I made a typo in the above highlighted passage, it was supposed to read "the low blood pressure problem was NOT considered to be part of the problem by my so called "GI experts" until autonomic testing....."
I posted more about my blood flow issue here
http://forums.phoenixrising.me/index.php?threads/nicorandil-a-role-in-treating-cfs.29487/
First, my measurement results & observations:
- when I am lying, the blood flow in my SMA (superior nesenteric artery) is almost normal, it wont cause any problems at that level (the intestines are very effective at extracting oxygen, so a slightly diminished perfusion isnt a problem)
- when I am standing, blood flow is 50% diminished. In healthy people it stays the same. At 50% diminuation there is compromise of digestion. This is the problem.
- My resistance index (RI) in the SMA is surprisingly too low (if there is low blood flow it should be too high. is yours high or low? do you know how to compute the RI?). even more surprisingly, the standing/lying difference of the RI is normal. (When a healthy person stands up, the resistance index in the SMA diminishes, so that in spite of some blood dropping to the legs, the flow in the SMA remains just the same. This mechanism is perfectly healthy in me. it is a common problem in intestinal blood flow issues that the ability of the vessels to dilate when needed is diminished. for example after a meal or when standing up. was the main suspect in me, but is not the case.
I've not heard of a Resistance Index before so no, I don't know how to compute it or if there is a difference between laying and standing. The only measurements I've had done was mesentery artery flow velocities laying down by Duplex Doppler Ultrasound, only mid SMA was slightly elevated at 277 cm/second (>275 cm/second indicates 70% stenosis) but a subsequent CT Angiogram couldn't detect any occlusion to account for it despite also having an epigastric bruit, also indicative of an impaired blood flow.
I know my b.p. is worse when laying down. Whenever I'm in hospital, my b.p. has to be taken sitting up at night to prevent calling out the duty doctor because it usually falls below their safety threshold which I think is 80/50. Normal was around 90/60 mark until I found that nitrate vasodilator meds for the pain from intestinal ischemia actually raised my b.p. to 110/70 on good days. Either way, the response to standing is normal although on a tilt table test late last year, it dropped off to the lowest point of 69/40 at the 4 1/2 minute mark.
do you have "only" pain or also crampiness in the belly? (low oxygen should cause muscle cramps)
I developed a constant low grade background pain 7 years into having gastroparesis which was made considerably worse about half an hour after eating, that's Chronic Mesenteric Ischemia and the pain was generally well controlled for a couple of years with the nitrates but didn't stop the occasional acute flare every few months where I needed ER treatment for severe (10/10) pain, that's Acute Mesenteric Ischemia.
Do your symptoms get better or worse if you lay down / stand up after a meal?
Laying down after eating is something I've only tried in the last week as I am struggling again to control nausea and vomiting. It eases the discomfort from eating but as soon as I sit up, I regurgitate the majority of food the same as if I just sit still for an hour after eating. I need to have another CT Angiogram to see if this is from Superior Mesenteric Artery Syndrome as I have dropped below 40 kg.
how was the sudomotor test done?
It was done in a hospital laboratory setting, QSART, TST, Tilt Table, Valsalva Manouevre, Heart Rate Variability to Deep Breathing, several abnormal results concluded to be Restricted Autonomic Neuropathy. Had virtually no sweating at all after one hour at 40 deg C.
90/60 was a good day before starting nitrates. It still drops during an acute flare, 57/39 is the lowest I've recorded during one of these events and the pain can last for up to 3 days at a significant level.
what is this spasm in the small vessels? l am curious to learn about this condition
Small vessel disease is what the GI motility specialist calls it but it's the microvascular network fed by the mesentery arteries and veins. When blood volume or blood flow is insufficient, it can create spasm in these small vessels which is Non-occlusive Mesenyteric Ischemia (NOMI). I can't actually feel any spasm in the gut, it only translates as pain which is all located between the ribs (epigastric) as the bowel becomes increasingly hypoxic. The pain can be felt in different areas by others and can radiate to the back I believe. I only know I have NOMI because it is consistent with the type of mucosal damage seen at the transverse colon during a colonoscopy which is distinct from Ulcerative Colitis. Ischemic Colitis is somewhat similar I gather but that usually occurs with blood in the stool too, something which I do not get with NOMI.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2778114/
It's not known how extensive the ischemic damage is because the scope perforated the bowel