Medication on A long dance with Rona

Migraines and the headaches 💊

Tue, 12 May 2026 00:00:00 +0000

The migraines and mental health issues

Migraines have been a constant companion throughout this journey. They were always there in the background, but over the past several months, they’ve moved to the forefront. Between the vestibular issues, the autonomic dysfunction, and whatever else my nervous system decides to throw at me on any given day, the migraines have become one of the most debilitating symptoms I deal with regularly.

Worst. Crash. Ever.

With the latest crash, it has led to severe panic attacks, and unresponsive benzo treatment to say the least. Additionally, the depression and anxiety have skyrocketed. I have gotten to the point of nearly giving up, almost like I did early on. I feel incredibly hopeless, and am working on this with medications, family, friends, support networks, and outpatient mental health services as best I can.

I say this because if you need help yourself, get it. If you need to be admitted, do it. We may feel very alone in this fight, but we’re not, and we need everyone we can get to work on getting through this together.

Emgality

I started Emgality last week, which was a trade from the Scripps drug trial injections (with everything getting worse, it was on less medication to manage - no idea if it was working). The latest injection is a CGRP inhibitor — basically, it targets a protein involved in migraine signaling. The hope was that it would reduce the frequency and intensity. So far, results have been interesting. Some days are better than others, and it seems to be trending better.

Pramipexole

I’ve been slowly titrating up on this (currently at .75 mg), with the hope of reducing RLS (which came back again a few months ago). Sometimes the RLS is controlled, other times not. It is hard to know what is helping here, but I think this also helps with mood and the headaches.

Xolair

I’m still taking monthly Xolair injections as well; which seemingly addressed the headaches pretty quickly in the early days last year (but not the neck pain). My IgE numbers doubled after a stopped this for a few months, but no more. I will be doing these shots at home monthly.

Mirtazipine

The course of this was paused during outpatient mental health stays. I am on 15 mg again, and sleep seems to be returning to near baseline. I still cannot nap (that’s crazy town for the part; mixed thoughts, not awake or asleep).

A few other med changes, but everything is up to date under my [[treatments/index|Treatments]] page. Of which I’ve had some medical journals to show potential efficacy (not medical advice).

In conclusion

The PLF surgery did go well (what’s a 4 hour vestibular collapse to a former runner anyway?). I worked on a draft of this, but I’m not ready to post it yett; some unknown variables yet that I need answers to.

I hope everyone is doing okay, this is not a pleasant experience to navigate. I’m losing my own identity at this point, as well as family and friends (of which I do not fault).

Mayo Clinic Long COVID Program: Insurance Barriers and Leaving the Scripps Trial

Wed, 06 May 2026 00:00:00 +0000

Mayo Clinic Long COVID Program: Insurance Only Covered 3 Days

Turns out I wasn’t actually at the Long Covid program at the Mayo Clinic but with an internist. My insurance only covered 3 days after I begged them numerous times that yes, I am dying, and they aren’t fixing me, just diagnosing me with more and more severe conditions. Thanks for that—the Mayo wanted 6 months to a year. Now I’m back to nearly bedbound, and I can’t work or drive myself.

The 3 days were just about like this, mind you; I’m 44 (still damn Roosevelt, though):

Burns goes to the Mayo Clinic

I had to pay for a follow-up with an internist out of pocket because it was too much for insurance to try to get it covered for more than 3 days. The Mayo wanted 6 months to 1 year to figure it out. My PCP wanted them to treat me. My insurance squashed this because it was inconvenient for them to do anything. All after I had several meltdowns about my deteriorating condition.

Autonomic nervous system dysfunction is a helluva ride, but I didn’t get to do that ride at Mayo (unless you count the sweat test; holy cow was that intense). The cardiologists I met were pretty good; I chatted with them about the cardiac remodeling happening with my heart, metabolic syndrome, and the HTN. They also noticed an adrenal lab slightly off.

Anyway, some silver lining. I did get into the Long Covid program in July. We’ll see what state my health is in then, and what insurance decides.

