Trigeminal Neuralgia

Around a year ago I started having a strange pain in my mouth and jaw on the right side of my face. As time went on it increased in severity. The pain felt like an electric shock. Sometimes it felt like a 9 V battery shocking my jaw or cheek. Sometimes the pain would linger and sometimes it would be intermittent. Sometimes it pulsed. The pain progressed and started to feel like a shock from an electrical outlet. It followed the same pattern of lingering, intermittent or pulsing. Sometimes the pain was so terrible I could only tuck my head down and wait for it to pass. At these times any contact of my cheek on my teeth would set it off. Pulling my cheek away with my hand or tongue did not help. The contact from my hand or tongue would increase the pain. I assumed I had some type of sore my mouth and that it would go away.

This did not happen, so earlier this year I went to my primary care doctor. He was out and so an Associate doctor saw me. He poked around and said that I needed to see a specialist. We were surprised at how quick he was to wash his hands of the issue. We then went to the specialist he recommended. The specialist looked around also and found no obvious source. He prescribed a lidocaine based mouthwash called “magic mouthwash”. He said the type of pain I had a normally referred people to an Iowa City dentist that he knew. I’m not sure why I went to him as a specialist.

The mouthwash helped a little bit but not for long periods of time. I kept using it more and more and still the pain was there most of the time. So I called my doctor back. I needed an opinion from my actual doctor, Dr. John Roof. He has been indispensable as my MS is progressed. I’ve been disappointed by my neurologist and look to Dr. Roof almost entirely now.

Dr. Roof researched the issue and prescribed Gabapentin for the paint. About the same time I went to the dentist to get their opinion. She said Gabapentin was what she would recommend. She thought I had a condition called Trigeminal Neuralgia. I came home and looked it up online. I found this condition was obviously what I had. I’m not sure what the first doctor or the specialist were thinking. I am a layman and it was obvious that I had Trigeminal Neuralgia. The gabapentin helps for about six months. After that the pain started coming back.

I called the doctor again to report the pain. They increase the dosage. That helped a little but the pain still lingered. I called again to ask what the next step is. I got an actual call from my doctor that afternoon. I just think the world of Dr. Roof. How many times do you get to actually speak to a doctor on the phone? He suggested either an increase in Gabapentin or a new medication. The new medication is actually anti-seizure medication that is found to be effective for my condition. I have a pretty good supply of Gabapentin. I could always go back to it so I decided to try the new medication.

I’m on the second day of taking it. I’m still taking Gabapentin and decreasing the dosage each day, tapering off. The new medication I have to ramp up from a small dose to a little higher does each day. Right now the pain is nowhere near as bad. I still have a lingering pain in my cheek. It is more of a pain than a feeling of electric shock. I consider this a big improvement and hope for continuation. If you are a praying person please pray for me. Thank you!