I found a new website that has all sorts of good info about POTS: http://www.potsplace.com/
If you are interested in reading any more about it, go there. On the left, you will see a menu with symptoms, causes, what to avoid, etc.
I will highlight some of the stuff here that has kind of set off a light bulb in my head.
Symptoms
Lightheadedness
Fainting or near fainting 60.5% of patients report near fainting
Generalized weakness
Shortness of breath 2
Chest discomfort and/or pain
Loss of sweating
Excessive sweating (Loss of sweating and excessive sweating are more common in patients with elevated norepinephrine levels)
Delayed gastric emptying (23.7% of patients report gastrointestinal complaints, including bloating)
Bloating after meals
Nausea
Abdominal pain
Fatigue (which can be disabling)
Sleep disorders (can cause unrefreshing sleep and an increased need for sleep)
Dizziness
Tachycardia
Exercise intolerance
Intolerance to heat
Feeling cold all over
Noise sensitivity
Light Sensitivity
Easily over-stimulated
Feeling full quickly
Feeling "wired"
Food allergies/sensitivities (some foods seem to make symptoms worse)
Weight loss or gain
*The symptoms above are taken from a much bigger list, but all ones I have or may have experienced. Some are making that light bulb flash pretty bright. During the week I usually eat pretty small meals, not usually more than 200-300 calories at a time. On the weekends I will eat dinner out from time to time and usually end up with a stomach ache afterwards. I am always cold too...but that may just be because I am a girl. I don't necessarily see that getting any better. Sleep! Ding! Ding! Ding! I went through a long period before all this where I could not sleep at all. About the time all this set in, I was noticing that I was sleeping so much better, and was grateful, but then at times I still did not feel rested after 8-9 solid hours of sleep. Hopefully that is something that gets better after all of this.
Causes
The site lists several potential medical causes for POTS, none of which really seem to fit me, except for this possibility:
"Viruses are thought to be the provoking factor in approximately 50% of POTS patients. There are reports of dysautonomia occurring after the Epstein-Barr virus. Viruses may directly affect the autonomic nervous system or lead to an immune pathogenesis. Roughly one-half of post-viral POTS patients will make a good practical recovery over a 2-5 year period."
Epstein-Barr is mono. I had mono in June 2007, but did not see serious issues until October 2008, immediately after running the St. George marathon. So who knows. I have also read "trauma" can cause POTS. I guess a marathon could easily be considered trauma. Point is there are several possibilities of when/why I could have got it, but I doubt I will ever be able to pinpoint exactly it was. I have read pregnancy causes it too - that is one possibility I can certainly rule out!
I will post soon with "what helps" and "what to avoid."
If you are interested in reading any more about it, go there. On the left, you will see a menu with symptoms, causes, what to avoid, etc.
I will highlight some of the stuff here that has kind of set off a light bulb in my head.
Symptoms
Lightheadedness
Fainting or near fainting 60.5% of patients report near fainting
Generalized weakness
Shortness of breath 2
Chest discomfort and/or pain
Loss of sweating
Excessive sweating (Loss of sweating and excessive sweating are more common in patients with elevated norepinephrine levels)
Delayed gastric emptying (23.7% of patients report gastrointestinal complaints, including bloating)
Bloating after meals
Nausea
Abdominal pain
Fatigue (which can be disabling)
Sleep disorders (can cause unrefreshing sleep and an increased need for sleep)
Dizziness
Tachycardia
Exercise intolerance
Intolerance to heat
Feeling cold all over
Noise sensitivity
Light Sensitivity
Easily over-stimulated
Feeling full quickly
Feeling "wired"
Food allergies/sensitivities (some foods seem to make symptoms worse)
Weight loss or gain
*The symptoms above are taken from a much bigger list, but all ones I have or may have experienced. Some are making that light bulb flash pretty bright. During the week I usually eat pretty small meals, not usually more than 200-300 calories at a time. On the weekends I will eat dinner out from time to time and usually end up with a stomach ache afterwards. I am always cold too...but that may just be because I am a girl. I don't necessarily see that getting any better. Sleep! Ding! Ding! Ding! I went through a long period before all this where I could not sleep at all. About the time all this set in, I was noticing that I was sleeping so much better, and was grateful, but then at times I still did not feel rested after 8-9 solid hours of sleep. Hopefully that is something that gets better after all of this.
Causes
The site lists several potential medical causes for POTS, none of which really seem to fit me, except for this possibility:
"Viruses are thought to be the provoking factor in approximately 50% of POTS patients. There are reports of dysautonomia occurring after the Epstein-Barr virus. Viruses may directly affect the autonomic nervous system or lead to an immune pathogenesis. Roughly one-half of post-viral POTS patients will make a good practical recovery over a 2-5 year period."
Epstein-Barr is mono. I had mono in June 2007, but did not see serious issues until October 2008, immediately after running the St. George marathon. So who knows. I have also read "trauma" can cause POTS. I guess a marathon could easily be considered trauma. Point is there are several possibilities of when/why I could have got it, but I doubt I will ever be able to pinpoint exactly it was. I have read pregnancy causes it too - that is one possibility I can certainly rule out!
I will post soon with "what helps" and "what to avoid."
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