It’s all so complicated! I mainly just have the headache - occasional aura when it’s about to get bad.
I would say Covid had no effect. The Botox I would say makes things slightly better, no side effects. I had my first treatment at the end of 2019, then didn’t have it again for a year because of Covid.
So beginning of May 2023, off I go to MHHS in the Texas Medical Center (TMC) for my TTT.
DM actually also needed to have a medical appt elsewhere in TMC, and she doesn’t like driving in Houston (and TMC is one of the most confusing places in Houston to drive), so she scheduled it for the same time as my TTT. We can ride together and if things go sideways, she can drive home. Probably. Maybe. 
This is the gist of how it works:
During the upright portion, I start to experience mild nausea. Then they give me the nitroglycerin (which mimics being in a warm environment), and it’s game over. My nausea shoots off the chart and the room starts spinning and I’m out.
I come to in a cold sweat, having been lowered back to a flat position. But I still have curl-up-in-the-fetal-position level nausea and it’s not letting up. My head is Very Unhappy. From my perspective, it feels exactly like the episode that happened back in September. (FWIW, my KN95 went AWOL at some point there.)
They tell me they’re calling Neurologist #1 with the results. They get off the phone with him and say he’s actually going to come over from his building across the street.
I’m still a mess and not improving at all. And the small part of my brain that’s still functioning realizes DM will have an extremely difficult time finding her way to me on foot to get the car keys, let alone figure out how to navigate my car from the parking garage midway between our 2 appts to pick me up.
Remembering how it played out previously, I ask if it’s ok if I force myself to vomit. “Well, yes, but it won’t help. It’s not the contents of your stomach that’s the problem. It’s your neurology.”
Well, it does help. I won’t pretend to know why, but it was what my instincts were telling me. “Huh. I’ll need to remember that. It shouldn’t have helped, but it obviously did.”
I’m sort of coherent by the time Cardiologist #1 comes barreling in. “They gave you the wrong TTT. They gave you a basic one, and you were supposed to have the advanced one done by Cardiologist #2 personally. We’ll get you re-scheduled and make sure you don’t pay for this one.”
But then he gets waved over by the staff. There is A Discussion and much Pointing at Data on the reports.
He comes back, takes a hard look at me, realizes I am in no condition to have a discussion, and tells me he’ll call me tomorrow.
I recover enough to move out to the waiting room, and feel ok to drive home by the time DM texts that she’s done and will meet me at the car.
So the next day Cardiologist #1 calls. “So…I know that I said that you shouldn’t pay for the test, but…I think you’re going to want to pay so the results are in your medical record.”
Fainting on a TTT does not automatically mean you have POTS or dysautonomia. That specific test with the nitro is designed to try to force a faint, and it happens even to some healthy people. The more critical part is the readings that surround the faint.
The criteria for POTS are actually pretty specific:
So, I actually clearly did NOT meet the criteria for POTS.
But I didn’t just faint either.
My heart stopped for 12 seconds.
I mean, at least it restarted on its own? 
So I’ve certainly gotten all the doctors’ attention at that point. And the consensus is there is a decent possibility the same thing happened during my September fainting episode. And at least there is clearly a physiological issue. (Takes some pretty heavy lifting to call this psychosomatic.)
Next TTT is scheduled with Cardiologist #2 for July, and officially…
“syncopal episode with asystole for 12 seconds, probable diagnosis of POTS”
He’s actually not certain at all about POTS, but figured that will get me to the correct specialist in case of an emergency. Because if I faint again, we’re to call 911 and have the responders assess me. He’d already done a complete heart work up on me and knows there is no structural issue, so presumably it’s something neurological. Hopefully Cardiologist #2 has better answers after the July TTT.
Stay super hydrated. Be careful in the heat. Walking is fine, but long periods of standing still are to be avoided, especially after a large meal. Etc.
Guess I’m lucky we don’t have a Disney trip planned anytime soon. Guess I’m lucky this didn’t happen on the previous couple of Disney trips since my headache started.
Wow. I would hope it would get the doctors’ attention! Yikes.
Bloody hell, this is terrifying.
