This year I had the pleasure to talk at the FPA National Conference which I strongly recommend anyone with face pain attend. It was a virtual conference over 2 days and had a chance to listen to a number of doctors on various topics. I spoke about what has worked for me in my battle. Please visit the home page for the video.
This year has been good with my trigeminal nerve. After reading from a neurosurgeon about how Tegretol can increase my odds for dementia later in life, I have decreased my Tegretol down from 800 to 500mg per day. And so far, all has been good. See your doctor if you can decrease your dosage too.
I had 2 root canals 2 weeks ago and that went very well. What I do, per advice from other TN warriors, is increase my Tegretol 200 mg a couple days prior to the procedure. For post recovery, I take Flexeril at bedtime and put a 5% lidocaine patch on the area of the root canal and on my TN nerve area that can make it "ache". I did that for a couple of nights, and all came out good. Also, the Endodontist did not give me a full dose of epinephrine per dental guidelines established by Neurosurgeon Dr. Mark Linskey for trigeminal patients. What we did was half epinephrine and half lidocaine and that worked perfect. I had tried all lidocaine previously, but the Endodontist had a hard time getting the root area numb enough. Ideally, you want to do all Lidocaine because epinephrine raises blood pressure which increases TN pain. Keep in mind, I am not a doctor, and you should consult yours before making any decisions.
I also saw my upper cervical chiropractor after as well because the dentist chair makes my neck feel horrible. And sure enough, I was out of alignment, and he fixed that.
I hope this helps you if you are in the same situation.
It's been over a year since my last post. How fast time flies. So far, all is great! I have had no attacks so I have made it over 5 years which beats what everyone has told me. I still have days or a "nerve ache" and I deploy all my weapons. Weapons are-heavy in prayer, CBD cream on my nerve, Advil, and visits to upper cervical doc, and more prayer. And I am still riding my bike. In fact, here is a picture of me in a ride this year in CO for 65 miles. It's my first race since I got this monster. It was what I called a victory ride. See my bike jersey I got made to spread awareness.
God is with us! Christmas is here after all that demonstrates the love God had to send his only son down to earth to save us. Thank you, Jesus, for being with me and my family. Blessings to you all who are fighting this beast. One day at a time. Don't worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Want me to pray for you? Send me your name and will be more than happy to.
I had to get a wisdom tooth pulled out and it was my back right side. My TN pain attacks were on the right side. I have days of when my nerve from the ear to my eye will ache. Primarily in the temple area.
Naturally, I was concerned the tooth extraction could cause my trigeminal nerve to WAKE UP but I had no choice and had to do it.
The surgery did wake up the nerve in terms of strong aches but no brutal stabbing attacks like in the beginning. I feared that could be coming though at any minute and I took extra tegretol and Ibuprofen to help with the pain and keeping the nerve from striking. The extra tegretol didn't help with pain but the ibuprofen saved the day. However, I was taking a lot because the jaw pain traveled to my temple area and cause my TN nerve to ache good. This went on for a month. I got a higher power dose (250mg) of CBD cream and that was HUGE in helping me. Also, a friend of mine in my TN support group told me take Flexeril and once I did, everything changed for the better. It was a good one month plus before I started to improve. It took about 2 months total before I felt pretty normal again and decreased the tegretol back to the usual amount of 800 mg per day and stopped the ibuprofen.
According to the Facial Pain Association, they recommend that oral surgeons to not use Epinephrine ingredients, which are vasoconstrictors. Instead try: 1) Mepivacaine 3% or Carbocaine 3% (avoid using long-acting anesthetics, eg., Articaine).
I have a brochure that our support group passes out to dentists and oral surgeons that I posted on the "resources" page of the this website. And make sure you give it to your dentist and oral surgeon. Do not do any surgery if the surgeon is not familiar with trigeminal neuralgia.
Since my last blog last September 2018, almost a year ago has passed by. So far, I am doing good with no attacks. I do have my days where my nerve bothers me but i can live with that easily. It's usually if i work out too much. Cannabis oil with cbd/thc helps it though.
