Pots Without Constant Tachycardia?

[ipad]

The only time of day I have tachycradia is right when I wake up in the morning. My pulse resting is about 60, and it can go up to about 100 bpm. My morning pulse usually improves after drinking a cup of water.

However, during the rest of the day, my resting pulse is about 60-65, and it goes up about 15-20 bpm after standing for a about 5 minutes.

I have all other symptoms of POTS: Constant lightheadedness, chronic headache, fatigue, and purple arms and legs after standing for a few minutes.

I am a 15 year old boy who has been struggling with a mystery illness for 3.5 years.

Does anyone have any ideas of what this could be, or if it could be POTS?

[ipad]

Anyone?

[Batik]

How are you measuring your pulse? I've heard that home blood pressure monitors may not be sensitive enough to pick up the changes on standing.

[westernmass]

I have pots and I don't have constant tachycardia. My resting heart rate is also very low like yours- lows 60s and even 50s sometimes. I hit around 100-110 on standing (results from Tilt table test).

Have u been tttested? What have you tried so far?

Good luck!

[Kellysavedbygrace]

Could be. POTS is one of many disorders of the autonomic nervous system- which means the system is in dysfunction. This is why you can have false negative Tilt Table Tests (TTT.) or large variations in HR and BP. You might want to see an Electrophysiologist (Cardiovascular specialist) and ask them to rule out POTS via TTT. If they've never heard of POtS bring them info from the DINET.org site. Most autonomic specialists would say you have POTS if upon standing your heart rate rises 30bpm or more. So since your morning pulse increase is 40 pts and because you have many of the symptoms you might have POTS- but only a doc can diagnose.

Glad you found this site. It is a great resource for you. Most all of us have had a "mystery illness" before diagnosis. Some many months, several many years. I was told to take Xanax and go see a counselor after the main tests came back normal. Like you, I researched online and eventually suggested POTS to my team of docs- primary, cardio, neuro. Once they read up about it, they all agreed. My blessings upon you iPad.

[Katybug]

My tachycardia is completely unpredictable. It may be there when I wake up or may not show up until late in the day. Wednesday, I had a whole day with no tachy symptoms then I was toast on Thursday and could barely do anything that involved being upright.

Have you had a tilt table test performed by any of your docs?

[peregrine]

Definitely look at other types of dysautonomia as well - POTS is what many (perhaps even most?) folks on this board have, but there are other types of dysautonomia that can cause the same other symptoms without a strong tachycardia component. Might be worth asking your primary care doc to do a "poor man's" tilt table test - measure BP and HR while lying down, on standing up, and then every minute or so thereafter for 10 minutes. You might have orthostatic hypotension, for example, or something else in the orthostatic intolerance area.

[HyperPOTS8]

Go to one of the main dysautonomia centers if you can ( Mayo, Vanderbilt, etc) rather than taking a chance on getting one of the many EP docs who really don't know much about POTS/dysautonomia.

[joyagh]

I wonder about this too. I mainly have tachycardia (120-130) with minimal exertion. Just standing my HR is about 80-95, which is about 25-32 above resting. I am symptomatic by 90 BPM, and my symptoms increase with my HR. I wonder about "ortho-kinetic" tachycardia symdrome or intolerance. I can't stand still and I never do b/c it's just uncomfortable so I dunno if my HR would go up a lot if I stood still for a while, but I should try it and check my HR. I have to be moving around or sitting down. But when I do any minor exertion (chores, etc) I get symptomatic. I seem to only be ok when I'm just walking and puttering or sitting.