Monday, December 29, 2008

Numbed

So I have completely stepped down my Gabapentin (back to 900mg/day) since my last post. I have really noticed a difference.

The pain has returned in my lower jaw and tmj area. It feels like a steady dull ache, mostly right around the time I am to take my meds.

Over the last few days I have felt the shocking, jabbing, stabbing pains. Certainly not nearly as painful as they've been, but enough to make me wonder if they will worsen.

I had about 6 without any pain. I was able to eat almost any foods and actually enjoy them. I am back to finding myself avoiding anything hard in texture or hard to chew - I even missed out on Prime Rib this Christmas :( I accidentally chomped on a peanut in some christmas cookies and the shockwaves sent me to high heaven. It only lasted for about 30 seconds.

The last 3 days I have felt super weak and without any strength at all. It's back to being unable to get out of bed. The last 2 days my arms have gone numb or "asleep" from the elbows down. Only one of the times did it feel like pins and needles but mostly it felt like I'd stuck my arms in the snow - it was a "cool" numb feeling. I could still feel things on the outside, it just felt like the inside was numb, does that make sense? It's so hard to explain.

We have new medical insurance as of Thursday. My neurologist is retiring on Wednesday. I have a Feb appt to see a different neuro in the office but I think I am going to try and see someone closer to my house. As soon as my husband gets the card in his hand I will make phone calls for appts. But for now, I will keep the Feb visit scheduled.


Any insight to the arm numbness would be so appreciated.

Tuesday, December 16, 2008

No TN News is Good News?

I haven't had any attacks the last few days. I have attempted to keep my stress level down and have been taking my meds on time (within a half hour or so) everyday. Maybe they're working? I'm still in wait for the next big one.

I asked the husband to buy me the book Striking Back for Christmas. I'd also like to read Catholic Matters: Confusion, Controversy, and the Splendor of Truth.

I have a tooth on the upper left side that is giving me some minor pain. Mostly it's just uncomfortable. It has a large old (like 10 years old) amalgam filling and part of the filling (and tooth) broke off. I am pretty sure it's going to have to be extracted and I'll eventually end up with a bridge, or even better an implant (I hope). I have a dentist appointment in January, right after Christmas, to deal with the tooth that got my TN all pumped up. It needs the root canal therapy finished as well as a crown. Right now my feelings are there is no way in heck I want them fishing around on that side, especially putting barbs down the canals again. I don't know if I will ever get the courage to do that again, although I know it's urgent I follow through. I also have a terrible time getting numb, hence why Dr H had to drill and inject directly last time. It makes me cringe thinking about it. I really wish general anesthetic was an option. I have some more work that needs to be done, a few small cavities to fill - I'd really like to work something out to do that all at once without having to be witness to it. I'm dreaming though, right? I wonder if having TN is cause to do so?

I'm almost embarassed to talk to the dental office about this. Isn't that terrible? I'm even embarassed to admit that I am embarassed.

I really need some commentary on this one.

Tuesday, December 9, 2008

Some Concerns

First and foremost, babies. The drugs I am taking cannot be taken while pregnant. While I am not planning on being pregnant soon (since I just had a baby) I do want to have more child(ren?) and our plans are sometime in the next 2 or 3 years. What am I going to do then? Is there an alternative? I refuse to believe my childbearing years are over. I've also read that some drugs decrease fertility, is that true about Gabapentin or Carbamazepine?

Secondly, other pain: Ever since the doctor did the root canal again and hit the nerve, shooting pain into my ear, I have had throat pain and ear pain with the facial pain attacks. The throat pain feels like my throat is closing (but only on one side) and my ear feels like a severe ear infection. I have to put an ice cube in my ear to numb it. I do not have an ear infection or strep throat. I told the neurologist about the pains and he asked if I had trouble swallowing (nope, I don't) but he didn't offer any explanation. The pain is getting worse with each attack *how can you really measure though!

Anyone else out there have throat or ear pain?

Anyone have anything to offer on getting pregnant with TN?

