I am certain it is POTS. NO ONE IS BELIEVING ME! HELP PLEASE

[luvemma]

my pulse rate was 87 when laying down, 95 sitting, and 120 when i stood up (for 6 minutes). I asked the doctor about POTS and he said it is unlikely and he does not think so. He said it might be paroxysmal positional vertigo which i don't agree on. My blood pressure is normal, no much change in that at all. I been experiencing symptoms for the past 3 months (if not longer). I kept on insisting it is POTS so he referred me to do a 24 holter. He was so sure it was not POTS. These are the symptoms for the past few days... and it been like this for months...


12/30/09: EXTREME Fatigue . Lightheaded every time I stand. Very weak legs. Cold feet and hands. Nauseous especially after eating.  Can’t walk. Heart races every time I stand or try to walk.  Chills for 2 hours. Was fine earlier in the morning, when I walked symptoms got bad.

12/31/09: Fatigue (all day). Lightheaded.
11:38: mild headache( an hour) Lightheaded every time I stand (all day).  Weak legs (all day).  Weak arms. Hot flashes (sometimes). Heart rate beats fast (Every time I stand) cold toes (all day).
5:12: face feels like it is burning.
7:25: nauseous. 8:00: Hot flashes
10:54: chills, hot flashes

Jan/1: 8:30- 1:30 nauseous (worse when standing). VERY  heavy weak legs (all day). Weak arms
12:46: palpation
2:12: chest pain.  
2:50 face feels like it is burning
Extremely exhausted.
3:09: chills, nauseous
Lightheaded (all day)
Walking is almost impossible.
5:32: a little nauseous after eating.
6:18: eyes hurts (10 minutes) and nauseous.
6:40: chest pain
LIGHTHEADNESS IS WORSE IN THE MORNING

Jan/2: 8:30: nauseous
Getting out of bed was difficult.
Weak legs, arms, and lightheaded (all day).

Exercised (6 minutes): extremely tired, out of breath.
1:54: hot flashes.
3:51: mild headache, lightheadedness is not as sever as earlier (weights on legs)

4:23: short breath, chest pain
5:14: LESS fatigue.
5:40: Exercise (30 mins) … HOT FLASHES
10:16: stomachache
SENSETIVE TO TEMPATURE

Jan 3: 12:17 LESS LIGHTHEADED THAN OTHER DAYS
Fatigue (Less sever)
1:30:  exercise (30 minutes)
Feeling better than other days.
4:16: VERY lightheaded when standing.         6:30-8:00: HOT FLASHES

[luvemma]

Those symptoms you mentioned does not mean you necessary have POTS. Those symptoms fall under a lot of other things. To know you have POTS. measure your blood pressure and heart rate while laying down, sitting, and standing up. Then measure your heart rate and blood pressure after you been standing for ten minutes. If you heart rate goes up more than 30 or it is 120 or above; you might have POTS. On the other hand, your blood pressure would drop, but that is not always true. It can go up or not change much (which is my case) but drop in blood pressure is more common. If so, then you should have a 24 holer and see how your heart rate changes. Check everything else to make sure it is not another problem, it might be something else. Heart rate and blood pressure would just change upon standing. Ask your doctor to refer you to do a 24 hour holter, and check your heart rate and blood pressure. Cold hands and tired can simply be anemia or something else. Or it can be an ear problem.

Good luck

[tab0513]

I think I may have POTS.

Symptoms

Very Cold Hands and Feet
Heart beat changes
very tired ( could easily sleep the day away and my sleep pattern is irregular)
weak and numb arms and legs
when I sit my legs get numb
My hands and feet are a purple black color with white spots
i get dizzy which turns to a migrane
i am hungry all day long

[luvemma]

The holter records the heart rhythm for 24 hours. You wear it and do your daily activities. My pulse rate was not measured by the Holter i asked my doctor to check it for me. I have not gotten the results of the Holter yet. The tilt table test is more accurate, and i am trying to get my doctor to refer me to do that. I hope your daughter feels better.

[LaurenJS]

I can feel your frustration, my daughter is going through all of this now.She had the Tilt Table Test done yesterday. - she is 17 yrs.  Her heart rate will be 50-70 laying down and 110 - 140 standing.......it was 130-140 during the entire Tilt Table test but she did not pass out.

What did the 24 hour montier reveal? (or is this how you got your pulse rate numbers from?)

Good luck, look forward to hearing how this works out for you.  Don't hesitate to get a 2nd opinion and ask to see an electrophysiologist.......don't just take one doctors word -

:o)

[Heiferly]

Let me know if/when you try calling that number I gave you and if you get set up with an appointment there.  Hang in there!!  I know it's rough when you're struggling to find a doctor and a diagnosis!!  

Everyone here is very supportive so hopefully you'll find other people with similar experiences ... (misery loves company?)

[pepito6]

hi, I am so sorry to hear that you are not well.  I was diagnosed with POTS about a year ago and I am still learning about this.
You seem to have a lot of the symptoms of POTS , you should get a tilt table test to confirm. (try to get an appointment with an electrophysiologist cardiologist)
He should be able to help you!

[luvemma]

All blood tests came out normal. Not anemic, thyroid is normal. EVERY SINGLE BLOOD TEST IS NORMAL! I did an MRI it came out normal. I done echocardiogram, and that was definitely normal.