Falling Behind: Long COVID Care Coordination Gaps

My long COVID playlist keeps getting bigger. And I still have double vision. So much for moving past that borderline awful song (sorry, Foreigner).

But let’s talk about the latest addition. Def Leppard, Two Steps Behind.

Def Leppard - Two Steps Behind

My duct-taped care team is always behind me. They don’t try to meet me ahead but wait two or more steps behind. It’s not a bad thing, I suppose; at least I have insurance still, for now.

Upcoming Long COVID Treatments and Appointments

I have surgery coming up for a PLF repair (I didn’t believe my original care team and kept pushing for answers)
- I’m hoping for a lot of relief, but not holding my breath
I’m in the Long Covid program at Mayo Clinic in July 2026, finally
I’m getting a new neurologist in September and some assessments and scans in July, concurrently with the Mayo.

Leaving the Scripps Drug Trial, Starting Emgality for Migraines

I am separated from my immediate family, and living with family that is as supportive as they can be. I can’t keep up a trial, and coordinate my own care. I’m nearly bedbound again. Likewise, I had to let this go. I hope the research continues to progress in the treatment of Long Covid. Not only that, but I would have been a great fit for the drug itself (no idea if I actually got it) with my new metabolic syndrome (despite not having a lifestyle that doesn’t fit it at all).

That said, my ENT has put me on Emgality for migraines. So, I’m trading one injection for another.

PLF Surgery Update Coming Next

Hopefully I have good news to share on the PLF surgery coming up. I was able to get cleared pre-op, barely, with all the health stuff I have going on. It took 18 months, but I have a surgery in sight finally.

I intend to put my treatments up here soon too. It’s such a cluster; it’s difficult to tell. What works for one may worsen things for another. Also, new symptoms like trouble swallowing, worsening vision, and vomiting and heaving. I’m still walking with a cane for the most part and slowing down.

The Mental Health Toll of Chronic Illness

I don’t have the bandwidth for the whole bit, but this has been the most difficult thing I’ve ever encountered. I have never felt more alone. I started to give up and run away. Likewise, I confessed to mistakes I’ve made so people would leave me, only to realize I left them. I did a lot of damage and hurt numerous people who love and care for me.

I spent most of my life running toward danger. When you don’t know what it is, it burns the mind. My autonomic nervous system has yet to find an exit, and it’s killing me with metabolic syndrome, low quality of life, chronic fatigue, and pain, all getting worse each day.

Getting help was hard, but worth doing. I don’t know what tomorrow brings, but I know I made some terrible mistakes I hope I get to make up for, if I can only get better.

My duct taped care team, a new direction 🩺

Sun, 29 Mar 2026 00:00:00 +0000

Analogies, cause

Before my deterioration, I used analogies a lot. I related to music a lot (part of recovery, as I mentioned before). This has come back, to a degree, and I think it is fitting for you all, too. That said, I’m looking at going back on disability from work, and walking with a cane.

Nobody wants this

I am not a doctor, so I can’t speak for one. That said, I can say what I have to say about myself and my experience. I didn’t want this. I don’t think anyone wanted this.

What I think my duct-taped care team has been doing (my opinion—stupid poor communication and drama shit):

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A post shared by Netflix UK & Ireland (@netflixuk)

In the image below, I left out ENT, but they’re actually hiding behind those boxes saying, “You’re fine, and not having a stroke.” Constant self-patient driving and organization is and continues to weigh heavily upon me. All while dealing with constant brain fog, worsening hearing and vision issues, dizziness, falls, and, of course, pain. Working full time, being a husband, and being a parent.

How Cee Lo Green fits in to United States Health Care and my Long Covid playlist

The girl I love is the care I, and you all, deserve. The pain in my chest is my stage II hypertension and, ultimately, worsening metabolic syndrome. Why do my health care providers want to hurt me so bad?

