Dysautonomia, shortness of breath and Magnesium

Gingergrrl

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This thread is a continuation from another thread that went off topic. The quotes in this new thread are from the old thread re: neurological issues and the IOM contract. I am not on my own computer and not able to link to the old thread (hoping maybe a moderator can do that?) Tagging the posters from the old thread @zzz @Sidereal @melamine @A.B.

If it makes your muscles really weak and floppy and crashes your BP even further. This is what it used to do to me.
Thank you and this is not my experience so I suspect I am not getting too much magnesium or reacting badly to it.

@Gingergrrl - In that kind of situation, my symptoms tend to be more localized - to my arms in your example, as well as contributing to overall exhaustion and PEM to one degree or another. My lung symptoms seem to have become part of low level background noise in the past year or so, but when they're more noticeable they can remain so for weeks or more and have tended to be at least as bad when I lie down as any other time.
My arms are incredibly weak and I get severe shortness of breath when I lift things, especially over my head. But lying down relieves the symptoms and I do not ever experience them at rest (with the exception of tachycardia in my sleep which is pure dysautonomia as far as I know) and totally different (in my case) then the severe shortness of breath that I get from exertion.

My weakness only got that bad if I tried supplementing something that forces energy production on a system that can't handle it, stuff you see people here frequently keeling over from, like methylfolate, methyl B12, CoQ10, D-ribose etc.
I got severe over-methylation reaction and cannot tolerate folate or B-12 but I have zero reaction to CoQ10 or D Ribose. None of them made me weaker but none have helped either.

The remaining quotes are from @zzz

This seems to be confusing, as these symptoms are due to opposite causes. @melamine also questions the role of mitochondrial function here, which is a very reasonable question, and certainly enters into the picture.
I feel that mitochondrial functioning plays a huge role in my own case separate from (or connected to?) the dysatuonomia. I am temporarily staying with my parents while my husband is out of town and had to walk up three steps (no exaggeration, only three) to get to into their house and became so short of breath that I was close to taking nitroglycerin in case it was angina. I tried Nitro once and it did not help and I am not convinced that I even have micro vascular angina vs. my mitos/cells just do not function from ME/CFS.

To the contrary, Dr. Myhill found that intracellular RBC magnesium tests showed her patients uniformly deficient in magnesium.
I was deficient on this test too (not by Dr. Myhill but from my own MD) even though I take three forms of Mag.

That is why she has stated that magnesium injections "are so helpful that it is pointless progressing onto other things without trying these first." It is due to her statements that I started magnesium by nebulizer, and have experienced great improvements over the last year as a result.
I have been doing the Myhill protocol with the nebulizer for at least six months with no improvement (unless of course I would be even worse without it which is possible.) I just raised the dose to 1/2 tsp from 1/3 tsp and hoping this helps. My doctor confimed today he will prescribe the shots if I can get him more information about it (I assume the amount correlates to body weight?) so I will talk to you about this later by PM.

NMDA agonism in and of itself does not provide lasting benefits. But if combined with treatments that address the fundamental energy deficit in ME/CFS, it can provide impressive symptomatic relief. (Provigil helped me lead a near-normal life for over eight years.) However, many people are too sensitive to tolerate any NMDA agonists at all, and for these people, such drugs can easily worsen their condition.
Which other meds increase the energy deficit as my doctor said a firm no re: provigil for me and I trust him on this. I cannot tolerate anything activating and get severe agitation or even akathisia from things that others tolerate (like methyl B12, Folate, Carntine, etc.)

Thanks again and hoping everyone from the prior thread finds this one!
 

melamine

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This thread is a continuation from another thread that went off topic:
http://forums.phoenixrising.me/inde...s-in-me-suppressed-in-the-iom-me-cfs-r.36060/

My arms are incredibly weak and I get severe shortness of breath when I lift things, especially over my head.
Anything requiring me to use my arms over my head or over my chest when lying down causes worse and more immediate symptoms than using them in other positions.

I got severe over-methylation reaction and cannot tolerate folate or B-12 but I have zero reaction to CoQ10 or D Ribose. None of them made me weaker but none have helped either.
I've either felt nothing or more energy depleted by all of these things.
 
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Sidereal

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This occurs only with an overdose of magnesium - one that causes severe CNS side effects. It's important to remember that multiple studies have shown that the majority of the U.S. population is deficient in magnesium. There's no reason to believe that this is any different in other parts of the Western world, or that ME/CFS patients suffer from this less. To the contrary, Dr. Myhill found that intracellular RBC magnesium tests showed her patients uniformly deficient in magnesium. That is why she has stated that magnesium injections "are so helpful that it is pointless progressing onto other things without trying these first." It is due to her statements that I started magnesium by nebulizer, and have experienced great improvements over the last year as a result.
I took 50 mg which cannot be considered an overdose.

