally get what I need without it). His statement was that the federal regs require testing for illegal drugs and alcohol, but that since marijuana is legal in our state, he just doesn't look.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: What med cocktail works for you??

Postby ViewsAskew » Tue Jun 26, 2018 8:18 pm

For more on poor decision making by doctors, an interesting and enlightening read is How Doctors Think.

Mutsey67 - I think you will find that we all take such different things that having this info may not help much. It IS that complex - there are no drugs developed for RLS, there appear to be different "types" of RLS (painful vs electrical for example) as well as people who have comorbid conditions and those who have mild to excruciating symptoms.

Here are just a few of the combos I've used:
Pramipexole alone
Pramipexole alternated with methadone (in several ways)
Pramipexole WITH methadone
Methadone alone
4 other opioids alone
Methadone with gabapentin
Methadone with gabapentin with pramipexole
Ropinerole alone
Pramipexole with a benzo
Methadone with pregabalin
At times, have added MMJ or kratom to one or more or used kratom alone
At times, have taken an antidepressant along with these


And, so it goes. All together, I've taken over 20 drugs. It changes because of augmentation, because of tolerance, because of other conditions, because of severity.

I really am not trying to be difficult - and I could easily have written your post when I first came here. I understand - I think - what you need and want. I think it may be time to figure it out and learn it.
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.

legsbestill
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Location: Dublin Ireland

Re: What med cocktail works for you??

Postby legsbestill » Tue Jun 26, 2018 9:39 pm

I continue to find it helpful to read of other peoples regimes and totally understand why you ask.

I have experimented with a number of different options since I came off pramipexole two years ago after augmenting. My rls definitely responds better to a cocktail of meds at a low dose.

I currently take:
Pregabalin - I would like to stop this drug - I hate the feeling of being in it but it’s helpful to my rls and my sleep. I have recently reduced my dose from 100mg to 90 mg daily;
Dipyridamole (aka persantin) - 100mg per day currently but I often mess about with this dose;
Pramipexole - I take half of the smallest tablet which is 0.065mg US measurement - I take this dose 5 days out of every 7 hoping that the two days off will offer protection against tolerance and augmentation;
LDN recently increased to 4mg after 4 weeks on 3mg. I take the LDN to see if it has any impact on my rls. So far none but I understand it can take months to kick in so I will take it til December;
Cannabis - full plant made up into an edible - this has no impact that I can discern on urge to move symptoms but helps me to sleep well;
Kratom for break through symptoms and on nights when I don’t take pramipexole. I have to move the ldn back to lunchtime on days I need Kratom because ldn impedes the actionnof Kratom on opioid receptors.

That is the sum of my rls medications. I hope it is helpful.

debbluebird
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Re: What med cocktail works for you??

Postby debbluebird » Mon Aug 13, 2018 7:35 am

I started out with one drug. Then over the course of 20 years, I have tried about 20 meds. I slowly stopped them all when I started methadone. Then that didn't work by itself anymore. Started adding drugs again.
Right now mine is similar to Steve's.
Methadone 2.5 mg every 6 hours to avoid hyper alertness
Gabapentin 600 mg at 2 pm and 8 pm Had to adjust theses times as well.
Mirapex .125 mg one every 4 days 8 pm
Oxycodone 2.5 mg one every 4 days, around 11 pm
It seems to me, it is a game of chance. I have found, just like Ann, I need to change it up ever so often. Otherwise, I become tolerant.
I was afraid to add back the Mirapex. I put it off for a long time. It really knocks me out on that first night. By the third night I start to have mild symptoms.
I am lucky that my doctor allows me the freedom to suggest the changes that I want to try.
Right now I am sleeping very good. I am lucky.
I have not tried stopping the methadone on the night I take the mirapex. I am sure that is why I sleep so much that night. I am thinking I might just cut my last dose of the methadone in half on those nights.
I am sleeping 10 to 12 hours. I am enjoying every minute.
Before RLS and PLM's, I slept 10 to 12 hours.


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