MikeO

9 hours ago, bumpkin said:

Well that's lame they didn't message you back, we're left in the dark on so much as it is.. but for sure hindsight is 20/20, at least we can learn from the experiences, bet they're not counting on that lol. 

This whole clinic experience was a lesson for me. wrote it off and learned from it. Just a bit more leary of Health care designed by committee. 

12 minutes ago, bumpkin said:

I had to look that one up.. I've said it before and no doubt I'll say it again, ohhh, the things we subject ourselves to just to try and get some answers to our health mysteries 😩

Sushi makes a good point, it begs the question how much of the time it's straight lidocaine being administered, or whether we could've actually been reacting to a little epinephrine in there, or if it was actually lidocaine without epinephrine and the orthostatic intolerance maybe creeps in on us once the procedure is over. 

I'll be more particular asking about it if there's ever a next time.. I absolutely told the nurse that I was relieved to hear it was just going to be lidocaine and not epinephrine due to the dysautonomia issues.. so if I still received a little epinephrine after mentioning it to them, well.. that would make for a very disappointing standard of healthcare to say the least 😣

I did bring up with the provider asking if i had a reaction to the lidocaine. The MyChart message went crickets which i guess is ok cuz i never plan on doing a ILR again or any other semi invasive procedure unless absolutely necessary. Hindsight being 20/20 i should have asked for a 14 day zio patch. 

5 hours ago, Sushi said:

Here is the thing: when you get lidocaine as a local anesthetic by default it will contain epinephrine. You have to ask for lidocaine without epinephrine  which they are usually happy to do though it requires a bit higher dosing. I also learned this the hard way but now and careful in requesting lidocaine without epinephrine. They put in epinephrine as it makes the lidocaine last longer and also reduces bruising but I have had major procedures like the surgical placement of a pacemaker with just lidocaine.

Cardiology used lidocaine when they put in and took out my ILR. can't say i felt any pain but the procedure did leave a crappy scar and took forever for the bruising to heal. I did almost face plant when the ILR was put in so i hung out at the clinic for a bit.

that's it. all i can say about the med. 

Quick easy meal to make.

Bit of romaine lettuce with cucumber and sour cream. Steak is a london broil (very flavorful).

10 minutes ago, Sarah Tee said:

I was wondering whether you can wear the ear device overnight …

The answer is yes, although I don’t think it’s required for data collection.

I suspect I would find it uncomfortable, but I’m sure it would be fine for most people.

I would have interested in seeing what my body does while sleeping. i don't think i would be inclined to wear it long term while in bed but in the short term it might have value.

46 minutes ago, bumpkin said:

And that's like the rule of thumb with hypoglycemia right? Straight-up sugar asap, and then after a few minutes pass you should throw down some kinda carb and protein to follow it up?

yes the 15/15 rule 15 carbs (simple sugar) and wait 15 minutes. then back up with a few carbs (i do 8g with a protein) so for me this will keep my blood sugar even an stable and i will not end up with a overcorrection.

Of course you could just eat a meal as well.

I will have to look for the sweet potato chips i like trying new foods. I just bought some cauliflower crackers, has a bit of a funky taste to them.

8 hours ago, bumpkin said:

I feel like I've also more-or-less figured out how to recover from those numbers, but I don't have it down to a science, it's more like I'll recognize the presyncope

This is the most important can't count the number of times i have had to sit down right where i am standing even at the grocery store (sit on the floor and pretend i am looking at stuff of the bottom of the rack) @Pistolknows this one.

Like you i am not exactly sure why i get stuck in a rut at times but i found that taking a bolus of fluids does help and to keep moving and not stand in one place too long and not use the recliner helps.

my goto to correct low blood sugar is plain sugar water (4 cubes) and then back it up with some saltines and a little cheese or sausage.

Have you had a tilt table test yet?

2 hours ago, Salt Sunflower said:

Without fail every March/April and September/October I end up in a significant Pots flare

Hi Salt Sunflower,

So just like you describe i get seasonal flares in these time frames. the itchy eyes and a super runny nose with some sneezing almost always happens but i would also get GI flare ups.

This spring i did get into a gasto and they found i have some notable inflammation in my GI tract and are treating it with pantoprazole which i believe acts just like a OTC H2 blocker but is just stronger? IDK both meds blocks the production of stomach acid.

Well anyways so far i have not had my spring flare up since starting treatment. Have you seen a Gastro for your GI?  

Not sure what is up but my email updates from stat went dead. to be honest i do not have faith in the product as to helping.

4 hours ago, Sarah Tee said:

I’m going to be trying this (cautiously) to see whether it does anything to counteract my abnormal cerebral vasoconstriction. It works in a different way to the other things I’m currently taking.

Will report back after I’ve given it a week.

following!

