Fighting opioid tolerance

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.
Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Mon Feb 20, 2017 11:00 pm

Here's the one that talks about lack of iron at blood brain interface but iron hogging by our mitochondria. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4559751/

And yes, they do speculate about iron transport across BBB. But like I said, by day...no RLS. By night, well you know the hell. So I sneak my brain some highly bioavailable iron at night and it works for me and numerous others.

Muchas suerte!!!

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Fighting opioid tolerance

Postby legsbestill » Mon Feb 20, 2017 11:38 pm

Ferrous bisclycinate does not suffice to quiet my symptoms whether I take it at night time, on an empty stomach, with OJ or whatever. Happy the sufferer for whom such a simple solution is effective.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Tue Feb 21, 2017 12:10 am

???
Postby legsbestill » Fri Dec 30, 2016 5:51 pm

Also, don't forget to keep an eye on your ferritin levels. Getting them up helped me a lot. And marijuana also helps a lot with sleep if you can get it.

Legsbestill maybe try the ferrous bisglycinate patch? Called PatchMD Iron Plus.

Rustsmith
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Location: Pueblo, Colorado

Re: Fighting opioid tolerance

Postby Rustsmith » Tue Feb 21, 2017 12:53 am

Noreserve, when I was first diagnosed with RLS my ferritin level was 40. I have been taking iron sulfate pills with vitamin C ever since. The vitamin C is critical since it is needed to chelate the iron and prevent precipitation of the iron in the gut as iron sulfide. Also, my other three serum iron parameters are all within the normal range.

As for chronic inflammation, the answer to that is no. I am a competitive athlete (runner) and any inflammation would degrade my performance on the track and on the roads. So, I am exceedingly careful in that regard.
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.

QyX
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Location: Berlin / Germany

Re: Fighting opioid tolerance

Postby QyX » Tue Feb 21, 2017 1:15 am

I just bought ferrous bisglycinate on Amazon. It would be amazing if it would work.

Taking Methylphenidate at night feels somehow unnatural and weird. I did a lot of that stuff in the past years but somehow I just want to be normal. Doctors expect you to be normal and if you do not fit in the box you might run into a lot of problems. So it is no good to get used to unnatural treatment options. After all I am using Methylphenidate just like DA.

The hole discussion here is very interesting but I am pretty sure RLS is not all about iron & ferritin.

There must be something wrong with dopaminergic receptors or the DAT-Receptor or dopamine synthesis.

Also when I have this symptoms when for example just my foot are burning and you touch them they feel very hot, my conclusion is that there also could be something wrong with the endothelium, causing vasodilatation in this part of the foot. There is some kind of mechanism behind it and when symptoms are so local I have trouble thinking that they are caused by the CNS.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Tue Feb 21, 2017 1:34 am

Qyx, I think you will appreciate this easy to read article:
https://www.hormonesmatter.com/restless-legs-syndrome/

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Tue Feb 21, 2017 1:39 am

In the article low brain iron is somehow linked to dopamine abnormalities. Researchers aren't yet willing to state exactly how it is linked in the case of RLS. I believe that they are certain that iron is required in most brain functions and that in terms of our receptors it assists in dopamine binding.

Rustsmith
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Location: Pueblo, Colorado

Re: Fighting opioid tolerance

Postby Rustsmith » Tue Feb 21, 2017 1:52 am

Qyx, I would agree that there is something wrong that is at a deeper level than simply the availability of dopamine and/or iron. Iron is one of the precursors in the formation of L-DOPA and then dopamine in the brain. If iron levels are low, then the levels of dopamine in that area are also likely to be low and thereby the availability of the various dopamine receptors.

Also, we need to keep in mind that Dr Allen at Johns Hopkins has found that the levels of glutamate in the same areas of the brain are also abnormal in RLS patients. And that current research at a number of institutions, such as Penn State, are finding that there are abnormalities in the rate of blood flow in the legs due to unusual dilation and constriction of the blood vessels when experiencing different levels of hypoxia.

Finally, as we frequently remind everyone, we are all different. What helps one person is very frequently of little or no benefit to the next one.
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.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Tue Feb 21, 2017 2:25 am

Steve, I believe that while our bodies and other illnesses are all different RLS is RLS. Body anemia is about the same in humans - meaning the need for additional iron. Type I Diabetes is about the same - meaning the need for insulin. Dehydration is about the same - meaning the need for fluids. Primary RLS - meaning low brain iron, brain iron mismanagement and lousy dopamine transport system is the same in us.

Now my story Steve. I've had mild intermittent RLS since childhood. Through-out my 20s and 30s my allergist would perform an annual iron panel on me and I've been on the low side of normal and high with no difference to RLS. In my 40s I started to take melatonin and developed restless body. I chose "Gentle Iron" because I have IBS. It worked the first night and every night until I ran out of it one night and the health food store was closed. I went to Walgreens and bought ferrous sulfate figuring I'd rather be constipated than sleepless. I took the 65mg ferrous sulfate expecting my usual good night's sleep. Sleep did not come. At some point I took a second one and eventually fell asleep. I experimented with it, including vitamin c, but it never provided relief. Anyways, now my ferritin is over 100 yet I am getting attacks more and more frequently. As we age so do our dopamine receptors. Everyone's receptors age, not just those of us with RLS. I assume that has something to do with it. Nevertheless, despite my robust iron stores, I continue to need that 25mg capsule of ferrous bisglycinate when I get an attack.

