MikeO

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. 

13 hours ago, bumpkin said:

I'll have to give the barley a try, I think I've only ever had it in beer form

Haha beer is good  

Lack of energy comes from If you don't have enough insulin, glucose builds up in your bloodstream rather than getting into your cells to provide energy.

My Endo does not feel i am as much insulin resistant but i have a deficient release of insulin when food challenged.

so in my mind is a kinda vicious cycle. get high blood sugars that remain unused in the bloodstream so no energy to do anything and get tired so back onto the recliner napping it off while the pancreas finally catches up then because of the inactivity none of the glucose goes to the muscles because they are already full and ends up in the liver as stored fat then it's time for bed so i never burn the fat. next day rinse and repeat Haha. My world according my Mike.

Yeah be surprised what your body can/will do to maintain homeostasis. sure this is what mine has figured out when my BG drops from 180 to 105 and i am not even the wiser it happened. 

Sorry to hear that you have some GI issues sure it is throwing a log into the middle of the road as you try and sort thru issues. I have been dealing with some of my own GI woes and was put on a PPT med to deal with some inflammation. one thing that helped me before the Gastro Doc working out the issue is i avoided acidic foods like tomatoes, salsa, pastes and anything that has citric acid. made a difference in the short term. I too also did a food reset, well more than once more like years. only took me three years to finally get to the root of some of it.

side note if any of your providers tell you "it's just the way it is and to drink more water and get up slowly" fire them as they probably won't help.  

5 hours ago, bumpkin said:

I was feeling like garbage today, and by this evening I decided it was likely due to not having enough carbs the past couple days.. so, not a fan of feeling like the walking dead

Been here. I was to the point of not eating or eating very few carbs and fasting a lot just because food was not always a pleasant experience for me. this IMO is stressful on the body and aggravated some of my symptoms. Haha was to the point it felt like i could hardly get out of my own way.

Like you after eating a (bad and even with good) carby foods my heart rate would increase (along with other symptoms) and would last from 30 minutes to 4-5 hours. it was like clock work.

My Endo gave me the talk that some carbs are needed and to ignore some of the diets that promote getting your energy solely from fats and proteins especially if one has other health issues. He said that i don't necessarily need to hit the recommended 145 carbs a day but would need to find out how many works for me. he suggested around 80 carbs is good. i average around 60-80.

Not sure why insulin has stopped my post meal palpitations outside of keeping my blood sugars in range but i will take what i can get. i definitely have 10 times the energy since starting to use it.

6 hours ago, bumpkin said:

The glycemic index database I consulted beforehand tried to warn me that they had a high glycemic index and load

This is a good resource and works to some extent. i found that barley does not spike my blood sugars much at all. i use it in soups as a substitute for rice.        

@Sea otterI tried using a wedge pillow and for me it was very problematic to use and lost plenty of sleep using (two of them side by side).

I kept working my way off the wedge pillows and had to kept adjusting my way back on them. i ended up buying a body pillow to help keep myself positioned up on the wedges. over time my lower back started hurting. i have to assume i was putting pressure on the spine as it is the point where it was bending for the elevation..

Beyond something i would even consider.....

@Sarah TeeGreat job with being persistent advocating for your care.

I really hope the test will give you the answers that you have been looking for a long time.

Please post back as to your progress and results. we are pulling for you!

@MaineDougit's awesome that you are seeing benefits from the surgery so quickly. very positive.

Sure your support team will keep you in check so you don't too ahead of yourself. it's important go slow at first and heal up. before you know it you will be back out hiking and walking the dogs.

Keep us posted as to your progress! Good Job so far!  

8 hours ago, bumpkin said:

I hadn't given it much thought before your post prompted me to wonder more about it, but I'm gathering that some of us must have a little too much insulin to start with, and some of us don't make enough and need more to balance out..

Thanks for sharing the articles. kinda makes me wonder if folks with Dysautonomia struggle with blood sugars more than one would think.

Here is a article that @Water Loverhad sharded. it is a interesting study that was done with POTS folks hypothesising that worsening of symptoms maybe glucose related. sudy is backed up by tested data.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9010371/#:~:text=In Postural Tachycardia Syndrome (POTS,venous return (upper panel).

https://www.ahajournals.org/doi/pdf/10.1161/HYPERTENSIONAHA.121.17852?download=true 

Thanks for sharing. Is there a clear fix for this? I so to many times a suggested hypothesis.