Would this be considered to meet POTS criteria?

[mama_destiny]

This was my recent ttt. One dr. said it was suggestive of POTS, but my pcp said we are back to square one looking for answers. I have so many pots symptoms, but I'm confused as ever! Some things I've read say the hr needs to be sustained, but DI.net doesn't mention sustained for the criteria that I'm seeing. Would these readings meet the criteria for pots, or should I start looking elsewhere for my symptoms?

[StayAtHomeMom]

Are either of those doctors dysautonomia specialists? I would have a specialist look at it.

My HR is sustained but I am not sure if it is every time. My initial TTT showed my HR above 130 for the full 45 minutes. 

If it isn't POTS there are other types of dysautonomias as well.

Hope you find answers soon. I know how frustrating it can be to not know. 

[insertclevernamehere]

Technically no, not sure if it's totally normal though.

Have you had a workup for other causes of POTS-like symptoms (vitamin deficiencies, thyroid, etc)? That resting HR is pretty high - was IST ruled out? Would your cardio be willing to trial a beta-blocker anyways?

[MomtoGiuliana]

Keep in mind members cannot diagnose other members on the forum.  We can share our personal experiences.

From what I understand from your document your initial hr was 95 bpm.  Then went to 152 on being upright and then slowly dropped to low 100s. While from what I understand it is normal for HR to increase a bit on standing, that seems dramatic.  And do you normally have a high resting hr (95 bpm for resting hr seems high)?

When I was dx with POTS using a TTT my hr went from 80 to as high as 160 bpm.  The longer I was upright the more my hr trended upwards until I was able to lie back down.  However, I was having extreme symptoms too at that time.  Pretty much bed and wheelchair bound.  I think everyone with POTS can have symptoms and a hr response that can vary from day to day.  Have you tried checking your hr sitting and standing at home?

There are other forms of dysautonomia as was mentioned.  Ideally you should be evaluated by a specialist.

 

[mama_destiny]

My resting hr was in the 70s, until she put in my iv and my vein "gushed", then it spiked up to the 90's lol. 

At home I have an oximeter, but not a BP machine. I've taken a few videos of that to have one hand, but never showed the dr. My hr typically is around 60-70 resting, and the rise is usually 30-40ish bpm, and will go up and down between that range, in one 6min video I took, it was pretty low rates, from 68 laying to 112 standing(and fluctuates between 98 and 112. Another video it goes from 60's to 120's bpm. It just depends on the day. I wasn't very symptomatic at my ttt, and the day before my hr didn't raise above 25bpm increase at all. Mine does go up in the 150's occasionally, but it's not my norm. 125 or under usually and it never climbs indefinitely.

Hmmm. Years of searching for answers, and I still have none haha! So frustrating! I'd love to make it to a Dysautonomia specialist, I just need to find the time and funds 😕 none are close to me that I'm aware of.

[mama_destiny]

Also, I have had all normal bloodwork on thyroid, and vitamin deficiency, and my heart has been completely evaluated(echo. And holter), and is healthy, no IST.

[yogini]

Generally dysautonomia is diagnosed by a 30+ sustained increase in HR above your resting HR or a sustained decrease in your BP above your resting BP.  Your doctor could diagnose you best, but the test result you posted does not seem indicative of dysautonomia to me.  We have good days and bad days so some people with dysautonomia don't test positive on the day they are tested.   You should be able to measure the increase (or decrease) at home on another day, though.

[StayAtHomeMom]

I would let you doctor know what you said about the IV. If your resting HR was unusually high that could skew the results of your test. See if next time you can do it without the IV. Neither one I had inserted an IV. 

[bombsh3ll]

The HR increment in POTS is technically supposed to be sustained however yours never really drops down to that of a normal person in upright position, and tilt findings are not always reproducible on different days in the same patient. 

I personally (and generally speaking the better specialists seem to agree) believe that symptoms are more important than numbers. If that is your standing heart rate and you feel well, then great you don't have an illness, on the other hand if you don't quite meet the criteria for POTS but have significant symptoms which I presume you do to be having a TTT, then that warrants treatment regardless of the numbers. 

You can have orthostatic intolerance without POTS. The heart rate cut off has to be somewhere and 30bpm is just an arbitrarily agreed consensus. 

B x

[mama_destiny]

Thank you for the responses! I've been looked over for MS this past week, but I don't have that. I still believe it's POTS, as I definitely feel sick and have for over 6 yrs now, all with the tachycardia upon standing. The day of the ttt, my hr didn't stay elevated as it does on some other days. I uploaded a video to youtube closer to my ttt appt. day,  of my standing hr, I think I will show my pcp that and see what he thinks at my appt. tomorrow.

The numbers are on the lower end in the video, but some days they are all higher, it really depends on the day. 

Some days I just KNOW I have POTS, and other days I'm back to second guessing everything! 😂 Maybe one of these days I will have a for sure answer to what is happening to my body!

[StayAtHomeMom]

I remember doing the same thing. Honestly I found my diagnosis and had to have a doctor confirm. I was so sick and the doctors just kept running blood work and saying I don't know. 

I have fully accepted my diagnosis almost 2 years later. I am now searching for the underlying cause. There has to be a reason and my hope is to treat the underlying cause so my POTS will go away.