Hello everyone!!! Since ES involves aggravating or stimulating some nerves (sympathetic nervous system) in the neck via direct contact or chronic pain (pain stimulates the sympathetic nervous system), I was wondering if any ES patients have had/failed a tilt table test. This tests the autonomic nervous system (sympathetic nervous system is a branch of the autonomic nervous system). The reason why I am asking is because I was diagnosed with an adrenaline disorder that caused me to develop a syndrome called Hyperadrenergic POTS. This disorder is a disfunction of the autonomic nervous system which has two branches, the sympathetic and parasympathetic…the sympathetic nervous system (fight or flight) takes over, so the parasympathetic nervous system (rest and restore) can’t be in charge…which is completely opposite of how your body is supposed to run!! This disorder and ES have completely STOLEN my life from me!! So I’m only inquiring to see if there is possibly a link…even if it’s just ES aggravating my POTS and not causing it. I apologize for the scientific talk, but it’s difficult to explain why ES and Hyperadrenergic POTS may play off each other without throwing out that jargon. I appreciate ANY input. Thank you…Love and light to you all!!!
I have POTS. My cardio did not want me to do the Tile Table Test, as she felt I would not last even a few minutes. We did the poor man's version of BP/HR lying, sitting and standing.
My adrenaline is also suspected to be high along with this.
I also have the Hyperadrenergic form. I am now on a beta blocker- Bystolic. It brought my resting heart rate down from 130 to around 80 now. Feels so much better to not have that high adrenaline feeling while sitting/standing still.
I think there can be a link b/c of the vagus nerve possibly being messed with from the styloid pushing on it.
I also have EDS and most with that also have POTS. So, for me, not sure if it is from ES or EDS.
There are others here with POTS.
Glitter Paws (love that name!)-
It is nice to feel less alone, but I sure wish none of us had to meet over this!
I agree about the link on these conditions. Dr. Cognetti discussed doing the surgery on me could be more delicate, due to my EDS. I thought to myself that he MUST have operated on someone with EDS who is undiagnosed. If I had not hit my head to trigger all this, I would never have been diagnosed with EDS. I would have lived my life thinking circus tricks in my whole family was just a normal thing! ;)
I had POTs before surgery. I didn't do the tilt table test because I decided it wasn't necessary, as the lying, sitting, standing BPs were obvious enough. I had a feeling it was caused by eagles because driving would set it off. It's gone ever since the surgery.
I also have had hypoglycemia throughout my life, with adrenaline often setting it off. Probably unrelated.
I really hope yours goes away, too, Glitter Paws! In the meantime, if yours is aggravated by driving, try wearing a soft cervical collar (at any drugstore). It made all the difference for me.
I have hyperadrenergic POTS, EDS type 3 as well. Another issue before ES surgery, I would get symptoms of low blood sugar, shakes and not feeling good. I have no history of diabetes. So, I am thinking autonomic system off from the vagus nerve. But the shakes and feeling bad would calm down after eating. Anyone else get low blood sugar symptoms?
I get the shakes from low blood sugar too.
I too have hypoglycemic and hypothrroid & orthostatic Hypotension. My BP is always low!
I’m just low on everything cause I don’t want to eat and I can barely motivate myself to do anything! Too miserable!
I have a history of hypoglycemia, too.
I know this post was awhile ago, but I recently passed out on a tilt table test 1 month after a car accident. I had my large SP’s taken out in 2013 and 2014, but didn’t have any syncope episodes until a month after the recent car accident (this past August). My Dr. thinks that it is probably bc I have had previous neck surgery and the accident aggravated it, but I don’t know. Apparently I all of a sudden have autonomic dysfunction (aka dysautonomia) now and have had a couple episodes of syncope since then. This is no fun to deal with. I just got back on this site to see if others have had similar problems.