Mental-Health 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.

Long Covid Awarness Day 🎗️

Sun, 15 Mar 2026 00:00:00 +0000

I’m not really big on “days”

I haven’t really looked into it, but I’m assuming the March 15th awareness day they’re doing ties into Shakespeare. Beware the ides of March. I suppose March 2025 was when I hit the threshold for long COVID (3 months in).

Regardless, I’m not big on days. My birthday is this month. I have a friend whose birthday is today. Acknowledge them for what they are, and life goes on. And by acknowledge, I mean go out, do something meaningful and fun, and life goes on. Not the annual HBD on Facebook. Not a Lexus wrapped with a bow kind of crazy capitalistic ritual. So for long COVID awareness day, this is what I’m doing. Sorry to disappoint, no luxury car wrapped in a bow or diamond jewelry.

What has happened as far as research and awarness?

I’m in a pessimistic mood as I write this. It really doesn’t feel like much has been accomplished. There is the Scripps trial, which I’m grateful to be a part of. I remember falling off the cliff over a year ago, and I’m still advocating for myself like crazy. I see and have met others online doing the same.

Furthermore, I’ve even met people hit by the proverbial long COVID bus in real life, slowly fading and not knowing what they likely have (and yes, I mention it to them). I don’t blame them, and I tell them not to blame themselves either. It’s a system of failures; you have anxiety, take Lexapro, go to therapy, and move on while on the slow decline, all the while looking exhausted while you’re conscious. Or, maybe you’re in a wheelchair at this point.

Ultimately, I don’t know about much else going on with research besides Scripps and a few non-profit efforts. I hear rumblings from the MAHA folks, but, politics aside, this health administration has been a joke more than it ever has been in the history of the United States, and nothing will come from words claiming support and empty promises to fund research for long COVID.

Every doctor visit brings new and worsening symptoms

After taking time off work at the start of my journey, or dance, as I called it, I’m still working full-time. The return was a failed success. By this, I mean I’m failing, but it is an outward appearance of success. I’m cognitively functional. Coworkers have stopped saying, “You’re fully recovered, right?” I still wear glasses and have double vision from this. I’ll be walking with a cane later this week too. The invisible illness becomes visible this year.

In the past 3 months, I’ve been diagnosed with metabolic syndrome and the adrenal thing I last wrote about. I stopped running; causing repeated vestibular failure for the benefit of not deconditioning probably wasn’t worth it. Having to make my own medical decisions and guide care while working full-time, parenting, and also advocating for my own family’s own unique medical problems is tiring and feels impossible most days. I can tell my body is shutting down. Late last year, I made the call that I would continue to do this until I died. Multiple systems in the body showing cracks at 14 months is not a promising sign.

Pass the Mayo

I listened to Mateo and his COVID is Stoopid podcast last year; he mentioned a funny and informative post about his journey to the Mayo Clinic in Rochester, Minnesota. The guy is a creative genius, in my opinion. To listen, check it out below.

Anyway, I’ve decided to reactivate enrollment in the Long Covid program at the Mayo (assuming it’s still a thing). I already live in the state and was accepted in the previous year. That came to an abrupt pause when they said I was doing 90% of what they would do anyway.

So what changed? My duct-taped care team is and has been failing me. It’s time for more coordinated, complex care. Additionally, I think my journey is pointing me to a few possible answers that may have fixes. And dismissive specialists are a barrier and not helpful. What is helpful, however, is going back on anti-IgE injections and working with a few key specialists to keep me functional. Those include physical therapy and rehab providers, asthma and allergy (the MCAS issues), and others helping me look for answers while providing treatments to keep me somewhat going.

So to you, Mateo, I say, Pass the Mayo, please. I will let you all know how it goes.

An awarness day with more days to come

I spent the day like most weekends. But I did look at pictures from vacations when I was healthy. The header at the top was on a trip to Mexico in 2006, and yes, that is a margarita. Visualizing and remembering the senses from that day bring me back to better, healthier times. Happy Long Covid Awareness Day, friends.

I hope you have done something to make today a positive one, even if it is brief.

