How to be a guinea pig?

Please share your experiences, successes, and failures in using non-drug therapies for RLS/WED (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc. Also under this heading, medical interventions that don't involve the administration of a medicine to the body (eg. varicose-vein operations, deep-brain stimulation). [This forum contains Topics started prior to 2009 that deal with Non-prescription Medicines, Supplements, & Diet.]
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stockton2malone2
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How to be a guinea pig?

Post by stockton2malone2 »

I'm at a point where I've tried all the common medications plus a handful more, and every physical treatment for RLS with a shred of evidence behind it (along with plenty more that had none), and I still have very poor quality of life. I can at least get to sleep pretty consistently these days thanks to my current treatment, but the quality is still trash and I'm never not tired. After years of struggling with this, I've only gotten worse with age, and expect that trend will likely continue.

So...I want to be a guinea pig for some novel treatment like spinal cord stimulation, transcranial magnetic stimulation, deep brain stimulation, etc. Unfortunately the current trials I can find won't work (the SCS study wants people who already have the implant for chronic pain, can't find anything on TMS, and the DBS study is still only testing patients with comorbid Parkinson's). I understand why doctors might be hesitant to throw me to the wolves in the name of research, especially for things this invasive...but I'd much rather at least be trying something...and even if it isn't successful, at least I can contribute something useful to the current research for all the people here suffering just like I am. I can't just sit on my hands and wait 5 or 10 more years for them to get all their ducks in a row, and I'd gladly burn up my savings for just a chance to go back to work and live a semi normal life again.

That being said, is there any feasible way I can offer myself up as a guinea pig for these or any other relatively novel treatments? Do we know of any doctors or companies looking for weirdos like me willing to do this?

Thank you

stjohnh
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Re: How to be a guinea pig?

Post by stjohnh »

stockton2malone2 wrote:... I can at least get to sleep pretty consistently these days thanks to my current treatment, but the quality is still trash and I'm never not tired. ...
So...I want to be a guinea pig for some novel treatment like spinal cord stimulation, transcranial magnetic stimulation, deep brain stimulation, etc....
I found that the best single treatment for "always tired" (assuming urge to move was controlled AND I was getting a "reasonable" amount of sleep time) was dipyridamole. This is definitely not a standard or even second line treatment for RLS. However there are good theoretical arguments for its use, one very small proof of concept study, and there is at least one current clinical study testing its use in RLS. It is likely to be very difficult to get your doctor to prescribe it, unless your doc feels very comfortable with the relationship (rare). Docs would consider it risky for them (lawsuit if there was a problem).

The only other thing that has markedly improved "chronic daytime tiredness" for me has been IV Iron infusions.
Blessings,
Holland

badnights
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Re: How to be a guinea pig?

Post by badnights »

I totally get your sentiments, stockton2malone2! I don't know how you can offer yourself as a guinea pig for things that invasive. But there are probably some things you haven't tried, Holland mentions the first one I thought of, which is IV iron, some people have tremendous success with that. Have you tried it?

His dipyridamole suggestion is good, too.

And diet! I know it seems cheezy and unsciencey, but there are a lot of indications that diet has a big impact on everything else - I quit gluten (never thought I could but I went for broke) and noticed an improvement after a few weeks, so my doctor suggested I go dairy free as well. I did, and after a few more weeks I became convinced the improvement was real, so I went further (following her suggestion still) and started on the Wahl's diet, which is basically a paleo diet or a keto diet (it has 3 different levels, the most extreme is keto), and I had a remarkable improvement: 3 months after i first went gluten free, I was able to reduce my prescription of hydromorph contin from 18 mg to 15 mg. I had been taking 21 at least twice a week, so it was a bigger drop that it looked.

Over two years, every 3-6 months I reduced more, til I was at 9 mg/day. I'm still there, 3 years later.

The diet is basically very low in carbohydrates, and you make it up with increased fat (good fat. Saturated fat from coconut oil or grass-fed/pastured animals, or mono-unsaturated like olive oil). Plus you eat loads of vegetables - I was eating 9 cups a day in smoothies for a while. Three kinds of vegertables, about 2-3 cups each daily: leafy greens, colored veg, and sulfur-containing veg (mushrooms, onions, garlic, the cauliflower/broccoli family, cabbage, kale). And NO added sugar, no hyper-processed food.

So diet is an option too.

Have you been able to try any opioids?
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

sleepdancer2
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Re: How to be a guinea pig?

Post by sleepdancer2 »

Certainly understand your willingness to "take one for the team". Years ago my sleep doc sent me to a movement disorder specialist for my periodic limb movements and he presented my case at a big neuro conference. Sadly, because my symptoms didn't fit within known boxes (turned out to be augmentation), he gave up and suggested there might be a mental component. I was devastated. However, the sleep doc who sent me to him told him she didn't agree. When I told the sleep doctor I was having pretty good success using a TENS Unit for my jumpy legs, she was interested in doing studies without the TENS then with having used the TENS. I was more than willing to endure two more studies in hopes it would provide some evidence that might be helpful in her treatment of others. Turned out I had 1/3 the movements after using the TENS, and that was a bad night. My results at home were even better. Sometimes we just need one person to take our case as a challenge. But it took me many years of kissing frogs to find my prince(ss). Good luck with finding what you're looking for. At my worst I would have submitted to a trial. In recent years things have been stable I wouldn't want to rock the boat. If you haven't tried TENS treatment, it might be a worthwhile experiment if you also have limb movements of sleep in addition to the RLS.
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Frunobulax
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Re: How to be a guinea pig?

