@Cort: First: I'm new here. I've already read many of your interesting articles and found them and the comments upon them often quite valuable. Thanks for your dedication. Now I stumbled onto this question of yours "Her endocrinologist said POTS was common in her reactive hypoglycemia patients. Why would that be so?" and in the article "How sugar is contributing to her orthostatic intolerance isn't clear but the fact it does is clear." and saw an opportunity to maybe add something to the conversation. Here is my hyphotesis:
I am a long time ME/CFS/Fibro patient and am now digging deaper into the topic of epineprhine/adrealine. When I saw this article and these questions I thought: adrenaline? because:
A) One type of POTS and a comparable type of dysautomia are called hyperadrenergic or caused by high amounts of adrenaline in the blood.
B) Sometimes adrenaline is called the opposite-of-insulin hormone. While adrenaline has many unrelated effects, it's effect on blood sugar (glucose) is near opposite of the effect of insulin.
Therefore I did look further and started looking up "reactive hypoglycemia" and ended up with
https://en.wikipedia.org/wiki/Reactive_hypoglycemia
-> The lists of signs and symptoms had some extended overlap with the symptoms of high adrenaline levels (and CFS to some extend too). And under causes on this site: "Some researchers suggest that certain people may be more sensitive to the body’s normal release of the hormone epinephrine, which causes many of the symptoms of hypoglycemia."
Having seen this I went further too look into it I came too
http://www.emedicinehealth.com/low_blood_sugar_hypoglycemia/page3_em.htm
-> The article opens with "Epinephrine is among the major hormones released during hypoglycemia. Epinephrine causes the majority of the early symptoms of hypoglycemia."
Now comes the potential link with POTS in
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3904426/ (and also in
http://myheart.net/pots-syndrome/types/).
-> When looking too the brown tabs in the first article one can find
"Hyperadrenergic POTS
One subset of POTS is characterized by an excessive increase of plasma norepinephrine and a rise of BP on standing. Hyperadrenergic POTS is defined as POTS associated with a systolic BP increment ≥10 mmHg during 10 minutes of HUT, and an orthostatic plasma norepinephrine ≥600 pg/mL. These patients have similar HR increment to nonhyperadrenergic POTS, but tend to have prominent symptoms of sympathetic activation, such as palpitations, anxiety, tachycardia, and tremulousness. These patients have a larger fall in BP following ganglionic blockade with trimethaphan, and higher upright plasma norepinephrine levels than did nonhyperadrenergic POTS patients, presumably indicating a major role of orthostatic sympathetic activation. Elevation of plasma norepinephrine ≥600 pg/mL) was documented in 29.0% of patients tested in a recent study."
-> Epinephrine is not the same as norepinephrine, but the later is a precursor to the former so both often are found in concert. Epinephrine itself is rarely measured as it is very hard and expensive to do so.
-> Often it is believed the POTS causes the boost in adrenaline, but it is not well understood yet. My take on it is that it is actually the adrenaline that causes the POTS. My point is of course clearly unproven.
-> I found likewise links between adrenaline and one form of dysautomia before but they are harder to find.
Another unproven opinion of me is that ME/CFS/Fibro (or some subset of it) go often hand in hand with very long periods of largely elevated adrenaline levels. My reasoning is as follows.
-> A large subset of symptoms of ME/CFS/Fibro overlap with symptoms of high doses of adrenaline.
-> Often ME/CFS patient are told to have a fight-or-flight response, tight muscles, look anxious... and that all can be attributed to high levels of adrenaline too.
-> Most patients with ME/CFS have sleeping disorders while simultaniously being totaly exhausted; sleeping with supposed (by me) high to very levels of adrenaline ain't easy.
-> Unlike psychiatrists, I again do turn cause and effect: I believe it is the disease that causes the high levels of adrenaline, not the other way arround (as for example fear would lead to adrenaline and further to CFS).
This leads to another unproven opinion of me:
-> I redefine stress (unscientifically, in order to demonstrate my feelings/thoughts) as: "mental or fysical challenges you can not complete with a normal amount of effort or within normal parameters of your body"
-> That definition of mine fits almost any effort a patient with ME/CFS does many times a day such as walking a mile, 10-yard, brushing theets, speaking, watching tele, remembering his own name... depending on the level of the disease.
-> Tens of times a day actions can not be complete within normal efforts. In my definition this acts as a strong stressor. Extra strong efforts are required to complete the actions. Adrenaline can give the temporal needed boost if you are really willing to complete the effort. Many ME/CFS/Fibro patient are of the enduring type and do want to complete the action. Large amounts of adrenaline are produced to enable the body or mind to do so. While adrenaline is short-lived, the aggitation caused by the adrenaline release causes mental stress and thus new adrenaline to be released. As a result, large parts of day and night the body is flushed by adrenaline.
-> Adrenaline, produced by these frequent stresses is a cause of POTS and dysautonomia.
For the effect of "efforts" on adrenaline levels see also
https://en.wikipedia.org/wiki/Epinephrine
-> "Endogenous plasma epinephrine concentrations in resting adults are normally less than 10 ng/L, but may increase by 10-fold during exercise and by 50-fold or more during times of stress." If adrenaline/epinephrine can increase that much because of exercise and stress in healthy people, imaging what it might do in us.
Regarding the effect of sugar and hydrocarbs: I noticed that in my body adrenaline witouth sufficient sugar/glucose acts quite different from adrenaline with sufficient amounts of sugar. Also, as earlier mentioned: adrenaline together with insulin is one of two hormones that dominate glucose biochemistry.
Summarised:
-> All of the above may well be wrong; I am not an MD, just a patient in disparate need of improvement.
-> If parts of it were to be true, I do not believe adrenaline is the cause from ME/CFS. It looks more like a way to cope with the disease.
-> As the cost of running on adrenaline can be very high and more adrenaline could be produced the longer and more intense an effort is, it could in part be responsible for PEM when pushing the limits too far.
-> Adrenaline is more for emergencies. It changes a healthy persons judgement into something like "yes, I can lift this car on my own, why would I doubt about it?". It could as well be responsible for the very often overestimation of capabilities people with ME/CFS have and that leads them to overexcerting time and again.
-> While Adrenaline sounds in my vision as an evildoer, I doubt it is. It has a good and a pretty bad side. Maybe neither non of it nor too much of it does any good and finding a balance may be the better option.
Kind regards,
Jurgen
So far I can only handle 2mg of LDN due to sleep issues and a loss of appetite, but I am going to try and increase to 3mg again next week. I've been on it for 8 weeks and the most noticeable effect is my mood is better. I also started the Valtrex with Dr. Montoya in Dec. I'm going to read through all these comments but would love to hear your results as well! I didn't expect a quick miracle but so far I am optimistic and have seen some baby step improvements with stamina. I think it will be a slow, steady process.
