MTRJ75

Can't be that simple, can it? Otherwise this would be the first thing cardiologists would be recommending.

Glad you caught it. Lyme could be a cause for Dysautonomia, as in, you might have POTS caused by Lyme. If that's the case, it's probably good news that you've been able to find and treat the underlying cause. I'd add that you're lucky they diagnosed POTS as the cause for your trip to the ER rather than anxiety. The one thing I have learned about Lyme though is that some of the coinfections are quite common and I've run across some alternative/functional practitioners that tell almost everyone they have Lyme, It may not be a bad idea to attack those coinfections anyway, but in my case, it wasn't really the answer.

What a positive approach to all this, but that's awful that this happened to you and that the issue is known, but still can't be fixed. I'm hoping there's eventually a way to improve this for you.

I wonder if it's easier to just group these things into two sets of two categories: 1) Things that are caused by actual damage or an actual attack on the body (ie autoimmunity) or Things that are caused by dysfunction, but no actual damage. Then 2) Things that can be controlled or influenced by your own thought processes (or brain rewiring). or Things that can't be controlled or influenced without outside help. --- There has to then be some sort of answers once you have this down. As I've heard many say on here, things usually, eventually get better and the proof would seem to be that I don't see many people that have been here for a decade, still suffering at obnoxious levels. Those that have been here a long while are have generally been more stable and are here more to help others (and God bless you). Or aren't here at all anymore and have presumably recovered to the point where they're functional enough they don't need to be here anymore.

Today's flare/crash - drenching/clammy sweats, nausea, digestive issues, wooziness or light-headedness, blurring. Went up to 7 drops 45 minutes ago. No effect yet...or at least not a positive one. Can't lay on the couch all day either. Got some stuff around the house absolutely has to be done before tomorrow, so gotta find something that helps.

I don't get what you would label normal pain (like joint pan) as one of my worst symptoms, but there is severe aching and burning all over my body, along with severe cramping or squeezing/constricting sensations (I still don't know how to accurately describe it). Mostly muscle discomfort, but so significant that I would label it as in the pain category.

Someone correct me if I'm wrong and I probably should actually look it up instead of just posting what I recall, but I like to live dangerously. Isn't BHS when some kind of severe emotional trigger becomes the cause for an actual cardiac issue?

I had actually never thought to ask until I'd seen a post here about it awhile ago and realized that it might be connected to the condition, but like I said, other healthier members of my family experience it too. It's not something that's ever been high on my priority list of symptoms and if it's connected to the autonomic dysfunction it doesn't make a difference how I go about trying to improve altogether.

These episodes are my main concern and if it were able to quickly dispense them, it would be a miracle, second only to finding something that stopped them from occurring in the first place so that I could get on with life.

All the time. For years and years and years before I even ever had any symptoms. Others in my family who have no significant health issues also have this in their hands.

Ah, this is exactly the type of thing I was looking for...although, currently not a problem for me specifically. Thank you.

Posted this in another thread the other day: https://www.sciencedirect.com/science/article/pii/S1566070221000588?fbclid=IwAR143FeT7sMs3VVmdMB-RrGwVkX-YIZnqnDaNZqlvpOlJL21SuGoE3mxR_E But also, have you tried a neurologist. The cardiologist really only prescribes the heart rate modifying meds for me (along with sodium chloride tablets) with the neuro dealing with everything else. Of course, it's another challenge to find a neuro who understands the condition or is willing to learn too.

Okay, so I guess I should have given more information. I have a tincture that's 5-1 THC/CBD. Don't know what strain. Not planning on using it much for sleep (melatonin has been working pretty good), but more for my daily crash/flare symptoms. I know it's great for pain, but kinda wonder if it can have a reverse effect on stuff that has to do with vasoconstriction/dilation. Like, are there certain instances where I definitely shouldn't take it because it might make more more lightheaded or something? First time I took it with a flare up...2 drops...nothing...2 more drops...nothing Second time for a burning, aching flare up/crash...5 drops...not much. Last night for nausea, upset stomach...6 drops...seemed to help some within a half hour.

Those who use or have used medical cannabis, what symptoms do you use it for or does it make better and are there any it might make worse?

Doesn't feel like that. This more feels like a sunburn on all my muscles. Have never been able to decipher a pattern either. It can come on out of nowhere or it can be lingering all day to the point where I feel it coming. Part of the problem, as I was telling someone yesterday, is that there are no ups. I don't have good days and bad. I can't remember the last day I felt okay and the closest I get (tolerable), I generally ruin it by thinking I can do something. I would LOVE to have good days with my bad. I used to think hot weather was a trigger, but now I'm starting to think it's not any specific type of weather (unless extreme), but rather stark changes in weather.

