A fresh start (1)

Hey there everyone :)
A while ago I registered on this forum,introduced myself in the introduction forum, and quickly found out about myself that I really have this hunger for sharing what I experience. I have been feeling so lonely through the years. When I am here, words keep coming and coming, because for the first time I feel surrounded by people that really get it. Which is such a relief.
So I have become a lengthy writer quite quickly, and I really want to thank the people that where following it for having the patience, and for all the amazing and useful replies. It 'really' has helped me forward so much already.
I thought that by now, it is maybe more fitting to continue here, in a blog, and leave the introduction forum :) lol, sorry for being glued to that thread for so long.

So, to make a summary of what has been going on:
When I came here, I had no idea whatsoever about what was wrong with me, I was experiencing symptoms for the past 16 years, with no diagnosis. Doctors did not find anything wrong with me.
Based on what I had written down, people here guided me towards checking and measuring blood pressure and heart rate. I started doing that and quickly found out that things where a bit off track there.
I had the extreme luck, that I had the opportunity to go to a really good doctor, specialized in things like this. For the first time in these 16 years I found myself sitting in a room with a doctor, that really listened to me and took me serious. He ordered a tilt table test, which gave a result.
The result is POTS. There was a raise in heart rate, not the most extreme compared to some of the stories on the internet, but still too much.
My blood pressure rose, while standing, and while supine the pulse pressure was narrow. Which is something that I see at home a lot also (narrow when standing, and often when supine).
The doctor prescribed fludrocortisone, which I have been taking for about 12 days now. In about two weeks I will speak to him again on the phone.

Questions that still run through my mind:
- I worry about about my adrenals, as in the past a natural doctor once tested my cortisol levels, which where really on the low side. Now I get medication that replaces Aldosterone, which then could also be on the low side? Not sure if its true, but if it is, then I guess my adrenals make less of both hormones then they should.
Could this be causing POTS like symptoms? The adrenals have not been tested yet in a hospital.

- It seems that my body makes a lot of fight/flight hormones when standing, it completely feels like that. As if I had liters of coffee. It was not tested during the tilt table test but I wonder if its important to know. Now that I take fludrocortisone, my body feels much more relaxed, less on the edge. Which feels absolutely wonderful!
I now know that my physical feeling of stress, is truly physical. Not depression, as was often suggested by doctors. I already knew I was not at all depressed, but through the years you start doubting your own ability to judge your own feelings. Odd but true.
I now know that its physical, but would like to fully understand the mechanism, and I would like to know for sure if I am following the right thread. Could this lean towards some form of hyperadrenic pots? Can that go together with low Cortisol and Aldosterone?

- Could there be a heart issue? If the narrow pulse pressure is caused by a heart problem, it would be good to know that.

- Before I started with the Fludrocortisone, my body was constantly having little tiny spasms everywhere. Too tiny to see, but everywhere. It feels like the twitch in your eye, but only one time, and in other places. Like in the legs, hands, stomach, face, neck (the neck very often) etc. Not painful, but annoying because it sometimes interfered with doing things and caused me to be clumsy. A sudden twitch in the fingers can cause a letter to be messed up, a sudden twitch in your elbow/lower arm can cause the coffee to spill etc.
Its 90% gone now, I wonder about what the cause was.

So that is where I am now, and although I have all these questions, I still feel really happy and grateful for my freshly found knowledge. Knowledge about my body, and what I can do to lighten the burden. I can now 'work' on improving it, its not only a search anymore, its also improvement. That is why it feels like a fresh start.

I just wanted to make a 'first' blog, a starting point, and then continue writing through time.
I hope it is ok, it really feels good to write in a place like this, but I hope I will not cause too much boredom :)

Greetings to all of you!


Hi. It's pretty cathartic when you finally get a measurable symptom! Finally answers! Similar to my story minus the 'really good doctor'. I'm still looking for one over the rainbow like they're some sort of pot o gold. I'm fairly new to this but I know that POTS is part of a dysautonomia spectrum. Lots of things go wonky including the endocrine system. The benign ticks and tremors are common and are all part of the same collection of symptoms. I get those all over - like little pulses or flutters. There is a type of POTS called hydrenergic POTS which involves the adrenals producing a stress response which causes shakiness. Some people do have heart issues like SVT and long qt and need pacemakers. Most Potsies see a cardiologist and a neuro and, depending on symptoms, an endocrinologist or rheumy.
The long posts people make are not so much boring as tiring and some of the more symptomy pwCFS/ME find it hard to focus for that long because of brain fog and eye muscle fatigue.

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