New Dx

[stampingamy]

Hi. I am new to the forum and to POTS. Well, I think I have had many symptoms for years but was diagnosed a few weeks ago. What led to the diagnosis was having more of the symptoms all happen at once and it appears more intensely. Thankfully my PCP was concerned enough to send me for an MRI, which was fine but was willing to refer me to a neurologist. He pretty quickly zeroed in on what was going on and I had autonomic testing and the TTT. I am doing an EMG in a few weeks to rule out a large fiber involvement in my muscles but it sounds like he doesn't think he will find anything. I have been reading about this and haven't seen anything about it being progressive but think I was diagnosed because things started happening more and more things were happening at once. Is it just that sometimes when you experience symptoms they are worse than others? At times do you find it is worse than it has ever been before?

I don't have a very severe case. I am able to work. It helps that even with my FT job I am really in charge of my own schedule. I am able to exercise. I do get really tired. I have always wondered why in my 20s and 30s I could get 8-9 hours of sleep at night and still want to go to bed at 8pm the next day. Overall I am much better and have more energy in the mornings. As the day wears on I sometimes wear out.

Thanks for your help.

Amy

[hsinthecountry]

Welcome Amy.

My symptoms seem to vary day to day - The more active I am, the more severe the symptoms. Also, deep concentration seems to bring on episodes for me.

I too am able to work, but deal with fatigue daily. Provigil helps a lot with the fatigue.

You will find much useful information here and support also.

Dave

[futurehope]

Welcome, Amy! I was similar to you for years. As a matter of fact, other than 2 isolated discreet incidents of dizziness and/or tachycardia, the only thing I noticed about myself was a lack of stamina whether I exercised or not, and a need for a higher than average amount of sleep.

During my discreet episodes, I had been tested by a cardologist using a holter moniter and a treadmill, and during another bad spell, I was evaluated at the "dizzy" clinic at Hopkins. Neither of the above two doctors gave me a POTS diagnosis.

It wasn't until after menopause, when all symptoms started appearing that a neuro diagnoses me using a TTT.

Anyhow, welcome again!

[Guest dionna]

welcome to the forum!

yes, my symptoms too vary day to day. i am unable to work right now but i am doing better than i was last month. i am a fainter but i have been a few weeks without and actual full syncopal episode, just a few pre-syncopal episodes. i don't know exactly how long i have had POTS but my first symptom was fainting. one day out of blue i just passed out. nothing at all was out of the norm any day before that day--- atleast not that i noticed. then after each faint i would have a migraine and the urge to sleep. well they did a lot of eeg's because they thought it might be seizures. but of course they weren't quit seizure episodes. then slowly i started to notice all the other symptoms and it seems that every month something else will come up and i have something new to add to my long list that has been in existance now for 2 years and just about 3 months. excercising is all i use to do but POTS made me faint everytime i ran or went to the gym so i had to give it up. this month though i started back going to the gym and i do my own small excercises at home as well. i still don't run or do any type of thing like that but i feel so much better about myself. actually i had started to feel ---dare i say normal? but for the past 3 days i have had a migraine that keeps coming back so i am sure i be saying "timber" again here in the next few days if i am not careful.

i am sure that you will have your good days and bad days but i wish you all good days. good luck in everything and i hope they come up with a really good treatment for you!

dionna

[jenwclark]

Welcome.

The course POTS follows is really variable. Some people have a sudden onset, some have it come on gradually, some have it from birth, some get worse, and some get better.

I think mine has been coming on gradually for most of my life. I had many years of unexplained fatigue before my symptoms became clear enough and frequent enough to lead to a diagnosis. Looking back, I've had POTS symptoms at least since I was 12 (my Mom says 5), but I didn't realize the way I felt was abnormal until it began to seriously interfere with my life at age 19.

I'm glad you have a flexible work schedule. That makes a world of difference in riding out the ups and downs. I hope you find some help here and from your doctors.

spike