New Member - Think I might have POTS

[pokane]

Hello everyone,

TLDR: minor symptoms 2 years ago, worsening over time, appendectomy 3 months ago, had recent "episode", 2 at home table tests 80/125 (high resting because ADD meds) and 65/130 (before meds).  POTS?

I was hoping I could get some feedback from others here on my situation.  To keep it as brief as possible, I'll use bullet points.  I can provide more detailed examples if that will help:

• Background:  33yo male, former collegiate wrestler, have lived a healthy lifestyle and been in excellent shape my entire life (3-5 days/week of lifting weights or running)
• 1 year ago:  Minor symptoms, mostly fatigue, trouble sleeping, concentration, feeling a bit lightheaded after standing up, having to lie down after eating, and severe intolerance to alcohol (2 drinks would leave me destroyed the next day).
• 6 months ago:  Worsening fatigue with nausea, bloating, stomach pain, occasional vomiting, and loose stools every morning.  Having a normal sized meal would knock me out for the day.  Started having problems at the gym with overexertion symptoms and had to start shortening my workouts.  I started taking ADD medication again (20mg/day adderall) after being off for 6 years due to worsening concentration/fatigue problems.
• 3 months ago:  Had an appendectomy, so of course no more exercise.  Saw the Dr a couple times for the GI problems that were persisting daily.  Starting noticing lightheadedness/dizziness from standing was getting worse but figured it was the ADD meds.  Starting having occasional night sweats and general sweating problems having to change my shirt 2-3 times a day.
• Recent:  Usually all my symptoms were cyclical and closely related to my recent sleep quality and quantity, but now I was having more bad days than good.  I started to feel my heart pounding in my chest from basic things like putting the dishes away or picking up my 1 year old.  Also, the fatigue, bouts of lightheadedness, and inability to concentrate were getting worse even with the ADD medication.  Still haven't exercised since the surgery.

A couple of days ago, I was unloading some groceries from a Costco trip and had a scary reaction where my heart starting really pounding, I was drenched in sweat, and I almost passed out.  I felt like I had just sprinted a mile.  I had to lie down motionless for around 20 minutes to recover.  Did some research and was concerned I was anemic, so I scheduled a Dr visit.  Then, I came across POTS (had never heard of it before) and noticed I had most of the symptom so I figured, "what the heck" and did the stand up test.  I measured by heart-rate with a fitbit I hadn't worn in over a year and my iphone app.  The fitbit passively checks and gives you 5 minute averages.  I also did spot checks with both devices, which gave the same readings within 2-3 bpm for every check. 

Evening Test (the ADD medication is why my resting rate was 15bmp higher for this test):

15 min Lying Down: 85 avg, all spot checks between 83-88

30 min Standing: 128 avg, spots checks between 120 - 135.  Felt very dizzy, lower back covered in sweat.

 

Morning Test, before taking ADD meds and after about 10 minutes lying quietly in bed:

Lying Down: 66 avg, spot checks between 63-68

15 min Standing: 130 avg, spot checks between 128 - 136.  Same symptoms.  Only 15min because I had to start my day.

 

I wore my fitbit all day yesterday and noticed that once I start walking around or stand up from sitting, my hr is only 100 - 110.  If I stand still it shoots up to 125-135.  I had to slowly jog across the street to make the walk signal and my HR hit 145.  This post is long enough so I'll stop here, but does this sound like POTS?  I noticed during the tests I felt a bit anxious so maybe the rise in HR was a placebo?  Is the big drop in HR once I start moving around normal?  What should I say to my Dr?  These recent issues are really the first time I've consulted my Dr about a health issue as an adult (ADD diagnosis when I was younger).  Thanks for making it this far, I appreciate any feedback you all may have.

[MomtoGiuliana]

Hi pokane, welcome to the forum.

Correct that the definition of POTS is a change in heartrate on standing of 30 bpm or more.

http://www.dinet.org/index.php/information-resources/pots-place/pots-overview

I think it is not unheard of for hr to go down when walking vs standing still for POTS patients.  From what I understand that could be due to the fact that when you are moving that is helping to return blood to the heart so the heart doesn't have to work as hard.

Unfortunately not all doctors are aware of POTS.  And not all doctors are open to being educated by their own patients.  Many patients report that they initially are told they have anxiety.  And it can be difficult to separate anxiety from POTS bc anxiety CAN be a symptom and the symptoms surely can bring on anxiety.

If I were you I would share the data you collected at home, and bring along a list of your symptoms.  A tilt table test would help to determine a correct diagnosis.  So perhaps your doctor would be willing to refer you to an EP who would more likely be knowledgeable about diagnosis and treatments available.

Hope you are able to get some help from your doctor and feel better soon.

 

[MomtoGiuliana]

Also, not sure if you looked at our website.  We maintain a list of specialists that might be helpful to you if you want to try to see a specialist:

http://www.dinet.org/index.php/physician-list

 

 

[pokane]

1 hour ago, MomtoGiuliana said:

Also, not sure if you looked at our website.  We maintain a list of specialists that might be helpful to you if you want to try to see a specialist:

http://www.dinet.org/index.php/physician-list

 

 

Thanks for the link MomtoGiuliana, unfortunately no listings in my neck of the woods.  I will share my at home test results with the family doc and see what she thinks.  Hopefully she has at least heard of POTS.

[Katybug]

Hi pokane,

MomtoGiuliana covered most of it. Just wanted to say hi. It sounds like you are on the right track. If you do addition home tests, the change in HR is measured in the first 10 mins, so you may want to record the actual readings at 1, 3, 5, 7, and 10 mins of standing. 

Take care, 

Katie