20 hours ago, Karen Elaine said:

I also developed seasonal allergies for the first time after developing POTS in my early 20s. And my POTS, asthma, EDS, MCAS, anxiety / panic attacks, fatigue, and pain are all at their worst during the spring and fall allergy seasons

I don't have POTS but the seasonal allergy will provoke symptoms. Like you the fall and spring time is consistent times i need to be aware. I do become vasodilated during these times so i have assumed it is from producing a lot histamine. blowing my nose can cause me to pass out or go pre-sync. i have incorporated short runs of taking a antihistamine and seems to help.

Good job on identifying your triggers and coming up with a plan to deal with them!  

yes being fasted before the tilt table test is routine.

I was going to say contacting patient relations but on facebook i see this all the time with Mayo and personally ran into the same scenario at UW madison.  

Happy to hear all is going well @MaineDoug. I see better days in your future.

21 hours ago, bumpkin said:

The fasting can def hurt, been there too.. either we eat and get symptomatic, or we avoid eating and get symptomatic

Agree.....I can tell first hand that not eating is bad. Once i figured that food is a stressor and sorted out it all out GI/Endo wise i am in a better place for sure. 

6 minutes ago, bumpkin said:

Does it ever trigger GI symptoms for you when that happens? I've had it happen before where the attack was so bad that I had to ditch the few items I was in line to buy and retreat back to the car to wait for the bloating and pain to subside, the episode was disabling

Some foods do trigger GI symptoms for me so yes bloating and bad heartburn and (profuse sweating) but no pain. The abdominal pain attacks have been on a empty stomach so far and are very disabling (thinking i am having a heart attack painful)

At the store i had not eaten yet for the day. I had a bad (sweat episode) at the Atlanta airport. eaten some pot stickers and started sweating to the point of being soaking wet. worst part i had no place to really go and ride it out so found a air conditioner duct and stood there until i dried off. was a bit embarrassing 

8 hours ago, bumpkin said:

The temp dysregulation is super miserable

When i complained about this to my last PCP she just said it was male menopause (ok) been in menopause for a decade now Lol. I get flashes or very warm in the most inconvenient places. just happened at the grocery store while standing in line wasn't sure if i was going to start sweating and have to go run off outside for a bit.

54 minutes ago, Sarah Tee said:

@MikeO, would they consider giving you an insulin pump, and would that give you more control than the fast-acting insulin?

My care team did discuss strategies. For now we will tow the line as lows (more so) are just as much a concern as the highs.

So we did talk about bolus techniques and will try to see if i get improvements. The insulin pumps do use the fast acting insulin which is not all that fast acting IMO.

Not sure how predictive the pumps really are when it comes to BG spikes but sure they do work.

1 hour ago, bumpkin said:

Even if it looks to be stemming just from the diabetes

I did question if diabetes was the cause of my issues or if a ANS problem is the root of the blood sugar highs/lows. as far as i know i have been dealing with this for years from a viral infection?

1 hour ago, bumpkin said:

I'd been dealing with mild dysautonomia already for years without it affecting my life too much, was mostly the temperature dysregulation

I do get the temp dysregulation as well. bitched about it for years. 

5 hours ago, bumpkin said:

That looks like the kinda term that could easily unlock testing access, maybe that'll be enough to get you in? Here's hoping

Doubt any testing would help. tilt table been there 3 times. qsart test (sweat test) what does this tell you? we already suspect what the issue is.

here is a link to autonomic neuropathy.

https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/symptoms-causes/syc-20369829 

11 hours ago, bumpkin said:

Are there any known studies that support diabetes as a root cause of dysautonomia?

I think it would fall under Autonomic neuropathy idk maybe @Pistolcan correct me on this.

Saw my PCP yesterday. we did discuss Dysautonomia in length. He seems to well educated on the subject since this was first brought up a couple of years ago.

I did bring up my struggle trying to get to a root cause as to why or how which the speciality clinic should have been able to explain or help with but did not.

My Doc then came up with:

"It is suspected he has diabetic dysautonomia from occult diabetes over the years." Could this be a valid interpretation?

We did also talk about that getting tested with just the blanket label of dysautonomia in mychart will get you turned away at the health care provider in my state that does the testing. so i think he put the new verbiage in the chart for another future attempt to identify a specific item out of dysautonomia besides the orthostatics.     

6 hours ago, bumpkin said:

But hyperglycemia despite using insulin?

It happens....fast acting insulin peaks at 2 hrs and then tapers off. by the 4th hr it is pretty much done working. I'm sure the late spike is i was slow to digest the food that i ate.

53 minutes ago, bumpkin said:

Did that one result in an adrenaline surge, or was it an example of the times when you wouldn't have noticed the shift?

these i will notice or better said present symptoms. increase in HR (palpitations) and blurry vision are the first heads up that the BG went high.

10 hours ago, bumpkin said:

That's gotta be really wild seeing the CGM readings, I can only imagine what it looks like 'behind the scenes'.

well here attached saturdays graph so you can see a example. i fasted until dinner and even with the insulin i still spiked 3 hours later.