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.

Migraines on A long dance with Rona