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To get hyper POTS diagnose do you necessarily should have significant BP or heart rate changes when change positions?


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I just wonder if my blood pressure or heart rate not significantly falling or raising during change of the position (lying/sitting/standing) then I don't have hyper POTS? Or this is not the main factor? I have exercice intolerance which is reflects in high dyastolic (and sometimes systolic if I overdo) blood pressure and heart rate and breathing problem. Also I get sometimes dizzy when I walk fast (but not because of the blood pressure or heart rate), dizziness is rather neurological. Also when I am panicking too much or worried I may have ice cold hands and feets, hands tremor, muscle twitches, as well as high blood pressure. Also I often get overwhelmed or overstimulated in busy environments/shops/works. But the main symptom is exercice intolerance and breathing problem sometimes which becomes worse on exertion (physical or mental) or when it's hot, or when I am excited about something, or when I am too tired. I had this symptoms for 16 years (after I got concussion). I think I may have some blood circulation problems or neurotransmitter imbalances, but not too many tests been done during my life (only head MRI, ECG, and some blood tests, but no catecholamine tests). I think it will also be good to finally check my neck as well, since I had some neck injuries when I was a kid.

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Anyways do you think I may still be diagnosed with POTS, and it worth to go and do tilt table test and urine/plasma catecholamine tests? Or in my case (since I don't have serious symptoms when changing positions) it is no need to do this kind of tests because I may not have POTS but I may have another type of the dysautonomia? Thanks. 

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Hello @Viktor - this is a good question. I have HPOTS and I know that for a POTS diagnosis you need an increase of 30 BPM within the first 10 minutes of standing that is sustained, and for HPOTS your BP is supposed to go up as well. This was all the case for me. However - my sister has all of the symptoms you describe and that I share as well - HOWEVER she does not have an increase of HR upon standing. And her BP does not RELIABLY go up during TTT. She does have Hypertension though. So she has a diagnosis of autonomic dysfunction, and another time she was diagnosed with autonomic neuropathy, but the treatments are the same as for HPOTS. She responds very well to IV fluids - like me and my other sister who has HPOTS. My autonomic specialist says that there can be differences in symptoms and not everyone will fit the perfect description, yet still have dysautonomia. 

I am firm believer that - especially in dysautonomia - if a doctor looks at tests only and not the symptoms than he/she is very narrow-minded. Obviously you have symptoms of dysautonomia and if you don't perfectly fit the criteria for HPOTS but share all of the other symptoms then IMO it should be treated as dysautonomia. --- To answer your question: yes, I would get the tests done. TTT is different than the orthostatic Vital signs in so far that when you actively stand your muscles still help pump blood up to the heart and brain, even if ineffectively. During a TTT you are not standing, you are passively upright, meaning that your muscle pump is not activated. This will exacerbate the onset of POTS symptoms, and if nothing happens simply by standing then they give you medication to trigger the dysautonomic reaction. And to determine whether or not you have HPOTS the catecholamine levels would be very helpful. ( Although my sister had them drawn during a TTT and both were normal, but she was on all of her meds ). 

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6 hours ago, Pistol said:

Hello @Viktor - this is a good question. I have HPOTS and I know that for a POTS diagnosis you need an increase of 30 BPM within the first 10 minutes of standing that is sustained, and for HPOTS your BP is supposed to go up as well. This was all the case for me. However - my sister has all of the symptoms you describe and that I share as well - HOWEVER she does not have an increase of HR upon standing. And her BP does not RELIABLY go up during TTT. She does have Hypertension though. So she has a diagnosis of autonomic dysfunction, and another time she was diagnosed with autonomic neuropathy, but the treatments are the same as for HPOTS. She responds very well to IV fluids - like me and my other sister who has HPOTS. My autonomic specialist says that there can be differences in symptoms and not everyone will fit the perfect description, yet still have dysautonomia. 

I am firm believer that - especially in dysautonomia - if a doctor looks at tests only and not the symptoms than he/she is very narrow-minded. Obviously you have symptoms of dysautonomia and if you don't perfectly fit the criteria for HPOTS but share all of the other symptoms then IMO it should be treated as dysautonomia. --- To answer your question: yes, I would get the tests done. TTT is different than the orthostatic Vital signs in so far that when you actively stand your muscles still help pump blood up to the heart and brain, even if ineffectively. During a TTT you are not standing, you are passively upright, meaning that your muscle pump is not activated. This will exacerbate the onset of POTS symptoms, and if nothing happens simply by standing then they give you medication to trigger the dysautonomic reaction. And to determine whether or not you have HPOTS the catecholamine levels would be very helpful. ( Although my sister had them drawn during a TTT and both were normal, but she was on all of her meds ). 

Thank you very much. That answers all my questions. 

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There are a number of conditions that can cause exercise intolerance.  It is always hard to know but if a sustained increase in HR (or decrease in BP) is not one of your symptoms, I would put dysautonomia as lower likelihood for the cause of your symptoms.  Not necessarily ruling it out, but maybe your time is better spent investigating other conditions first like with your neck and other injuries.  Did you have a full cardiac workup with ECG, Echo, stress test, etc?  And a full blood workup?

 

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