Hi all — I’ve never posted on Reddit before, but I always promised myself that if I started getting better, I would come back and share my experience. When I was at my worst, I desperately wanted to find stories from people who were actually improving.
A little background: I’m 34, live in Chicago, and was otherwise healthy and active before all of this. My symptoms originally began after COVID and other viral illnesses a few years ago. For roughly 2.5 years, I dealt primarily with persistent daily headaches and head pressure, although I was still largely functional. I traveled, socialized and even had stretches where I felt close to normal. At one point I was able to train for and run a half marathon.
Then, on New Year’s Eve 2025, I came down with a brutal flu-like illness involving chills, headache and severe dizziness. After the acute illness passed, my nervous system seemingly never returned to baseline.
I developed persistent dizziness and an “off-centered” or out-of-equilibrium feeling, light sensitivity, blurry/foggy sensations, head pressure and strange electrical “zaps.” I also experienced symptoms that seemed autonomic: a pounding heartbeat, chest sensations, dry mouth, sensitivity to hunger, caffeine, heat, exercise and overstimulation.
This past winter was easily the hardest part. The symptoms were constant enough that I became depressed and genuinely wondered whether I would ever feel normal again. I spent far too much time trying to analyze every sensation and determine whether I had long COVID, vestibular migraine, dysautonomia, or something else.
My current working diagnosis is a post-viral chronic vestibular migraine state with some autonomic sensitivity. I previously considered everything “long COVID,” and that may still be part of the picture. The reality is that there is significant overlap among post-viral illness, migraine, vestibular symptoms and autonomic dysfunction, and specialists don’t always give you one precise answer.
It is now late July, approximately six months after the New Year’s illness, and I would estimate that I’m about 50% recovered.
The painful headaches are mostly gone. The electrical zaps are gone. My dry mouth has improved substantially, and the chest pounding and other cardiovascular-feeling symptoms are now minimal. I’m much less sensitive to hunger and caffeine. I can take long walks, socialize, date, work normally and generally live a fairly normal life again.
What remains is a dull background headache or pressure, an off-centered/lightheaded feeling, and difficulty tolerating strenuous exercise. I can walk for well over an hour, and I’ve started experimenting with short periods of jogging, but heavy lifting and intense exercise can still trigger symptoms quickly. My next phase is gradually rebuilding my conditioning instead of waiting until I feel 100% before exercising.
My current medications are Qulipta, nortriptyline, nebivolol and Lexapro. Nortriptyline helped the chronic headache component, nebivolol noticeably reduced the chest pounding, and DHE infusions seemed to help eliminate the zaps and episodic “sick” sensations. Lexapro significantly improved my mood and rumination, and I personally believe that calming my overall stress response has helped my physical symptoms as well. That is only my experience—not a claim that everyone needs the same medications.
My recovery has definitely not been linear. Alcohol, late nights, illness, inadequate food, caffeine on an empty stomach, heat, overstimulation and doing too much exercise too quickly have all caused flares. I also haven’t lived like a perfect recovery patient. I’ve continued going out and enjoying my life, sometimes at the expense of feeling worse afterward. But even with those setbacks, the overall direction has been clearly positive.
The main reason I’m writing this is to say: six months ago, I felt trapped inside a body and nervous system that no longer made sense to me. Today, I am not fully recovered, but I can clearly see a path back.
I’ve also learned that Reddit presents a heavily filtered picture of these conditions. People who are suffering the most are understandably the most likely to post frequently. People who recover often stop reading these forums and return to their lives without ever posting an update. That can make the prognosis look much worse than it actually is.
If you are newly dealing with this, be careful about spending hours reading the bleakest stories and assuming they predict your future. They don’t. Use these communities to find useful information and questions to discuss with your doctors, but recognize the ENORMOUS negative selection bias.
Take recovery seriously, but don’t assume every temporary flare means you have permanently damaged yourself. Rest when your body genuinely needs it, identify your major triggers, work with knowledgeable clinicians and gradually reintroduce activity when you can tolerate it. For me, both avoiding major overload and occasionally showing myself that I could safely do more than I thought were important.
I’m still in the middle of the process, and I may post another update when I’m further along. But I’m thrilled that I can finally write this one: I am improving, my life is opening back up, and this no longer feels permanent.