The loss of color 🎨

Wed, 25 Feb 2026 00:00:00 +0000

What the hell is ADD?

It’s typically referred to as ADHD these days. I’ve gone through months of treating it with non-stimulants after LC and landed on a stimulant (more on this another time; it may not have been the best choice long-term for me). But that’s not what this is about. This is about the earlier months of long covid, when things were royally messed up with my brain.

I have started several posts because I have many ideas. Do I finish them in a timely manner, or at all sometimes? No. If someone has any idea on how to remedy this, I’d love to hear it!

The emotional loss of color

In the early months of long covid, my brain had changed. My mind had been altered drastically, yet I had no idea what was causing it. This in and of itself triggered massive anxiety. I would go to the ER and get sent home, being told I’m stable and don’t belong there. At one point I was told to go home, rest, and find a “long covid clinic, or something.”

On the spiral downward, it was strange. I had blips of myself that would come on randomly. I would tell myself that the gray, detached feelings were temporary. And then they just kept becoming more frequent until the color was gone. Day after day, I would wake up mid-to-late morning after hardly sleeping (its own unique hell). I could barely drive (shouldn’t have been for a period there). There was no joy or excitement. My sense of humor was gone.

Music, once a staple of my life, became extremely foreign. Love, jealousy, regret, mistakes, and passion had no meaning. The only emotion I felt was anger, and I was angry a lot. Angry at doctors and medical providers (this was, albeit, valid at times), family, friends, and, mostly, myself. This was all my fault. I was a massive failure. I couldn’t drive, parent, work, or be a husband. Likewise, I hated my life in this body, and I still do at times.

In a world of human wreckage

Music became a big part of recovery, and I’m still recovering. I started to write down songs that had meaning to me, those that I identified with during this void of self. I no longer need to use a notebook; I hear a song, and I’m reminded of the depth of hell I was in (alas, occasionally still am).

Furthermore, I started to realize that joy was working its way into the mix. Lost emotions were coming back, and not just the negative ones. If you have the energy and interest, see if you can find the emotions in the playlist below. Or, make your own. I appreciate listening to it periodically, when I’m feeling bad. I was in such a low place the first 6 months of long covid. It’s easy to forget that, but, to me, forgetting it would probably make my emotional state worse again.

Acceptance of these changes is nearly impossible

I hate how angry I got and sometimes how angry I still get. I don’t want to accept this.

Acceptance is a difficult thing. It is not admitting defeat, yet I cannot get that through my foggy head. Waves of failure still hit me hard. I can’t do what I could do before, and that needs to be okay, I know, but I haven’t really mastered this.

However, I am able to rationalize what I can do as a very positive element. I can still exercise. Walk. Run. Mostly talk okay without stuttering. I typically remember things better with aids and overall improvement from the early onset months. I can drive for now.

I miss my sense of humor from before; laughter is such a healer. I miss some friends I’ve lost. Yet, I still have a sense of humor at times, and it still continues to get better, 14 months in.

I’ve made many new friends during this. I can’t expect some of the ones I’ve lost to just come back, just as much as I cannot force myself to be the friend that I was before to someone who wants me to.

It’s okay to be angry. It’s how you let it out. Go to a smash room. Park your car and yell. Hit a punching bag. Stuck at home? Yell into a pillow. If you’re in therapy, use that safe place to let it out (assuming your therapist is okay with it, of course). I didn’t know what to do with anger at first, but now I mostly do (no one is perfect). The lack of control of a damaged body and mind is incredibly difficult and can be infuriating.

I want to say, with anger, it is an extension of sadness. I’m a guy born in the 80s. Males we looked up to constantly told us never to cry; it is a sign of weakness. I have never cried so much in my life before this (and I’ve not always had a great life for other reasons). It feels good and is okay, no matter what your gender is. Letting emotions out in a healthy manner is what our minds need.

Do you wanna leave, or something?

So, I look over this once in a while. I see the errors and mistakes I make, and I try to keep up on correcting them. The lack of focus too. My vision is still pretty screwy, and my nervous system is all over the place. Sometimes I want to give up on this blog, but it is a way for me to work on sharing my experience (secondary). More importantly, it allows me to keep track of where I was, where I am now, and where I would like to go with all of this.

