Is there anyone else out there with pure autonomic system failure?

Diagnosed with Dysautonomia in 2016 caused by tick infections. Autonomic Nervous System is dysfunctional and damaged. One of the main problems would be improper blood flow. A major problem. Many other issues derive from the nerve damage.

I HAD A TICK INFECTION AT ABOUT THE SAME TIME.

DYSAUTONOMIA resulted.
RESULT : nerve damage and autonomic nervous system issues.

I HAVE SEVERE BALANCE ISSUES THAT AROSE FROM THIS.

I ALSO NOW HAVE PERIPHERAL NEUROPATHY

It’s not fun. I’ve been taking 2 meds since 2016 but quit both meds 2 months ago. Just didn’t seem to be working anymore. Health seems to have deteriorated regardless as to my activity. So many mental and physical issues become a problem in dealing with these health situations.

OUCH!!!

I have same problem, balance, neuropathy plus lightheadeness. Makes me feel miserable.

THE FACT THAT SO MANY PEOPLE ARE IGNORANT ABOT THIS COMPOUNDS THE CONTINUING PROBLEM WITH TICK BITES!!!

Do you have these symptoms:

Does anyone here struggle with both frequent “extreme” high and low blood pressures. When it is low (resulting inadequate oxygen to the brain) the following occurs: rapid involuntary whole limb jerking; foot stomping; inability to speak/respond, move (completely frozen except for the limb jerking), blank stare (inability to blink), and limited cognition until sufficient blood/oxygen returns to the brain? The very low blood pressures (causing limb jerking, etc.) occur even when sitting still working on my laptop for a while, not just when going from lying to sitting and sitting to standing. So, it is not always caused by positional changes. When it is extremely high (in the hypertensive crisis range - mine 240/150, over 300 a couple of times in the ER) it is accompanied with a very massive, indescribable generalized unbearable headache, and extreme flushing of skin, and glassy eyes. I also have urticaria, random dysregulation of body temperature, bilateral Aides Tonic Pupil, Tinnitus, Restless Leg Syndrome, Insomnia, and extreme reaction to testing both knee reflexes. My Autonomic and Neurological Systems are definitely dysfunctioning. I would love to communicate with anyone who has these symptoms. It has been a very long and hard journey.

I would like to connect with anyone that has any of the following symptoms:
I have frequent (daily) “extreme” high and low blood pressures. When it is low (resulting inadequate oxygen to the brain) the following occurs: rapid involuntary whole limb jerking; foot stomping; inability to speak/respond, move (completely frozen except for the limb jerking), blank stare (inability to blink), and limited cognition until sufficient blood/oxygen returns to the brain? The very low blood pressures (causing limb jerking, etc.) occur even when sitting still working on my laptop for a while, not just when going from lying to sitting and sitting to standing. So, it is not always caused by positional changes. When it is extremely high (called hypertensive crisis) it is accompanied with a very massive, indescribable generalized unbearable headache, and extreme flushing of skin, and glassy eyes. I also have urticaria (feeling of a 1000 needles simultaneously), random dysregulation of body temperature, bilateral Aides Tonic Pupil (both pupil sizes are unequal and have become frozen), Tinnitus, and Restless Leg Syndrome. When a doctor is testing my knee reflexes, 1) the opposite leg will respond instead at times, and 2) the leg will extend straight up as high as possible while sitting. It is always an extreme response. I would love to communicate with anyone who has these symptoms. These symptoms have become debilitating.

Please Read:

I would like to connect with anyone that has any of the following symptoms:
I have frequent (daily) “extreme” high and low blood pressures. When it is low (resulting inadequate oxygen to the brain) the following occurs: rapid involuntary whole limb jerking; foot stomping; inability to speak/respond, move (completely frozen except for the limb jerking), blank stare (inability to blink), and limited cognition until sufficient blood/oxygen returns to the brain? The very low blood pressures (causing limb jerking, etc.) occur even when sitting still working on my laptop for a while, not just when going from lying to sitting and sitting to standing. So, it is not always caused by positional changes. When it is extremely high (called hypertensive crisis) it is accompanied with a very massive, indescribable generalized unbearable headache, and extreme flushing of skin, and glassy eyes. I also have urticaria (feeling of a 1000 needles simultaneously), random dysregulation of body temperature, bilateral Aides Tonic Pupil (both pupil sizes are unequal and have become frozen), Tinnitus, and Restless Leg Syndrome. When a doctor is testing my knee reflexes, 1) the opposite leg will respond instead at times, and 2) the leg will extend straight up as high as possible while sitting. It is always an extreme response. I would love to communicate with anyone who has these symptoms. These symptoms have become debilitating. It has been a 23+ journey that has greatly impacted my life.

Has anyone had a neck injury resulting in neurological s/sx? After putting compression on my neck for an extended time I immediately had numbness to my lower lip. This started in 08/2021. over the past several years I have struggled with worsening symptoms. I initially thought I was dealing with a cerebral spinal fluid leak and almost all the symptoms. that accompany that diagnosis and I still think that a. CSF leak is part of what I'm dealing with. I have had blind blood patches (3). that have helped. But they have not been able to find a leak on imaging or a fistula. I started exploring other possible avenues in my quest for answers. This has now brought me to explore dysautonomia. I was able to find a specialist in complex illness and just recently started working with him. I had never had problems with my B/P before my neck injury.... now I really wonder if I am dealing with dysautonomic failure. My new doctor has had me do a NASA LEAN TEST where you check you B/P after laying flat....and then stand leaning against a wall and check you B/P every minute for 10 Minutes..... Wow! I know that I have been dealing with labile B/P but this has been a real eye opener, Laying down my B/P was 209/96 53, 164/120 90, 175/101 53, 194/171 63 these are the highest levels. When I stand up my B/P was 64/52 ish and continued to go down.....so low my cuff would not register a B/P...just error out. Does this perchance seem familiar? I would love to compare notes. I'm 69 this year. I struggle with Ehlers Danlos hypermobility type connective tissue issues.