3 replies to this topic

[dsindc]

I have a fresh, 3 month old SCI which has currently left me a c6 quad.

2 weeks post-op I started experiencing instances of Autonomic Dysreflexia's accelerating high blood pressure- the condition that goes along w/coming off of the mysterious 'spinal shock'. Unfortunately, during rehab my instances of AD spiraled out of control, (despite my naturally LOW blood pressure) occurring daily, often 2-3 times per day. Often the cause was found - UTI, full bladder, bowel issues, etc. But MOST of the time, and even after countless exams, no cause was identified.. Often, tiny things like posture, sitting on my tailbone, having a ray of sun shine on my arm and even anxiety seemed to cause it. My neurologist said she had never seen someone w/such a sensitive autonomic nervous system. Perhaps being incredibly petite and small framed (90 lbs, 5'1) had something to do w/this sensitivity?

Anyway, point is, the horrific AD episodes have subsided, but my body's ability to regulate temperature is still out of whack. So every time I experience what seems like a 5 degree temperature change or more, I still do get AD! And this summer weather is no good for that, especially with my being mummified in TEDs, ace bandages and abdominal binder to keep my capricious pressure UP, yet leaving me a victim of overheating. I want to go outside! How long will it take for the sensitivity to temperature fluctuations to improve? Does it ever improve for c6 quads?? I don't want to suffer from any more AD, but I also don't want to become a hermit, with the skin tone of Dracula. Also, when will my BP improve? I can hardly get up in the morning without keeling over and passing out. Help! Advice? Comments?

[MrBump]

what i'm learning very quickly is that everyone is different and you just can't compare...........

i'm lucky as i've never really been dysro but my temp is way out, altho i'm the opposite, i can handle the heat but get very cold very quick.

[crhindc]

I think attitude and staying positive has a lot to do with blood pressure. Keeping a healthy, forward-thinking outlook will probably help considerably.

Has anyone experienced a significant improvement in health from the power of positive thinking?

[Scott_C4-5]

My blood pressure stays low (around 90/60 to 100/70) and I stay cold year round. I wear a knit cap to keep warm inside, but in summer I love sitting in the sun... until my skin turns really red from a reaction to medications, then I head for shade. I don't think my attitude has anything to do with it, because if I did, I would yell nonstop and be extremely bitchy so I could warm up and not look strange by wearing winter gear during spring, summer and fall. Also, I rarely get any AD occurrences since I got the supra pubic cath surgery.

I heard/read something once that its the where the hypothalamus no longer gets normal stimulus and causes the body to feel hot or cold when it should be feeling normal temps.