While all of this is going on, I’m still trying to figure out a route to the only adult dysautonomia specialist in Houston. Someone in UTH-Houston scheduling finally finds a note that she sees patients through Harris Health, the community healthcare provider for the county for Houston.
Harris Health intake sees her in their system doesn’t know how to book an appt with her either, but I am able to book a June appt with one of their other neurologists. I present Neurologist #5 with my nicely laid out 5 page timeline of symptoms, specialists seen, testing done, and treatments trialed. And highlight that my heart stopped for 12 seconds during a recent TTT.
She is smart enough to realize this is way outside her expertise and brings in her Attending. Apparently, they usually refer their challenging headache cases to Neurologist #3, the one I’d already seen back in 2019. So the Attending actually figured out how to get an appt with that elusive adult dysautonomia specialist! And for the very next week!
So the dysautonomia specialist is Neurologist #6. She orders more bloodwork and other testing (including another MRI) and wants me to circle back with her once that is all done, along with the results of my next TTT in July and the evaluation by Mayo AZ in August. Initially, she wants to resume the Endless List of Headache Medicines, but understands my desire to wait until we can get a more targeted treatment plan.
The July TTT with Cardiologist #2 is much less dramatic. There is no need to force a faint with nitroglycerin. Their more advanced equipment shows that my sympathetic and parasympathetic nervous system responses are out of whack. And when upright, my heart stroke volume decreases by 30%, whereas 5-10% is normal. His diagnosis is orthostatic intolerance and dysautonomia (but not POTS). Neurologist #6 will be the one to incorporate this into a treatment plan.
Phoenix is an 18 hour drive from Houston. DH and I make a road trip out of it. Drive over Sat/Sun, he’ll telecommute M-F when we’re not at Mayo, drive back the following Sat/Sun.
So on Monday we meet with Neurologist #7 at Mayo. There will be TTT #3 and other dysautonomia testing on Tuesday, labwork on Wednesday, then circle back with her for results/path forward on Friday. She had a basic awareness of NDPH, and typically follows the usual Endless List of Headache Medicines path. I ask her questions about the overlap in symptoms and possible underlying mechanisms in NDPH, ME/CFS, and Long Covid. This is something she has never explored. (I had gotten a similar response from Neurologist #6.)
Tueday’s TTT is non-eventful. It is basically like TTT #1 but they add some funky breathing exercises and omit the nitroglycerin. I get mildly nauseous but none of the monitoring picks up anything outside normal parameters. Likewise on the other dysautonomia testing they do. (They do not have the fancy equipment that measures heart strike volume or nervous system activity that was done on TTT #2.)
So I get a call on Tuesday evening that based on their negative test results, I don’t have dysautonomia as far as Mayo is concerned and the Wednesday testing has been cancelled. Neurologist #7 will discuss with me on Friday. (Yes, I was more than a little upset.)
On Friday, she says if I do have dysautonomia, it is “subclinical” as far as they are concerned. But she did do some reading on NDPH and ME/CFS overlapping symptoms, so she has curated her Endless List of Headache Medicines to prioritize those that have shown some promise across both. (I very much appreciate she took my questions about this seriously, anyway.)
But first, she recommends that we rule out a slow spinal fluid leak, which could explain most, if not all, of my symptoms. So basically the opposite of the previously explored problem of high spinal fluid pressure. (And this possibility is something I’d actually asked about several times over the years but no one thought worth pursuing.)
Although nothing has shown up on my previous MRIs, we would first do a full set of those over my entire spine (previous ones were mostly brain) to look for a leak. Those can be done in Houston. If nothing shows up, I would return to Mayo AZ for a more advanced test, a CT Myelogram where they inject contrast into my spinal fluid and then run a series of CT scans to see where all the contrast goes.
So back to Houston to finish up all the other testing Neurologist #6 ordered and then I meet with her in September. She orders some additional blood work she assumed Mayo
AZ was doing based on my appt guide (the Wed testing that was cancelled 
) and arranges for the 4 additional MRIs to look for a spinal fluid leak.
I also happened to ask her what her thoughts on on being tested for Lyme. The bloodwork she had already done tests for acute Lyme, but it doesn’t check for a prior Lyme infection and possible post-infection symptoms (similar to Long Covid), which is something my NDPH group recommends people rule out as a possible cause. “Oh, if you’re interested in exploring that, I’ll refer you to Internist #1”
And so now I will enter what I will learn is the highly controversial world of Lyme disease diagnosis and treatment.
