I have this horrible rare painful disease. 4 out of 100,000 get hit with this mother F____. So, imagine sitting at the Rose Bowl with 100,000 people and it's the Hunger Games selection and 4 are picked and I'm one of them!!! And there's no cure or cause either, sorry! I never win anything and this the one time, I’m picked! I'd rather have something else! Give me cancer so at least I know the battle and possible cure I thought! Less than 200,000 people are affected with this which classifies it as a "rare" disease. Drug companies are not interested because there's not enough of us to test! ROI. I get it...It’s called the “suicide disease” and the worst pain known to mankind. I sure as hell as agree! Officially, it’s called Trigeminal Neuralgia. I couldn't even pronounce it and spell it!
One night in July 2016, I was eating dinner after a normal bike ride and BAMM!! Out of nowhere, it hit me! Keep in mind, I bike, run, swim, and eat healthy! I had a similar reaction 2 years ago that went away that I feared was TN but my doctors didn’t classify it as TN so I dismissed it. When it hit, I knew to immediately get calm as fast as possible, even though someone is stabbing my eye! Imagine someone taking you and they grab a knife and start stabbing your eye for about 30-60 seconds (each time is varies) trying to stay calm! I'm always amazed I can see after. Later on, it was as if someone was holding an electrical rod to my eye. Meds by my neurologist were not working and quickly I was off to the hospital. Once admitted, they hooked me up to morphine and some other drugs but nothing would subside the pain. The nurses were clueless of what it is. They said they read about it in their textbook. I would see my Neurologist in the am with our game plan and I was on my own after that until I saw him the next day. I had my wife Lisa & family to support me and even though they were there, you still feel so alone. What’s worst is you go to the internet and it says it's the suicide disease. Talk about VERY depressing. I felt like there was no hope. My lowest point in the hospital was at night around day 6 or 7. The attacks were relentless, This went on ALL day and night with no break. It was one LONG night. I prayed non-stop, like a little kid asking his mom or dad for a toy. I wish I had scripture memorized but I didn't. My friend gave me this verse though and I said it over and over and over, "Heal me, Lord, and I will be healed, save me and I will be saved, for you are the one I praise.” Jeremiah 17:14
By daylight, I kept anticipating 8am when my neuro was coming in so I could say this isn't working!!! I could not even swallow, or talk without an excruciating attack. You can't even cry as the blood pressure brings it on. I couldn't brush my teeth because trying to spit toothpaste brought it on. I had to type notes on my laptop for my wife and the Neuro because I couldn’t talk. That night, my best friend and my wife Lisa prayed for me with their hands on my head. I felt this most amazing wave like feeling go through me, unlike anything I've ever felt. When they finished praying, my wife looked at me with tears streaming down my face, and said, "did you feel that!?". Yes I did! That very next day, things started to improve and finally to the point where I could leave the hospital. My wife and I even had our wedding anniversary there on 8/6/16, in my sexy hospital gown.
I still was not healed completely or 100% by any means. It continued to go on after I left the hospital. It wasn't to the same degree as in the hospital but every attack is excruciating. I would go 2-3 days of no attacks and then the same with attacks. I couldn’t talk to clients and hard to work or socialize because I didn’t know if I would have an attack. However, the night of September 7th, after scouring the internet and watching YouTube Videos, I went to bed EXTREMELY depressed. My lowest of lows in my whole life. There is no way anyone can live like this. I even checked out my life insurance policy to see how much longer the policy was good for. You feel hopeless, there is no cure. You can't function as a human being so why live and be a burden. I remember I went to bed and told God this is ALL in your hands. I give up. I can’t do this, I'm done, I surrender ALL to you. I can't live this way. The next day, I felt better strangely. Odd it was to wake up somewhat normal. Then a friend of a friend pulled some strings and got me in to see this leading Neuroscientist, Dr. Jin. It was another miracle that I found this doctor and he would see me so quick because of my condition. It was an OMG 3 hour meeting. I will write about what he did another time. Well, my last attack was in his office waiting for him. I have been attack free since.
September 8th is my freedom day. I guess God never gives you more than you can handle...But everywhere I've read and even people in my “support group” say, “it’s coming back. It’s a matter of time. However, I don't agree! I believe in the hospital, he healed me there, not entirely. Perhaps I had to get to my lowest breaking point and surrender first. I pray the Lord has healed me as He can do ALL things. He's the great Physician. I simply have to trust Him. We trust sitting in a chair that it's going to hold or getting on a sailboat that it will float or getting on a plane that it will fly us there safely....I trust Him the same way.
If you are having extreme facial pain, you have a friend. Don't go to your dentist! Go to a Neurologist. If you need one in California, see the HOME page for a directory of docs who know how to combat this Monster. If you are in Southern California, then you have a support group as well. See HOME page. I would LOVE to hear from you to see how I can help. That's the only reason this site exists. Plus I want your prayers and support as well. Just because I have had no attacks since September 8, 2016, doesn't mean I'm home free. I have days where I feel like I'm close to an attack, but I have left it in His hands which gives me comfort.