About Me: My name is Misty and I am married to Dan and we have two precious boys - Ian 2 years old, Aidan 2 months old. I am a stay at home mom (after having worked in real estate and property management). I love to digi scrap and am now working on designing my own kits. My husband and I love soapmaking and are in the process of getting an etsy store opened. I was just recently diagnosed with Trigeminal Neuralgia.
My TN Facts:
Pain: In all 3 nerves but mostly in both the upper and lower jaw and deep into the ear. Usually I get a sore throat on the right side that resembles a swollen tonsil or gland. Pain usually starts either deep in the ear or in my teeth (upper and lower molars)
Triggers: Mostly pressure. Any gently pressure on my right cheek, temple, or ear. Chewing too hard (something like pizza crust). Very cold liquids. Any other triggers are still unknown at this point
Other symptoms: Numbness in the face near lower canine tooth.
Relief: Sometimes hydrocodone helps. A hot moist towel applied to the right side of my face, especially on my face near my canine teeth. Even though the pain isn't always near that area, the heat has a referred reaction. Putting it over my canine teeth helps relieve the pain near my ear and molar area. Meditation also helps.
I decided to start this blog to help others who are looking for information on Trigeminal Neuralgia. The past month, I have scoured the internet looking for people's accounts of dealing with TN. It's so easy to find the textbook info but the internet has minimal information regarding personal experience with TN. Also, this blog will help me have some control over pain management and coping with TN.
To begin, I will give you the "how it happened" story.
August 2008: It all started with a toothache. I had a molar (#30) with an old amalgam filling that had some decay hiding beneath it. Dr. H said a root canal was in order. So I went in for some root canal therapy, initially just a pulpectomy and then I would come back when my insurance kicked in (Jan 09) for the complete root canal and crown. Dr H also put in a filling (MO) on an upper molar (#1, yes a wisdom tooth, I have no #2). After he worked on #1, he began working on #30. As soon as he opened up #30 I felt intense pain radiate in a C shape from my lower right side of my jaw to the upper right side. He kept giving anesthetic (Marcaine because I was pregnant) and eventually had to drill into the bone to inject it directly because the pain would not subside. After the procedure my doc prescribed 10mg hydrocodone and I went home to recover. I had no further pain at this point.
October 2008: Pain returns. Not throbbing toothache pain but the intense shocking pain I had during the root canal procedure. I waited 2 weeks and finlly went to the dentist on Halloween. He tapped #30 with the end of his explorer and asked if it hurt - NOPE. He tapped the tooth behind it (#32 - I have no #31) because it had a small occlusal cavity but no, it wan't the source of pain. I couldn't tell where the pain was coming from, it was just there. He decided to open the tooth back up, clean it out and close it again. He didn't see any more decay but when he put that barb down into the root I had another pain shoot deep into my ear. So here I was bathing in pain. He prescribed an antibiotic just in case there could be an infection and I went home. I ate Tyelenol, Ibuprofen, Asprin, and Clindamycin(antibiotic) in a potentially lethal cocktail for a week until I gave up. The pain was so excruciating. I called the dentist back and he suggested another antibiotic, Flagyl, but I was too desperate by now. I called my general practioner and got in that day (Nov 5th). She was so empathatic and caring - She put me on Prednisone to help with inflammation and prescribed hydrocodone for pain. After the Predinsone was up I called her back and told her I was still having episodes. She referred me to an ENT and prescribed more hydro.
November: I went to the ENT on the 11th and it was a bust. There was no ENT related diagnoses for my pain. Instead he wanted to refer me to an endodontist. Now I'm not an expert but I feel pretty sure (knock on wood) that the tooth is not infected (no fever, antiobiotics aren't working, no localized pain, no relief from palpating the gums around the tooth, etc). So I called my GP back and begged for a neurology referral. She emailed and told me that all of the neurologists in the network (Group Health) are booked until after the new year. HOWEVER, she was going to consult with a colleague and get back to me. She called me an hour later and told me that the colleague agrees with my suspicion of Trigeminal Neuralgia. My symptoms are exact and it's not uncommon for TN to be brought on by dental work.
On Friday, Nov 14th I started on Gabapentine (Neurontin) to control the pain. GP didn't think I could still nurse Aidan though. So I got on the phone to the boys' pedi (whom I would trust with my life) and he gave me the go ahead to continue nursing Aidan. I just have to keep them informed of any dosage changes. They are 300mg capsules and I started with 1 pill on Friday, 2 pills on Saturday, and starting Sunday, 3 pills a day.
Kicking off this blog, here is my journal of today.
November 17, 2007
Last night was hell. Dan and I headed off to bed around one in the morning. Ian is teething so he began to whine around 2:30. His whining prompted Aidan to wake up which woke me up and I was instantly in pain. I left Dan to care for the babies and got up to take 5mg of hydrocodone. I jumped back into bed, Ian was back to sleep and Aidan wanted to nurse. I couldn't focus on anything but the pain so Dan had to make Aidan a bottle of formula and I begged him for a moist hot towel to put on my face. I finally drifted off about 10 min later.
At 4:00 I was startled from sleep and realized I was in pain again. I went to the kitched and popped another hydrcodone. I decided to jump on the internet and try to distract myself from the pain. This episode lasted an hour and either quited on its own or the pain medication finally settled in.
7:00: I'm awake. Can't sleep. I take my first daily dose of 300mg Neurontin. Around 8am another pain episode begins. I take a hydrocodone then and at 9 I take another. No relief. Finally around 11:00, the pain subsides
11:40 am: Pain free for the moment.
Dan read somewhere that Tea in general may cause an attack of TN. I wish I could remember where he said he read the claim so I could post the link to it. Maybe googling it will bring it up. Anyway, the sugar in tea and other food could be a trigger. I love green tea and drink it constantly so I need to know if this little tidbit holds any weight.