Brain Surgery to Chronic Migraine

My name is Crystal. I’m 24 years old, and I suffer from trigeminal neuralgia, occipital neuralgia, chronic migraines, and hemiplegic migraines. My story starts off different then most.

My first migraine diagnosis

I was originally diagnosed with Trigeminal Neuralgia in May of 2017. Trigeminal Neuralgia affects the main facial nerve. It caused a constant burning and stabbing pain, on the right side of my face, from the forehead down to my lower lip. On top of the constant pain, I would get shock-like pains through my face, which made me feel like I was being electrocuted. I couldn’t eat, talk, smile, brush my teeth, let the wind blow on me or have anything touch my face. I went on several medicines, without any benefits. I then opted to have brain surgery, called a microvascular decompression, which was done in February 2018. It was successful. It took away my Trigeminal Neuralgia pain.

A successful surgery followed by nausea

I thought I was going to live pain-free, but that didn’t happen. About 2 months after my surgery, my incision started hurting worse then what it ever had. I started getting these terrible headaches, or at least that’s what I thought they were. Besides the incisional pain, I started noticing an increase of nausea, sensitivity to light, sound, and smell. I spoke with my neurosurgeon, who said that it didn’t seem normal, so I underwent an MRI. Everything came back normal. He then referred me to a headache specialist at Mayo Clinic. I seen him 6 months post-op. He agreed that it wasn’t normal healing pains, and I developed something called a post-craniotomy headache. That was triggering chronic migraines and occipital neuralgia.

Creating a new treatment plan

We came up with a treatment plan and I agreed on trying a new medicine. Immediately the side effects were too much for me to handle. Not only were the side effects terrible, but the pain was affecting my everyday life. I would go on to try 5 different medicines, Botox injection, and using a cefaly device, with no luck. Right when I didn’t think anything could get worse, I experienced probably the most terrifying thing ever. One day, when I was working, I started getting really disoriented and lost function of the entire right side of my body.

What to do when first experiencing hemiplegic migraine

Turns out I was having my first hemiplegic migraine. After that day I would basically get them every day. With no other options, and being extremely desperate, I figured I would contact my neurosurgeon and explain to him what was happening. After a long discussion, he agreed with doing a revision surgery as a last resort, to see if it could help at all. There was a 50% chance of helping. At that point I had 18 months straight of migraines and 2 months straight of hemiplegic migraines. I underwent my second brain surgery in November 2019, and I woke up with no migraine! In the past 6 months since my last surgery, I have had less than 5 regular migraines, and 3 hemiplegic migraines. I’m blessed for having a great neurosurgeon and being able to live my life pain and migraine free again, for the first time in over 3 years.