Ahimsa,
I am not at all sure what type of POTS/OI/NMH they were referring to. The EDS forum posters just said they had trouble standing, fainting, headaches, sensitivity to light, sound, multiple sensitivies. And the issues resolved after starting Diamox.
One woman said her daughter was in bed for many years, with the room blackened due to light issues, weakness, dysautonomia, and only recovered when she started using Diamox. The daughter is back to normal. According to the EDS people, eating salt, Florinef are the exact opposite of what you need. Your brain needs less fluid; not more.
EDS comes in many shapes and sizes. Sometimes people can have very powerful muscles, but have weak connective tissues in critical areas. So it is impossible to completely diagnose "EDS" in one form of the other. So you could have a similar situation. It's very difficult to say with certainty who has EDS.
BTW The EDS docs also say that if you have had MRI results that show "mild brain atrophy" that is actually a bunch of nonsense. The "brain shrinkage" they claim they are seeing is actually just the brain fluid squishing the brain to a smaller size. Out of habit, the radiologist might want to tell you it's just "age related atrophy" or some baloney. Ask your doc about this; it could be an importnat indicator. Also, ask if you have any evidence of Empty Sella Syndrom on your MRI. That is rock solid evidence you have too much pressure in your cranium.
Anyway, Ahimsa, the drug Diamox is harmless, especially if you go on two-week trial. Take a small dose at night, and if your symptoms start to abate you will know. And the drug is very cheap and non-narcotic. Easy to get. Good luck.
I am not at all sure what type of POTS/OI/NMH they were referring to. The EDS forum posters just said they had trouble standing, fainting, headaches, sensitivity to light, sound, multiple sensitivies. And the issues resolved after starting Diamox.
One woman said her daughter was in bed for many years, with the room blackened due to light issues, weakness, dysautonomia, and only recovered when she started using Diamox. The daughter is back to normal. According to the EDS people, eating salt, Florinef are the exact opposite of what you need. Your brain needs less fluid; not more.
EDS comes in many shapes and sizes. Sometimes people can have very powerful muscles, but have weak connective tissues in critical areas. So it is impossible to completely diagnose "EDS" in one form of the other. So you could have a similar situation. It's very difficult to say with certainty who has EDS.
BTW The EDS docs also say that if you have had MRI results that show "mild brain atrophy" that is actually a bunch of nonsense. The "brain shrinkage" they claim they are seeing is actually just the brain fluid squishing the brain to a smaller size. Out of habit, the radiologist might want to tell you it's just "age related atrophy" or some baloney. Ask your doc about this; it could be an importnat indicator. Also, ask if you have any evidence of Empty Sella Syndrom on your MRI. That is rock solid evidence you have too much pressure in your cranium.
Anyway, Ahimsa, the drug Diamox is harmless, especially if you go on two-week trial. Take a small dose at night, and if your symptoms start to abate you will know. And the drug is very cheap and non-narcotic. Easy to get. Good luck.