bumpkin

Right, the thought of a meal at those times just tends to be intimidating cuz of the anticipation of the blood pooling to the stomach lol, but by the end of my frantic snacking effort it ends up almost being like a meal anyway. Yeah I like the sea salt sweet potato chips the best. The cauliflower food substitutes are weird ones, I tried cauliflower rice once and it was a no go, haven't touched cauliflower in its morphed forms since lol. I tried the cheddar almond crackers once and those were pretty tasty but I realized macro-wise I probably shouldn't have them again. It's so hard just to eat in this condition 😣

@MikeO That's a really great method to avoid drawing unwanted attention, it probably gets interesting depending on what aisle you're in at the time 😄 I'm really too stubborn to just sit down whenever I should, but I always catch it in time and make it to the car, and thankfully have not fainted for it (the couple times that's happened in the past trained me pretty quickly on how to sense it coming on in advance). I know it's important to sit but I have to credit the stubbornness with both keeping me going through the dysautonomia and through the times when I'm toeing that fine line between my body permitting me to stay on my feet a couple mins longer and running the risk of it suddenly overriding my will and removing the option. I'm fortunate that the presyncope gives me enough warning and that I don't have the fainting as bad as other folks here have reported. I can sense it and can also sorta 'tough it out' and recover enough in the moment to delay needing to take a seat right then. But the cost of that is always the hypoperfusion episode that follows so I've gotten a lot better about sitting sooner. Haven't had a TTT but my doc has done the poor mans tilt on me a couple times, during the worst of my condition it was POTS, but that's been upgraded to just dysautonomia. 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? Man I used to love me some saltines (when you've got GI issues it's really the little things when it comes to food lol) but ever since the dysautonomia symptoms worsened I can't seem to tolerate any kind of crackers or pretzels (the number of times I proverbially shot myself in the foot early on trying to correct an episode with the wrong carbs only to immediately cause myself another episode within the hour 💀) Sweet potato chips became my new go-to rescue carb, they're an acquired taste but I think they came up low-GI on Foodstruct so that's what I went with.

Nah, there's no cause for concern over confusion here.. this is a very sure conversation about grapefruit seed extract. Throughout the thread, the incredibly well-read Issie refers to GSE which is the name of a very popular grapefruit seed extract product, and also refers to multiple studies on grapefruit seed extract. The folks on this forum know their stuff, no need to doubt whether they know what they're discussing

It cracks me up how many times I land on your posts Mike, it's like wandering around the dysautonomia woods and finding all the trees you've etched into, like we're on the same dang journey 😂 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, realize I feel like death, take my bp with the wrist cuff and then I get back up on my feet and fight through it with maple syrup, salt water and snacks. I'm imagining there's something I'm not doing enough of to prevent it, and probably something better I could be doing to get out of it if it does happen, but I haven't figured out what 😮‍💨

Heya Salt Sunflower, I'd think this would make a lot of sense since it would just be introducing environmental 'seasonal histamines' vs all the other histamines we regularly encounter in our diets (histamines are a tough one to avoid). I was just reading earlier how for women, monthly cycles and endometriosis can play into the GI system.. it's crazy how much everything can affect the gut (and vice versa), but at the end of the day it's all hormones.. if stuff's not in balance and some of us are more prone to mast cell activation, we'll be flaring up whenever we're dealing with histamines.

I would def check with your drs on that one, I'm not certain but I would imagine since many people use benzos to treat their POTS and help manage their symptoms with them, I'd think it would stand to reason that taking the klonopin beforehand could probably mess with the results. Medical anxiety is awful, but the TTT also doesn't seem like the type of test you wanna have done in vain or have to do over a second time.. I'd double check with whatever office is administering your test and see what they recommend. And if they tell you that you do have to go into it without the meds, if you feel like you really need the answers from this TTT, you may have to try to mind-over-matter it to get through it, maybe close your eyes and go to your happy place til it's done. I don't know why medical testing has to be so traumatic so much of the time, there's gotta be better ways to get answers than half the stuff they put us through. But sometimes we have to get it done and allow ourselves time to recover from the experience and just hope that the results help guide treatment in the long run. Good luck!

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

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.

You may not have the answer to this, but just wondering out loud.. Would the poor oxygenation over time be something that you would've been able to detect using a pulse oximeter along the way, or is it more like a case of the blood oxygen readings being normal but the body not utilizing the oxygen effectively? It's interesting they pose that theory, because from what I understand usually when patients ask if their chronic tachycardia is potentially going to cause their organs harm or pose problems for them down the line, they're told that it won't or shouldn't. Wish doctors would be more honest and just say they don't really know

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 😂

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 😩

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

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!

I wonder what causes the spike in those circumstances, I can't really wrap my head around that.. When it comes to the dysautonomia, I understand that the low blood volume can cause the hypoglycemia symptoms and make blood sugar stability a struggle. But hyperglycemia despite using insulin? Maybe it's just that I don't know much about diabetes to begin with and there's not enough blood to my brain this week to learn anything new, lol

That's just so onerous, like what more can you even do at that point lol you're already minding your trigger foods, taking your insulin, and it still spikes on you.. Did that one result in an adrenaline surge, or was it an example of the times when you wouldn't have noticed the shift?