toomanyproblems

I had my second and Moderna last Wednesday. My arm was more sore than last time and I had a hard time controlling my headache. It was fine. I'm glad I'm done.

Thank you!

Will these ever be available to people who didn't register?

I'm sorry this happened to you. It's so unpredictable what adverse effects people have. Even healthy people. I've had the first shot with no problems except a sore arm. I go for my second next Wednesday.

This phantom smells such as smelling smoke when there is none is also being reported in a high percentage of the so called long Covid patients. A significant percent of them are also experiencing dysautonomia type symptoms. IDK if it's in the dysautonomia long covid patients but probably. It could be a symptom of autonomic dysfunction. These patients could fuel more research into autonomic disorders.

I get weakness, especially in the front of my thighs. I'll start out pretty good some days and then my knees will start to buckle. I can feel it start to happen so at worst I just slowly collapse to the floor/ground. When this happens I sometimes have to lie there and build up enough strength to get up. In all cases rest makes it better, eventually and in the moment. It just feels like my muscles won't go anymore. My arms may eventually become weak but usually they do better than my legs. There's nothing I can do to make them go in the moment. It's very much like myasthenia gravis. I have not been diagnosed with MG but have had ocular MG for decades.

So to continue this I do have a pretty red swollen place where I got the shot which is normal. Last night I had flashes of a feeling of impending doom. I actually have this feeling a lot but mostly in the mornings and it's mostly continuous whenever I have it, not flashes. I was just looking up vaccine side effects and feeling of impending doom can be a constitutional symptom. Just FYI for those getting the shot.

I just got my first shot this AM. So far just sore arm and headache (which is normal for me).

FWIW I generally feel better in the mornings. WRT HBOT -- I did 80 sessions in a medical unit five years ago. It wasn't actually for POTS but I felt better in lots of ways. It did not correct the high HR on standing but I was not as symptomatic.

I have the ear clips bought from a previous thread recommendation. However the only thing I have to use them with is what is probably a glorified tens unit but it's called an inferential unit. It's called the IF-4000. I've actually had a tens unit but this one works better for back and spasm problems. I've looked into scientific articles for the settings to use for this unit with my ear clips but it seems extremely complicated, even with my science background. Is there anyone with a protocol they find useful, particularly with the IF-4000 unit I have? Any help would be so much appreciated. I feel my sympathetic overstimulation is getting worse by the day and I don't know where this ends up if it continues. Feel free the PM me if you don't feel comfortable sharing settings publicly.

What does an award winning herbal program even mean??

Yes, like protein shakes. There are a lot of commercial products that you can mix with milk or other liquids that you can live off of. I also bought a Vitamix to grind up vegetables and fruit very fine. I still have to be careful of how much fiber is in there. I can only use half of some of the commercial products because there's too much fiber for me. I can drink as much water as I want. In general, fiber, fat and sugar delay stomach emptying.

I was diagnosed with a pretty bad case of gastroparesis by a gastroenterologist while in the hospital for the same. They did a gastric emptying study (described above), a colonoscopy and endoscopy but you probably don't need all that. I was given Reglan, a commonly prescribed med for it. Like Domperidone, it has its limitations. I quit taking it after a few weeks when I started having symptoms of tardive dyskinesia, a known complication. While my symptoms from delayed emptying can be somewhat waxing and waning on a relative scale, I was only able to consume liquids for a couple of years. After I started getting IVIg over three years ago, I was able to eat more solid foods at least some of the time. I now get subcutaneous Ig because of Covid. While I certainly can't eat normally now, I adjusted to my restrictions. I think my gastroparesis is considered fairly severe in terms of delayed gastric emptying. They wanted to surgically put a feeding tube in me in the hospital but I refused. With research and support, I was able to figure out a flexible plan. Each case is different. Other than over the counter acid reducers and 60 mg mestinon 3x a day (which I was already taking for something else) I don't take any meds. I just control it the best I can by controlling what I eat. I was eventually seen by a big shot gastroenterologist who determined my case was caused by autoimmune autonomic neuropathy. The fact that it improved with the Ig therapy lends more credence to that diagnosis. One thing to remember is if you're too miserable, you can always not eat for a while or switch to liquids. If you have it, maybe your case is mild and you won't have many restrictions or will find a med that works well for you. Good luck!

