Weaning off medications

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.
Obewan
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Joined: Tue Feb 12, 2019 9:51 pm

Weaning off medications

Postby Obewan » Thu May 30, 2019 7:32 pm

Has anyone been able to successfully wean themselves off dopamine agonist meds and treat their RLS symptoms with a more holistic, non-medication approach?

Rustsmith
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Re: Weaning off medications

Postby Rustsmith » Thu May 30, 2019 7:41 pm

The discussion board tends to attract those of us with the more severe forms of RLS, so success with non-medication approaches is not commonly reported. Also, many of our members tend to drift off once they find success. Hopefully, you will get some responses other than those that you will find in the Non-Prescription treatments forum.
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.

Polar Bear
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Re: Weaning off medications

Postby Polar Bear » Thu May 30, 2019 10:36 pm

I am currently slowiy weaning myself of a DA and have been doing so for about 8 months. There is no way a non medication approach would ever provide sufficient relief to allow me to be medication free. This is generally the case for most RLS sufferers, certainly those who have more than mild random symptoms. Sorry I can't help you but hopefully there are those who will be able to do so.
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

badnights
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Re: Weaning off medications

Postby badnights » Sat Jun 01, 2019 10:34 pm

If you're determined to go this route, try some perhaps-drastic dietary changes. Different people find different dietary things trigger their symptoms, and some have found that various dietary approaches will actually improve their symptoms. So, the triggers that have been mentioned on this board - that trigger symptoms in some people but not in others - include aspartame, coffee, alcohol, sweets, gluten, and dairy. I've forgotten lots.

And the changes that cause improvement include addition of supplements like vitamin D, iron of course, magnesium for some people, as well as entire dietary make-overs, which seem to mostly involved an increase in whole foods and vegetables. They include non-inflammatory diets, gluten-free or gluten- and dairy-free diets, a low-oxalate diet, and (for me and I think peanut) a mixed bag loosely based on the Wahls diet (no gluten or dairy, no added sugar, whole foods, lots of vegetables of a variety that give you all the recommended micronutrients, low carb and high fat, only monounsaturated or saturated fats (no trans fat, no high-heat cooking with unsaturated fat, only healthy saturated fats like coconut oil and fat from pastured animals), organ meats, fish.

I would hazard a guess that any attempt to "treat" without including diet and lifestyle in the treatment plan is unlikely to succeed.
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.

stjohnh
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Location: Palo Alto, California

Re: Weaning off medications

Postby stjohnh » Sun Jun 02, 2019 2:22 pm

Obewan wrote:Has anyone been able to successfully wean themselves off dopamine agonist meds and treat their RLS symptoms with a more holistic, non-medication approach?


Well, some of the answer depends on what you consider a "non-medication" approach.

Your question also suggests that you may be just considering dopamine agonists as the only medication approach. There are several medicines that are used to treat RLS that are not dopamine agonists.

Many people, including me, have been able to get off dopamine agonists with Iron treatments.

Iron is part of our natural environment and part of our natural body chemistry. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. Many would consider this "medication" but what is happening when a person takes IV iron is that they are simply replacing the missing iron in the brain. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, but some people can have their symptoms reduced with oral iron.

Is replacing the iron (a natural mineral) in your brain a "medication" treatment??? Depends on your definition of "medication."
Blessings,
Holland

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Weaning off medications

Postby debbluebird » Tue Jun 04, 2019 10:46 am

I'm weaning off gabapentin. Like most meds, when you wean off of them, it's not too comfortable. I've had 4 hrs of sleep tonight so far. I have been getting 8, which has been great. I'm usually awake every 2 hrs, so its not like sleeping all the way through, but I've been feeling pretty good. It was a little bumpy when I went from 1800 mg to 1500 mg. Tonight I went to 1200 mg. A very bad spasm just woke me up. I expected this to happen tonight. It's one thing to be awakened up. It's another when it's very painful. I think that's what makes it worse, it's being painful. Usually when I'm awake every 2 hrs, its either time for another pill, I ride my bike, or I'm just able to go back to sleep.
I have also been sleeping about half the night in my chair. I've been moving my bipap machine back and forth from the bed to the chair (tv tray). Right now I'm on the bike. Then I will try the chair again. I'm so so sleepy right now.
I'm going off gabapentin because of weight gain.
So I'll see what happens next.