I think what Dr Myhill says is true about the patients she sees (i.e., people who are still functioning somewhat and can get to her office). We don't see or hear from the severely afflicted patients often so I'd be cautious about making sweeping statements about safety of magnesium. Severe and very severe ME is a state unimaginable even to patients who are mildly or moderately affected. Everything you take carries a huge risk.

At the time when this was happening to me years ago I saw anecdotes online (not on PR) of people with "adrenal fatigue" taking a magnesium pill and becoming so weak they couldn't be woken up for 24 hours. These things are not to be dismissed on a forum such as this one where severe ME patients may be reading/lurking but too ill to participate.

You say CNS depression is rare in ME/CFS. Maybe so but I have spoken to ME/CFS people with profound muscle weakness etc. who cannot take any sedatives at all like magnesium or benzodiazepines even though they have severe adrenaline surges and are chronically in that tired & wired, anxious state.

Do you have a reference here? In any case, ketamine is very different from magnesium. Magnesium is required for proper neurological functioning; ketamine is not. You can live fine without ketamine (most people do), but you can't live without magnesium. Ketamine's functions are purely neurological, at least as far as we know, while magnesium plays multiple essential roles in bodily function. People can become tolerant to ketamine to the point where it's no longer effective; this does not happen with magnesium, due to its essential role in body chemistry.
I wasn't suggesting ketamine is beneficial in the way magnesium is. Clearly, magnesium is a critical mineral involved in energy generation and other essential processes. I wrote that part of my post in response to what Marco linked to about glutamate/NMDA/excitotoxicity.

I have the Kindle version of Tuning the Brain so I can't get you the normal page number but here's what Goldstein said:

The most effective medication would act one or two (or many) synapses away from the NMDA receptor and reconfigure the involved neural networks. Otherwise, almost everyone would respond to ketamine an NMDA-receptor antagonist, and tolerance, or receptor desensitization, would never occur.
Any hypothesis of this disease needs to be able to explain why some function better on NMDA agonists while others get worse. As you say, @zzz, modafinil helped you function for many years. There are many patients with mild ME/CFS who say the same about modafinil and other stimulants. It would seem, though, as the disease process worsens that these drugs are no longer effective or just cause that wired, agitated feeling and no useful energy. A minority get a paradoxical sedating effect from stimulants (Dr Goldstein noted this too in one of his books). I'm one such weirdo. I tried using a light box in the past (bright light therapy). It's stimulating as it raises catecholamines so people have to use it first thing in the morning or else can't sleep. Well, looking at it for five minutes sent me to sleep. :lol: :rolleyes:
 

WillowJ

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Anything requiring me to use my arms over my head or over my chest when lying down causes worse and more immediate symptoms than using them in other positions.
Same here. I assume that's an OI thing.

Maybe so but I have spoken to ME/CFS people with profound muscle weakness etc. who cannot take any sedatives at all
My sleep doc recommended against muscle relaxant and to be careful with sedatives in my particular case (I can still get to clinic some of the time) because of my test showing muscle weakness in lungs. It makes sense to be careful, particularly for the patients worse off. We don't know what all problems they have.
 

zzz

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Which other meds increase the energy deficit as my doctor said a firm no re: provigil for me and I trust him on this. I cannot tolerate anything activating and get severe agitation or even akathisia from things that others tolerate (like methyl B12, Folate, Carntine, etc.)
It's hard to say exactly, because this varies so much from one person to another. Basically, you want to stay away from all stimulants, which you know. But there are some supplements that increase energy in some people, and cause symptom worsening in others. For example, piracetam and PQQ help many people, but I cannot tolerate them. You need to be cautious with anything that increases energy. It's not just medications that increase the energy deficit; as @Sidereal pointed out, many of us can't process the increased energy that comes through supplements. For example, I cannot tolerate the supplements that are most effective at increasing mitochondrial energy, and these are decreasing the energy deficit, if anything. But certain parts of my regulatory system obviously aren't working properly.

You just have to be very careful taking anything new. Starting with low doses seems to be a necessity for sensitive people.
I took 50 mg which cannot be considered an overdose.
A dose that low is not normally even considered therapeutic. I was using "overdose" as a relative term here. I.e., a dose of anything that causes severe side effects is an overdose for that person.
I think what Dr Myhill says is true about the patients she sees (i.e., people who are still functioning somewhat and can get to her office). We don't see or hear from the severely afflicted patients often so I'd be cautious about making sweeping statements about safety of magnesium. Severe and very severe ME is a state unimaginable even to patients who are mildly or moderately affected. Everything you take carries a huge risk.
I agree completely, and know from my own experience that anything new is risky. (And even previously "safe" things have a nasty habit of turning bad from time to time.) I have seen here on PR a number of people for whom Dr. Myhill's starting dose for injections (or nebulization) is way too high, and possibly dangerous. I would not recommend it as a starting dose. In retrospect, I should have added (and will add) a cautionary note along these lines to my post that quotes Dr. Myhill.