Hi Pistol, Your description of autonomic seizures sound like one step further of my jack knife type jerking when my whole body kind of convulses into a fetal position then releases into a straight stiff position. As I said above I accidentally picked one of these episodes up in the middle of the night while videoing to see if I was grinding my teeth. Whenever this happens it wakes me up. Often after I've finally fallen asleep exhausted after the leg jerking so I may not be picking up the progression from leg jerking to this jack knife thing. This. I haven't known how to put words to this feeling but it feels to me like my brain is slamming around in my skull. This is something that happens pretty much strictly during the day for me. My brain usually feels kind of swollen with pressure when it happens. I feel crazy writing these things because my neurologist would probably think it's crazy. But just hearing someone else here describe it feels very supportive. The other thing that's happened to me like this is suddenly I see fractal pieces of what I'm looking at that don't seem to fit together for a normal picture. It's very weird. It can last five minutes or so. I basically cannot see during this. I've had ocular migraines for years and this is not what they are like. Maybe this is a further version of those. But not something I see described anywhere in the scientific literature. I often feel my symptoms move laterally. So one thing might be better but then something else equally as bad takes its place so I'm never feeling better overall. And yes, all these weird unexplainable symptoms must overwhelm the docs since there's just not a lot out there about POTS yet. The silver lining to Covid is a lot of those "long-haulers" are ending up with POTS so we may see more research on and understanding of it because of these shear numbers of people now presenting with it around the world.

Wow, I am VERY interested in response to this right leg getting bigger thing. My right leg, actually my entire lower right quadrant has had significant edema for seven years. I've been to a number of specialists over it and nobody knows why. It start slight but over a year's time seven years ago, progressed to quite a bit of edema along the entire leg and upper pelvic area. the last time I saw someone over it was in Feb, before the covid shut down. It was a cardiologist (head of the dept) who I'd seen before for a procedure to rule out vessel blockage causing it. In Feb he said he didn't know what it was and that he'd never seen anything like it before. Some docs look at it and because it's only one leg, try to call it lymphedema (without any tests to support this) but I'm pretty sure it's not that. For one thing, it still pits, soft or hard depending on how long I've been upright. That would be very uncommon this far out for lymphedema. I am thin FWIW. I am very interested in hearing if anyone else here has this problem. Maybe I should start a new topic.

I understand all of this. I didn't just have an infusion and decide it wasn't worthwhile. I'm not saying it's not worthwhile. I still do it. Even over the past few weeks I've been regularly doing them. My point, which I guess got missed from my not communicating it well enough or rambling too much, is what is the core problem, and can we actually cure it by breaking the cycle of imbalance well enough. Is there a tipping point we should strive to get closer to in hopes of restoring normal control over our sympathetic nervous systems? Or are there elusive core problems that will be difficult to tease out and address for actual cures. Not a lot is known about POTS. I know you've had an increase in quality of life due to LR infusions. I'm sure this would be true for many if they could get them. Please understand I'm not trying to argue that they're not helpful. In my case and I'm sure yours, every treatment that adds even a little to quality of life can combine to make us more functional and closer to normal and that's a good thing.

I've often wondered if one could *force* ones parasympathetic nervous activity to overcome sympathetic over-reactivity. For example if you did yoga and meditated for x numbers of hours a day, could you influence the autonomic nervous system control failures present in hyperPOTS? Is this something that is a cycle that can be broken and better balance between the sympathetic and parasympathetic nervous systems established that could lead to a more permanent fix? Does it matter how long this bad cycle has been going on or how debilitated you are? Does it matter why you have POTS, which is a syndrome meaning not one specific disease but a something that can have a variety of causes? I believe it's well known that the younger you are, the better chance you have for recovering from POTS. I actually think about these things all the time, because I tend to always be looking to the future for things that help. Unfortunately, I have some personal evidence that whatever is the problem with me causing this syndrome (almost certainly autoimmune in nature in me) it keeps trying to re-break with the things I've tried. One example I'll give for this unfortunate conclusion is the many sessions I had doing something called QEEG based neurofeedback with a very skilled practitioner. I won't explain the science and technique, and I don't have a good link handy, but you can look it up. I could definitely feel the progress, and it helped me while I was doing it, but my brain went back to being broken as soon as it could. In fact we had trouble making any progress after a certain point. You could see objective evidence of this in the tracings. Another example is trying to correct low blood volume with lactated ringers IVs. I've tried this several times (over time) and while it might make me feel better temporarily, I just end up peeing off the fluid until I'm in the same hypovolemic state again each time. I've done some other treatments or techniques too, but these are two that come to mind right off. That these various things I've tried and ultimately failed only ending up being a patch suggests that there is a core problem that is not being addressed and fixed. I'm not saying these things aren't useful, or that they don't help perhaps to temporarily break the cycle and improve control and balance over the broken parts, I'm just always trying to figure out the core problem. The core problem causing POTS is likely different in different groups of us, depending on why we have POTS. And whatever it is, it appears to be a moving target in many of us in that there are periods of time when we have flares and periods of time when we are better or more stable. Are these times when for whatever reason, drug treatments, happy events, IV fluids, yoga, etc., have broken the cycle enough that our parasympathetic nervous systems can scratch and claw their way back into the picture more? How can we recreate that sympathetic/parasympathetic balance that we need and make it stay regulated. I think many/most of the findings in studies of POTS and similar diseases are just showing the downstream effects of this unbalance, not the core cause. But I would be really, really happy to be wrong about that. The blog post by the OP has some interesting information and conclusions from studies. I've tried to increase my "happy time" because the last few years have been very stressful for me emotionally and physically. It certainly helps and I'll take something that helps even if it's only a patch on the core problem over nothing any day. It could be breaking the cycle well enough for long enough *is* the fix of the core problem. I just wonder if any Tibetan monks, who are supposed to be the happiest people in the world, have POTS.

