Is anyone having a successful 'drug free' experience?

Please share your experiences, successes, and failures in using non-drug therapies for WED/RLS (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.]
wilabozo
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Is anyone having a successful 'drug free' experience?

Postby wilabozo » Fri Jan 25, 2019 3:48 am

I have mid to severe RLS, and haven't had any drug for 2 weeks. I thought my body would eventually find some sort of balance, but that hasn't happened yet, maybe early days or maybe not possible, I don't know. Less than 3 hours a night doesn't seem sustainable. Now I'm just on the edge of coping; maybe I'm being too idealistic; is a drug free existence even possible? If so, I would love to know any success stories???!!! I've had some good advice on iron, but my iron levels are above average, so that's not an option. Any particular exercises, philosophy, lifestyle changes, routines.. I would love to hear! Even only limited benefit stories. I'm now considering taking pramipexole on and off, and just suffering in between, like one week on, one week off, or some other combination, has anybody tried that and still doing it?

stjohnh
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Re: Is anyone having a successful 'drug free' experience?

Postby stjohnh » Fri Jan 25, 2019 4:36 am

wilabozo wrote:...is a drug free existence even possible? If so, I would love to know any success stories???!!! I've had some good advice on iron, but my iron levels are above average, so that's not an option...


In answer to your first question, there are lots of people that just suffer with RLS symptoms and take no medicine. I'm not sure that is what you mean by a successful drug-free existence. Lots of people have RLS that are misdiagnosed by doctors as anxiety, stress, and other things. They don't get effective RLS treatment. Of people who are started on the usual RLS meds (Requip, pramipexole, gabapentin), less than 1/2 are taking those meds a year later. Some have changed to other meds, but many just stop and suffer because of the side effects of those meds. Perhaps some of those actually had spontaneous improvement in their RLS symptoms, but that is likely a small number.

There are two natural herbal remedies that help lots of people with RLS, medical marijuana and kratom. While some call them supplements, they clearly have components that most would call drugs.

There are a number of well documented non-drug treatments for RLS, and LOTS of poorly documented non-drug RLS treatments. There are many discussed in the other threads of this forum, some have reported very good success. I personally have tried ketogenic diets, probiotics, mechanical leg compressors and massagers, strenuous exercise, compression stockings, meditation, very hot and very cold showers, and likely some others that I can't think of at the moment. None provided more than minimal relief for me, but there are others that they seem to work well for.

A comment about your iron levels. The common iron blood test (ferritin) tells doctors about the amount of iron needed to make red blood cells. RLS is caused by low BRAIN iron, and has very little relationship to the BLOOD iron level. Most doctors do not even know that iron is used in the body for anything other than making red blood cells. Recently the International Restless Legs Syndrome Study Group (IRLSSG) published a paper outlining the iron evaluation needed to qualify for oral and IV iron therapy. If you can tell us what iron test or tests you had (there are several besides the ferritin), and the numerical result, we can tell you if you qualify for Iron therapy.
Blessings,
Holland

sleepdancer2
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Re: Is anyone having a successful 'drug free' experience?

Postby sleepdancer2 » Fri Jan 25, 2019 11:22 am

After years on dopamine meds (Sinemet, Mirapex, Requip) the side effects and augmentation caused me to go off them. I was surprised to find that much of my severe RLS was actually augmentation and nearly resolved just going off the meds. What remains is tolerable. While my periodic limb movements did calm down some from what they had been while augmenting, what remains is not tolerable untreated. I am fortunate that using a TENS Unit has been effective in managing my jumpy legs. I place the electrodes on my lower back (buttocks) for a while before bedtime as was prescribed for low back pain. Not that it was simple, it took a while before it began being fully effective. While it did interrupt the signals to my legs, it did nothing for my my brain where the signals (I assume) originated. I still got stuck in a loop with repetitive stuck thoughts and it took a long time to figure out how to help myself on that front. Turned out playing soft rolk oldies was just the right thing to keep my brain busy processing incoming sounds and not get stuck, and since the songs were familiar, they didn't require staying alert to listen. I do take supplements, particularly magnesium and vitamin D. If you have RLS alone, this won't be much help. If you have periodic limb movements, who knows, maybe.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

stjohnh
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Re: Is anyone having a successful 'drug free' experience?