As for the really severe reactions to magnesium, they do offer some clues as to what other problems may be present. On one hand, I mentioned the hypersensitivity of the NMDA receptors. When this is true, magnesium can gradually be better tolerated over time.

But a condition where a 50 mg pill causes CNS depression seems to imply far more than hypersensitive NMDA receptors. These other causes may not be typical in ME/CFS, but in the most severe cases, many symptoms appear that are not typical.

The most common documented cause of hypersensitivity to small oral amounts of magnesium is renal failure. I would think that if someone had such a great sensitivity to magnesium, it would be good to get a basic renal function test, such as creatinine level. If renal failure exists, it could certainly explain a lot of other symptoms. It would also be helpful in knowing ahead of time what types of drugs or supplements could not be tolerated.

Hypothyroidism and adrenal insufficiency, both common in ME/CFS, can also exacerbate magnesium reactions, though by themselves I wouldn't expect them to have the effect that you describe.

In any case, I think the phenomenon being described here is yet another example of "the poison is in the dose." For severely afflicted people, typical therapeutic supplement doses of magnesium may be quite toxic, and in the worst cases, supplemental magnesium can become toxic long before it becomes therapeutic. Depending on the cause of the reaction, a gradual titration of the magnesium dose may permit therapeutic levels to be reached, or it may not.
At the time when this was happening to me years ago I saw anecdotes online (not on PR) of people with "adrenal fatigue" taking a magnesium pill and becoming so weak they couldn't be woken up for 24 hours. These things are not to be dismissed on a forum such as this one where severe ME patients may be reading/lurking but too ill to participate.

You say CNS depression is rare in ME/CFS. Maybe so but I have spoken to ME/CFS people with profound muscle weakness etc. who cannot take any sedatives at all like magnesium or benzodiazepines even though they have severe adrenaline surges and are chronically in that tired & wired, anxious state.
I certainly agree that the most severe cases may have such large-scale systemic failures that the reactions you describe can happen, and it is very possible that such reactions may not be explained by any of the causes I have listed. These very severe states are understood even more poorly than the less severe ones. Certainly, the greatest caution must be exercised when severely afflicted people take any drug or supplement, and nothing can assumed to be safe. Magnesium may be a vital substance for the body's operation, but if the body can't process what is effectively rapid supplementation, then even a small dose can be dangerous. This is quite clear. You're quite correct to bring this up; I should have made this point in my previous post.
Any hypothesis of this disease needs to be able to explain why some function better on NMDA agonists while others get worse. As you say, @zzz, modafinil helped you function for many years. There are many patients with mild ME/CFS who say the same about modafinil and other stimulants. It would seem, though, as the disease process worsens that these drugs are no longer effective or just cause that wired, agitated feeling and no useful energy.
Dr. Goldstein noted that the people who did best with stimulants (usually NMDA and AMPA) were typically the ones for whom pain was not a major component of their illness. However, lack of pain does not guarantee tolerance of such stimulants, as I can testify from personal experience. What you say about the worsening of the disease process decreasing the effectiveness of these drugs has certainly been my experience. Why is this so? It would seem that one factor would be a likely increase in microglial inflammatory activity, which would exacerbate any receptor agonism, possibly even turning it excitotoxic. There obviously could be other factors at work as well.
I tried using a light box in the past (bright light therapy). It's stimulating as it raises catecholamines so people have to use it first thing in the morning or else can't sleep. Well, looking at it for five minutes sent me to sleep. :lol: :rolleyes:
I have to admit - that's the first time I've ever heard of that reaction! :jaw-drop:
 

A.B.

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One teaspoon of magnesium sulfate is 1.5 grams. The effect it has depends on the method of administration. How are you taking it?
I drink it dissolved in a glass of water. I used to get diarrhea from anything more than 400mg. Nowadays I can tolerate large doses but maybe tolerance is higher with the sulfate form?
 

melamine

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It's stimulating as it raises catecholamines so people have to use it first thing in the morning or else can't sleep. Well, looking at it for five minutes sent me to sleep. :lol: :rolleyes:
:lol:

Same here. I assume that's an OI thing.
The thing is, I don't have other classic symptoms of OI (?) and it was ruled out through tilt table testing by the best diagnostician in the northeast US. Yet my arms act like the blood is draining from them with activities that take them above my body. Confusing, unless it's nerve damage in my case, which is quite extensive (permanent loss of feeling in fingertips, among other things)
 

Sidereal

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I have to admit - that's the first time I've ever heard of that reaction! :jaw-drop:
HAHA, well, there's a first time for everything. :lol: Dr Goldstein, who has seen it all, was apparently well aware of this phenomenon. Here's an excerpt from the Stimulants chapter in Tuning the Brain (sorry, no page number as I only have the Kindle version).

