MTRJ75

I believe my autonomic issues (I won't even say just POTS) is related to autoimmune/autoinflammatory issues, so in that essence, it is secondary. I've gone through a brain rewiring program and still practicing the things I've learned, which have served more to help me deal with complications and flares a bit better sometimes than improve much. I've also visited functional doctors and there was a neurological chiropractor there who had me doing balance and eye movement/focusing exercises every day for about six months. They did have some therapies that helped, but only temporarily and were far to expensive to keep up. The stuff they gave me to do at home never really helped much though.

That's strange because there always feels like there's a heater on the back of my neck.

Didn't make it. Worked out an arrangement with the doctor where I'm covered for the rest of the year, but need to find a way to get in to see him in the next few months.

This is interesting. I know that blurred vision is one of my symptoms, so it makes sense that this might be one of the paths through which the condition might be improved.

Okay, I've heard of these before, but only in the setting of some kind of doctor's office. I'm surprised businesses are allowed to do this privately with the assumption that there are certain risks of doing it too often.

I forgot to ask: What is a "hydration place"?

I don't think he'd do well in a kennel. He's not small and a little bit crazy. However, I took that idea and just found a site that you can book people to come check in on your dog. It's kind of like an uber for dog sitting. I absolutely want to go, I just don't know how I could have possibly handled an hour and a half trip in the same condition I was in this morning/afternoon.

Yeah, you definitely nailed two things here: Unconscious tensing and tightening, which we all do...which may even be necessary. And lack of blood flow. Low blood volume? I'll stretch as much as I can and hit the chiropractor (although I did go an entire year without adjustments last year). I even bought some kind of apparatus that you put around your neck and turn on and it's supposed to stimulate blood flow, but the benefits seem to be minimal so far.

I get what you're saying and it's a great hospital, but getting stuck there would be problematic because: 1 - I have nobody to take care of my dog. 2 - The friend who is driving needs to be home by a certain time for something with his kid. He can't get stuck there. Also, this is not that type of doctor. He's oral medicine and deals specifically and only with my dry mouth symptoms from Sjogren's. Whenever I've asked him anything outside the realm of his expertise, he's simply referred me to other doctors. So being extra sick in front of him wouldn't help at all. It's just that he prescribes one of the few medications I couldn't get by without and no other doctor I've gone to even knows what it is. The one bright spot about COVID last year was that we were able to do a tele-med visit, which the doctor won't do anymore.

I'm in a predicament. I have my yearly check up at UPenn tomorrow afternoon. It's an hour and a half drive. I have someone to take me, but I have not been feeling well at all. I've been frequently getting what feels like stomach bug symptoms every day (drenching sweats, shakiness, need to use the bathroom constantly, today included vomiting without even eating anything). If I had had these symptoms today while traveling, I would have been in a whole lot of trouble. However, I absolutely need to get there to see him or I lose my Sjogren's med. I know some others here have had to do some travel for doctors when not feeling well. How do you do it?

Yup, coat hanger ache and tightness. Constantly pulling muscles in that area and when I do, it hurts so much I nearly throw up. Chiro always says I'm knotted up pretty good in that area.

I just had a disaster of a trip to CVS to pick up this month's bucket of meds (usually have them delivered or picked up, but thought I could do this since I was already on my way home from the doctor). Stood in line for less than 5 minutes with drenching sweats and nausea. Almost had an argument with someone who cut in line, who said I was standing too far back from the person in front of me to actually be in line. Normally I wouldn't have even cared, but it extended my wait in line by a couple of minutes. Had some difficulty on the short drive home. Add the simple act of briefly standing and talking at the same time for more than a minute to the list of things that fire up my SNS. This is something the judge asked me about driving during my disability hearing though. I was afraid I was going to lose my license. I told her I don't pass out, always have someone with me when I'm driving a distance longer than 15 minutes and always get enough warning to where I can pull hold up for the remainder of short trips, but there may be h*** to pay afterwards.

No, this is going to be my next line of questioning with the neuro. And perhaps testing the entire system like @Pistol said, but also like she said, who knows if it's one of those things that looks fine via testing, but is actually still mess.

Movement cause or worsens my vision. I must be the opposite of you. So Cort over at Health Rising wrote more about the RAAS and the hypothesis that high Ang II levels are wreaking havoc. https://www.healthrising.org/blog/2021/07/29/long-covid-chronic-fatigue-syndrome-hypothesis-merging/ So Ang II is directly causing Leaky Gut. I would imagine that trying to heal the gut through diet and supplements wouldn't do much good if high Ang II levels are still blast ing through. Bolded is what I've tried already with either little effect or was unable to keep up at suggested dosages due to cost. I've read one protocol that called for Ubiquinol (COQ10 precurser) that would have cost me a $60 bottle every two weeks alone. Can I ask for Ang II to be tested? Would testing show accurate results or do I have to be particularly symptomatic when tested or need to be tested over a specific period of time?