As you know, the higher our stores get, the less likely we are to absorb iron via the gi tract. So I never want my body iron stores to get so high that I can't give my brain some iron at night when I need it. Might I suggest that when your iron levels go back to normal range you try the bisglycinate. I don't know if you have "primary" rls or RLS due to some other disease. It seems that iron may not be the answer for people who have say multiple sclerosis and who have lesions on the spine that seems to impair the transmission of dopamine through the central and peripheral nervous system. I read an article that indicated that 100% of people with traumatic spinal cord injury that they studied had RLS. I feel comfortable in saying that almost no amount of iron will help these people.

Steve, we can't sit on our hands and pray for answers. And we can't use the failure of iron in some cases as proof that primary RLS is different in everyone. It's not. It's more similar than it is different. Just the way body anemia is more similar than different.

Rustsmith
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Re: Fighting opioid tolerance

Postby Rustsmith » Tue Feb 21, 2017 3:11 am

Noreserve, first off I am definitely not sitting on my hands waiting around. I am currently a participant in one RLS clinical trial and have volunteered for another where I am simply waiting on the university and hospital go make their way through the interminable paperwork and approvals necessary to conduct a clinical trial. Also, I have primary RLS in a very severe form that affects not only my legs, but also my arms and torso and without medication, my sleep would be virtually non-existent due to insomnia, not the movement problems.

As for a single cause for RLS like diabetes or dehydration, I respectfully and strenuously disagree. In medicine, the term syndrome is used to describe a condition where the symptoms are similar but there may be different causes of the symdrome. Some of us have movement issues as our primary issue and for others, sleep deprivation is their primary problem. And then there are the vascular issues mentioned in my previous note. Dr Allen's research work has shown the movement and insomnia issue are probably due to different neurotransmitter problems in the same portions of the brain and one of these, glutamate, is not directly tied to the iron/dopamine issues normally associated with the movement symptoms. And so far, I have not seen anyone who can explain why a syndrome that is believed to be based upon neurotransmitter disfunction should have any impact upon blood flow in the legs.

Simply put, there is simply too much that is not known at this point to simply point to iron problems for everyone. Yes improving iron levels helps a lot of RLS patients, but not all of us.

Finally, four different RLS experts (research physicians studying RLS, not every day doctors) have looked at information and not a single one of them has suggested changing any of my iron levels, up or down, would provide any benefit to the control of my RLS.
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.

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Tue Feb 21, 2017 3:34 am

Steve, I hate to disagree with you but iron deficiency has a direct affect on glutamate if I'm reading this article correctly: https://www.ncbi.nlm.nih.gov/pubmed/27899234

Someone with type I diabetes may present with lots of different symptoms - everything from extreme thirst to peripheral neuropathy to coma. What does insulin have to do with peripheral neuropathy? Well everything most likely. All these varied symptoms doesn't change the somewhat standardized definition of type I diabetes.

What does an iron deficient brain have to do with poor blood flow in legs. I don't know but probably everything as insulin does with neuropathy. No matter how weird strange and different some people's symptoms are doesn't change the somewhat standardized definition of RLS. Calling it a syndrome or disease shouldn't really change the consistent findings of altered brain iron management and altered dopamine transport that goes to the heart of RLS.

There are certain criteria (which are standardized and the same) in order to diagnose RLS. The most important one probably being that irresistable urge to move one's legs/body. Like I said, when I was taking melatonin I had restless body, not just legs. I would swear I felt it in my head - that urge to move. Yet that doesn't change my genetically lousy dopamine transport system and anemic brain.

Do we confuse people when we tell them that everyone's RLS is different? The flu is caused by a virus yet some people only get a sore throat while others a fever while others congestion. Do those symptoms change the cause of the flu?

Noreserve
Posts: 41
Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Tue Feb 21, 2017 3:40 am

Steve are you allowed to tell us about the clinical trial that you are enrolled him? So exciting I can't stand it. Takes big kahonas to do that. Xx

Noreserve
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Joined: Mon Nov 14, 2016 3:42 am

Re: Fighting opioid tolerance

Postby Noreserve » Tue Feb 21, 2017 4:04 am

Steve, reduced iron is tied to reduced peripheral blood flow: https://pennstatehersheyneuroreport.org ... eficiency/

Rustsmith
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Re: Fighting opioid tolerance

Postby Rustsmith » Tue Feb 21, 2017 1:26 pm

Noreserve, the definition of a syndrome according to Webster is "a group of signs and symptoms that occur together and characterize a particular abnormality or condition". RLS is currently classified as a syndrome. The flu, diabetes, MS, etc have identified causes and are therefore not syndromes but infections or fall into the category of a disease. Aspergers, Chronic Pain Syndrome and Chronic Fatigue are currently categorized as syndromes because they have a common set of symptoms but the cause is not known and there could be multiple origins for the symptoms. And as you pointed out earlier, we have primary RLS, yet there are also secondary forms that have to be explained. Renal issues and pregnancy can certainly be tied to iron issues, but MS is another matter.

As for the iron and peripheral reference, I have heard Dr Patton, who your short reference cites, speak about her research. It goes much deeper than just an iron deficiency hypothesis. And I will once again mention that I am not iron deficient by any currently used test, yet my RLS is quite severe.

As for the research study, I will be able to say a bit more in a couple of days once I find out which part of the study I will join (control vs test subject). But this one is quite simple and does not carry any risk to me. The one that I am waiting on carries risk and I am not willing to speak about it yet, partly because there will be only one or two test subjects and I don't want anymore competition for those slots than already exist. As for the risk, I have studied what they plan and believe that the potential benefits to me far outweigh the potential downsides and that the probability of encountering the downsides is low enough to be justified. Besides, evaluation of the risks is what the university and hospital reviews of the trial are designed to determine and control.
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.

badnights
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Re: Fighting opioid tolerance

Postby badnights » Wed Feb 22, 2017 8:01 am

viewtopic.php?p=64096#p64096

syndrome vs. disease and other interesting name things
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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