I’m grateful that people read this, and I hope others can find their way forward to better days, regardless of how helpful or unhelpful this blog is for you.

You may find my long covid playlist here: Long COVID Playlist on YouTube Music

Talk of circadian rhythm 👨‍🎤

Thu, 04 Dec 2025 00:00:00 +0000

Talk of circadian rhythm 👨‍🎤

Sleep has been something that eluded me, it was like falling down a cliff in December 2024. It started with waking up at a 6 am (instead of a minute before the 7 am alarm – almost always my norm). Then 5 am, 4 am, and landing on about 2 am. When that was done, it turned into falling asleep becoming a problem. When I thought that was the worst of it, the panic attacks started. Profuse sweating, heart palpitations, impending doom, namely death. My body was on high alert, but it didn’t know what to fight.

An invisible enemy, that Rona

I’ve always been a fighter of danger. Sick? Rest and exercise carefully, paying attention to my body. Spinning out on black ice in the car, calmly brake and make slow corrections. Someone with a weapon? Grab and clear the weapon, and fight. My brain didn’t even think, it just did these things before. But there was no black ice, person with a knife, or a normal viral infection to fight. Rona is an invisible enemy, I had to find a way to fight it for me.

Benzodiazepine the life preserver I hardly knew 🛟

What pulled me through this back then was a spouse who knew I needed it: Xanax. Nothing that worked before for addressing rare sleeplessness. This includes, and am certain not limited to, melatonin, Benadryl, CBD, CBN, THC, and trazodone (knocked me out while completely clogging my sinuses, so I’m forced awake). Gabapentin and Lyrica helped early on, but gave me uncontrollable tremors even on low doses, and their efficacy seemed to wear off within a week (I did not want to keep going up).

Back to Xanax: with two screw caps of 5 and 10 pills, it lasted me six months (with some to spare). It shut my mind down so I could sleep. At first, it was 3 – 4 hours, but inched back up to 7 (my normal) after adding a more long term sleep option.

Going to battle 🥷

In January and February, I hit the sleep thing as hard as I could. Sleep phycologist (and everything that comes with that) ✔️, inpatient sleep study (nothing found, other than poor sleep) ✔️, and a psychiatrist to prescribe heavy hitting sleep drugs ✔️

What I found for me was, it’s a very complex problem. Anxiety wasn’t and still isn’t helping, and it fed off insomnia and made it worse. Xanax is not a long term solution, so I moved on to Lunesta (or as some call it, baby Ambien).

After being on Lunesta for about 7 months, I switched to Mirtazapine 7.5 mg, and it is where I still am.

What worked for me, kinda

It is an ongoing deal with insomnia. What works for one, doesn’t work for all by any means.

In order to put myself in the best possible path to success with sleep, I hit every area I could. And, I typically fall asleep fast 90% of the time. I still have occasionally wake ups. No one thing solves this for me. If I don’t take Mirtazapine, I wake up around 2 - 4 am, and have trouble getting back to sleep (those buggers are small!).

Blackout shades
Foam ear plugs
White noise
Comfortable eye mask
Logging sleep with a tracker (if it doesn’t cause anxiety!), or written - helps with false insomnia, and to try to gauge what helps or hinders it
Night guard to address TMJ while sleeping
Keeping the temp cool (67 degrees Fahrenheit)
Getting up and reading or moving to another place if awakened too long
Mirtazapine 7.5 mg
Occasional CBD with low melatonin gummy (bumps up falling asleep faster, and increases REM slightly)

The bottom line

Insomnia is unique to the individual. It requires a ton of trial and error for each case. It is trying one thing at a time for a couple of weeks, which requires a bit of upfront work and planning.

I have met folks who say even Xanax doesn’t help. For me, early on, almost nothing worked. Time and having the brain heal are important too - that alone is a hard thing to accept, I still struggle with that.

If you’re struggling with sleep, I encourage you to reach out to specialists and address it. It was a huge weight pulling me down early on, and having it mostly controlled gives me time to address other symptoms.