More:

Journal article accompanying the diagram with further explanation: https://www.sciencedirect.com/science/article/pii/S1566070221000588?fbclid=IwAR143FeT7sMs3VVmdMB-RrGwVkX-YIZnqnDaNZqlvpOlJL21SuGoE3mxR_E

Ironic that Dysautonomia International posted this graphic today. But now my question is, which symptoms are each mechanism responsible for:

When I read the title, I thought this was going to be about a phone call setting off symptoms. It's unbelievable where only our minds immediately go. But that's great news! Congratulations and good luck!

You're talking about ATP @Sushi? I read about that in Dan Neuffer's book I think. But in that case, it would simply cause the exhaustion. Would that cause the tightening, burning muscles and all the other symptoms I mentioned at such a severity? Although, I think I remember something being mentioned about lactic acid in that theory too.

Link to a journal article summarizing recent studies concerning autoimmunity in POTS. https://link.springer.com/article/10.1007/s00415-021-10649-9?fbclid=IwAR2Zxz-d9ZAKdOdbMN8c3XW8kU5vAsVbxUXu3D1c9AzOQiiLpyjLizmchLY I want to say I came across some incredible revelation here, but I don't know how this immediately helps anybody.

I use a scoop of Ultima electrolytes first thing every morning with my meds and then once a week or if things get really rough I have Drip Drop Electrolytes which was endorsed somewhere or other for some type of condition. I can't remember. I also can't say how much of a help it is or not because it seems to vary. I also don't know what to do in these situations sometimes. I find it strange that I'll often be up and things don't hit me hard until I sit down and try to relax. Lying down might be a wonderful option if I had the option of being non-functional. Today, I actually drove (a short way) during a flare up because it felt easier than arguing with my family why I can't again. Maybe I also wanted to drive the point home to myself that I might be more capable than I thought if necessary.

Just to add a couple more things I forgot to mention, where I'm going with the brain rewiring stuff I mentioned above and before in this forum is this: https://www.healthrising.org/blog/2021/06/12/amygdala-retraining-program-improves-symptoms-biology-fibromyalgia/ And when I ask the neurologist about most of the above, his general answer seems to be that nobody can predict a dysfunctional autonomic nervous system.

I've felt much better over the last week. In fact, I had a pretty stressful day the other day where I had to spend 3 hours at the eye doctor, seated in uncomfortable chairs, followed by 2 hours in urgent care while my mother got x-rays after falling down the stairs (she's doing okay). I was actually pretty surprised how I came through the whole issue without any major issues. The last two mornings I've had less pain that usual upon waking and have actually had an appetite in the morning, a very rare thing for me. So, I made swhatome bacon and eggs, sat down to eat, cleaned up and then sat back down to work again...and that's when it hit. Every muscle in my body aching to burning to cramping to nausea, digestive emptying, clammy sweats, mouth and eyes went dry, field of vision started to blur or feel like when you get hit in the head or drink too much. The standard flare up for me with the works after minimal muscle activation and standing on what I thought was a good day. I know I've made many of these posts over the last year or two since I've arrived here, but that's because I continue to actually have anxiety, ironically after my system generates all the symptoms of an anxiety attack for an hour or so, because I'm still struggling to understand what exactly is going on in my body and why some things trigger it and others don't. The weather is beautiful today and has been the last few days, so I can't even blame heat or rain. This is what I currently understand to be potential causes or mechanisms in the body: - lack of blood volume or - lack of proper blood flow (perhaps because I just ate, blood is pooling in my stomach and not getting to my other recently activated muscles or brain? Improper constriction or dilation) - a chemical reaction in the blood caused by standing or minimal activity that shouldn't happen (too much lactic acid? But why?) - actual nerve damage (autonomic or peripheral, but if this is the case, shouldn't it be more consistent?) - dysfunction (the wrong messages are being sent from the brain to the nerves - is it because there is a neural dysfunction or actual damage in pathways? ie...is this something we might be able to fix by rewiring our brains? This would be the best case scenario, right?) - immune system is attacking and causing actual damage to the pathways (in this case, mental rewiring would have no effect) Sometimes I can tell when something is likely coming later on in the day if I even try to move off the couch. Sometimes, like today, I think I'm feeling well enough and maybe even have for a few days and I just don't know what I can and can't physically do that day and that's maybe what frustrates me the most. Would I have to have a flare or crash induced as I'm getting blood drawn for some kind of reaction to show up in bloodwork? Am I missing anything above or is it a combination of factors and how do I figure out what the exact mechanism actually is (because we can better target it if we know what's actually happening of course).

I think this is a misnomer because the condition effects predominantly females and has many symptoms similar to those of anxiety AND because the symptoms of this physical disease can cause anxiety and depression as a side effect. As a male, I've run into all the same issues and had to have a psychiatric expert, who was actually well-informed on the condition, contradict the assessment of an independent medical examiner (and several other doctors, including my most recent primary) that this was a mental condition rather than primarily physical.