Wow. What a roller coaster you’ve been on!
I don’t recommend putting this one on your touring plan! 
So I meet with Internist #1 in late October and she orders yet more blood work. And, to my surprise, my questions about the overlap in symptoms and possible underlying mechanisms in NDPH, ME/CFS, and Long Covid actually make sense to her. We are able to have a discussion about the different hypotheses and treatment paths being explored.
And the amount of time I have spent in northern Minnesota (lived there 1970-1988, probably visited there 50 times since) makes her think that I very well could have had an unrecognized run-in with Lyme at some point.
I circled back with Internist #1 following the blood work. She definitely thinks I have Chronic Lyme. I ask her how sure she is. The lab tests aren’t as straight forward as those for things like prior Covid infection, but the combination of lab test irregularities, my symptoms, and my travel history make her 95% certain. (Don’t get too excited about this yet.). The overly simplified explanation is there likely isn’t really a cure as much as management of the symptoms to put it into remission. The labs also show that I potentially have mitochondrial dysfunction.
She’d start me with 6 weeks of oral antibiotics and then re-run the labs and figure out where to go from there. Hopefully working through Lyme treatment would have a positive impact on my headache situation, which she thinks is likely all connected.
I hadn’t really learned much about Chronic Lyme besides it being something I should rule out and it gets mentioned in the world of complex chronic conditions. So I go home and what I learn is…complicated…
A decent portion of the medical community thinks Chronic Lyme is hogwash. But, there are definitely people that have symptoms following a Lyme infection, so CDC carved out a new term, Post-Treatment Lyme Disease Syndrome. Apparently the controversy is around the likelihood that someone could have acute Lyme and move past that stage without being diagnosed and end up with the post-acute syndrome. And also if/how to treat someone for a condition with no proven treatments.
Honestly, it seems eerily similar to all the controversy around Long Covid, just stretched over decades. “We don’t want to admit we were wrong about Chronic Lyme. So we’re making up a new term, PTLDS. And the suggested treatments for Chronic Lyme are wrong. And there are none for PTLDS.”
Ok, so where does that leave me?
Well, for starters, Mayo doesn’t believe in Chronic Lyme and thinks it unlikely I have PTLDS.
I circled back to Neurologist #6. Basically, regardless of what it’s called, she thinks it’s real and she trusts Internist #1’s judgment on whether I have it. She has helped other people Neurologist #6 has sent to her.
But she also understands my concerns about Mayo’s response. In reading some different info from the CDC/NIH, there are 2 main risks with going forward with Chronic Lyme treatment.
So we’ll put it on Mayo to figure out a better explanation to address Risk #1. And re-think things if Internist #1 suggests anything that seems high risk. (But Neurologist #6 said she’s never known her to suggest anything out-of-line. And all my other specialists defer to Neurologist #6 as the dysautonomia expert.).
My follow up with Internist #1 following the 5 weeks of oral antibiotics is next week. But in the meantime, this week I’m at Mayo AZ…
I’ll let an Aussie debunk this Aussie nonsense. He has more tweets to say on the subject if anyone needs more.
I only shared since it seemed on topic. I was off work 3 months a few years back with post viral syndrome so it interested me.
I think that’s the takeaway a lot of people are missing. Not that we’re taking Covid too seriously. That we haven’t taken these other pathogens seriously enough.
I honestly had zero idea pre-Covid just how much post-infection disability was out there.
Improving indoor air quality would be an investment akin to creating a safe water supply.
Ok, so y’all are about up to speed on my overdue and very, very long answer to the question…
“So how did the Fall 2022 booster go for you?” 
None of my specialists can say with any certainty, but my suspicions are it momentarily tipped the scales on something that was already happening in my gradually increasing neurological dysfunction.
I was already feeling like my neural system was short-circuiting. But I guess it took my heart stopping to validate that and to make the doctors take it seriously.
