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Diagnosis doesn't fulfil POTS criteria

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Hi. I've posted before as I have been off work and have a load of POTS symptoms, it floored me. I didn't initially realise this but when investigated non POTS specialists said in letters I may have POTS and need a specialist referral (waiting). I was diagnosed with hEDS a few years ago by a geneticist. Also CFS and IBS and OA. I have headaches, sweating, tachycardia on moving, always feel light headed and slightly confused when standing/moving and have always wanted to lie down, visual issues, chest discomfort, cannot tolerate heat. Racing/ pounding heart, nausea, Raynaud's, exercise intolerance, the list goes on. My main issue is Orthostatic Hypertension, especially diastolic, can go extremely high, eg diastolic 140 on standing, not always that high. With holter pulse between 40-160, BP ranged approx 80/60 - 170/150, narrow pulse pressures, though I suspect low BP due to trailing medication. I had negative test for urine metephranines and normal ECG except for sinus tachycardia. 


My question is.... I have most POTS symptoms but not the fundamental one...despite getting regular tachycardia in daily life, when I just stand from sitting, my HR doesn't go up much at all, only when I move, then it shoots up. Does this mean I could theoretically have a diagnosis of Orthostatic Intolerance rather than POTS? Or does "mild dysautonomia" with elements of POTS exist? 


I know on this forum one can't diagnose but I would really appreciate opinions generally speaking, there must be others like me with lots of the horrible symptoms? Due to Covid everything is taking so long. Thank you.



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Hello @Goldfinch - I am so sorry you are having such a tough time!!! --- Regarding your questions mentioned above: unfortunately the diagnostic criteria for POTS are so narrow ( HR increase of 30 BPM within 10 minutes of standing ) that many doctors will not label you with POTS if they only go by the book. All of your symptoms clearly confirm the possibility of POTS - but you may not display them in the TTT since your HR does not shoot up upon standing. My sister clearly has HPOTS ( high BP, especially diastolic, and all of the typical POTS symptoms ) but she does not have tachycardia. Actually - her HR tends to run low. She has seen my autonomic specialist several times and was diagnosed with autonomic neuropathy, not POTS, simply b/c she does not have tachycardia. But she gets treated the same as for POTS. 

What has helped me and my sisters ( HPOTS runs in 3 generations of my family ) is Beta blocker Carvelidol, Calcium channel blockers, SSRI and Ritalin ( for the fatigue and brain fog ). However - we all still had problems with high BP and now we all get regular scheduled IV fluids, which have completely stopped the diastolic hypertension and most of the POTS symptoms AS LONG AS WE LIMIT OUR ACTIVITY and avoid triggers. 

2 hours ago, Goldfinch said:

Does this mean I could theoretically have a diagnosis of Orthostatic Intolerance rather than POTS?

Well - IMO OI is a symptom, not a diagnosis. So possibly they have to go with an umbrella term for you, like autonomic dysfunction or so. However - you say you get tachycardia when you are active rather than just standing still: I think that depending on the physician that could still be considered POTS. I would wait for the appointment with the autonomic specialist, he/she probably has seen cases like yours. But regardless what the "name" is - the treatment is the same and focused on symptoms relief. That can be attained by living within your limitations ( especially avoiding your triggers ) and finding the right medications ( which is often a challenge b/c we all respond differently to meds and often have medication sensitivities. ). So for now I have found that avoiding triggers and carefully balancing rest and mild exercise, as well as increasing fluid intake may hold you over until you see the specialist. 

What meds do you take, if any? You mention Raynauds syndrome- this seems to be quite common in HPOTS, I have it also, and often this is a sign that the blood vessels spasm and constrict causing the symptoms, whereas in a majority of POTS cases the symptoms are caused by INABILITY of the vessels to constrict, so the symptoms are caused by a different mechanism. This seems to be quite common when diastolic Hypertension is a symptoms, and calcium channel blockers seem to help well with that in some cases. 

I wish you the best of luck and hope the specialist will be able to shine some light on your condition. Please let us know how you are doing - be well!!!


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