MikeO

Happy to read that your GI has been ok so far. Was your thirst due to dry mouth or just feeling of thirsty?

First couple of doses was a bit of a emergency to get to the bathroom, Haha. @Sarah Teestart with a low dose first and work your way up to your prescribed mg. any GI issues i had with pyridostigmine has cleared up over time.

well antibody labs came back. one is questionable as low positive. no panic for now as my very low carb diet is working. sure i will find out more in september. Glutamic Acid Decarboxylase Antibody 5.0 IU/mL IA-2, Autoantibody 5.4 U/mL Insulin Antibody 0.4 U/mL

The gob is whipped sour cream. has just a hint of garlic added.

quick and easy diabetic lunch

last note @Jyoti my Doc did say she had to co-sign to get this to go thru. not sure what that means but does want me to let her if i have trouble getting the drug filled going forward.

well saw the Doc yesterday (sigh) we did discuss issues. He did go into that autonomic dysfunction can and will mess with one's body functions so in his area meaning the pancreas (bile and insulin) so does he know for sure if the ANS is at fault no there are other reasons just one step at a time. At first he was not onboard that i was diabetic (i was warned that this could happen) as my A1c is 5.6 but after digging thru the MyChart labs and me showing all the data that i collected he changed his mind and ordered additional blood work. he is looking for the type 1 diabetes antibodies as my liable BG swings (said this was messed up) mimic late occurring T1 DM more than T2 DM. He also did a quick exam and provoke a response when when pressing on the right side of the throat and having me swallow. not sure what this shows but i almost threw up and was not able to comply with swallowing. we did also discuss GI issues and he recommends going in to see a gastrologist. for now he won't order any DM meds as most are not very GI friendly or had other concerns so he urged to stick with a low carb diet. Right now i am stressing a bit waiting to see visit notes and lab results.

I have been taking pyridostigmine and helps but my ranolazine has been the miracle. might be worth a look.

Hi @erinliai get the same increase in muscle energy as Jyoti experiences. i can tell when i don't take the med. it has helped with my GI motility as well. Have not seen a big difference in my HR but then i do not have POTS. my dose is 30 mg x3

well update i did get in quickly to see endo (tomorrow). wonder if a doc has a doc in their back pocket Haha.

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.