What’s working for me

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

What’s working for me

Postby Mroe67 » Sun Jul 28, 2019 2:56 pm

I had a sleep study and have sleep apnea and RLS and am on Bipap, which helps my sleep but not the RLS. They have me on Meripex, which at this point is worsening my RLS. So I am weening myself off it. Am also on Iron and magnesium neither of which helps. At this point the only this the helps is either a hot tub dunk before bed or a hot shower over my legs and down the back of my neck. Then I can pretty much end up going right to sleep with out any twitching. Read so much about herbal treatments and diets and foods to stay away from. Seems like what ever works for whom ever, basically trial and error. Is that what everyone else seems to find?

Rustsmith
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Re: What’s working for me

Postby Rustsmith » Sun Jul 28, 2019 4:38 pm

Your experience is fairly typical. RLS is known to have a large placebo effect, so if you think it will help, then it may provided that your symptoms are not too severe.

Most of us have tried Mirapex or Requip and found that it worked for a while and then didn't, so we had to quit. Oral iron supplements help some, but others require an iron IV treatment to get their ferritin levels up. Still others don't benefit from iron treatments. Magnesium only helps if you are deficient.

As for the hot tub, that is a trick that many of us use. Unfortunately, it may not be enough when the symptoms get too severe.

As for herbal treatments, the only one that consistently has any benefit is kratom.
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.

Mroe67
Posts: 9
Joined: Sun Jul 28, 2019 3:18 am

Re: What’s working for me

Postby Mroe67 » Mon Jul 29, 2019 1:13 pm

I had my Iron tested and it was just somewhat low according to the doc, so he did put me on iron supplant, but didn't seem to help my RLS. The hot showers worked for 4 nights while trying to ween off the Mirapex. I was subscribed to take 1 and a half of the .125 mg, so after two weeks i went to one, then the other day I forget to take it, took my hot shower, but had a restless night for a few hours then finally fell asleep. But I was at a party and had two beers, I suppose that didn't help any. I hate the Mirapex, but I suspect I should continue to ween off it rather that "cold turkey" so I guess I'll take a 1/2 tab tonight I've read nowhere a rutine as to how long to ween off.

Thanks Rustsmith for the tip on Kratom, Any tips on where to get it and how to take it? 'm willing to try anything. Any data on Restavin? Seems pretty high rated on Amazon by some. There sure are lots of "stuff" claiming to help out there.

stjohnh
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Location: Palo Alto, California

Re: What’s working for me

Postby stjohnh » Mon Jul 29, 2019 5:25 pm

Lots of places to buy kratom. This place has been in business for a while and is reliable.https://www.phytoextractum.com/buy-red-vein-borneo-kratom-powder-online
Red Vein Borneo kratom is the most commonly used on this forum.

Starting dose is about 1/2 tsp, go up from there. Powder is VERY bitter. Most common way to take it is put powder in size 00 gelatin capsules or mix it with ice cold grapefruit juice.
Blessings,
Holland

Mroe67
Posts: 9
Joined: Sun Jul 28, 2019 3:18 am

Re: What’s working for me

Postby Mroe67 » Tue Jul 30, 2019 3:25 pm

Thanks for the reference, I ordered some, hope it works for me

Frunobulax
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Re: What’s working for me

Postby Frunobulax » Wed Jul 31, 2019 2:55 pm

Mroe67 wrote:I had my Iron tested and it was just somewhat low according to the doc, so he did put me on iron supplant, but didn't seem to help my RLS.


It takes month until oral iron takes effect. Very slow, and often very disappointing results. IVs are much better if you can get them. For oral iron you have to make sure that you take plenty of Vitamin C with the iron.

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

Re: What’s working for me

Postby Mroe67 » Fri Aug 02, 2019 2:01 pm

Found some left over Oxy from a knee replacement surgery, they sure work great just before bed. But no doc I know will regularly subscribe them.

ViewsAskew
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Location: Los Angeles

Re: What’s working for me

Postby ViewsAskew » Fri Aug 02, 2019 8:01 pm

Mroe67 wrote:Found some left over Oxy from a knee replacement surgery, they sure work great just before bed. But no doc I know will regularly subscribe them.


Very few will. I know this sounds crazy, but I actually moved from the MidWest US to Southern CA so I could be by a doctor who would. I do not see my life changing soon, and it was horrible not having anyone who would protect me or help me.
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.

Rustsmith
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Location: Pueblo, Colorado

Re: What’s working for me

Postby Rustsmith » Fri Aug 02, 2019 8:13 pm

The Journal of the AMA reported in the July issue that about 60% of doctors' offices that were surveyed under the guise that the caller was trying to find a GP to treat an aging mother who "by the way does it matter if she is taking an opioid for pain?" responded that they would not schedule an initial appointment. Small or individual practices were less likely to accept the "mother" than larger clinics. The article concluded that this may be due to the increasing paperwork that is involved with opioids are prescribed.

There are also numerous complaints of doctors who are firing patients already on opioids. Possibly either due to the paperwork or because of fear that the DEA will close the practice or cause the doctor to lose his/her license if too many are prescribed during a given period when compared to other doctors in the area.

So from this, I would conclude that you would stand a better chance at a large clinic than with a sole practitioner. However, I had issues with the large clinic and when I called around town to other doctors on my insurance, I ended up with a small clinic with one doctor and several Physician Assistants or Nurse Practitioners.
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.

Mroe67
Posts: 9
Joined: Sun Jul 28, 2019 3:18 am

Re: What’s working for me

Postby Mroe67 » Sun Aug 04, 2019 11:50 pm

How long before bed should you take the Kratom

Mroe67
Posts: 9
Joined: Sun Jul 28, 2019 3:18 am

Re: What’s working for me

Postby Mroe67 » Wed Aug 07, 2019 3:44 pm

It is working great for me, i’m taking a teaspoon before bed, and NO RLS!!!! If I buy the capsules how many should I take to equal a teaspoon

stjohnh
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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: What’s working for me

Postby stjohnh » Wed Aug 07, 2019 7:35 pm

3 size 00 capsules is about 1 tsp.
Blessings,
Holland

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

Re: What’s working for me

Postby Mroe67 » Mon Aug 12, 2019 3:01 pm

Like Mexipril, you can have augmentation and get worse, is there any evidence of that using Kratom? So far i’ve Been on it for two weeks and it works great

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: What’s working for me

Postby Rustsmith » Mon Aug 12, 2019 3:33 pm

The only things that are known to cause augmentation are the dopamine agonists (pramipexole, ropinerole, rotigatine and carbidopa/levodopa) and Tramadol. Opioids (other than Tramadol) have not been found to cause augmentation and kratom is considered to be either a mild opioid or an opioid like herb.
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.

Mroe67
Posts: 9
Joined: Sun Jul 28, 2019 3:18 am

Re: What’s working for me

Postby Mroe67 » Mon Aug 12, 2019 7:17 pm

Great to know, thanks for the info


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