But everything makes me feel bad @Pistollol. Waking makes me feel bad. I should probably start avoid that.

Unfortunately, the only thing I know makes me have a better day is not leaving the couch. I've read many people say that it gets better, but I feel like my body keeps getting worse and I'm just becoming more accepting of the fact that I'll live what's left of my life alone on the couch or in bed. I keep trying to convince my body that things that I know are a trigger aren't because I don't know why they would be a trigger. In a strange way, I guess it's some sick version of exposure therapy. Telling myself it will be fine because it doesn't make sense that it wouldn't be, but it never is. Example: Sunshine. Doesn't even matter the temperature. Beautiful 75 degree day with a nice breeze. I go out back with the dog before the shade hits in the evening. I'm out there five minutes, come inside and suffer the rest of the day. I get why sunlight would affect my vision, by why would it cause all the muscles in my body to tighten up and my nervous system to crash?

I have a lot of weird sweating stuff going on. I've always sweated a bit much, but then a few years after the Sjogren's stuff started, I realized that I stopped sweating. At least in situations where I would normally expect it. Now, I have drenching sweats like you describe, but not necessarily when I'm supposed to. Example: I could go outside in the heat and not sweat, but come back in and then lean over to write something down and all of a sudden I'm drenched in sweat. It seems like I only sweat when my body perceives some kind of mental or physical stress, which includes after meals, if that makes any sense. And it's absolute torture.

I have it (just one I think, some have double?) and after reading so much about how important it is, the most recent stuff I've read suggests that a lot of people are probably making a bigger deal out of it than it is because they're finding so many people have the mutation. I seem to remember reading something about glutathione and even remember trying that for a while (and it wasn't cheap), but didn't notice any difference at all.

This is the video which led me to my lawyer, who won me my case. Specifically, the judge said it was his line of questioning for the vocational expert (which was one question really, that she didn’t have an answer for) and the questionnaire he asked my neurologist to fill out that convinced her. I believe Michael is Ohio based too.

Someone else originally bumped it, not me. I'm not even sure it's a sugar thing now. Might just be that any little stimuli causes my SNS to erupt (eating, moving, sunlight...)

Yeah, I know @Pistol and that's generally the way it goes, but even something as small as a couple of eggs early afternoon will set me off. It's not taking much. Also, I'm nauseous most the time and unable to prep meals for myself when often, so I eat when it's available. I'm basically accidentally intermittent fasting without seeing the benefits.

This is exactly what set me off yesterday, pancakes (gluten free) with syrup. However, I was set off the day before by eggs or whenever I have an early in the day meal (or to a lesser extent, even if I don't). I've never considered blood sugar could plummet after eating, especially after eating sugar. Then again, I don't even know because while I deal with severe sweating and weakness, I certainly don't have hunger. My sympathetic/fight or flight is in full blown activation. My body wants to empty out (nausea, drynesss) rather than take more in (hunger). Maybe I should try to force something in and see what happens, it's just such an odd concept to me that sugar can cure what sugar may be causing.

I know this is a decade plus old post, but I have significant post-meal symptoms (body heating, nausea, sympathetic activation) to the point that I only really eat one meal per day, but never really thought to take by BP post meal when my body feels like it's on fire.

This has not been a successful endeavor. Five drops...nothing. Seven drops...it does something for the muscle cramps, but then twice has sent me into a state of nausea and light headedness. Haven't yet found the dose yet that helps with sympathetic system over-activation (the non stop sweating, even if I'm freezing, blurred vision. etc).

I've found this interesting in perhaps explaining the vasodilation and low blood volume effects of some flare ups. I'll quote what I think are the most pertinent parts, but the entire article is full of pertinent information, starting with "sympathetic nervous system hyperactivity and ß2AdR receptor problems" then "the kallikrein-kinin-system (KKS) which produces bradykinin" and reduced sodium reabsorption into the kidneys. It eventually comes down to high sodium levels in the cell, dysfunctional NA+/K+-ATP enzymes https://www.healthrising.org/blog/2021/07/09/hypothesis-chronic-fatigue-syndrome-wirth-scheibenbogen/ In sum, I have no idea what I just said and there doesn't seem to be any immediate solution proposed, but it sounded important.