Postby stjohnh » Fri Jan 25, 2019 3:55 pm

sleepdancer2 wrote:After years on dopamine meds (Sinemet, Mirapex, Requip) the side effects and augmentation caused me to go off them. I was surprised to find that much of my severe RLS was actually augmentation and nearly resolved just going off the meds. What remains is tolerable. While my periodic limb movements did calm down some from what they had been while augmenting, what remains is not tolerable untreated. I am fortunate that using a TENS Unit has been effective in managing my jumpy legs... If you have periodic limb movements, who knows, maybe.


80% of people with RLS have PLMS, though many don't know it. PLMS is diagnosed with a sleep study (which most people with RLS do not get). It can be strongly suspected if your bed partner complains that you kick a lot while asleep.
Blessings,
Holland

badnights
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Re: Is anyone having a successful 'drug free' experience?

Postby badnights » Sat Jan 26, 2019 4:22 am

@wilabozo: Were you on a dopamine-type medication like pramipexole? No dopamine-type medications; augmentation will torture you endlessly. Two weeks is not long enough for some people to recover from it.

Your best chance at medication-free existence is iron infusions (intravenous iron). Oral iron can help, too. You have to watch what doctors and labs say - your "iron" in your blood may be good even at the same time as iron stores in other tissues of your body are low - - this is detected indirectly by measuring the amount of ferritin in the blood (ferritin is an iron-storage protein, it's not iron, it contains iron). There is no right amount of ferritin to have; some people without WED/RLS are ok with 30 ng/ml but most of us with WED/RLS need at least 100, and some of us need 300. By "need" I mean that's the level ferritin gets to in the blood before enough iron has gotten into the brain to subdue symptoms. Holland has already gone over much of this :)

What were you on, for how long, what dose? Do you know about augmentation? Does your doctor know how to treat augmentation? Have you had blood levels of ferritin tested?

I have heard of people who stopped a DA and found they were symptom-free once the withdrawal was over.

Ditto for people who got iron infusions (maybe even 25% of them end up symptom free for months at a time, then get more infusions).

Dramatic improvements have been made by dietary changes of various kinds, two theories hold here among us on the board, both of which are probably true: one is that if you're deficient in some critical nutrient, replenishing it will relieve your symptoms; and the other is that the body needs lots of nutrients to do everything it does at the level of cellular metabolism, so we should eat in such a manner as to provide it with all those nutrients - including avoiding anything that we're sensitive or allergic to, since that will slow absorption, avoiding easily digested starches and added sugars, which can cause the population of harmful microbes in our guts to overwhelm the population of good microbes (with far-reaching effects including neurological ones), and making sure we get as much nutrition as possible from whole foods. I reduced my dose of hydromorph contin from 18-21 mg daily to my current 9-10 mg daily over a 2 yr period maybe less after I changed my diet.

So there are things you can do to improve your situation. I imagine it's very hard to think straight right now with the amount of sleep you're getting, is there a doctor at your back?? Going back to pramipexole is not the answer, but living on 3hr sleep (and I bet it's fractured and low quality ) is not the answer either!

Kratom is a herb with opioid-like properties that is effective in treating WED/RLS. It is illegal in some states, legal in others. I would check into it if your doctor can't help with a short-term prescription of a potent opioid (Which is awkward to ask for, in fact DON'T ask for it, but download the RLS Foundation's Medical Bulletin (see instructions in link above my name, below) and highlight the relevant parts and let him/her suggest it).

Cannabis will probably not be helpful in your current situation, some strains seem to help a few people but most of us who take it use it only for sleep, it does nothing for the symptoms for most of us. There is an added disadvantage that it reduces sensitivity to opioids, which I just learned today from my physician, so don't be taking it and kratom both. Of the two, kratom is hands-down your better choice.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

wilabozo
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Re: Is anyone having a successful 'drug free' experience?

Postby wilabozo » Sun Jan 27, 2019 1:49 am

After 2 weeks of cold turkey, I had my first full night's sleep, and felt symptom free! It's only 1 night I know, but for me it's proof that it has been worth the effort. I'll be checking my ferritin levels next week. As for diet, I eat quite healthily, but one thing I've been trying over the last few nights is to cook a big slab of salmon before going to bed and scoff that, nothing else, with lemon and pepper. Firstly it reduced my desire for midnight snack (=distraction), and maybe gave me a dose of something I needed? But as I've learned from the past, what works one day, doesn't necessarily work the next. If I have continued success with it I'll post the results here :)

Polar Bear
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Re: Is anyone having a successful 'drug free' experience?

