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Orthostatic Intolerance

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Andrew, Feb 24, 2012.

  1. Andrew

    Andrew Senior Member

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    I can understand why sitting or standing makes me dizzy. The idea being that the blood is not pumped to the upper part of my body. But why does it also make me feel sicker? I feel more fluish, more achy. What are the theories that have been proposed for this?
  2. fla

    fla Senior Member

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    That's a very good question Andrew. Since most of the research seems to point to an abnormal immune response making us sick, why would less blood reaching the upper body increase that abnormal immune response? This paper even suggests that for some, low blood flow could be the cause of M.E..."A small heart appears to be related to the genesis of OI and CFS via both cerebral and systemic hypoperfusion."

    My hypothesis would be that the neuro-immune disease M.E. is neurological first. Something (like low blood flow?) causes the nervous system to malfunction producing bad instructions to the immune system thus becoming neuro-immune.
  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Andrew in my case, my POTS (Dysautonomia) is caused by Autonomic Neuropathy. With the breakdown of the autonomic nervous system, most every system is involved. So breathing, digestion, circulation, severe nausea, no more sweating or too much, tachycardia, chest pain, dizziness, lightheadedness, vertigo, high or low bp, temperature regulation is a big part, fainting, blood pooling and turning purple, etc. Nothing works in the body since almost every part is affected.

    A number of illnesses can cause POTS. The reason needs to be found to begin to heal.

    There is no wonder it makes people so very ill. Some people are less ill if they have less of a total breakdown of the ANS. But, I had it all. Unable to function. Over three years my doctors and I have been able to treat the nerves that cause it for me. Healing the nerves all over the body like the heart, muscles, etc.Nerves heal slowly and there are a lot of things they require.
  4. Annesse

    Annesse Senior Member

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    I think there is a common denominator between all of these symptoms. Lack of pancreatic enzymes called proteases. Under the thread "Severe muscle wasting.." I just posted how a lack of these enzymes would lead to muscle wasting, lack of ATP, glucose hypometabolism, brain fog, and excercise intolerance. I alsoposted a study that shows tumor necrosis factor is dysregulated in CFS. Tumor necrosis factor is a part of your immune system. Tumor necrosis factor causes sore throat, flu-like feelings, fever etc. These same enzymes, proteases, are what are responsible in the body for regulating tumor necrosis factor.

    A lack of these enzymes would also lead to dysautonomia or a dysfunction in the autonomic nervous system. As the study I posted showed on the "Severe muscle wasting" thread CFS patients lack phenylalanine. Phenylalanine comes from high protein foods. That is what proteases do, they break down high protein foods into amino acids like phenylalanine.

    There are two neurotransmitters that regulate the autonomic nervous system. They are adrenaline and acetylcholine. Acetylcholine comes from choline and choline comes from B12. I posted a study previously that shows protease are essential for the metabolism of vitamin B12. The other neurotransmitter is adrenaline. Adrenaline is derived from phenylalanine. So without these enzymes, you would not be able to regulate your autonomic nervous system, nor would you be able to regulate tumor necrosis factor.
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Yes, there can be various reasons it can happen. Usually there are no muscle problems. My supplements are the only reason I am recovering and the nerves are healing. Autonomic neuropathy is a hard one. When it is caused by Lupus and other illnesses like that, then they can be addressed and people get better pretty quickly.
  6. Annesse

    Annesse Senior Member

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    Hi Sally, I am sure you know far more about about your condition than I do, and you may have already considered this, but if one of the ANS neurotransmitters is derived from B12 and a lack of B12 would lead to autonomic dysfunction, could the lack of B12 also be responsible for your neuropathy? As the following information states ,the link between peripheral neuropathy and B12 has been well established.
    http://peripheralneuropathycenter.uchicago.edu/learnaboutpn/typesofpn/systemic/nutrition.shtml

    A lack of B12 would also lead to elevated levels of homocysteine. Homocysteine is also linked to neuropathy.

    http://www.ncbi.nlm.nih.gov/pubmed/11318838
    In the study, the authors suggested that this association could be explained either by direct cytotoxic effects on nerve function, or by small vessel occlusions caused by endothelial damage. This results in a loss of blood supply to nerve fibers, a pathogenetic mechanism of peripheral neuropathy.
  7. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Oh no, I have taken b12 for years. That is just one problem that can cause neuropathies. But no, I have a great integrative doctor that has me on excellent supplements. I get lots of blood testing twice a year also. I have done research, bought books, even med. books. I have been so ill with this that I was able to research and assist my doctors with ideas. We have worked together to get me where I am now. It is so wonderful.