I have this problem and it's getting worse every year. There are fewer and fewer things I can handle watching on TV and I seem to not be able to tolerate any conflict at all in real life. I'm also very noise sensitive at times and somewhat noise sensitive always. I've always had a really good sense of smell and that too overwhelms me often now. Even something that smells good is distracting for me. I have hyperPOTS and I feel like my nervous system is breaking down and unable to respond appropriately less and less as time goes by. I have no idea what helps. I just avoid the things that bother me. I don't know what else to do. I don't understand why somebody can't discover something that just dials down our sympathetic nervous systems from inappropriate response and works all the time to do this. I understand there are drugs to basically spot treat these symptoms. I want something to correct the problem.

I don't get flu vaccines. I haven't had one in 30 years. The last one made I had me sick for six weeks after. I will get a covid vaccine but only if Dr Fauci says its safe and effective. I do live in an area where it's high risk and getting worse. I'm not sure how many "regular people" have access to the best treatments right now and I think my chances of making it if I got it would be slim without heroic treatment. The best are the monoclonal antibody cocktails but they will never have enough of that for regular people. It's just not possible. Hoping for a vaccine and a better spring.

If you search there have been a number of times this has been brought up over the years if you'd like more responses. Personally, my pulse pressure frequently becomes very narrow. Twelve is the worst mine has been that I can remember rn but my BP was 52/40 at the time so things weren't going well in general. But I can have a pulse pressure of 20 daily at various times over the day. I've had one that was 100/82 the dr's office even, and mentioned it to the nurse, who repeated it but was not alarmed. I think it's a thing for many POTS patients, but I don't think there are many medical staff educated about what it actually means.

Can people describe exactly what happens with these likely autonomic seizures?

Thank you for sharing. An in vitro study like this can be valuable for further studies but it's never going to be the same as an in vivo (inside a living being) study. It's like a jumping off point.

Here's a recent threat that may or not be related:

I had an EMG years ago for myasthenia gravis. I would NEVER go through that again. I have no idea what causes this jerking but it seems better since I've started IVIg and now since Covid subcu Ig so a nurse doesn't have to come to my house every two weeks. It helps a lot of my problems. It still does happen though and like the OP said, it tends to go on for a few days (sometimes more) and then disappear for a while. I have the jackknifing/convulsing whole body thing on video. I was just videoing to see if I was grinding my teeth bad at night and picked it up. Although I could probably never find the video now.

This is EXACTLY what happens to me. I don't normally go in for much but this was like torture. Exactly like you said, like a build up of electrical energy that became extremely uncomfortable and then my body jerked and it discharged. Only to start again. It was impossible to sleep and as soon as I fell asleep I was jolted awake again. Over and over all night. It started before I went to sleep and continued even after I was so exhausted I fell asleep between episodes. It seemed to get better by morning. It happened sometimes during the day as well. And also like you said, usually it was my legs but could be my arms, any part of my body or my whole body on occasion. Sometimes it was like I was convulsing. If it started to involved more of my body my whole body would draw up like in fetal position then kind of jackknife and straighten back out very stiffly. I was referred to neurology but somehow the referral went to the muscle people instead of the seizure people. I don't know how this happened because I was supposed to be referred to the seizure people. The initial complaint they got was listed as "muscle spasms," which I found a little insulting considering. Not to take anything away from muscle spasms which I can have and are certainly painful. But nothing like this. Anyway the muscle neuro people seemed to not know what to do with me given all my other problems. They referred me to the seizure people and ordered a bunch of tests, like some overnight sleep deprivation EEG or something. After spending four hours at that appointment only to have them tell me they had no idea what was wrong, then referring me to the seizure clinic where I should have gone to start with, I never went back. I was in a place with insurance at the time where I would have had to pay for all the expensive testing myself. This was a couple of years ago. It still happens but less often and not as severe. IDK why it waxes and wanes but it is still a problem. One thing I found is anything that's an antihistamine causes it with a vengeance. Even stuff like mirtazapine that only has mild antihistamine properties. I take vitamin E and selenium and I think that helps. I'm so completely frustrated with the neurology docs that I just can't bear to be put through the ringer on this only for them to not happen to pick it up on that particular night and say no problem. I do have other seizure like problems sometimes. But I'm already on a ton of of gabapentin (3200mg a day) for other problems which is a seizure med so I figure nothing is going to be changed to help more. I've also been on topamax, another seizure med that didn't really help except to make me not want to drink coke anymore. I'm sorry my response is so emotional but I feel emotional about it. I feel like none of the docs in the different specialties have a comprehensive idea of what all can happen in POTS and it frustrates me to no end. I do think this is POTS related. Just my opinion. I wanted to respond thoroughly because this so exactly is what happens to me. I'm so sorry you're going thought this. I hope you find help and please let me know if you do.