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I'm new to this forum, although I've been poking around the DYNET website for several months. I don't have to tell you how wonderful it is to hear other people sharing similar experiences. The "You know you have dysautonomia when..." posts had me laughing out loud. Thank you so much!

I'm in my early 30s, and I was diagnosed with POTS in January. I am able to take care of myself, but going out of the house is a major exertion, and I'm not currently able to work.

Looking back, I had my first glimmers of POTS (fatigue and dizziness) about 20 years ago, but for a long time I thought I was just a bit lazy and unambitious. My freshman year in college, the fatigue got so bad I had to drop out of school, and after a year or so I was diagnosed with CFS. I puttered along with familial support, taking one or two courses at a time, and I did eventually finish my degree.

Then, in the spring of 2004, things got significantly worse, and I started another round of visiting specialists. I was really lucky and saw a few doctors who took my problem seriously and really worked to figure it out. One of them ordered a tilt table test and gave me the POTS diagnosis.

Since then, I've tried Florinef (which didn't do much for me), Inderal (which keeps my heart from racing, but doesn't help the energy), support stockings (which are wonderful, and let me do 2 or 3 errands at once instead of limiting myself to 1 a day), and I've just started Midodrine.

Again, thanks for sharing all the wisdom.


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welcome, quiet spike! thanks for sharing your story :huh:

i hope you continue to find answers and support here on the forum. and of course, i wish you and everyone good health and bright days!



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Thanks for all the welcome messages.

What inspired the name? I'm intrigued...

When I was 14, my brother-in-law thought I was too sweet and harmless for my own good, so he started calling me "Spike" in hopes that I would grow into the name. I did, in my own way. I've kept the nickname, because it does describe one side of my personality, but the "quiet" still describes what most people see.

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Welcome Spike!

Did your name have anything to do with Land Before Time?

Welcome, I hope you find what you need here.:)


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welcome aboard! i took inderal (propanonal) first and it was horrible to me... then midodrine... then florinef... i didn't find much relief but i certainly hope that you do! take care!

dionna :)

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