What’s working for me

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.]
Mroe67
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Re: What’s working for me

Post by Mroe67 »

I’m still taking a half tab of Mexipril, almost afraid to stop along with Kratom, any suggestions as to what to do, hate to have another bad night since the Kratom seems to be helping

badnights
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Re: What’s working for me

Post by badnights »

Hi Mroe67

You will find a vast assortment of things that work for one or two people. But there are a few things that seem to work for many people.

First and foremost is iron. Whether or not oral or IV iron helps, WED/RLS is a disorder casued by a deficiency of iron in the brain. As mentioned, oral iron takes a long time to have an effect - months. Keep on it.

Magnesium can be the same. If you're deficient in any nutrient - and many North Americans are deficient in Mg - then the deficiency can alter your metabolism and aggravate WED/RLS. Mg also takes time to build up.

Vitamin D is another one that many North Americans are deficient in. Many of us have found that supplementing helps. There is also some evidence suggesting that it might be important in WED/RLS.

Other than those, some people have found that a gluten-free diet helps symptoms. Others have found that a low-oxalate diet, or various other diets, help; for example I reduced my meds by half after I started the Wahls diet (6 cups of vegetables a day, gluten and dairy free, fish oils, organ meats, no added sugar, very low carb and no grains, no highly processed foods, no additives). There might be a common denonminator there - nutrients are needed to carry out cellular metabolism and a lack can throw things out of whack with significant downstream effects, including neurological ones. This is a newish and growing field of research, so nothing much is certain. I would recommend at least cutting out added sugar and easily digested starches (and eating starchy foods with fat when you do eat starches or fruit) and jacking up the vegetable intake.

Kratom helps because it has opioid-like properties. It's the real deal.

You can cold-turkey from that low of a dose of pramipexole. It will involve increased symptoms no matter how you do it, and the faster you get off the shorter the time you're tortured. Plus, you have the kratom now and you could take more if needed to get over the withdrawal.
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.

Mroe67
Posts: 11
Joined: Sun Jul 28, 2019 3:18 am

Re: What’s working for me

Post by Mroe67 »

Things have changed a bit. I was prescribed Pramipexole, took it for a time and it helped, but then seemed to stop working. So I weened myself off it. Then I found this forum and it was suggested that Kratom helped, so I started that. Now that worked great for me, for a time. Used a half a teaspoon of the red vein version, later I was having symptoms again, and increased to 1 teaspoon, then as time passed I seemed to wake up about two hours after falling asleep. All jumpy again. I'd take either two Advil or Tylenol, then I was able to fall back a sleep and get a good nights rest. Still waking after two hours sleep. Of course insomnia doesn't help. I start by taking the Kratom about 7 pm, then an Advil PM 30 minutes before bed, fall asleep fine, then wake in two hours feeling jumpy, take two plain Advil or Tylenol then able to fall back asleep. Wonder why the two hour wake up. Any advise?

stjohnh
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Re: What’s working for me

Post by stjohnh »

Yes, The Advil PM is a BIG problem. It contains diphenhydramine, which is generic Benadryl. It is one of the meds that always causes RLS to worsen. Don't take anything with Benadryl or diphenhydramine in it.
Blessings,
Holland

badnights
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Re: What’s working for me

Post by badnights »

Yup. Like Holland said. Usually the stuff with "PM" on it - the stuff that makes normal people drowsy - has diphenhydramine in it and will make our legs go nuts.

As your intake of the opioid-like kratom increases, it might be having an alerting effect, just like an actual opioid would. That's when the need-to-move symptoms are more-or-less dealt with but you're wide awake anyway for some reason. Any little need-to-move that's not been dealt with will draw your attention. Usually it's something you otherwise would have been able to sleep thru. The main problem is the hyper-alertness that prevents sleep.

Some people vape majijuana to deal with this insomnia. Others have a prescription medication (sleeping aid aka hypnotic). The gaba medications help with this insomnia, too - pregabalin and gabapentin.
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.

Polar Bear
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Re: What’s working for me

Post by Polar Bear »

My RLS symptoms are quite well under control. It took many years to reach this stage trying so many different combinations of medications.

However I still have the insomnia. At a recent neurologist appointment it was considered that I may have sleep apnea causing the awakening after about 2 hours. I am therefore being referred to a respiratory consultant but with the current covid19 i imagine that an
Appointment is a long time away.
As my husband has confirmed that I do stop breathing it sounds likely and would explain why i only sleep in snatches.

Edited... to say sleep apnea
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

Mroe67
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Joined: Sun Jul 28, 2019 3:18 am

Re: What’s working for me

Post by Mroe67 »

I was having the 2 hour wake up BEFORE is started taking Advil PM. As it is said, medications affect everyone differently, so I'm not totally convinced that the Diphenhydramine is affecting me in a negative way, although it does help me fall asleep. After the two hour sleep then wake up, I take a two more regular Advil not exceeding maximum 24 hour dose, I at least can get back to sleep and sleep well the rest of the night.

Some added info, I am also on a Bi-Pap machine and had a sleep study done, that's who prescribed the Pramipexole for me. At the start I was on Gabapentin, which worked for awhile, then it stopped working, and I discovered Kratom which seems to keep it under control. The sleep study clinic people don't really advocate taking the Kratom though. But they also prescribed an Iron supplement, after testing my blood, I wasn't that low, I do still take 325 mg of Ferrous Sulfate plus my regular multi-vitamin, Fish oil, B-Complex, Saw palmetto, 80 mg aspirin. So I guess I'm doing okay, except the waking after my first two hours of sleep is a pain in the rear.

badnights
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Re: What’s working for me

Post by badnights »

Yes, your initial awakenings were probably caused by the higher dose of kratom. But the awakenings are probably being exacerbated by the diphenhydramine. It is very true that medications affect everyone differently but there are some things that seem to hold for everyone. One is that everyone with RLS/WED has at least an initial positive response to dopamine agonists. And another is that diphenhydramine is a trigger. If I were you, I would want to know for sure: am I an exception or is this pill I'm taking every night making it worse?

You might want to do an experiment, leaving everything the same except removing the PM pill, for about 2 weeks. Just to see if it's any better. BUT - if the kratom is alerting you too, it might be hard to tell.

It's too bad you can't use mj. I also have never found a strain or method of taking that helps me sleep. I use 3.25 mg zopiclone (some nights double that). You could go back to the gabapentin, even if it doesn't help with the movements and RLS/WED symptoms anymore, it should still help with sleep maintenance.

Please be careful with the Advil. Daily ibuprofen increases your risk of heart attack and stroke, and is also an unnecessary strain on your liver and kidneys.

Ensure you take some vitamin C with the iron pill; the iron will be absorbed better. Did you get your iron numbers from that test? Did they check your ferritin or just iron, TIBC and transferrin?
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.

Frunobulax
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Re: What’s working for me

Post by Frunobulax »

Mroe67 wrote:I was having the 2 hour wake up BEFORE is started taking Advil PM. As it is said, medications affect everyone differently, so I'm not totally convinced that the Diphenhydramine is affecting me in a negative way, although it does help me fall asleep.
The effect of drugs is highly variable. I had two medications that worked differently for me: Clonazepam made my RLS worse at first, while it was neutral or even a bit helpful a year later. I also took Sertraline in two short stretches about a year apart, the first time it made me sleep 16h a day, the second time I had to stop it after 2 days because it made me feel like ants crawling through my body and I couldn't even sit still.

Just be watchful. You might find that something that you've taken for months or years exacarbates your RLS.

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