debbluebird
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Re: Weaning off medications

Postby debbluebird » Wed Jun 05, 2019 3:32 am

Weird thing, I never got anymore spasms, so I was able to get 4 more hours of sleep, thank goodness.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Weaning off medications

Postby debbluebird » Wed Jun 05, 2019 1:00 pm

No spasms last night, Got 7.5 hrs. That spasm I had the other night might not have anything to do with the gabapentin.

ViewsAskew
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Re: Weaning off medications

Postby ViewsAskew » Wed Jun 05, 2019 5:29 pm

debbluebird wrote:No spasms last night, Got 7.5 hrs. That spasm I had the other night might not have anything to do with the gabapentin.


YAY!
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.

debbluebird
Posts: 2034
Joined: Mon May 21, 2012 3:27 pm

Re: Weaning off medications

Postby debbluebird » Thu Jun 06, 2019 12:59 am

I'm still going to stay on one dose for 2 weeks at a time. Next dose will be 900 mg.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Weaning off medications

Postby debbluebird » Fri Jun 07, 2019 8:17 am

I was wrong. It just took a few nights for the level of gabapentin to go down. It was nice sleeping for awhile. I need off this gabapentin. I tried to get off methadone and decided this would be better.

ViewsAskew
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Re: Weaning off medications

Postby ViewsAskew » Fri Jun 07, 2019 7:44 pm

Darn 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.

debbluebird
Posts: 2034
Joined: Mon May 21, 2012 3:27 pm

Re: Weaning off medications

Postby debbluebird » Sat Jun 08, 2019 6:28 pm

I added back Kratom. That took care of it.

Obewan
Posts: 6
Joined: Tue Feb 12, 2019 9:51 pm

Re: Weaning off medications

Postby Obewan » Mon Jun 10, 2019 10:27 pm

stjohnh wrote:
Obewan wrote:Has anyone been able to successfully wean themselves off dopamine agonist meds and treat their RLS symptoms with a more holistic, non-medication approach?


Well, some of the answer depends on what you consider a "non-medication" approach.

Your question also suggests that you may be just considering dopamine agonists as the only medication approach. There are several medicines that are used to treat RLS that are not dopamine agonists.

Many people, including me, have been able to get off dopamine agonists with Iron treatments.

Iron is part of our natural environment and part of our natural body chemistry. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. Many would consider this "medication" but what is happening when a person takes IV iron is that they are simply replacing the missing iron in the brain. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. Note that the blood tests doctors usually do (ferritin test) to check for low iron only check for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, but some people can have their symptoms reduced with oral iron.

Is replacing the iron (a natural mineral) in your brain a "medication" treatment??? Depends on your definition of "medication."


Thank you for your response. I appreciate you sharing with me about the iron treatment approach. My ferritin level is within the acceptable range, so I don't know if I can get a doctor to approve an IV iron treatment, but I have been thinking about taking oral iron to see if that helps. There was a Johns Hopkins article that talked about how oral iron provided some relief to RLS sufferers even though they were not anemic.

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

Re: Weaning off medications

Postby stjohnh » Mon Jun 10, 2019 11:54 pm

Obewan wrote:...My ferritin level is within the acceptable range, so I don't know if I can get a doctor to approve an IV iron treatment, ...


I don't think you quite understand the ferritin test. It ONLY indicates the amount of iron in the BLOOD. It does NOT show how much iron is in your brain. If you have RLS, your BRAIN iron is too low. The ferritin test has almost nothing to do with your brain iron.

Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

It explains why the ferritin test is not very helpful in treating RLS and explains which tests are necessary to give IV Iron safely. A normal ferritin does not mean your brain iron is normal.
Blessings,
Holland


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