Dysautonomia sudden onset and recovery up to ~85%. Now stuck?

[Malkere]

TLDR:
After a bought of heat exhaustion and dehydration my autoimmune system went haywire. I took tofizopam 3 times a day for 3 months until my symptoms calmed down and then spent another 2 months weaning myself down to 1 pill every other day. I am doing a lot better, and for the most part functioning normally, but had a couple of episodes recently and wanted to ask for advice on what to do to help recovery from those with maybe more experience.

Longer version:
In June my video game addiction got the best of me and I end up going from a dehydrated tension headache into a hot bath into a hot room where I fell asleep exhausted from gaming. Usually I would have had the air conditioning on, but it wasn't. My wife woke me up 30 minutes later and I was hyper-ventilating, shaking terribly, and having trouble speaking, more our of shock than anything I think. We called an ambulance and I got sent to a hospital operating at night, that unfortunately told me next to nothing and that I should be fine now. I was pounding water waiting for the ambulance, and drank 3 sports drinks in the hospital lobby after they let me go until we called for a ride.
5 days later I woke up in the middle of the night hyper-ventilating and shaking. We called an ambulance and the same crew showed up. They warned us it would likely be a similar outcome, but we decided to go to the hospital anyway and ended up in a different hospital with a nerve specialist on call. He did a CT, but suggested I was experiencing dysautonomia, and more hyper-ventilating than anything. Explained what hyper-ventilating is/etc., and I felt much more equipped to go home and deal with things if they cropped up again. Up until that point we had been calling it a bout of heat exhaustion, but I think the heat exhaustion was more like the last straw on an already worn thin nervous system plagued by an addictive lifestyle than wasn't going to work for me anymore at 40 years old.

Over the next two weeks I started having random panic attacks, always at night, despite having never had a nervous nor anxious bone in my body, and ended up being given lorazepam to help with flare ups. I wasn't accepting to the idea that this was a mental problem, again because I've never been an anxious or nervous person, but the drugs given specifically to reduce anxiety were working, so I had to accept what I was being told. I was put on tofisopam for the next 5 months and have 85% recovered.

- For the first two weeks I had constantly "sharp" vision, like after a server migraine. I also had dizziness at some points initial for which I was given a weeks worth of inner ear medication.
- For the first roughly 6 weeks I stayed at my in-laws and avoided almost all cell-phone and television as they made me feel sick and tired.
- After that I started feeling better, went home, and I would spend 30 minutes on my computer (I'm a programmer) and two hours off. One hour on, one hour off, etc. I was only taking showers and never went outside in the heat without ice packs wrapped around the back of my neck. I meditated daily, had miso soup first thing in the morning, did vagus nerve massages, went to a acupuncturist every 2-4 weeks, and went to a chiropractor roughly 3 times a week.
- Currently I'm only taking breaks every two hours, and trying to uphold regular food and sleep schedules, as well as light exercise 3 days a week (30 minutes fast walking on a treadmill and some weight lifting)

A few days ago we went to Costco a couple days before New Years (the biggest holiday over here in Japan) and after walking around Costco, and having missed my tofisopam noon dose, it now being 6PM or so, and I also left my water bottle in the car, I started having trouble swallowing and panicking that I was going to choke on nothing. I popped a lorazepam and went back to rest in the car. Tonight I took a hot bath while looking at the Amazon New Years sales going on and think I stayed in a little too long despite drinking water throughout the day, prior to my bath, and during my bath, and started panicking a bit and ended up taking another lorazepam.
The New Years festivities were a week long, so it's understandable my body is tired from all of that, but it's still a bummer to slip backwards rather than the slow forward progression I'd been making for months.

It feels like I've been floating around ~85-90% "recovered" but still susceptible to "flares". I have stopped meditating, I'm not taking as many breaks, and I've not been upholding my in-bed at 9:30, no phone, lights out at 10:30 plan I had going on last year... I'm thinking of getting back into that routine tomorrow and am curious if other have any suggestions for things to be doing or not doing to help recovery.

Thank you.

[MomtoGiuliana]

Welcome to the forum.  It's not clear to me in your post that you have a definite diagnosis of dysautonomia.  Have you seen a specialist?  Have other causes of your symptoms been ruled out?

If this is dysautonomia--what works for me is increased salt, IV fluids, increased fluids in general, high potassium low sugar diet, small more frequent meals and more protein especially in the early part of the day.  Also reducing external stimuli.  When I am in a flare, even having the TV on can be too much.  I need quiet space.  I minimize looking at my phone, computer etc.  Reading a book I can sometimes handle depending how symptomatic I am.  Fresh air can be helpful, for me, as long as it isn't too hot out.  Also I try not to lie down too much during the day bc for me lying down a lot just makes me eventually feel even worse when upright.  As you mentioned, good rest/sleep at night is important.  When I am in a flare my sleep can be very disrupted unfortunately.

I also take a beta blocker and increase the dose when symptomatic (advised by my dr).  There are other medications that can be prescribed that can help.

[Malkere]

Thank you for the reply. I have not been to a specialist as they're pretty expensive over here, but I did have quite a bit of blood work, etc. done to check my hormone levels, rule out thyroid problems, and things like that. The nerve specialist I'm not seeing has diagnosed me.
I used to get headaches a lot more, which I was attributing to too much salt, so I got in the habit of reducing my salt intake over the past few years, but now that I'm drinking water steadily, I have been trying to incorporate some back into my water routine. I've also got a mineral powder I'm adding to my water, but it's got aspartame in it, I don't think I'll buy more when I run out. I have also been reducing my sugar and trying to take in more banana, in part for potassium, I've always had low potassium. And yes, eating too much at once can be a noticeable problem. I was doing an egg and bacon in the morning (bacon in Japan is very lackluster sadly) that was working, it's just easier to eat the granola I've been eating for decades... I will try to get back on soup and protein for the morning.

I've also been doing trapezius and vagus stretches off and on throughout the day. Spine health is ranked as pretty important over here for dysautonomia.