Hey everyone,
I recently got some results.
A 24-hour blood pressure test was done, and a neuro-psychological series of tests where done.
The 24-hour blood pressure test confirmed what was already seen during the tilt table test, it shows POTS 'and' postural intolerance/hypo-tension or whatever name it should be given. It also showed some weird high blood pressure 'spikes' during the night. Odd.. the doctor said, but he thought it must have been a flaw in the device.
The neuro-psychological tests showed that I have no memory problems.
But I do.. have memory problems.
But the real problem is that it all stops here.
My next appointment is in three months, no further testing is being done. I have no idea what to do now, and feel very alone and lost in it.
It is good to know that I do have POTS and postural intolerance, but now what? I am so exhausted every single day that it is making me crazy. I feel like I will go mad slowly because of the lack of growth in live. I cannot build or move forward.. I just stand still forever.
I wish further testing would be done to find out why I have POTS, or what type of POTS it is. And further testing to find out why I have a tendency towards hypo-tension. Why do I have chest-pains every single night and why am I exhausted when I wake up in the morning.
Why do I feel like myself when it is evening?
Is it low cortisol? EDS? or whatever other disease or syndrome? Is it caused by the virus that I carry with me (epstein barr/cytomegalo)
I do not understand why there is no further testing. I want to know if my heart is alright, I have not been seen by a cardiologist. I want to know if it is related to hormones,.. or whatever.
I 'have' to know more, in order to move forward.
The next appointment, which will be in June, will just be to check of the fludrocortisone is not causing low potassium or high blood pressure. That is it.
I feel so lost, there seems to be no hope.
I recently got some results.
A 24-hour blood pressure test was done, and a neuro-psychological series of tests where done.
The 24-hour blood pressure test confirmed what was already seen during the tilt table test, it shows POTS 'and' postural intolerance/hypo-tension or whatever name it should be given. It also showed some weird high blood pressure 'spikes' during the night. Odd.. the doctor said, but he thought it must have been a flaw in the device.
The neuro-psychological tests showed that I have no memory problems.
But I do.. have memory problems.
But the real problem is that it all stops here.
My next appointment is in three months, no further testing is being done. I have no idea what to do now, and feel very alone and lost in it.
It is good to know that I do have POTS and postural intolerance, but now what? I am so exhausted every single day that it is making me crazy. I feel like I will go mad slowly because of the lack of growth in live. I cannot build or move forward.. I just stand still forever.
I wish further testing would be done to find out why I have POTS, or what type of POTS it is. And further testing to find out why I have a tendency towards hypo-tension. Why do I have chest-pains every single night and why am I exhausted when I wake up in the morning.
Why do I feel like myself when it is evening?
Is it low cortisol? EDS? or whatever other disease or syndrome? Is it caused by the virus that I carry with me (epstein barr/cytomegalo)
I do not understand why there is no further testing. I want to know if my heart is alright, I have not been seen by a cardiologist. I want to know if it is related to hormones,.. or whatever.
I 'have' to know more, in order to move forward.
The next appointment, which will be in June, will just be to check of the fludrocortisone is not causing low potassium or high blood pressure. That is it.
I feel so lost, there seems to be no hope.