Cee Lo Green - Forget You

More ERs

Update: I went to the Urgency Room last night for some strange red spots on the left side of my scalp, and chrustiness and discharge above my left ER. DXed with Herpes zoster, and now on Valtrex.

I went to the ER last week for worsening hearing loss. They said you’re probably not getting permanent hearing loss; but it is a neurological cause. Tube clear, minus a dark matter—this is most likely perilymphatic fistula (PLF), more to come on that—again, what do I know, I’m not a doctor. Cool, can you review a CT scan done last time when they forgot a critical piece of information? No. Makes sense, emergency medicine and all.

I have been having chest pain for two weeks. Ended up back at the ER yet again. I’m fine for now in cardio land (sure, I have metabolic syndrome and stage II hypertension, but that’s not emergent). No interest in anything else that would be an emergency (worsening hearing loss, double vision, dizziness, falls, etc.). Although you get a fall warning band for staff to pretend to care. Fine, emergency medicine, blah blah, don’t care about the other emergent symptoms if you’re not dying (but I am, it’s just not the emergent dying they need to do anything).

A new old primary returns

I have been working with a primary care provider (PCP) for most of 2025. I had to switch; I couldn’t drive, so I went with one who seemed to listen to me. They are overworked, of average intelligence, and a puppet to do things for me (which, in hindsight, was needed at the time). I guided my own care through my 2025 PCP. Experimental treatments? Sure, they saw the medical journals I compiled for them, even once saying, “You’re doing my job.” only to later ask me, why did they prescribe those prescriptions again?

The new old one, I’ll call Chuck, always listened, had compassion, intellect, and while we didn’t agree 100% on everything, they were an ally. I’m glad to have an ally back.

Runaway Train, and while it’s extremely relevant to me right now

Soul Asylum - Runaway Train

So, this duct taped care thing isn’t working. I now have metabolic syndrome, worsening hearing loss, and autophony—the neck pain, crepitus, and other issues roll on, despite nearly weekly PT, acupuncture, massage, and light neck chiropractic. My body and mind have adapted as best they can. I used to be a first responder; I was trained for perceiving and responding to threats, yet this all falls pretty flat when I can’t see the threat, so I sought it out.

Don’t be such a pussy, pussycat

I did a thing in late February 2026. Yes, the line above is from The Pitt, and my favorite character of the show, Myrna White—I don’t actually mean this to apply to anyone but myself 😄

I started on a journey going through all of my medical records for the past 16 months, and then beyond. I found anomalies, of which I posted here before, but that is just the tip of the iceberg. Before I jumped in, I realized that I am, in fact, dying; the ongoing autonomic nervous system problem is causing chaos in my body, and I will eventually succumb to this damage. The good news on the heart front from the recent ER visit is I still have time.

Adderall, research, and forensics

I used to work in forensics (not the pathology kind, the digital one), which still drives a lot of my curiosity, and was possible thanks to Adderall (used with a prescription and appropriately, of course). I paid for it in chronically low HRV for several days later, which likely ties into my low corticosteroid problem. Have you mentioned HRV to a care provider? They are usually clueless and dismissive about this to me. So, I continue to manage it on my own with the Scripps drug trial Garmin watch (which is an estimate at best).

What I found was very interesting. I got DICOMs of MRIs, CTs, and audiogram reports. I wrote Python scripts to calculate bone thinning and styloids and used AI to assist (say what you will about that, but when you have brain fog and are still intelligent, the mix is quite helpful).

Likewise, I became obsessed and ran separate methodologies, which all came to the same conclusions. Needless to say, this week will be a week of appointments before the Mayo to see if these findings have merit. Skipping over the likely substandard care done by some of my providers and having to demand imaging and tests that they read ultimately as normal (they appear not normal by far), the outcome this week will be quite intriguing, to say the least.

For now, until a short time later this week, my advice is always to get full reports from your care team. Not the stupid after-visit summaries that say, “You’re fine” or have hypertension, and the long list of prescriptions and supplements no one updates (I cannot do this myself; providers ignore my requests). We all know we aren’t fine, and guess what? Most providers chalk this up to LC still not being well known, or it’s just long Covid.

