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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. S

    POTS vs NMH in people with ME/CFS

    I have no interest in fighting, and assume that we all have brain fog going on, as well as other issues. I did know this information, and the way it came across seemed patronizing. I was trying to get the information in quotations but had a difficult time with cutting and pasting on an ipad...
  2. S

    POTS vs NMH in people with ME/CFS

    No one is answering your question because there is not any data on it.
  3. S

    POTS vs NMH in people with ME/CFS

    It is not what was said but the way it was said. I do not care to be talked to like I did not finish elementary school. The text for a quote should go in between the "open quote" and "close quote" tags. They open and close tags should look like this [ quote ] and [ / quote ] -- but without...
  4. S

    POTS vs NMH in people with ME/CFS

    This is extremely condescending. I am highly educated and highly intelligent, just extremely ill.
  5. S

    POTS vs NMH in people with ME/CFS

    Wow...fabulous.
  6. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Here's another link as well..http://www.totaleyecare.com/ocular-complication-ehlers-danlos-syndrome-1.htm
  7. S

    POTS vs NMH in people with ME/CFS

    I did nOt mean to offend you, and I was not implying you we're ignoring research. I was just ex,aiming why I had not taken a guess. You can not get an nmh diagnosis without ttt. If the doctor does not order it, the patient does not push for it, then there is probably a population on here...
  8. S

    POTS vs NMH in people with ME/CFS

    At any rate, if doctors are relying on POTS, or fainting spells, to identify patients who have some kind of Orthostatic Intolerance then they are missing patients like me. I have no idea how many patients that might be. Maybe it's a very small number, who knows? Totally agree.
  9. S

    POTS vs NMH in people with ME/CFS

    I think we are saying the same thing here. I was just saying that I had not responded to the original question, but there was no research on it that I could find. I came to my cardiologist with an abstract and a history of fainting. He really did not want to run the ttt, as I described...
  10. S

    POTS vs NMH in people with ME/CFS

    I do understand that patients can have either an extreme drop in blood pressure, or an increase in heart rate, or both. But I'm not sure I agree with a simple statement that each affects only one part of the autonomic system. I think there's more interconnection between these two symptoms...
  11. S

    POTS vs NMH in people with ME/CFS

  12. S

    POTS vs NMH in people with ME/CFS

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    POTS vs NMH in people with ME/CFS

    What are NMH and POTS? Neurally mediated hypotension refers to a drop in blood pressure that occurs after being upright. We define NMH by a drop in systolic BP of 25 mm Hg (compared to the BP measured when the person is lying flat) during standing or upright tilt table testing. Although NMH may...
  14. S

    POTS vs NMH in people with ME/CFS

    I had my first tat in 1995 as well. This is what I understand the difference to be. You can have both nmh and pots... POTS is often accompanied by vasovagal syncope, also called "neurally mediated hypotension" (NMH) or "neurocardiogenic syncope" (NCS). Vasovagal syncope is a fainting reflex...
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    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    http://www.cfids.org/webinar/slides-090110.pdf I tried to copy this. This is updated research by Rowe associating eds, cfids, and OI (pots/nmh). He has three coven centric circles. They each have one diagnosis and overlap. You could have one diagnoses alone, two or all three. It will not...
  16. S

    POTS vs NMH in people with ME/CFS

    They say,soy nmh persons have learned when they get symptomatic md lie down, sit or eat something with salt. They adapt. Some do fait, especially if you have no option of sitting I.e. standing in long lines etc.
  17. S

    POTS vs NMH in people with ME/CFS

    I had Alan h1 n1 shot years ago, when it was restricted and hard to get. I passed out and they could not find my Bp....anyone else have a reaction like tis to meds?
  18. S

    POTS vs NMH in people with ME/CFS

    Did you have a tilt table? Pots does not cause fainting. I faint.
  19. S

    POTS vs NMH in people with ME/CFS

    I have nmh per tilt table test... Ehow has this information on nmh. Symptoms I also have rapid heart rate ...does that mean I have both pots and nmh? Note it is mislabeled as hypertension.....lol The primary symptoms of neurally mediated hypotension are a quickening of the heart rate...
  20. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Nike has compression shorts. I ordered some for my daughter.
  21. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Dry needling helps my pain, but like everything, it is a temporary relief. Similar to acupuncture except it goes into the muscles. A pt does it.
  22. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Symptoms Of Orthostatic Intolerance: Lightheadedness, Dyspnea, Syncope, Chest Discomfort, Diminished concentration, Palpitations, Headache, Tremulousness, Blurred vision, Anxiety, Fatigue, Nausea, Exercise intolerance, Nocturia Working hypothesis: Connective tissue laxity in blood vessels allows...
  23. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    http://www.ednf.org/images/2011conference/Handouts/EDNF_2011_Rowe_Fatigue.pptxSymptoms Of Orthostatic Intolerance: Lightheadedness, Dyspnea, Syncope, Chest Discomfort, Diminished concentration, Palpitations, Headache, Tremulousness, Blurred vision, Anxiety, Fatigue, Nausea, Exercise intolerance...
  24. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    https://www.edsers.com/ Totally agree that wiki is not comprehensive enough...
  25. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    I respectfully disagree. The evidence shows,there is not necessarily a cause but a link.
  26. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Early diagnosis is key in preventing the exacerbation of the afflicted body's progression towards premature deterioration and ultimate enhancement of the patient's lifespan and overall quality of life. Although all types of Ehlers-Danlos syndrome affect the joints and many also affect the...
  27. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

  28. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Yes, I agree with you. I have grand mal seizures and that affects the neurological issues as well....
  29. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    I am type, 1 and 11 as well as 111. A rheumatologist can also diagnose hyper mobility type. Bring literature on Beighton scale..
  30. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    It's not a causation issue. There are overlapping symptoms. Some people may have both. Some may have been misdiagnoses.