bumpkin

Don't know why I'm surprised to find that it can happen in ways we can measure, too.. Today it finally dawned on me that my blood oxygen has taken a slight dip ever since the biopsy. I made note of it the day after the procedure, and I just ignored it and figured it'd bounce back in a week or whatever, but it's stayed there, unless I do breathing exercises to help bump it up, but it always goes back down again later. And it's not like I really believed all that oxygen was actually getting into my cells or being used effectively anyway when it was at 99%, but dang.. seeing it at 97% all the time now just feels like I dropped a $50 bill somewhere lol, really needed that crappy baseline to stay where it was.

I have to wonder if those people had "lidocaine without epinephrine" or if they got the lidocaine that isn't truly plain lidocaine, like how Sushi pointed out that we apparently need to be painfully specific about the "without epinephrine" part. I definitely don't doubt that people could react to "lidocaine without epinephrine" too though. ME/CFS is tedious, I suffer from it but I only know as much as I do because my partner is a very severe (primarily housebound and mostly bedbound) ME case -- so I've got a whole portfolio of laminated printouts prepared in case we ever have to go to the ER, including a few on anesthesia that I'd found on the American ME/CFS Society site (they cite info from Dr. Cheney and Dr. Lapp and others). I have a tendency to assume this stuff doesn't apply to me as much, but after that experience the other week I know I've got a lot more reading into it to do.

I've wondered this too, I can still taste it but it occurred to me that getting too used to it may eventually change how I experience salt. There's times where I can sense that I'm craving it and I assume those are the times my body needs it the most. But the rest of the time I just add it to my water throughout the day because I know when I forget to do so my body will feel terrible for it. How long would you say it's been that way for? Keep in mind other stuff like brain inflammation for example can affect your taste, like the way covid can. I bumped my head the other week, the resulting headache lasted four days, and I swear for those next couple weeks all my usual foods tasted so weird.. I got a specialty coffee one day and politely sent it back because it was way off and I thought the person must not have been trained correctly (lots of locations really aren't), but another worker remade it and it still tasted wrong, and then they both looked at me like I was crazy 😣 and now a few weeks later the same employee made me one the other day and it tasted right again (super grateful for that, eating and finding an appetite is so hard in this condition as it is). Mike's got a good idea there, if you can afford to get that salt in a different form where you don't necessarily have to taste it, maybe some time apart will bring it back?

If it helps any, it looks like there are anecdotal reports in the reviews on Drugs (have to click whichever medication name and scroll way down towards the bottom til you see the User Ratings & Reviews section, probably worth checking them all out since they'd work similarly), I tend to take those reviews with a grain of salt.. but I also tend to think "where else on the internet are they gonna let the average person share their experiences with this stuff" Someone makes an interesting mention of it being helpful to them in this HealthRising comment section (can't link to the exact comment, but if you search the page for PCSK9 it'll come up). Dealing with dysautonomia I always have reservations about injectables in general.. If it's not a good match, then you can be in for a bad ride. One med they had me on several years ago negatively affected my hormones and took months to cycle out of my system. Another one triggered my EBV.. it's stressful to have to wait weeks or months for a dose to wear off to be rid of its side effects. Definitely learn all you can going into it, hopefully you get to settle on something where the benefits outweigh whatever side effects for you.

The tingling description reminds me a little of low CO2.. do you notice whether you hyperventilate? Could look into doing breathing exercises, there's guided breathing apps with different patterns to choose from to see what works for you. There's also the old paper bag breathing (looks dramatic when they do it on the TV, but sometimes it can help). I keep brown paper lunch bags on hand for this reason. I feel like the muscle twitching is common from what I've read over the years, I get it sometimes and my partner also with dysautonomia gets it a lot, it can happen in ME/CFS and that condition is dysautonomic in nature. There's a Phoenix Rising thread about it here.

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. It looks like my chart just says it was 1% lidocaine, I remember the nurse telling me there'd be a pinch and a burn but that's all they told me about it. There's a good chance that the nurse wouldn't have necessarily known for certain whether it contained some epinephrine since it sounds like just an odd standard where they still call it lidocaine anyway.

