Hi
thanks for your answers. The thing is, that I have no doctor, who would and could help me with this. It happens so often that doctors call me crazy because EDS can´t be seen in X-rays. They are just overextended in treating all my symptoms and I don´t want that my family doctor also starts to think, that I am crazy.
So far I am treating myself as good as I can. Through internet I found out what the diamox does. It helps getting to much water out of the body right? Having no doctor who would give it to me just for a try, I was trying to find an alternativ, which can be bought freely. I found a herbal medication, which shall do the same thing (of course not as effective as diamox it would probably do). I just don´t know if it would also be effective to the hydrocephalus. What do you think? I´m trying it right now, but started only 2 days ago.
I also found some information about my head circumference, when I was a baby. I have a graph which compares my results with what is average. When I was three month old it was slightly increased than what is considered normal for both, boys and girls. Every other result would fit to the average in boys, which is a little bit more than in girls. So compared to the average in girls it was slightly more. But to me it doesn´t seems unnormal and my doctors would definitely think like that. What do you think?
Dr D. can you answer me another question. I take an ACE – Inhibitor to control my blood pressure and prevent problems with my vessels, because most of the time my BP was to hight. Last monday I forgot to take it and I got this horrible severe head age just like I explained in my first post, but my blood pressure wasn´t to high, so this can´t be the reason for the head age. It was worse than ever before. The Pain went away soon after I took the ACE – Inhibitor. Does an ACE-Inhibitor also has an effect on the pressure of the brain? This information would be very helpful.
I´m also wondering because you say, we should sleep on our sides. Actually it not only happens when I`m laying on my back, but also when I lay on my sides. I remember another thing ( I´m just trying to complete my puzzle ). It happend once, when I was paralyzed that my muscles didn´t feel to relaxed for moving, actually they felt totaly tensed, almost like a spasm, which made me completely stiff. When I really woke up I was so badly tiered. Do you know that too?
It´s also strange that it always happens while taking a short nap in the afternoon, but it never happened at night.
Most of my symptoms are way better or almost gone, when I´m not stressed. When I am psychically or physically stressed I get this horrible head age, feeling sick, weak, having nausea and pressure at my chest, so I immediately need rest. Doctors say I´m just not trained well, because I can´t run with EDS. I´m just not fit enough. I´m not sure about that.
This is so complicated, oh my goodness.