Final thoughts, Mayo

I’m holding back on my anger and frustration for now; I need further information. A photo of a controlled dam above is indicative of where I am at. Once I get further information, I’ll adjust accordingly to what is the most effective use of my anger (likely getting some things finally addressed).

I am set for the Mayo next week and very much so looking forward to it. I have been organizing things for the trip; hopefully I can talk to at least one provider who even knows what HRV stands for.

End of year update 📋

Sat, 10 Jan 2026 00:00:00 +0000

Where have I been?

Whew, 2025 is over, and I have been neglecting things here. My apologies! I am still working full time, and the holidays have been crazy. I managed to get through Thanksgiving masking, Christmas Eve and Day but ended up in the ER on December 25th (more on that later).

Drug Trial Update

I started either a placebo or tirzepatide on January 6th, 2026. There are a combination of emotions: scared, excited, worried about side effects, or, if I get the placebo. No matter what happens, unless the side effects are intense, I will take the weekly injections for the purpose of being a participant.

I will not be updating much about this for the remainder of the trial unless something drastic changes; after all, it is a double-blind trial. I’m really the perfect candidate for this. Adderall never works the same day to day (sometimes it suppresses appetite more often), and mirtazapine makes me binge eat occasionally (and now Hayley Williams singing Mirtazapine is stuck in my head 😄). No idea if it is tirzepatide, placebo, or the meds I’ve been on!

December ER visit

I did not mention this here yet; I have been back to ENT for ongoing tinnitus in my left ear and mild hearing loss. It is a swooshing sound and is triggered both when I look right and also at random. Additionally, my last audiology visit back in the early days of long covid picked up pretty minor unilateral hearing loss.

I had a weird episode where the tinnitus was so relentless, and I got pretty dizzy, and overall symptoms were changing (has never happened before). I was leaning toward waiting it out, and of course, in hindsight, that would have been fine—but not something to mess around with (thanks, wife). Furthermore, I made it 8 months without a visit to the ER, which kind of bums me out going back—but it’s worthwhile, even though we all know where this is going.

The ER doctor was interested in post-COVID issues and did a few out-of-band tests (after asking) for them to really understand my symptoms. While I appreciated that they were understanding and offered to help in any way they could, they were like the 8th doctor I’ve seen who, after doing some vision tests, said, “Man, that’s wild. You have divergence, double vision, and are cross-eyed—it’s like your brain just won’t let your eyes track well at all.” That’s cool that you all see and confirm these problems, but I actually want them fixed; it’s been over a year 🥹

I had a head CT with and without contrast and labs before (to make sure my body can properly expel the radiation from it). I have never had a CT in my life before this; it was impressive how quick it was. The warm peed your pants feeling wasn’t too bad with the contrast and faded pretty quickly.

In conclusion

The radiologist compiled the report and sent it to the ER doctor. Nothing notable other than normal wear and tear, arthritis of the neck (I’m 43; this is not normal), and mild congenital deformities that shouldn’t cause major pain or issues like I’m experiencing. Onward we go.

What a crash feels like these days

I have been having crashes every few weeks all through last year. Lately they haven’t been too brutal. But when I forget to take medications, they hit hard. For example, I didn’t take my mirtazapine (or Remeron, or as I call it, Car Ramrod), guanfacine, or glycine last night. I didn’t really sleep at all—severe rebound insomnia. I felt like crap and like I was nearing zero most of the following day. Pulled it mostly together with a short nap. It’s crazy and depressing to think that my body gets so messed up without medications. I wish it didn’t have to be like this.

The moral of the story is to make crashes less severe. Take your meds. Nighttime meds are harder for me; my stimulant has worn off, and I always have a million things to do before I go to bed. It’s been hell to live life normally before this, and now it’s all around worse.

I hope to get better at updating this more frequently. Instead of scrolling social media over and over again (thanks, Adderall!). Here seems to be a much better place for my mind to be.