dysautonomia from occult diabetes

[MikeO]

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.     

[Pistol]

1 hour ago, MikeO said:

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

@MikeO Diabetes is known to be a root cause of dysautonomia, so this may be your answer. 

[bumpkin]

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

If there's some solid documentation out there for it, maybe that's something the doctor could include in their note in the chart to help nudge the testing provider to accept the diagnosis.

Or maybe getting a letter from an expert, I've found sometimes it takes finding a well-respected specialist (who's not likely local), and doing a telehealth consult to ask for a brief letter supporting the reasons your conditions are related. 

This verbiage stuff is always like a game of Who's On First trying to figure out what answer they're looking for.. just so you can get in the door to try to get what you need..so frustrating 😩 Good luck!

[MikeO]

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.

[Pistol]

@MikeO As I understand it diabetic neuropathy can affect the autonomic nervous system, so I think you are correct.

[bumpkin]

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

[MikeO]

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 

[bumpkin]

12 hours ago, MikeO said:

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 

Yeah I hear ya, I just meant it's a better diagnosis to list that versus the blanket label of dysautonomia you said they don't go for.

Even if it looks to be stemming just from the diabetes, maybe they'll have some other diagnostics to throw at it that could help guide treatment and improve quality of life more than just what the insulin has done for it.

I think it's rarely just one thing with this stuff, I'd been dealing with mild dysautonomia already for years without it affecting my life too much, was mostly the temperature dysregulation and occasional MCAS attack, until I had a sudden change in diet and supplementation that basically pulled the rug out from under myself and the dysautonomia went full-blown. Now my symptoms are explained by a handful of different things 😩

[MikeO]

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. 

[bumpkin]

On 4/4/2024 at 2:45 PM, MikeO said:

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?

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

I hear ya, that's been my thought too.. the chicken or the egg.. it could go either way. And ever since the POTS symptoms showed up, my bedroom air quality monitor is constantly showing high CO2 like I'm hyperventilating/hypocapnic without knowing it. I'm sure it all ties together with the hypovolemia but been feeling too braindead to make heads or tails of where one starts and the other ends. Need to take better notes at the drs, I'm certain they've gone over this stuff but I'm too ADHD for things to register fully. 

Mine also began as viral, 7 yrs ago about 6 mos after movin into a house that had mold (didn't know of it til 5 yrs there).. had food poisoning that tore my gut up for a month, was super nauseous so the dr doubled my Prilosec dose to 40mg which took yrs to come off (big part of me knew I shouldn't go along with that but i wanted to trust the white coat..) about a month later I got hit with Epstein Barr Virus for the first time in my life.. and been dead tired ever since. The misdiagnoses stacked up for 3 yrs as I got worse.. Oddly I don't believe I've had any colds or flus since then (besides covid in early 2022 which hit pretty hard for a couple wks). 

The temp dysregulation is super miserable, my partner (sick with ME/CFS about as long as me) deals with the worst of the overheating, is like a human space heater and gets super ill without enough air flow. And when you have to share a living space, even family members don't understand it sometimes, they think it's like a comfort preference but it's a major trigger. Got in a car with friends a few months ago in the cold and they cranked the heat.. it was uncomfortable but I wasn't gonna complain, told myself it was alright and would only be a few mins, but just as we got back to their driveway my pulse flew up to 145, body wasn't having it 😂

[MikeO]

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.

[bumpkin]

1 hour ago, MikeO said:

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.

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. Headed home and realized it must've been from MCAS, maybe 30-40 mins prior I had eaten a cheap to-go sandwich in the middle of running errands, and processed lunchmeat is notoriously high in in histamine. Have done my best to avoid high-histamine foods ever since. 

[MikeO]

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 

[bumpkin]

39 minutes ago, MikeO said:

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 

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

And pot stickers are so good but that sounds brutal. Airport's not the most accommodating place, when you're stuck somewhere operating on someone elses schedule you just do what you have to. When ya got no options and your body's breaking down on you, you get over lookin weird in public pretty quick, and anyway the judgy onlookers just take their own good health for granted, they don't understand real problems lol

[MikeO]

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.