Monday, December 8, 2008

Slow Ride...Take It Easy

I think those two or so days of some reprieve set me up for the last couple days of hell. I finally got my doctor to refill a scrip for hydrocodone (yes, sometimes it works and at the pain point I get desperate) after I convinced her I wasn't some kind of addict. She actually wrote in an email to me "I reviewed the neurologist's notes and I am glad to see that you actually do have some kind of pain" - Wow, Group Death must get alot of pain pill seekers in there because I have never had a doctor question me like this care team has.

Today I feel like someone has socked me in the jaw. It reminds me of when I was little and played softball - during one game I got hit in the jaw by a ball, not to hard, just enough to hurt.

While I was having an attack a couple days ago, I had a flashback to when I was about 5 or so. I remembered getting little jolts to the side of my head and I realized I have had those here and there all my life. It was just recently that they turned into a daily event with a pain scale no one could measure.

Ice: I've figured out I can only use ice when the pain is so bad that ice can't make it worse. I can then numb the nerve. My husband is shocked I can hold an ice pack directly to my face without a towel around it. Yes honey, it hurts that bad. However, if I try to use ice when it's just starting, then ice makes it worse by sending pain through the entire nerve. Does that make sense?

I decided to start taking vitamin B. I have started on vitamin b12. I need to research the rest of the B vitamins before I take them. I want to be informed.

I am going to call my neurologist this week and "ask" to be stepped up to 1800mg gabapentin although I am already doing that. It's not that I'm hiding it, it just kind of fell into my lap. (You'll have to read previous post for the whole story.) I am going to call. If I don't, it's really going to screw up my refills and I may end up with no pills at the end of the month...

I really am starting to look scary. Since Saturday I have been on the couch if not taking care of my kids. And I don't mean eating bon bons and watching soaps (I'd never do that anyway). I mean nursing the unstopping pain. I have long long hair and it's starting to look like I'm trying to concoct dreads or something. Either that or a nice magpie nest. My husband gets home at midnight (swing shift) so he promises to take care of the baby and let me shower. Thing is, I don't feel like it. I've noticed a depression and a decreased sex drive. Is it the drugs?

I found a GREAT youtube video that makes me feel understood. It's a Seattle News broadcast (I used to live in Seattle, yay!).

Watch it, you'll love it too.


Friday, December 5, 2008

Shocking (haha)

So yesterday felt like a mini vacation from TN. Can you believe it?

It started out with an attack early in the morning, around 2am, but I was able to fall asleep within a half hour with an ice pack strategically placed over my ear and lower jaw (near the lovely mental foramen - man it gets me every time).

My husband woke me up at 11am to take my meds. I have been taking them at 11am, 5pm, and 11pm. (Trying to space them out during the waking hours). I couldn't get out of bed without his help. My knees are killing me! I went from 11am to 3:30pm without an attack. At 3:30 I started getting a stiff lower jaw and some throbbing near my ear/TMJ. It was then I noticed I had put my glasses on!! I took them off and tried a little ice and some relaxation and within 10 minutes or so the stiffness and throbbing disappeared. It happened again at 4:30 because I was stressing over my 2 year old taking a nap (he's teething the 2 year old molars, so fun). But I quickly made myself relax and again, the attack went away shortly therafter (I didn't even need ice that time!).

I went from 4:30pm until sometime in the middle of the night without an attack!!! I couldn't believe it! I credit it to upping the gabapentin and being careful of triggers. HOWEVER, I think my middle of the night attack stemmed from the McDonald's cheeseburger I ate at 11pm (darn cravings!). Acupuncture.com says to avoid foods high in fat. I don't know if any diet changes always work but as most TN sufferers know, I'm willing to try almost anything. So out goes the fast food along with the caffeine. Maybe the combination of diet change and drug therapy will work!

I also had an attack this morning, as I was waking up, and it included a headache and eye ache. Ice helped it along as well as 2 Excedrin Migraine tablets (and yes I know Excedrin has caffeine). The attack was painful, on a scale of 10 I'd say a 7, and within 20 minutes it was over. Since that attack I haven't had another one yet (knock on wood) which is very unusual for me. For the last 2 months I have had them almost back to back. I can usually tell when they are starting up because I get a dull shock to the mental foramen or near my TMJ. That's when I calm myself down and relax, sometimes applying ice and it helps it to go away.