FWIW, I’ve also been having “word loss”. For awhile, it was just having to stretch for words that are kind of at the edge of my vocabulary. But last summer, I couldn’t come up with the word “de-escalate” for a couple of minutes, which is something I tell my kids to do on the regular. Something like that now happens a couple times a month.
The worst was a week in December where I couldn’t think of the word “container” as I was putting.away leftovers, and then was trying to describe a Pokémon to my kids and I said “You know, the one that looks like pink cotton…cotton…” “Mom, are you trying to say ‘cotton candy’?”
I couldn’t come up with “cotton candy” when I had the “cotton” part! 
At least word loss is not physically miserable.
So I may or may not have Chronic Lyme, which may or may not be a real thing, depending on which doctor I talk to. But, Internist #1 is the one doctor who most clearly seems to understand my symptom set. So I figure I’ll roll with her treatment recommendations for a few months and see if there is any noticeable improvement.
Meanwhile, I’ll still push Mayo to run all their tests to see if they can come up with a better explanation for my symptoms.
This is what they’ve been doing this week. On Monday they ran it with me laying on my right side. Thur it was my left side. They intentionally put you on a slope so the contrast flows to your brain.
My brain apparently is not a fan of contrast. Both days, as soon as it hit my brain, it felt like my head would explode and I was slammed with curl-up-in-the-fetal-position level nausea. They were able to get the imaging they wanted before letting me curl up, though.
The lingering wavelets of nausea from the Monday procedure still hadn’t completely resolved prior to the Thursday procedure. So flying home with those tomorrow will be…interesting.
Initial feedback from the Thur radio-neurologist is that they’d flagged a couple possibly suspicious areas where there might be the right conditions for a leak, but nothing obvious so they’ll go through all the images in detail and Neurologist #7 will give me a full report out in a couple weeks.
At first, he was kind of excited because he spotted signs that could indicate increased spinal fluid pressure. My dude, we chased that one down pretty thoroughly when they first found the optic nerve swelling. Felt a little bad bursting his bubble with all they had already done with that possibility, and maybe we do need to chase it further again, but I pushed them pretty hard on that possibility last time.
So there are no answers really, just hypotheses and the Endless List of Headache Meds. And unproven treatments for Chronic Lyme, which I may or may not have.
And this is the world of complex chronic illness. So yeah, it’s hard to avoid catching Covid. But living with this kind of symptom burden is infinitely worse. I wouldn’t wish it on anyone.
But, my family is watching all this happen to me, and they know my specialists have mentioned these conditions often run in families, and they still aren’t really taking any Covid precautions.
So I’ll just end this where I started.
What a journey - and you’re not done, yet!
Like you, I’m from an area where people go to Mayo expecting to deal with experts to solve medical mysteries. I know people who have some of these type of issues: DM had chronic problems due to Lyme’s disease that didn’t get treated in a timely manner. DDIL has RSD (reflex sympathetic dystrophy) or whatever the latest name is for this chronic painful condition. A good friend’s son-in-law has something no one has identified yet where he faints while standing (like POTS).
But you have many of these issues! And not nearly enough answers. Just lots of doctors and tests.
I have no answers, only sympathy and admiration for your persistence. Thank you, for taking the time to tell this saga - here’s hoping some people are able to learn something from reading it. I know I have.
No, not physically, but it is such a mentally and emotionally. I do this regularly.
Just realized that I may not have posted this here:
At the end of February, they approved an additional Covid booster for anyone over 65 that is at least 4 months out from their last one.
DM71 just went to get hers…
“Just scheduled my Covid booster. Went to get it and they said this was the same one that I got in September that a new strand would not be out until probably August?”
Sent her this, noting they intentionally use the wording “should” not “may”…
“OK first person I talked to at the pharmacy still told me I did not need anything. Pharmacist came and said. That I was eligible for a booster so I will be getting one.”
Over 1000 people in the US are still dying each week from Covid. The vast majority of them are over 65 and at least 6 months out from their last booster.
We are so very, very bad at this.
Yes, yes we are. I’m still livid about mom catching Covid in the freaking hospital and not testing for days after symptoms showed up. Why would vaccines be a priority?
I’ve read in the paper that a lot of seniors are being turned away at pharmacies and being told they were not eligible even though they were, pre this new CDC guideline.