Postby Polar Bear » Sun Jan 27, 2019 10:02 am

willabozo - please do keep us updated on your progress. Good luck.
Betty
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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

wilabozo
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Re: Is anyone having a successful 'drug free' experience?

Postby wilabozo » Mon Jan 28, 2019 2:11 am

Second night of great sleep -- drug free -- only a slab of salmon before bed. I'm going to keep this regime for a few more days.. tastes good too!! I'm not exactly sure how long I slept because I'm avoiding tracking time.. it was probably around 7 hours in about 3 blocks.. I've been taking focus off time by throwing out a few clocks, and not looking at the time when I wake up in the middle of the night. I used to be a person who knew exactly what time it was when I woke up.. now I don't. I feel my brain is resetting. So far so good... will keep posting progress.
BTW I was on .125mg of pramipexole for 3 years. After a brutal cold turkey I'm now 2 weeks without it.
viewtopic.php?f=1&t=10361

srgraves01
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Re: Is anyone having a successful 'drug free' experience?

Postby srgraves01 » Mon Jan 28, 2019 4:18 am

I went on a keto diet and I was drug free for about 4 months. But then my symptoms returned. It sounds like you are already eating a keto dinner. I also have used several forms of massage to loosen up tight muscles. I am able to reduce the amount of medication I need because of this.

wilabozo
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Re: Is anyone having a successful 'drug free' experience?

Postby wilabozo » Tue Jan 29, 2019 8:18 am

Three nights of salmon therapy working a treat, plenty of sleep, symptom free... unbelievable! Can't wait for tonight's salmon!

Stainless
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Re: Is anyone having a successful 'drug free' experience?

Postby Stainless » Fri Feb 01, 2019 3:44 pm

IMO do everything you can to not take these meds.

stjohnh
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Re: Is anyone having a successful 'drug free' experience?

Postby stjohnh » Fri Feb 01, 2019 6:10 pm

Stainless wrote:IMO do everything you can to not take these meds.


There is no question that dopamine agonists (Requip/ropinirole, Mirapex/pramipexole, Nupro), alpha2ligands (gabapentin, Lyrica, Horizant), and opioids like methadone all have serious life altering side effects and I encourage people to pursue other avenues if possible, the main accepted "drug" treatment being IV Iron infusions, which have no significant side effects and treats the underlying problem (low brain iron).

Unfortunately, access to IV Iron infusions is limited, though hopefully should be improving as neurologists and other doctors treating RLS get educated. Research into iron metabolism has produced lots of information, potentially allowing iron levels to be increased without IV Iron infusions. Iron micro-needle patches are currently in development. The main hormone that blocks oral iron absorption, hepcidin, has been identified, and drug manufacturers are likely perusing hepcidin blockers as an alternative treatment.

While current non-drug treatments can help many people with mild to moderate RLS, they just don't allow most folks with severe RLS to work, raise families, sleep, and socialize with friends. Those people will need some type of drug treatment.

IV Iron infusions are available now but in the near future another drug class may be also available. Dipyridamole (an adenosine transport blocker) has been shown in small test groups to help treat RLS with few side effects. Larger studies using dipyridamole are in progress, and hopefully before too long may be accepted as an alternative drug treatment with fewer associated problems. The drug is available now as well, though not as a established treatment for RLS.

There is lots of research going on in the RLS world today, so the future looks bright as newer treatments with fewer side effects become available.
Blessings,
Holland

badnights
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Re: Is anyone having a successful 'drug free' experience?

Postby badnights » Sat Feb 16, 2019 6:35 am

I went on a keto diet and I was drug free for about 4 months. But then my symptoms returned. It sounds like you are already eating a keto dinner. I also have used several forms of massage to loosen up tight muscles. I am able to reduce the amount of medication I need because of this.
Anything that allows a reduction in medication is good. The initial improvement I had after being ketogenic for a few months continued after I added more carbs back in so that I was actually following more of a regular paleo diet.

@wilabozo Salmon - if it's wild not farmed - will have a good amount of omega-3s. Can't see that taking effect after one serving, but something is working, so keep it up. Notice as much about your diet as you can so you can refer back to it later if symptoms return.

Things I would like to try:
- iron infusions
- oxygen therapy
- nightly massage! when I'm rich :)
- pneumatic compression devices
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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