Autonomic insufficiency recovery

[cathielu]

My autonomic insufficiency was so severe that I was partially or fully bedridden for many years. I found during my recovery process of propping up my bed that continual improvement came when I propped up enough for my resting heart rate to remain at 84-90 bpm, 24 hours a day. Within two weeks I was able to sit up long enough to use a toilet, and within four more weeks, I could sit up all day. Our vital signs should always be kept within healthy limits, including a resting heart rate between 60 and 100 beats per minute and systolic blood pressure at least 90 mm Hg. I was able to prop up my bed and my chair two inches more every four days. Eventually I was able to start walking, then eventually standing still for longer periods of time.  Now I am back in college. I am very grateful for my recovery.   I have to make sure that I stand up two hours a day to keep my blood vessels strong.  I don't have any more suffering after being up like before. Yay!  I propped up my bed higher and higher with bricks and cinder blocks. I suffered severely, and was not understood or helped by my doctors. After 12 years of disability, I almost died during two tilt table tests. I don't agree with the way doctors and nurses treat people with orthostatic hypotension. Nobody ever explained a realistic way to recover. I lost hope for my recovery after suffering severely in two tilt table tests. It took another five years before I tried to battle back again. This time I succeeded.  I am grateful for getting my life back.  The medicines to raise blood pressure only worked for a short time, so they weren't reliable. I wore firm support hose up to the waist 24 hours a day during my recovery phase (except when exercising or bathing), until I was eventually able to stand up for two hours a day. Then I was able to sleep with my bed horizontal again, and not wear support hose.  When I was propping up my bed, I pushed the foot of the bed against the wall, and put pillows on the wall under my feet.  I am so very happy that I got better!  I hope everyone will receive information about a realistic program of recovery.


This discussion is related to Dysautonomia?.

[cathielu]

Unfortunately, orthostatic hypotension is frequently misdiagnosed as a disorder of the nervous system, when in reality it is a state of atrophy of the blood vessel muscle.

[Heiferly]

Where did you get the information that "orthostatic hypotension is ... in reality ... a state of atrophy of the blood vessel muscle?"  Do you mean to say that this is always the case or that this is the case some of the time?

[cathielu]

I don't know if it is always the case, but I suspect that it is the case most of the time.  I could have recovered almost 2 decades earlier if I had been given a program to strengthen my blood vessels.

[Heiferly]

I'm glad to hear about your recovery, and sorry to hear that the cause of your OH was not properly investigated.  There are a number of causes of OH, from medications, to nerve damage/loss, to venous insufficiency, and there is specialized testing that can help to elucidate the source of OH/dysautonomia but it is only offered at a handful of top hospitals in the US (and indeed worldwide):

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=63

I think it's unlikely that *most* cases of OH are curable through tilt training, given the number of cases of OH that are caused by neuropathy, baroreflex failure, etc. but certainly there are some who can benefit and it's wonderful to hear that you have had such success!  The hospitals I mentioned above may incorporate things such as cardiac rehabilitation into a treatment plan in order to help improve the return of blood to the upper body in the upright position, and this is helpful for many patients; one of the largest barriers is getting insurance to pay for the therapy.  As your case points out, we still have a long way to go in this field.