Debz, I've been going through that since around 2009 and even including almost all functions of the autonomic nervous system going completely haywire. Blood pressure and heart rate have been the most difficult to manage on an ongoing basis. Mine can go from 220/160 to almost nothing instantly. My heart rate started spiking with the blood pressure increases up to 160 bpms. It also has affected about every hormone loop.

After years of tying to stay on top of it, I don't think it is going to just repair itself and there really isn't a pill to fix it. In order to strengthen blood veins and the cardiovascular system, in general, I'm biking in the gym. Because body temps, heart rate and about everything in the body can be affected, it's a real hit and miss approach and even once the label is attached, there isn't a lot of successful treatment options.

It's important to understand what triggers the "episodes' and how to see them in advance and developing strategies that help before it's an ER event, as they have no clue and could make things much worse. I've chosen a different approach to all this and hopefully a successful one.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023