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.
October 29, 2017 update
It has been 14 months since my last attack which has been a true blessing. I do have good days and bad days when the nerve aches and feel like it's on verge of attacking me. I've had to up the Gabapentin I am on but keeping the same dosage of Tegretol at the moment. I'm still still what the docs say is a low dosage. I was riding my mountain and road bike but started regressing so I had to stop that for the moment. I am able to hike so that is a relief.
The Neuroscientist Visit
I want to tell you about the most amazing 3 hr doctor visit I had with Dr. Li Jin, a Neuroscientist in So. California back in Sept 2016 on the last day I had an attack. Was it him who healed me? Or the meds kicking in? Or the Lord I don't know. Dr. Jin is mind blowing though. I met with him on Sept 8, 2016, for 3 hours! Most amazing doctor visit ever. He has a 90% success rate with the military and in treating PTSD and hopefully in the VA soon with his successful statistics. Also, chemical dependency, stroke victims (one who was paralyzed chest down), and a little lower rate with autistic kids. Truly changing the face of Neurology. He cured his 80 yr father of TN just prior to when I called him out of desperation. He hasn't taken on TN patients yet because they have not come his way. That's why he liked me because another feather in his cap if he can cure. Furthermore, he is backed by USC Neurology and Hoag Hospital Neurology department, UCLA, UC Irvine and owns the Brain Treatment Center in Newport Beach and has locations around the world. His credentials go on and on.....
He scanned my brain and gave me a mild treatment to give me an idea what it entails. Without me saying a word, he asked about my sleep. I said it's great until my wife chimed in and described my breathing and saying she thinks I have sleep apnea. He then said I bet if I gave you a memory test, you would fail. I said my memory is horrible at 54 yrs old that he doesn't need to test that. He said sleep apnea is so bad for the brain that is causes so many things that he described which I can't repeat back due to i'm not a dr. He basically said my brain is not resting. My body is, but my brain isn't so it's working 24/7. He wanted me to get tested and get the cpac sleep machine and be on that for a month. Also, to get morning sunlight for an hour (without sunglasses). He wanted me to get outside for an hour in the morning because it produces melatonin, among other good things for the brain. He said my brain score was lower than normal. He showed my brain colors compared to a healthy brain and it was quite different. He thinks these things might be causing the trigeminal nerve to have these episodes. Get the brain healthy, then we all feel my odds get much better in getting rid of TN. If I am still having them, then he said to come into his office for 5 treatments and see what happens from there. I have not been back since.
It's amazing how my current neurologist has never looked at these issues or run a scan!! They throw drugs at it and if that doesn't work, then surgery. He mentioned how Neurosurgeons love what he's doing and using it for themselves. The drug companies will not be happy about this! This shakes up the whole medical industry! If you can eliminate drugs and have non-invasive treatments?!
I will go see him and have him re-scan my brain and see if it's "normal". Word has it, he might win the Noble Peace Prize someday.
One quick tip he taught me about was blue light rays. Google it and download BlueLight filter on your computer and phone.
God bless you or your friend or loved one in this horrific battle but be positive and ask the Lord for help! And I want to pray for you if you let me know. He's the GREAT PHYSICIAN! Through Christ, you can do ALL things which will give you strength. Philippians 4:13
PLEASE call me at 949-248-3112. If you are in the hospital in Southern California, I can come see you!!
And please visit our support group in Southern California but they have chapters located all over the USA.