Lgamez3

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs?

My Dr hasnt told me much of anything yet, Im still new to this. I have noticed it mainly in my feet and ankles mostly and sometimes my knees for a while now not knowing it was blood pooling. I thought my ankles were bruising each night from all of the swelling.

2. Have you ever been diagnosed with EDS or suspect that you may have it?

not sure what EDS is

3. Do you experience symptoms when lying down even after a night of sleep in your bed?

yes I do

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?

not sure what this is either. Im still reading up on all of this and there are so many different types of things it gets confusing. I only had my TTT and was diagnosed about 1 1/2 weeks ago although I have been dealing with it for 3 months now

5. Have you ever been informed by a doctor that you have low blood volume?

no

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?

YES for many many years

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?

no

8. Did your POTS arrive suddenly?

not sure- when I read back in journals I see that some symptoms were there years ago, but the near syncope and severe symptoms came on suddenly

9. Is your skin pale?

it can be at times

10. Please the top 6 worst symptoms that you experience with POTS:

dizziness

brain fog

headache/noise tolerance

fatigue/shortness of breath

shakiness/weakness

chest pain/heart pounding

If there is no change in BP or if BP increases, and the heart rate increases 30+ bmp or goes above 120, that is usually considered POTS.

If the BP drops and the hr increases, that is usually indicative of NCS.

In fact, many doctors believe that if the BP drops when the heart increases that rules out POTS and must be another form of dysautonomia.

So, you might not need to see an acupuncturist so much as a more knowledgeable doctor.

Im confused, what is NCS?

Just wondering.....do most POTS patients end up using wheel chairs? I know I am not able to go to any store that does not have a motorized cart available....my older daughters drive me there and my 7 yr old son "drives" the cart on my lap.....I am still not used to this, I feel Im too young for all of this....Im only 39

Im new to all of this still and its nice to know its not just me! I get this too. I just sit on my hands so people dont notice As for the "brain fog" I have been trying to describe this to doctors and family members for months now!!!!! it is so frustrating! I keep telling them that its like I know what I want to say but cant get the words out, I feel "stupid" all of a sudden.......

I am used to being VERY active....used to working ALOT!.....heck, between my boyfriend and I we have 7 kids that keep us BUSY! I dont have time for POTS!!!!!!! I think this is going to drive me bonkers

Laura

I was just diagnosed with POTS. It is a relief to know that I am not CRAZY and that there are other people that have the exact same symptoms and aches that I have been having. I have had so many tests and seen so many Dr's and no one has found anything until this one tilt table test. Then reading this website and the symptoms was like reading a journal from myself! haha

Well, I have had that base of the head/upper neck ache and was told I had migraines from my neurologist (ok????) and he put me on Topamax. I still take it cause it seems to work, I dont have that pain. It does nothing for my dizziness, but it does work for that pain.

Im on Metoprolol (?) for my POTS, seems to make me worse ..... any suggestions anyone?

Laura