    Nerves need Benfotiamine, B12 and all b's, Large amounts of a good Alpha Lipoic Acid, L carnitine, fish oil, NAC, foods and supplements with antioxidents(C and E as well as the Alpha Lipoic Acid) to keep the nerves healthy, no or low sugar in the diet, no gluten, high oxygen from gentle exercise as you breathe deeply, and you have to stay away from toxins and chemicals. Many presciptions can cause nerve problems. Nerves are sensitive.
  8. adreno

    adreno 3% neanderthal

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    Choline doesn't come from B12. Choline comes from choline. It's a nutrient, found in foods.

    TNF-Alpha is regulated by many factors, including hormones and neurotransmitters. I doubt proteases have any serious influence.

    Epinephrine is synthesized from phenylalanine, but there is no reason to believe that epinephrine is depleted in POTS. In fact, in many cases, epinephrine levels are much too high. That's why it's called hyperadrenergic POTS.
    Sallysblooms likes this.
  9. Sparrow

    Sparrow Senior Member

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    There are three theories I've come across so far.

    One is that the volume of blood available for circulation when standing at times like that is so low that it is severe enough to cause a state of borderline organ failure (this is Dr. Myhill's take on it, I believe). In addition, cells deprived of oxygen and nutrients die, and all the dead cells make you feel flu-like (or something like that - I believe it was likened to what chemotherapy patients go through - we show similar levels of cell-free DNA indicating cell death).

    One was that before you actually hit bottom at those times, your heart is trying it's very best to keep up (and keep you up!) as long as possible, and uses up all kinds of extra energy and resources in that attempt. So the flu-like effects, etc. are for reasons similar to what they would be if you were doing any other kind of exercise (either low body stores of energy in general, or odd lactic acid production, or something else...haven't yet seen anything definitive on what exactly post exertional exhaustion is, but whatever it is that's what would be happening).

    And damned if I haven't totally forgotten the third one I was going to mention. I hate brain issues sometimes.

    And by sometimes, I mean all the time.

    And by all the time, I mean now. :)

    Anyway, either or both of those theories seem to make sense to me from what I've observed in myself. No blood supply = bad things for the body on lots of different fronts. So the lightheadedness is the observable symptom from lacking blood to the brain. The other symptoms are from lacking blood to various other body parts.
  10. ixchelkali

    ixchelkali Senior Member

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    Just hypothesizing in my own layman's terms, I'm thinking maybe not getting enough fuel pumped to all of the body's cells could make us feel pretty sick. Or that maybe a part of the brain that controls autonomic functions (like the hypothalamus) isn't getting enough energy to work properly. Or maybe it's that whatever it is that gives us that flu-like feeling also makes the orthostatic intolerance worse, so they happen simultaneously.

    I have noticed that people who get orthostatic hypotension from other causes, or who just have hypotension of any kind, feel like crap generally.
  11. Andrew

    Andrew Senior Member

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    Well, the POTS thing seems to make sense. I really need to sit down and analyze what exactly I mean by feeling sicker. What is the sensation, and where. One thing I notice is a feeling of pressure in the front of my head. I think this reminds me of sinus pressure when I used to get colds. And a very uncomfortable feeling throughout my body. I'm not sure how to describe the discomfort, though. So this reminds me of me of the body feeling I got right before getting colds, and during them. I'd say it's an achy feeling, but it seems to be more than that.

    I remember a few years ago feeling extra awful, and it turned out my heart was beating fast. Not pounding, though. I was unaware it was beating fast until someone took my pulse.

    Odd thing about doctor's offices these days. They don't take your pulse anymore. I had to ask the time they discovered it. And then the nurse said she doesn't bother to carry a watch. So we had to use mine.
  12. Annesse

    Annesse Senior Member

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    Most choline in foods is found in the form of phosphatidylcholine. Phosphatidylcholine, also known as lecithin, contains about 13% choline by weight. Choline is also synthesized in the body. Here is the sequence.

    Choline present in tissues has two origins: exogenous, in food, and endogenous, by biosynthesis from glycine through many steps: serine, ethanolamine, phosphatidyl-ethanolamine, phosphatidyl-choline and choline. The trimethylation of phosphatidyl-ethanolamine needs the presence of vitamin B12, folic acid and methionine.

    There is evidence that it is the "synthesized" choline that is used by the body to make acetylcholine. I focused on the necessity of B12 to synthesize choline for two reasons. First, the connection to neuropathy and second, POTS can mimic a B12 deficiency.
    http://www.ncbi.nlm.nih.gov/pubmed/12036186


    Here is a study that states protease (pancreatic enzymes) are "key regulators" of the inflammatory response. Here is a quote from the study.

