My journey of getting a diagnosis

My journey of getting a diagnosis

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I began having vision issues with a severe daily migraine at the beginning of last year (2018). I went to my general practice doctor, and she recommended, based on my symptoms, to see a neurologist. I had to wait for my insurance to cover me (about 4 months,) and it continued to get worse.

Read more: Migraine: My Mistakes and Conclusions

I finally got in to see the Neurologist, and she found that my eyes were severely swollen. She had me see a neuro-ophthalmologist who confirmed that I had Papilledema and diagnosed me with IIH. My neurologist wanted to perform a Lumbar Puncture to confirm. Less than a week later, I got an emergency LP with an opening pressure of 36. This is considered high pressure and confirms increased pressure.

We began treatment, and my vision continued to get worse. I tried several meds at several dosages, and finally, after a second LP, my Papilledema had gone down significantly, and my migraines had become less frequent and more manageable. While I continue to have high pressure and newer symptoms, it’s nice to understand and know that some things will work, even if just for temporary relief.

Read more: What comes first?

The cause of the increased pressure is unknown, but my Neurologist suspects hormones from birth control. We’ve changed my BC to see if it helps, but in the meantime, I continue to have migraines and new and worsening symptoms (neck pain). It’s been a ride, for sure, but I hope to get answers soon and have full control over this condition.

What was your first Reaction when you got your Diagnosis? Show your Support by Sharing this Story!