February 14, 2014 at 3:31 pm #669GingerLoxParticipant
Following a diagnosis of Lupus with its’ many facets of disease activity…I was diagnosed with POTS 14 years ago while not being able to stand due to not being able to maintain my blood pressure following my pacemaker implantation. Several of the leading medical experts had diagnosed me with POTS/Neurally Mediated Hypotension/Pure Autonomic Failure…as the Hyperadrenergic variant had not been discovered at that point.
Fast forward…both of my daughters became ill and were showing signs of disease. After much time focusing on the autoimmune features of their disease presentation, we have now confirmed diagnosis of Hyperadrenergic POTS for both of them. (side note: Several years ago, they had both been ironically individually diagnosed, one with “Marfans” and the other with “EDS”. Both doctors skimmed over this portion of the diagnosis, telling us to have their hearts and eyes checked for related problems and that otherwise it was a benign condition, yikes.)
Regarding POTS, and all I have learned about it in the last few years, my understanding is that POTS is the portion of the disease that gets all of the attention, although it is only one of many body systems affected by dysautonomia symptoms. It gets its’ name on the marquee when there are many more star players. I believe the focus is certainly important as it has become the most convenient way to quantify, recreate, and medically capture the HYPERSTIMULATION OF THE AUTONOMIC NERVOUS SYSTEM causing chronic hyper-release of adrenaline. But…the heart rate and its’ cascading effect on all body systems…is still only one of the many MAJOR players in this disease. Adrenaline release plays a role in our body’s reaction to every stimuli we come into contact with on a daily, minute-by-minute basis.
The reason I am posting this is because we were so strongly focused on my youngest daughter’s blood sugar dysregulation (her most bothersome hyperadrenergic problem) that we totally missed that it was a sign of dysautonomia. I had pigeonholed dysautonomia as being related solely to the heart and its’ malfunction of systems related to it.
In the hope that it might help someone else who is unaware, I am going to create another post later regarding the blood sugar dysregulation we encountered due to Dysautonomia POTS.February 23, 2014 at 12:07 pm #4902Dr. DianaKeymaster
Great thoughts here! Many of us assumed we had “dysautonomia” because we had the signs and symptoms. The doctors at Mayo confirmed my hyperadrenergic POTS diagnosis, but did not say that I had autonomic dysfunction (mainly because I passed the QSART and thermoregulatory testing). Although gastroparesis was my very first symptom, for example, they just decided to sort of ignore that. It wasn’t until years later that I realized the experts were using the term ‘dysautonomia’ or ‘autonomic dysfunction’ to describe only the (less-sick) neuropathic form of POTS. They would have called mine ‘non-neuropathic’ or just plain ‘hyperadrenergic POTS’. I think this has confused everyone, our doctors, certainly the patients, and most everyone’s diagnosis is now up for grabs! We’ll look forward to your thoughts about blood sugar. I’m pushing ahead toward revealing an overlooked cause (with an effective treatment) for the non-neuropathic form (although it may help with the neuropathic form, too). To report its effectiveness with the neuropathic form, we need to all get on the same page as far as our “true” diagnosis goes. This is not easy, as you have seen. Our diagnoses change between doctors, facilities, and even COUNTRIES. Crazy, huh? Gentle hugs to you and your daughters…February 25, 2014 at 10:38 am #4906BarbaraParticipant
Yes I’d be interested in your post regarding the blood sugar dysregulation, as I have had problems with this too.
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