MikeO

@Jyotihere is what i promised for a response from my provider as to why pyridostigmine works. At least it is a honest response.

I hope you work this out. I have experienced the hPOTS (seizures) and sudden tarcardia. Low BP has a hand in this. There is other reasons outside of the general it's dysautonomia blame i just won't go down the road as to what i am finding out. A good employer should make some accommodations for you (not unreasonable to ask). Best of luck!

Mike, The mechanism of action of Mestinon is quite complex and I do not think it is entirely understood. I admittedly feel that my understanding, even after considerable literature review, is inadequate. In terms of orthostatic hypotension, Mestinon prevents the breakdown of acetylcholine, which makes more acetylcholine available to increase sympathetic activity in order to compensate for blood pressure drops, while in the upright position. I apologize, this only skims the surface on Mestinon, but that is my attempt to explain why it may be providing you with some symptom improvement. You have good data to show that your symptoms are worse with elevated blood sugar readings. No need to continue to send updates on that front.

Have you considered Droxidopa? might be an easier drug to manage.

I thought at one point i might have had some mild IBS but now i am sure i do not. I do experience the delayed gastric emptying which really messes with me. if i only eat meat like steak or boneless chicken and some green beans this will leave me very hungry. because of the lack of carbs won't spike the blood sugars but still provoke a insulin response which lowers BG levels (i go low and happens on queue) i have seen some lows in the 50-60 range. so what happens i eat some carbs to compensate and that stuff sits in my stomach for way too long and then skyrockets my blood sugars hours later which makes me sick. seems like a vicious cycle.

well got my question answered the hard way.. had an ER visit last night where the physician on duty brought this up to me. Not only is it possibly responsible for the nausea associated with elevated blood sugar, but she explained that It can also be responsible for delayed digestion, which contributes to unexpected lows and highs (as insulin takes effect before food has finished digesting properly and then glucose rises when food digestion finally completes). She said that this particular form of neuropathy not only affects the nerves responsible for gardening the digestive process, but also affects things like the vagus nerve (nausea and knowing when your stomach is empty or full).

Hi, I am starting to get a feeling that my GI issues are more related to autonomic neuropathy than anything else. Is this even possible? I am starting to put 2+2 together when i have GI flare ups (vomiting, sudden stomach pain, bloating etc...) they just so happen to coincide very high blood sugar levels and me missing my Mestition for a few days. Just reaching out if anyone has insight to this.

so does this last all day long after eating or just a few hours or so. anything else change in your life that maybe stressing you? May want to reduce the number of carbs at each meal and see how you feel as a high carb meal does put stress on the GI and body. I am diabetic and will get some of the symptoms described when i don't get my food right and my blood sugars get too high. Like you i will feel ill (like i took a penalty for eating). As always i would bring your new symptoms up with your Doc.

good question. I know this has been used in conjunction with midodrine with folks that have nOH Octreotide, trade name Sandostatin, is a drug that mimics somatostatin, a brain hormone that controls secretion of growth hormone from the pituitary gland. Octreotide has demonstrated superior ability to raise blood pressure by constricting veins and offers similar effectiveness to midodrine for improving prolonged standing ability. Octreotide can be used in conjunction with midodrine; however, it must be injected. Potential side effects of octreotide include abdominal pain, blurred vision, constipation, depression, dizziness, fainting, increased urination, fatigue, and difficulty breathing. https://www.multiplesystematrophy.org/about-msa/neurogenic-orthostatic-hypotension/