    " However, studies over the past several years indicate that neutrophil serine proteases may also be key regulators of the inflammatory response. Neutrophil serine proteases specifically process and release chemokines, cytokines, and growth factors, thus modulating their biological activity. In addition, neutrophil serine proteases activate and shed specific cell surface receptors, which can ultimately prolong or terminate cytokine-induced responses." Tumor necrosis factor is a cytokine.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440796/

    The neurotransmitters that regulate the autonomic nervous system are derived from compounds that studies show CFS patients lack.The lack of these neurotransmitters would lead to dysautonomia. POTS is a condition of dysautonomia. Adrenaline (one of the neurotransmittes) is derived from phenylalanine. I just posted a study on the thread, "muscle wasting" to show that CFS patients lack phenylalanine. I have posted additional studies that confirm this as well. Dysautonomia would cause your ANS to over-react at times and at other times to under-react.
  13. Ocean

    Ocean Senior Member

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    Annesee, I replied on the other thread too, but do you know what can be done about this problem?
  14. adreno

    adreno 3% neanderthal

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    I suggest you educate yourself on the different types of POTS. Here is something to start you off:

    "We often measure plasma norepinephrine levels in both a supine and standing position (at least 15 minutes in each position prior to blood sampling). The supine norepinephrine is often high normal in patients with POTS, while the upright norepinephrine is usually elevated (>600 pg/ml), a reflection of the exaggerated neural sympathetic tone that is present in these patients while upright."

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

    I believe that's the end of your theory right there. High levels of norepinephrine can not be explained by a lack of phenylalanine.
    ahimsa likes this.
  15. Annesse

    Annesse Senior Member

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    Hi Adreno,

    I did not say the body had no adrenaline. I said it had insufficient amounts to properly regulate the ANS. There are many different factors that come into play in dysautonomia and POTS. Like I said, the ANS will overreact at times. I think another regulator,nitric oxide,and its involvement in POTS is a good example. Some studies show too much and some studies show too little nitric oxide is available. The problem is in the regulation. Also, vitamin B12 is responsible in the body for degrading nitric oxide. Without B12, there would be an excess of nitric oxide. Another factor is there are different types of nitric oxide being expressed. For instance, endothelial nitric oxide is immediately turned into superoxide because of interference with homocysteine. In other words, the release, regulation and degradation of our bodies neurotransmitters and molecules is not so cut and dry as you might assume.

    Here is a study that shows the interplay between nitric oxide and acetylcholine in POTS. Another factor that would need to be taken into consideration.

    http://ajpheart.physiology.org/content/early/2011/05/31/ajpheart.00171.2011.abstract
  16. adreno

    adreno 3% neanderthal

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    I am well aware of the many factors involved in POTS, including nitric oxide and acetylcholine. I never said there weren't, so I don't know were you're getting this assumption from.

    But as I said, you have no evidence that dysautonomia is caused by a lack of phenylalanine or choline. In fact, if these nutrients were missing, the patients could not produce high levels of norepinephrine or acetylcholine. It would also be very easy to treat dysautonomia if this was the case, all we would have to do is supply those nutrients to the patients and they should be fine. I suspect this is not the case, as many have tried these supplements without success.

    B12 deficiency is another matter, there are studies showing that at least some cases of dysautonomia are caused by this.
    ahimsa likes this.
  17. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Andrew, your doctor doesn't take a pulse? My docs take it with the bp reading. That is all taken and the oxygen reading from the fingers.

    Yes, really pay attention to exactly how you feel and try to explain it all. Might help make sense of it all. Hopefully! :D

    Also, do you have a bp machine? That is important to see what the bp and pulse are doing when you sit, lie down and stand.
  18. ixchelkali

    ixchelkali Senior Member

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    The digital blood pressure machines where I go also record the pulse rate, so they don't count the pulse manually any more. That might be too bad, because they can learn things from the quality of the pulse, not just the rate, like if it's thready, weak, pounding, or irregular. Maybe another case where reliance on technology can lead to missing diagnostic clues.
  19. Andrew

    Andrew Senior Member

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    I don't have one, or even know what kind to get. Let along know how to read it.
  20. Valentijn

    Valentijn Activity Level: 3

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    I have an Omron self-inflating upper arm blood pressure monitor. It seems pretty consistent, and it's the same brand one of my doctors uses. Reading it is very easy, as it flashes up three numbers (systolic, diastolic, pulse). The first two are the BP reading, and the third is how fast your heart rate is.

    I'm overweight, so I got the large cuff to go with it, to make sure I get an accurate reading.

    The only thing I'd do differently is get one that's got an AC adapter to plug into the wall, instead of having to use batteries.

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