It's ok lol that is apparently the most common biopsy people have done in this condition adter all, but the thyroid nodules would also make a lot of sense since everything seems to lead back to hormones being outta whack.. But with my thyroid numbers being in normal range (and the normal range of thyroid labs apparently not having much value since my symptoms seem to really point to thyroid problems) I only learned of the thyroid cyst from a car accident neck MRI.. I doubt any doctors would've ever looked for a nodule otherwise. They say it's really common but they can also cause issues for people, it'd be nice if the medical field would catch up with that, kinda wonder how many folks are struggling with unaddressed thyroid concerns simply because it's not the script the doctors follow. Good luck with your derm appt, just remember don't be afraid to remain firm-but-polite if they try to sell you on anything that you might not be entirely comfortable with.. You can always give yourself time to think about it and come back. I've had drs spring painful things on me a few times where I wished I'd gone into it with more presence of mind to decline. But they just seem so friendly and agreeable when they ask to catheterize you on 10 seconds notice 😭

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 😣

Thank you Sushi, this is what part of me started wondering too, because it was such a bad ride.. I thought maybe there was a chance I did receive something I shouldn't have, even though it sounded like it was supposed to be just lidocaine. I will have to remember this if there's ever a next time, thank you 🙏 I just remembered I can also try looking at their notes in the portal, maybe there's a chance they specified what type of lidocaine they used.. it looked like a fairly detailed report on how the procedure itself went, I just didn't read too far into that since I quickly realized it was just a report and not the lab analysis, the actual results were posted the next day.

This was actually for a thyroid nodule fine needle aspiration biopsy, they made several passes to take multiple samples, lots and lots of needle-jiggling around in there. Afterward it felt like I'd taken a really nasty kick to the neck 🤕 Then I wondered why I knew what a hard kick to the neck felt like, but remembered that's just the type of life experience you gain growing up with brothers 😅 I've read about those skin biopsies recently too though, they don't sound like a good time at all. I think I had what might've been a kinda similar one done once for a skin spot that turned out to be nothing, but they did that procedure on-the-spot minutes after I brought it to the dr's attention.. I swear that dr couldn't whip out the lidocaine and forceps fast enough to squeeze that biopsy in before my appt was over 😂

Thank you for the reply -- Yeah, I definitely sat up slowly like usual, but had to stay put for a bit to wait out the worst of the shakiness before heading out.. It was embarrassing but the nurse understood how some nervous systems just don't take that kinda stress too well. Once I got back to my car I still had to sit for awhile before I could get going again. I was caught off guard by how much pain I was in too, they were a very empathetic team and actually tried to give me breaks between samples, but I told them to please keep going til it was done.. Taking breaks would only drag out that panic response, and I needed that part over with asap. But even with pushing through it couldn't be over soon enough lol, the trauma was done. Whole thing kinda stung worse after learning the results were inconclusive too.. I'm sure they're going to tell me to come back for a do-over, but I don't think I'll be getting another one of those done.. can't guarantee the next one isn't also inconclusive, and I can't afford to be any less functional.. this week's been a bit scary, feels like my old baseline gets farther away every time my nervous system takes another insult 😔

I had a biopsy done almost a week ago where they used lidocaine as the local anesthetic.. I hadn't been given any anesthetic (local or IV) in several years, last time would've been long before the dysautonomia began, but I never had trouble with 'em in the past. Knowing dysautonomia can change these things, before they got started I asked about what anesthetic would be used. When they said they'd just be using lidocaine, that at least sounded better to me than epinephrine, so I wasn't worried about it. My nervous system had a really rough time throughout the whole procedure from prep to finish, but I got it over with and came out of it with just the pain from the biopsy itself (the lidocaine wasn't much help) and the trauma from having to force myself to hang tight and ignore the pain and the overwhelming fight-or-flight response for 15-20mins. I didn't have any apparent reactions otherwise and they watched me for a few minutes and sent me on my way. I recognized the stress of it was immense on my system, so I anticipated being a little run down for the next day or two, but the following day my energy seemed way down from its usual low, and the brainfog each day since then has been worse. Vitals have stayed normal aside from my blood pressure being low (low for me) half the time, hanging around 90/60 - 100/70 when supine and when standing. My pulse oxygen seemed to take a slight dip from 99% to 97% at times but stayed around 98-99%. They said to watch for signs of infection, but I haven't had any fever, and the area where they stuck me seemed to heal up just fine within a day or so (still a little sore, but nothing looks or feels off). Has anyone ever had a poor reaction to lidocaine? I'm wondering if it maybe was just the overwhelming stress of it all that's wiped me out more than usual, or if the lidocaine could have upset things a bit. I know it doesn't take much in our condition, but this biopsy experience seems to have set me back a week.. It's been much harder to function, and I don't have much to go off of to know how to turn it around since I'm not really sure of the culprit. I guess it could also just be hormones messing with me again and the timing could be a coincidence, it feels like it's always something..

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.

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