Here is the off label stuff i found. Octreotide has also been used off-label for the treatment of severe, refractory diarrhea from other causes. It is used in toxicology for the treatment of prolonged recurrent hypoglycemia after sulfonylurea and possibly meglitinide overdose. It has also been used with varying degrees of success in infants with nesidioblastosis to help decrease insulin hypersecretion. Several clinical trials have demonstrated the effect of octreotide as acute treatment (abortive agent) in cluster headache, where it has been shown that administration of subcutaneous octreotide is effective when compared with placebo.[24] Octreotide has also been investigated in people with pain from chronic pancreatitis.[25] It has been used in the treatment of malignant bowel obstruction.[26] Octreotide may be used in conjunction with midodrine to partially reverse peripheral vasodilation in the hepatorenal syndrome. By increasing systemic vascular resistance, these drugs reduce shunting and improve renal perfusion, prolonging survival until definitive treatment with liver transplant.[27] Similarly, octreotide can be used to treat refractory chronic hypotension.[28] While successful treatment has been demonstrated in case reports,[29][30] larger studies have failed to demonstrate efficacy in treating chylothorax.[31] A small study has shown[when?] that octreotide may be effective in the treatment of idiopathic intracranial hypertension.[32][33] https://en.wikipedia.org/wiki/Octreotide

Hi @IraZackmy goto spices are the obvious salt and pepper, I use garlic frequently as well. I do like basil as it is very aromatic and has a good flavor. Paprika works for me also. Occasionally i do use cumin,nutmeg,thyme,rosemary and turmeric. sauce wise i pretty much stick to gravies (chicken,beef and pork) i have been buying a chipotle aioli sauce that i like and make a seasoned version of sour cream dip. I do venture with other items just not very often. How about you?

Yeah i get your concern. Can't say what vanderbilt has helped with but in my trek with ANS issues there is only so many options drug wise that is available and some off the radar things that may help. I have read many times that all Mayo does is to help with symptoms and my experience if all vandy is going to do is a test or two then tell you to squeeze your butt before standing and drink more fluid the trip may not be worth it. If they will help to get to the root of what bothers you then i would say yes it would be worth it.

Good Luck!

Good post...Yes antihistamines will affect cognitive functions. the newer drugs like claritin or allegra are better. my nurses have said to take them with caution. Benadryl is good if needed but should be used short term.

I agree but unfortunately insurance companies don't always look at this in the same light unless there is a protocol or return on there investment. In Wisconsin it is like pulling teeth to get any autonomic testing done. The major healthcare and universities are all capable but choose to limit what testing is done to (tilt and if you are lucky a QSART along with antibody body testing for RA etc if you get the point). Protocol is to make assumptions based on the few tests done as the treatments really does change let's say for nOH,OH,OI,NCS etc.... Edit: I think i just said the same thing you did.

Not sure how one would test exercise intolerance or even muscle fatigue outside of reported symptoms coupled with maybe some vitals. I can tell you for sure if my BG level is 300 i am only good for a few minutes on the treadmill vs 100 and going for 45 minutes without any fatigue.

New breakfast meal that does not spike my blood glucose. super easy to make. Tortillas are keto so low carb rest is just egg salad.

autonomic dysfunction specialologist then? Lol

My vote would be a autonomic dysfunction specialist. But thats me.

@Knelliecould try a paleo/keto/carnivore modified diet. my blood sugars had got out of hand so i did a food reset. i eat two meals a day and two snacks. been on the listed food below (boring meal choices) but i feel so much better even my GI discomfort cleared up. not sure if it will help with weight loss mine has been stable. sure it is from drinking too much beer Lol. Cucumber, blackberries,lettuce,cauliflower,carrots,celery and avocado Chicken breast and red meat, eggs,cheese and small amounts of milk Keto net 0 tortillas, almond slices and just a few triscuits Just sharing my experience

Thanks! @Knelliei found this out after i bought a bottle. Next one i will for sure i will buy TMG

@Sarah Teesounds like you are being well taken care of - wish you speedy recovery.

I did look at this at one time. not sure if it is a fit for me. I suspect a slice of rye bread is gives me more orthostatic issues (lol) working on it.

@Sarah TeeOh no hope your YOUKNOWWHAT is mild. Be sure to drink plenty fluids. fruits and veggies is a good idea

@Sarah TeeI hope the new clinic works out for you. Try and enjoy your time while out and about.