Trigeminal Neuralgia… Oh joy!

One week after my last round of Botox in September which included my scalp back to my numb line still left this burning pain and my hair still hurt. I had an appointment with my family doctor to follow up with her to see how everything went. I informed her how the forehead pain was better but the scalp was still bad and I was still getting stabs in my cheek bone.  We decided to start me on Neurontin and see how that worked. And that at this point I should try to get back in with the neurosurgeon that did my occipital neurectomy several years ago.

It took about 2 and a half weeks of phone calls and countless hours on hold trying to gather all my old records to send to the new surgeons office. I guess my original surgeon decided it was ok for him to retire! Well I finally received an appointment for October 27th!

In this time span the neurontin hadn’t seemed to help yet. And my pain was beginning to get worse. The shock like pain was becoming more frequent along with the stabs. It had started attacking my eyeball, burning and watering at the same time (excruciating btw).

I’ve always known cold was a trigger for me and moving my hair/touch my scalp would set off the pain. Well at work one day I brushed the hair off my forehead and immediately collapsed to the floor in the worst pain I’ve ever felt in my life. My face was being attacked by a lightning storm and that damn Martian was back but this time with a blow torch. A visit to the ER and some IV medicine helped to bring the pain down to a tolerable level. Meaning it went from a 10+ down to about a 5-6, which is where I function pretty much every day with the pain attacks I have. After the ER visit and a talk with my doctor we decided to up the amount of Neurontin I was taking…..ugh. Hello extreme side effects. The medicine was slowing me down so much mentally and was not touching my pain at all. In fact my pain had started attacking my jaw. One day I took a drink of ice water and immediately I was curled up on the floor in a full blown attack of the lightning storm and stabs. Once it was finished I thought to myself, “well damn, there goes ice cream!”

Once again after talking with my family doctor and not having any progress we decided to switch my medicine to Tegretol. About 4 days in, my pain was still just awful. We decided to increase the medicine and ahhhhhh a little bit of relief! The attacks weren’t as violent as before! Now I just felt drunk, unsteady eyes and nausea just without the alcohol. We decided to add Zofran to my mix to help with the nausea. So now I feel like a drunk without the nausea. Let me tell you this medicine is loads of fun…NOT. However, it is helping keep the attacks more tolerable.

Now if the cool wind hits my face, my ear gets cold, my scalp is touched or my hair moves it will still send me into pain, just not as bad as it was before.   Sometimes I wonder if the side effects are worth the little decrease in pain. Most days I would say yes.

My appointment with the surgeon is right around the corner and I’m very anxious and excited.  I hope and pray that he can help fix these problems.


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