Post by Frunobulax »

stockton2malone2 wrote: That being said, is there any feasible way I can offer myself up as a guinea pig for these or any other relatively novel treatments? Do we know of any doctors or companies looking for weirdos like me willing to do this?
I was wondering the same a few years ago. I couldn't find anything. Your best shot may be to choose a treatment yourself that you can do, I know for example that people are doing FMT (Fecal Microbiota Transplantation) themselves. The process is somewhat complicated as the donor must be screened for dangerous bacteria, but there is a facebook group that will give you the basic information and practical advise. And I'm 100% with badnights, diet is soooo important (see http://bb.rls.org/viewtopic.php?f=20&t=10588, I've had some significant improvements after a fairly short time).

Basically, you must understand that most doctors won't even try to find a _cause_, especially for a disease like RLS where we have little knowledge what the causes may be (in the sense of environmental, dietary or genetic factors). They know which chemicals they can throw at which symptoms -- it's a bit like a stuttering car, and the mechanic recommends "add some oil in your tank, in 70% of the cases the stuttering will stop" instead of actually having a look what the issue is. No sensible person would consult this mechanic a second time, but for some reason this behaviour is perfectly acceptable for doctors: They simply don't know which long-term side effects their medication has, they make no attempt to fix the problem, all they do is to control the symptoms. And this fails in the long term.

I did a lot of private research (reading studies, watching talks from conferences) and basically most chronic diseases (looking at the ones that have no obvious cause) are not god-given, in most cases they can be traced down to diet, environment (possibly toxins), stress and more, with genetic factors playing a role sometimes. (There are a few cases where diseases do come from genetic defects or infections, but from my point of view those are the minority.) These factors are often highly individual - it's possible that you're exposed to a specific toxin (like mould, which is often invisible to the naked eye but can be measured in the air), or have an allergic reaction to some material in your flat (chemicals in paints, furniture, cleaning agents), or suffer from microbiom degradation. Other factors may exacarbate the issue (stress, lack of sleep, relationship issues). Most likely there are several factors working together (perhaps a genetic anomaly combined with a problem in the diet and a lot of stress), and if you eliminate one of them then you can achieve some improvement. But you're the only one who can find out which factors are in play, because you know yourself much better than any doctor.

There are some "holistic" doctors who have the right approach, as they try to find the causes and eliminate them. But many of these doctors have a narrow field of vision, focusing exclusively on one issue like toxins and neglecting other possible issues. Other "alternative" doctors are simply quacks, selling expensive placebos, and it's hard to separate them from the good ones.

I started treating my RLS myself about 5 years ago, after noticing that some vitamins (B12) had a significant positive effect but no doctor could tell me why. I am fairly convinced that diet (and leaky gut as a consequence) is a main factor in my case -- some effects build up over decades, and will eventually result in lack of certain nutritients and silent inflammation, and the clincher was that my RLS onset came shortly after going on acid blockers (PPIs). I take a number of supplements (selected vitamins, minerals, amino acids in fairly high doses) and manage my diet to be low carb and anti inflammatory. At the start of my process my RLS was running wild, where I mixed 30mg oxycodone a day with other drugs and still had severe symptoms every day. After a year of experimenting with supplements, I was still on 30mg oxycodone but no other drugs (with the occasional L-Dopa 2-3 days per month) and my symptoms were kept in check. Then I had stability for a few years, went on a low carb diet at the start of this year, was able to get rid of my PPIs and am reducing my medication further (first to 25mg, now I'm good with 20mg on most nights).

So I think this approach does work. It takes time and dedication, and quite a lot of experimentation. I did experiment with a lot of diets and had at least 4 serious but failed attempts to get rid of my PPIs. I did explore a few other avenues, went to a lot of doctors to check various organs, ruled out things like mercury or lead poisening, but couldn't find anything besides diet. I had some leads where my doctors claimed they were unrelated to my RLS (onset after PPIs, non-alcoholic fatty liver, enlarged spleen) but I was able to connect the dots, building a theory how diet and leaky gut could lead to RLS.

badnights
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Re: How to be a guinea pig?

Post by badnights »

Frunobulax wrote:went on a low carb diet at the start of this year, was able to get rid of my PPIs and am reducing my medication further (first to 25mg, now I'm good with 20mg on most nights).
Wow, this is great, especially the PPIs! Well, all of it. You've already reduced by a third in under a year of paying attention to diet. I'm sure there's more to come.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Taco Bill
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Re: How to be a guinea pig?

Post by Taco Bill »

I did 40 sessions of TMS for treatment resistant depression but the psychiatrist said it might help RLS too. I regularly had to get up from the chair during treatments because of RLS. Unfortunately, in the end it helped with neither the RLS or depression. The only thing it did was make my anxiety skyrocket. The psychiatrist said sorry and sent me on my way with an Rx for klonopin.

badnights
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Re: How to be a guinea pig?

Post by badnights »

Taco Bill wrote:I did 40 sessions of TMS for treatment resistant depression but the psychiatrist said it might help RLS too. I regularly had to get up from the chair during treatments because of RLS. Unfortunately, in the end it helped with neither the RLS or depression. The only thing it did was make my anxiety skyrocket. The psychiatrist said sorry and sent me on my way with an Rx for klonopin.
:( :( :(
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Re: How to be a guinea pig?

Post by Polar Bear »

TMS - is this what we used to call electric shock treatment.

If it is, I am so sorry that you went through this.
Betty
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Rustsmith
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Re: How to be a guinea pig?

Post by Rustsmith »

TMS stands for Transcrainial Magnetic Stimulation. Essentially they use magnetic fields to stimulate the nerves in the brain. It is being used to treat depression. I have seen some that say that it helps, but obviously not in this case. Makes me wonder if the depression that we experience is different form "standard" depression in the same way that our insomnia is different and therefore doesn't respond to the normal insomnia meds.
Steve

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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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