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. Ten long days in the hospital was the worst time of my life, until finally the meds improved enough to get me out of there. The nurses were clueless of what it is. They said they read about it in their textbook. I saw my Neurologist in the am with our game plan and I was on my own after that visit (my wife Lisa & family to support me thank God) for the next 24 hours. What’s worst is you go to the internet and it scares the crap out of you and is VERY depressing. I felt like there was no hope. I'm a newbie to this!! My lowest point in the hospital was at night around day 6 or 7. The attacks were relentless. Every 2 minutes or so. This went on ALL night. By daylight, I kept anticipating 8am when my neuro was coming in. I could not even swallow my own spit 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 Lisa and the neuro because I couldn’t talk. The day before this, my brother Jason, prayed for me and gave me a bible verse that I prayed over and over that LONG night and I continue to pray daily or when I feel like the BEAST is coming back, “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
It went on after I left the hospital. I would go 2-3 days of no attacks and then the same with attacks. I couldn’t talk to clients 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 sooooo depressed. My lowest of lows. There is (present tense) no way I was going to live like this the rest of my life. Nope, not me. I checked out my life insurance policy to see how much longer I had with it and went to bed telling God this is ALL in your hands. I give up. I can’t do this. I’m not wired for doing this the rest of my life. The next day, I had a new doctor visit with a Neuroscientist. It was an OMG meeting. I had no attacks that day. Since that lowly night, I have been pain free. September 8th is my freedom day. I guess God never gives you more than you can handle...But everywhere I've read and people in my “support group” say, “it’s coming back. It’s a matter of when and where”. The Monster comes back. 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 just have to 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. It sucks getting on a plane alone, or driving, hiking, biking, but I have left it in His hands which gives me comfort.