I am feeling a lot of things this morning. Since I discovered I have IIH, I have been learning how the neurological condition aligns with my symptoms. The reality of what this means has me nervous about my urgent specialist appointment this morning.

It is overwhelming at best.

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Check Engine Light: IIH Emotional Brain Dump

One of the biggest things I learned is that I am struggling with photophobia. Sitting in a dimly lit room feels like a spa day to my eyeballs. I’ve taken to wearing clip-on sunglasses when I have to face my nemesis—the sun and lightbulbs. It still hurts but it reduces the pain.

That bright ball at the center of our universe? Well, it feels like the sun has gone gangster. It just walks up and stabs me through the eye every time we share space.

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I also learned that stress plays a role in all of this mess, too. When feeling extra stressed? It is like a full-brain assault. I noticed my right eyelid consistently twitches with headaches or migraines. While, yes, usually a sign of stress. I see a correlation with symptoms of IIH. I think it is affecting my nerve function. I still have full-body spasms, too. Again, I see a correlation with other symptoms. I think my nervous system is going haywire under pressure.

If I ignore the photophobia? I started having auditory sensitivity. My ears will pound with the first word of every sentence someone says out loud. There is a ringing followed by a pounding heartbeat at other times. It is not consistent like my visual light sensitivity.

I’ve been having sensory overwhelm a lot more often, but with IIH in the mix… I now know how to put a name to it.

Dim lighting taught me that I have blurred spots in my vision as a baseline. My left temporal peripheral and right nasal peripheral have a point where they turn into a blur. The same applies to my bottom peripheral of both eyes.

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Check Engine Light: Ophthalmologist Appointment Today

My urgent appointment with the ophthalmologist is at 9:30 this morning. It was pushed through quickly, which I appreciate. I am hoping that this morning will bring a definitive diagnosis so they can start medication. Then we can move on to any further testing and decision-making. I just want this darn diagnosis so I can start working toward saving my vision before it is too late.

It comes with a whole host of emotions, though. I’m excited to finally have a name for this beast that has been battering me for a couple of years. I’m scared of what it means for me overall. I’m terrified of adding a ton of medical appointments to my life. There is also overwhelming fear. That fear of getting the run around while trying to find understanding and stabilization for my condition.

I cannot handle the unknown well. I battle with this over everything I face. The unknown is scary, and I cannot expect an outcome without full understanding.

There is also the fear that my peripheral is too far gone to save. I’m afraid of losing the right to drive. I’m feeling a lot of emotions.

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I am not a religious woman, but if you’re willing to send kind, positive thoughts into the ether today? I’d appreciate it.

My spirit isn’t broken, just bruised.

Important Search Terms:

IIH symptoms | Idiopathic Intracranial Hypertension | Light sensitivity | Eye pain | Photophobia | Peripheral vision loss | Eye pressure | IIH migraines | Chronic illness | Sensory overload | Neurological disorder | Ophthalmology | Vision changes | Driving eligibility

If you found this post through one of these searches, you’re not alone. I’m right here with you—navigating the same fog.