I continue to see my upper cervical doc that I talked about previously. He is wonderful and I see him every 6 weeks now. I was week to week in the beginning and so far my neck is doing much better and no adjustments are needed. He makes a difference and well worth seeing. Most people in my support group go see him.
Here is what i do on a routine basis-
Dr Roger Smith came and spoke to my trigeminal support group approx 5/1/2019. I said WOW, I need to see him right away! He works with Trigeminal Neuralgia patients for over 10 years successfully! He's a chiropractor but not a typical Chiro. He fixes you and he's done. The goal is not to come back, unlike a regular Chiro. He's one of 2000 Upper Cervical chiropractors in the world. He utilizes the blair technique and it has sure worked wonders for me. After a 3 hour initial consultations and various tests, he said my neck was out of alignment. The atlas that is that the head sits on. He said it looks like it was over 20 years. It could've been playing football, wrestling, mtn biking wipeouts, or many other situations where my head got hit. It doesn't have to be much. Since seeing him, my nerve pressure in my brain has significantly eased. I feel so much better. My neck movement has drastically improved. My sciatica went away after trying to heal it for 9 months. Here is information of all the ailments he helps people with.
His website is below-
Here is a great 3 minute YouTube video that shows what occurs with the neck and how it’s so vital to everything with the body as for healing. Click on the link-
The basic premise of upper cervical chiropractic is that your body is a self-healing, self-regulating system as long as the neurological system is FREE of interference. Upper cervical recognizes that true health is an inside out process, therefore to get well or stay well it is a matter of an internal process. This basic premise contradicts the mainstream health care system which is an outside in paradigm. For whatever ails you there is a pill from the OUTSIDE in that can bring back balance. Medications can be life saving, but diseases and symptoms are not the RESULT of drug deficiencies they are the effect of abnormal function. The ENTIRE FOCUS of upper cervical care is to remove interferences to the nervous system so the inborn intelligence in the body can restore balance and health to the best of its ability.
If you are not in Southern California to see Dr Smith, you can find one near you by clicking here-
On April 12, 2018, I was at the vet with my dog and all of a sudden, I passed out. I've been told I went in and out and they thought it was a seizure. I've never passed out before. Even after football hits I've taken or wiping out on my mountain bike.
The vet called 911 and paramedics arrived took me off to ER with a heart rate at 20, they were talking about "total heart block" and I figured this must be serious. I didn't have chest pains so a heart attack never crossed my mind. After many tests and 8 hours later in the ER, I had a 2nd episode and was admitted to the hospital. After more tests, it was a result of total heart block 2 which has to do with the electrical part not being in sync. Pacemaker was the discussion and at 55 and healthy, it was disappointing. However, thank goodness, the cardiologist was thinking it was a drug interaction with Tegretol and Gabapentin and consulted my neurologist about taking away the drug to see what happens. With that, I fear the return of trigeminal neuralgia. Today is week 6 and so far, no problems but won't know until July he said for sure.
In the meantime, I had a pharmacogenomics test done which says what drugs I am adverse to taking based on my genetic makeup and data collected over the years on drug to drug interactions. Neither drug came back as an interaction though because there is not enough data on these 2 drugs causing drug interaction problems. Most people don't do these 2 drugs at the same time. So, I am hoping my situation will be one for the data books.
If you are taking more than 2 drugs, you should have your genomic test so you know what drugs are best for you based on your genetic makeup, and what drugs to avoid. It shows the right drug, the right dose for you. Mine says Plavix and a few others can be fatal! "50% of the medications patients take are ineffective" says the Coriell Institute. By taking the right drug and the right dose, it can reduce your current drugs or eliminate other issues you might have. It takes the guesswork out of prescribing meds.
Insurance pays for the test and it's a swab in the cheek. That's it. And then you and your doctor have lifetime access to view the online computer portal for any future drugs you might take later in life.
Go to www.omnign.com for more information and even order your test.
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.
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 Center for Neurorestoration and Hoag Hospital Neurology, UCLA, 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?!
One quick tip he taught me about was blue light rays. Google it and download BlueLight filter on your computer and phone.
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.