I've been searching for about a year on what's going on. It's been hell. Now the doctors are saying it's a dysautonomic disorder and take salt and water, but it's not been helping.
My heart/breathing has been extremely messed up and haven't been able to walk for a year 1/2. I'm surprised I'm still alive right now. Thanks guys.
Permalink Reply by Loane on Hi Datiger
I think I have a dysautonomic disorder too. I have lots of symptoms all over my body, particularly chronic fatigue and a paralysed stomach. I am in the process of trying to get a diagnostic. How have the doctors been able to give you this diagnostic? Did you get some medical tests?
Thank you
Loane
Permalink Reply by Datiger on They did a tilt table test on me that was done through a cardiologist.
My B.P. will go down to 100/50 and pulse to 40 while laying down and then when I stand my pulse shoots up to 140 and my B.P. 200/130. It's scary as all hell and haven't been able to stand up or lay down.
I've had plenty of medical tests. The neurologist gave me an EEG test and MRI of the brain and an endocrinologist will check to see if you have a Pheocrhomocytoma. If you want to know more about what I've gone through, you can P.M. me :)
Now I'm over at a doctor said something like an endocrine thing having to do with the brain. I gotta ask him about what he meant by all of it.
One doc saw that my thyroid was low and are doing more adrenal testing, so I feel like there's some progress :) Making me feel more hopeful that I can maybe beat this thing.
Permalink Reply by Mera/Feather Story on I don't understand how salt and water could treat or prevent this at all. Does that make sense to anyone?
Anyway, best wishes to you. Can you describe your breathing issues at all and why you can't walk?
Permalink Reply by Vice Abattoir on From what i can guess, she might have a low blood pressure, or orthostatic hypotension or both, and the salt is to elevate blood pressure and the water in order to avoid water retention due to the salt.
Permalink Reply by Datiger on Yea, exactly. Do you know more about this? I'm interested in getting well. Thanks Vice.
Permalink Reply by Datiger on Since I'm chronically dehydrated. I fill up on electrolytes and they constantly are depleted. I pee every 20 min. The salt hold the fluid in longer, so I can keep hydrated. When you're dehydrated your B.P. will tank.
When I walk my B.P. and pulse go up to high for me to be able to walk and when I lay down my B.P. goes to low. When the B.P. is low I can't breathe and then I get a shot of anxiety/panic/feeling like I'm going to die and then a ton of blood rushes through my body and I start to awaken like there's a relief that my heart is now pumping and it then goes into hyperventilation where I'm breathing a ton and then I try to relax and when I relax the blood pressure starts to tank and my body goes numb where I can't move my body and it's just constant like this through out the day. Sometimes it goes away for a while, but not enough to where I can stand for ten minutes or anything like that.
Permalink Reply by Freshtival
Quote : " Now the doctors are saying it's a dysautonomic disorder and take salt and water "
Here's a video I saw recently that might help get more plant organized sodium in your diet :
http://www.youtube.com/watch?v=JRYvtRsgKJI
I haven't tried this celery power so I don't know how tasty it is. You probably should ask your doctors if adding plant sodium would be a good idea ? The video says the celery powder is very tasty on fresh tomato. The video says to dry the celery at 105 to 110 degrees and I think this is a good idea to help keep the plant enzymes "live".
Permalink Reply by Lydia Mahone 
Permalink Reply by Dennis Price i had this same problem when i was eating faileo. i used to be fatigued, id get dizzy upon standing and my heart was beating fast. i started drinking more water which helped a lil bit but problem still existed. i quit eating meat and became vegan in april. high carb. low fat. my fatigue is gone. my dizziness and rapid heart beat upon standing is gone. (hiked and ran 28 miles last week, ran 23 miles this week so far)
have you been doing the high carb low fat vegan lifestyle for awhile Lydia? If you have you most likely have been getting enough potassium. I'm assuming you eat lots of bananas and or potatoes yeah? If so...
There is also a gene discovered through researching the human gene that if you have the defect you are more prone to heart disease/stroke/hypertension especially at an early age. The gene is called the MTHFR gene. If you have this gene defect, the body cannot convert folic acid into the active form of folic acid. Is your diet high in folic acid too?
Lentils, mature seeds, cooked, boiled, ½ cup – 45%
Spinach, frozen, cooked, boiled, ½ cup – 29%
Great Northern beans, boiled, ½ cup – 23%
Asparagus, boiled, 4 spears – 22%
Avocado, raw, all varieties, sliced, ½ cup – 15%
Spinach, raw, 1 cup – 15%
Papaya, raw, 1 cup cubes – 13%
Corn, sweet, yellow, canned ½ cup – 13%
Broccoli, chopped, frozen, cooked, ½ cup – 13%
Tomato Juice, canned, 1 cup – 12%
Green peas, frozen, boiled, ½ cup – 12%
Orange juice, chilled, includes concentrate, 1 cup – 12%
Peanuts, all types, dry roasted, 1 ounce – 10%
Broccoli, raw, 2 spears (each 5 inches long) – 10%
Strawberries, raw, 1 cup – 10%
Also B12 is important for heart health too? Are you taking a sublingual b12 or a shot? If so, is it the active form methylcobalamin?
If your diet is high in potassium and folic acid (b9) and you take a sublingual form of b-12, maybe you have the mthfr gene where you need to take methylfolate because you lack the enzyme to convert folate to methylfolate.
What happened to me is I started taking an sublingual active form of b12/b9 combo from "seeking health" This was making my heart beat even faster because my body was so low in potassium. I went to HCLF vegan and ate tons of bananas and now when I take this methylfolate/methylcobalamin, my heart doesnt speed up anymore. No more dizziness, no more passing out upon standing. Hope I helped! Please keep in touch. I want to hear of you getting better.
Permalink Reply by Lydia Mahone Permalink Reply by Dennis Price you can get tested for the mthfr gene. I have not yet because I do not have the $. I know you can order the test kit for $195 from mthfr.net. But if you do have the gene defect then a lot of your folic acid is not converting to the active form that your body is supposed to turn it into which means you would have to take the methylfolate aka active folic acid active b9. so yeah eat some lentils and spinach i would say and see if that makes any sort of difference as well. and some oranges, strawberies, and tomatoes too.
Permalink Reply by Dennis Price but yeah ive been at it 5 weeks. if youre feeling tired, you may not be getting enough calories from carbs. when youre eating clean everything is so low in calories, you have to eat a ton. your stomach is probably not used to it. im told it gets better though. your stomach will be handle more over time if you keep plugging away!
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