Only about 25 percent of neurosomatic patients will have a good reaction to stimulants. Otherwise, they will have no reaction at all, even to very high doses, or stimulants will not only surprisingly calm them but will paradoxically make them sleepy or exacerbate their symptoms in general. This response indicates an abnormality of the dopamine transporter or auto-receptor hypersensitivity and also suggests the use of an agent that will inhibit the secretion of catecholamines, such as guanfacine.
Guanfacine is an alpha 2a adrenergic receptor agonist. Seems Goldstein has identified the subgroup here who would (unlike many patients with ME/CFS/dysautonomia who benefit from antagonism of this receptor) do horribly on stuff like yohimbe or mirtazapine.

When dealing with a patient made sleepy by stimulants or who develops rapid tolerance to them, there is always the question of whether to desensitize the D2 autoreceptors with a D2/D3 agonist (some autoreceptors are of the D 3 variety) or to block hypersensitive autoreceptors with haloperidol, which, unfortunately, is not D2-selective enough for this purpose, blocking D3 receptors also.
Haldol for lunch, great. :lol:
 

adreno

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The thing is, I don't have other classic symptoms of OI (?) and it was ruled out through tilt table testing by the best diagnostician in the northeast US. Yet my arms act like the blood is draining from them with activities that take them above my body. Confusing, unless it's nerve damage in my case, which is quite extensive (permanent loss of feeling in fingertips, among other things)
Thoracic outlet syndrome, perhaps?

http://en.wikipedia.org/wiki/Thoracic_outlet_syndrome
 

Gingergrrl

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I will not have access to my regular computer for 4-5 days and having trouble with things that I can normally do when at home.

@Sidereal is it possible for you to copy the link of the old thread and put it in this thread?

Also to @melamine and @WillowJ and everyone who had testing showing lung weakness, do you remember the name of the test? I was supposed to do a breathing test while in the hospital cardiac unit back in Sept 2014 but was so weak, I literally could not create enough air to attempt the test so they canceled it! Can you describe the test and treatment?

Yet I can take beta blockers, benzos, magnesium, etc, and these do not make me weaker and only help my tachycardia etc.

the one med that made my lungs feel like you guys described was Mestinon (1/8 of a pill) and was a horrible experience.

Normally if a med says it could be stimulating, I avoid it like the plague! I had horrible agitation from micro dose of Carnitine. Yet d ribose and coq10 do nothing for me- good or bad.
 

melamine

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Normally if a med says it could be stimulating, I avoid it like the plague! I had horrible agitation from micro dose of Carnitine. Yet d ribose and coq10 do nothing for me- good or bad.
Same here - I think I even got a cardiac reaction to carnitine - could not breath in without intense pain for about a half hour not long after taking a moderate dose.

Normally lung function is tested first with a standard pulmonary function test, where you breath in and out in prescribed ways. There are extra features of the test that can be added if your symptoms suggest the need for more specific testing.
 

Gingergrrl

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I also want to correct an earlier post re: nebulizer but can't find it!

I said I had done nebulizer for over six months but I realized from my records, it was only four months. Also, it did help me in the beginning but after I had several relapses (due to other causes) it stopped working.

But I am still doing it and increased the dose so still hoping it will help me again like it did in the beginning.

@zzz Do you think it could take about six months for it to work again like it did in the beginning?
 

adreno

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I drink it dissolved in a glass of water. I used to get diarrhea from anything more than 400mg. Nowadays I can tolerate large doses but maybe tolerance is higher with the sulfate form?
1.5 grams of magnesium sulphate contains only 150mg magnesium (10% elemental).
 

Sushi

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Yet my arms act like the blood is draining from them with activities that take them above my body. Confusing, unless it's nerve damage in my case, which is quite extensive (permanent loss of feeling in fingertips, among other things)
Here is an interesting article:
Autonomic diseases: clinical features and laboratory evaluation
Christopher J Mathias

Activation of arm muscles, especially when upright (when reaching
upwards, washing dishes, ironing clothes, and pushing a
lawnmower), may increase cerebral symptoms of orthostatic
hypotension by a subclavian steal-like syndrome by further
reducing vertebral and thus brain stem blood flow.
 

WillowJ

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The thing is, I don't have other classic symptoms of OI (?) and it was ruled out through tilt table testing by the best diagnostician in the northeast US. Yet my arms act like the blood is draining from them with activities that take them above my body. Confusing, unless it's nerve damage in my case, which is quite extensive (permanent loss of feeling in fingertips, among other things)
Fluge and Mella were talking about hypothetical microvascular changes in blood flow, hypothetically due to an antibody. I wonder if this could show up more noticeably in extremities? (might explain some things in my case, if so).

I don't know enough about nerve problems to comment about that.