Results and dead end.

Blog entry posted by JuliaMaple, Feb 24, 2017.

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.
  1. Mary
    @JuliaMaple - I think it might be more effective if you did a post on the forums about this issue. There are many people who are familiar with POTS and fludrocortisone and know the things you should do or be aware of while taking it. I don't have any experience here, but, for example, I did read that it can cause low potassium, among other things, and it doesn't seem right that your doctor wants to wait 3 months to check your potassium. It seems way too long to me, but this is one reason why I think you should do a post on the regular forum under "treatment and therapy" section, which has a separate section about orthostatic intolerance and POTS. I've also read about people taking salt while taking the fludrocortisone, but again I don't have experience here but many on this board do and if the title of your post referred to POTS and fludrocortisone, in the appropriate section of the forums, I think you will be much more likely to get helpful responses.
    lafarfelue likes this.
  2. ahimsa
    I'm so sorry to hear this.

    I also have chest pains. I've had them off and on (unlike you, not every day) since I first got sick in 1990. I also have Orthostatic Intolerance (NMH & POTS).

    I'm so sorry that you're going through this. I'm taking midodrine, fludrocortisone, salt tablets, extra water (3 liters a day) as well as resting a lot. No cure, too sick to work, but more rest does make symptoms milder.

    And resting means lying back in recliner with my feet up. For me, sitting upright in a chair does not count as resting. Still stresses the autonomic system.

    THIs is a bit rambling, and not a very good answer to your questions, no solution. But in spite of not having much of a good answer I wanted to respond to offer some support.

    I wish you all the best. Sorry that I don;t have much energy to write a more coherent reply.
  3. Dainty
    *hugs*

    I'm so sorry that everything feels so lost and hopeless right now. Many of us find that we can't get answers from doctors, or can't rely on those answers. That's why we post here, and we find out what little things other people find helpful, and experiment on ourselves. And most of us do experience improvement, by trying different things.

    I know it's not much. but it IS hope. Hang in there. You aren't alone.
    alkt, SueJohnPat and Mary like this.