What happens when the dots connect — but no one else seems to follow the pattern.

My brain is feeling clunky, my hands shake on and off from anxiety, and writing seems to be a weakness this morning.

I need to write. I need to express. I need to work through the various things I am feeling because they are too intense to shut down without some sort of pressure release.

This will be a Check Engine Light post combined with a Diagnostic Mode update, which is flustering me greatly.

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Diagnostic Mode: Hitting the Brakes at the Corner of IIH & Migraine Lane

From what I could understand, my PCP felt confused by the notes from the Ophthalmologist I saw last week. She said she sees how he diagnosed but then undiagnosed. She isn’t sure what he was trying to say but:

Due to the lack of damage at this point, she wants to treat it like I’m just living with migraines without causation.

We are going down the path of treating it as a migraine. She wants to see if it alleviates my nearly daily but sometimes multiple times a day symptoms. The frequency increased over the last couple of months. The thing is, they were followed by many other symptoms before and after they became intense.

How can you get a diagnosis based on all the surrounding evidence, then just decide the lack of damage present means it must not be true? Until what? I go blind because it became reactive medicine, not proactive?

While that is a dramatic ending sentence, I am curious if it is going to require my vision to fail and hinder the joy in my life before it could be considered real.

In a world where everything has to check a box, including symptoms, that would hinder me from getting the assistance I need to function while living with symptoms that seem to have no cause by medical standards.

I had a moment today where I suddenly realized I am not being dismissed, but that my explanation of what I live with is being misunderstood.

Somewhere between my struggle to vocalize through anxiety, brain fog, and my way of connecting dots in a non-linear fashion… I truly feel like my words are too confusing to follow.

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Check Engine Light: An IIH Diagnosis Confusion-type Mess, the Mental Health Brain Dump Edition

My PCP? An amazing woman who advocates for me at every turn. However, I feel like I am stumbling through medical whiplash.

I present the symptoms. My brain MRI directs us in that direction. Lack of damage at this time because some jerk who shamed me was too “vague” with his diagnosis… can rule out multiple symptoms and visual confirmation of signs?

I feel like I need to fight for a lumbar CSF pressure check. I’ve learned this is the gold standard for diagnosis.

I again asserted my wish to go to a neuro-ophthalmologist in Ann Arbor (University of Michigan). She is concerned it will waste my time. I still want it though. I did agree to a general ophthalmology appointment with someone else for a second opinion faster.

I have a strong feeling that the lumbar pressure spinal puncture is what I need and the neuro-ophthalmologist is where I need to go for a definitive answer.

However, I tend to be alone in these kinds of battles. My boyfriend lets me try to work through it, and I just relay the information to him. I’m the one advocating for myself. I am the one trying to do research. I am the one trying to hold my own in the room when I ask questions, so my PCP and I can work toward answers.

I feel alone.

I hit constant walls. I’m not sure if I am wrong to press, going crazy, or living in some fog-like dream where the symptoms I feel are not real.

I am at an emotional loss, especially since IIH connected but was suddenly disconnected for a reason I still find odd. Wouldn’t the neuro-ophthalmologist be the gold standard for diagnosis in the first place? Wouldn’t they be where to go and then get the pressure puncture done through them?

Right now, I feel like I don’t know where I am going or what I am doing. I’m a mess.

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Special Thanks

Thank you so much for reading along today. If you made it this far, through the fog and frustration, I appreciate it. Sharing vulnerable moments like this is hard. It helps me process and, hopefully, lets others know that they are not alone when they feel the same chaos in their lives.

Chronic illness and medical maybes seem to fill the air year-round.

If this post resonated with your experience or someone you know, please consider liking and sharing this post.

It is hard enough to not feel well without answers. Navigating the process can feel isolating, and maybe just a little insight into someone else will help them rebuild their courage to fight another day.

Have you ever felt lost between the symptoms and medical answers? What helps you feel heard? I’d love to hear about it. Just drop your thoughts in the virtual inbox below.

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