MikeO

Not sure how to go about discussing issues. From a data standpoint is the obvious labile blood sugars and symptoms that comes along with it. So what does a endo all handle or look at? I am hesitant just to go in to the visit and just saying i don't feel good or even bring up me suspecting dysautonomia as the root of some of my diabetes/GI issues. Use autonomic dysfunction instead? Pyridostigmine does seem to help stabilize my BG/GI just not perfect. Do i dare bring up that my orthostatics are 10 times worse when my blood sugars are elevated (not sure if diabetes is a actual cause for OH episodes) or suggesting a dysfunctional pancreas causing digestive issues. Any tests that i should be aware? Just looking to be a bit smarter ahead of the visit Thanks for reading.

@Jyotii did finally get my pyridostigmine paid for. took a couple of messages to the university of wisconsin who was the prescriber and they fixed this. side note pharmacy said that the drug is a rare one for them to dispense. Best, Mike

Thanks Jyoti! i will get this insurance paid for. i still have enough to get me by. $32.00 is not that much. i did reach out to my PCP. hope that helps.

update @Jyotimy insurance discontinued one of the mfg's that is a supply to my pharmacy for the pyridostigmine and other drugs so they will not pay for it from them. unfortunately pharmacy is out of stock for the mfg that they will pay for. i am sure i will be looking into the rest of my meds as well. just hate to find a new source for meds.

Please let me know what you find out. I just am hoping this is just a "whatever event" or just a care provider MyChart mistake. but i will find out. My insurance is good to March 2024

Hey @Jyotii just had a prescription denied by insurance (kinda did panic a bit) so i called insurance and they said the mfg was discontinuing pyridostigmine. Not sure is this means that pharmacy is no longer carrying it or the med will no longer be available on the market (which would be sad for some of us). Pharmacy did fill one more 30 day supply at a cost to me 32 bucks but i am sure that's it. I don't need to deal with this right now. Just seeing if you heard of anything.

@JennKayyour recipe at work. Very diabetic friendly.

@JyotiThank You!

Sorry to hear this. I would have thought it would have been available as the drug has been around a while. Here is the mfg's link it you need it. https://www.northera.com/

Hmm...never really tested this. I can say when my blood pressure drops my hr rate goes up or at times it does not (nOH piece of me). We have seen sudden hr spikes when i was in cardio rehab and on the treadmill i would go from 98 to 139 just out of the blue and come back down. I also don't stand still very often and also always keep moving more like rocking back and forth or constantainly crossing my legs. sure i have learned to intuitively to do this over the years.

Hi @JyotiThanks for sharing the material on Mestinon. I kept pressing my Faint Doc on how the drug works as i too have been seeing benefits outside of just the usual OH and have been reporting it to her. Not sure how much she knows about the drug but i am sure she did simplify the explanation. So no i don't have HPOTS but have/do experience sudden tachycardia when my Blood Pressure drops too low to quickly (never a good outcome). Like you i see a big difference in my orthostatic tolerance (standing) and moving about it's like a light switch was turned on. Without Mestinon i am more fatigued almost like moving around like the hunchback of notre dame (lol) and have some considerable leg pain. My GI issues have been much better as well along with better blood sugar management and diet. I have also seen more stable blood pressures as well and i walk like a normal person now! The above improved when i titrated up to 30 mg x4. I have read some of the same material posted as well and makes sense. I did also read that Mestinon helps with the vagal NS tone and favors the PNS by helping some of the verve pathways to fire. I know that my Ranolazine also favors the PNS tone of the heart and helps with diastolic stretch. It has been suggested that Mestinon also Alleviates Inflammation. Kinda want to believe this as my hip pain has improved 10 fold or maybe it's that my muscles are contracting better and pushing out all that blood sugar out of my microvascular system Haha what a thought. sure my hip is feels better as i and standing more proper and taking the stress of of it Plausible? Yeah i am not very scientifically minded as well but i do get that a damaged NS not firing well or nerve messages getting where they are supposed to go and a over stimulated sympathetic NS plays havoc on the body. That's all i got. I am sure my doc will out of the blue update what she thinks about Mestinon. Have you increased your dosage at all?

@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!