Xolair 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).

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.

Warning about CYP3A inhibition, Paxlovid, and Corticosteroids ⚠️

Fri, 13 Mar 2026 00:00:00 +0000

TLDR

Probably shouldn’t have taken corticosteroids and Paxlovid; it can suppress the HPA axis and may cause secondary adrenal failure or secondary Cushing’s.

A few light bulbs go off

I had a few lightbulb moments recently. One specifically was seeing a cardiologist for a POTS test (which was negative with orthostatic testing). What triggered this is I was diagnosed with metabolic syndrome by my PCP and stage II hypertension despite still exercising, eating healthy, low stress, normal weight, and sleeping as best I can (it’s okay to good most nights with medication). This metabolic syndrome diagnosis came at 14 months in of long COVID.

Cardio said I’m fine, but I need to get my blood pressure under control. Turns out it’s masked; if I take my own blood pressure at the doctor, it’s stage II; if a nurse or doctor pushes the button, it’s stage I hypertension. This is essentially the opposite of white coat syndrome and inherently more dangerous. I know I’ve had masked hypertension for a long time but was told otherwise. This has finally been charted for my doctors to ignore now going forward (yes, I’m bitter, and more on this shortly).

Cardiology and the link

A very long story short, I did labs for cardio. I told her you don’t need to; they’re going to be normal, but in the interest of pacifying both of us, I agreed. Well, they were, except for one thing still in the normal range but on the low side: cortisol. My morning fasting cortisol was just 7.1. The cardiologist said everything is in the normal range, just like ‘you’ said.

Date	Value	Normal range
Feb 3, 2026	7.1mcg/dL	2.9 - 19.4 mcg/dL
Dec 27, 2024	17.4mcg/dL	2.9 - 19.4 mcg/dL

Lab results pre and post covid.

I started researching my charts over the past 15 months. One thing that stuck out was I was taking Paxlovid while on Flovent and then prescribed prednisone for my rebound covid. That right there should have never happened, and here is why: https://pubmed.ncbi.nlm.nih.gov/18459946/

I reached out to my inhaler and Xolair prescriber, Asthma and Allergy, and they said that never should have never happened either; it would have been flagged at the pharmacy, to say the least. The problem is, he was only prescribing my inhalers; Paxlovid and prednisone came from two different urgent care doctors—however, all of these people are in the same health care network and have access to my chart.

I have been taking Symbicort throughout this. I got steroid injections in my neck for pain repeatedly last year. Furthermore, I was scheduled to get steroid injections again at the end of this month (I have since cancelled this).

Endocrinology

Likewise, I reached out to my endocrinologist (whom I haven’t seen in 18 months) and told him my cortisol number and also my suspicions of HPA-axis suppression. Needless to say, I have had an urgent ACTH stimulation test scheduled for several weeks out 🙄

I wanted to put this out there if someone is in a similar boat as me, and hopefully it can help point others in the right direction.

Next Steps

Ultimately, there is more at play here than just this, and I do have more to say beyond this, which will be coming soon. I have opted to reactivate a trip to the Mayo, as I’ve come across this and other things that were clearly missed. At this point, I am my own doctor as a patient and telling doctors what to do.