The one thing I am really confused about is the pain I sometimes get in my throat. It's only on the right side and it hurts so badly. I cannot put ice on it or heat as both make the pain much worse. I can even press on my neck near the brain stem and feel it in my throat. When it is inflammed there is a noticeable difference when touching each side of the throat. The right side feels swollen. I do not have a problem swallowing though.

QUESTION: Has anyone has this problem or is this a separate issue?

Thursday, December 4, 2008

Stepping It Up

Well, my friends, I have taken the advice of my RN mother and have stepped my Gabapentin up to 1800mg daily. She is encouraging me to consult with my neurologist on this but I'm unable to find the words as to how to explain why I self medicated. It started last Friday when my GP refused to refill my hydrocodone. (She said I was refilling the scrip to fast - which makes me feel like she thinks I'm some addict, oh well. She hadn't even HEARD of TN until I sent her some info on it so she probably has no empathy on how much it hurts.) Anyway, I digress, since I didn't have any pain medication (which I ultimately discovered usually doesn't relieve TN pain) my mom suggested upping my gabapentin until I got into the neurologist, which was 3 days away. The next day, I immediately noticed a difference. I had fewer attacks and the attacks were shorter. But, on Monday, after the neurologist, I decided to go back to the normal dosage. I think that's why I've been in such pain those next 3 days. It didn't dawn on me until last night so I went back up to 1800mg (from 900). Today I have noticed a difference. I have only had ONE major attack today. Can you believe it??? Knock on wood! I have had 2 smaller attacks that went away quickly and were relieved by an ice pack. Praise the Lord. I also want to thank my husband and family for their prayers because I really do believe in the power of prayer.

Oh yes, and after the first of the year, I am looking into contacts. My lovely Vogue glasses seem to trigger attacks. That pesky little arm sits right by that nerve and the tiniest of pressure sets off an attack. So this month I may have to walk around blindly or wear my glasses funny. Whatever makes it work.

Also, I'd like to point out a terrific site I found - Living With TN

Check it out, it's a godsend.

Wednesday, December 3, 2008

Side Effects and More

Dr C said I could start out taking 400mg (instead of only 200mg) of Carbemezapine a day (along with the 900mg of Gabapentin). In 6 days I will be up to 600mg. And still we may have to play with the dosage. I'm praying for relief. Even one day would be a godsend.

Gabapentin side effects I have noticed:
The urge to drop glass
Weakness, unable to support myself or pick anything up after long periods of rest
Extreme fatigue

TN triggers to date:
Pressure to the face
Sneezing
Coughing
Headaches (or maybe vice versa)
Too much talking
Too much smiling or other facial expressions involving the lips or jaw
Drinking through a straw (sometimes)
Lightly touching the face
Cold air/weather
Wearing my glasses (going to look into contacts)
My tongue touching buccal mucosa (the inside of my cheek and lip)
CLENCHING (usually happens during the night)
Cold or hot drinks (varies)
Chewing (sometimes)
Caffeine (including chocolate, soda, etc)

That's all I could come up with off the top of my head.


I have been depressed the last couple days. It's hard not to feel that way. So much pain and so little I can do about it. I feel helpless and like a failure (even though I know deep down that I am neither of those things). I also feel like a burden to my dear husband. He is a trooper in all of this and understands me so well. But, this leaves him shouldering the bulk of responsibility in the house along with a full time swing shift job. He takes care of our two kids (infant & toddler) as much as possible in order to give me silence during the painful episodes. I feel like all of this just fell in our laps. I am so grateful I didn't start pulling teeth!! There are a few things that help distract me from the pain and that's blogging, digital scrapbooking, hot showers, and sleep. Those 4 things can help like no other.

Other things I have been trying (besides distractions) for pain relief are:

Hot pad/ice pack (though half the time they each make the pain worse)
VERY Hot showers or baths with my face right in the heat of it
Acupressure
Working on self hypnosis/hypnotherapy (that helped through my first pregnancy/labor)
Meditation (not helping so much)
PRAYER

I would like to try:
Acupucture

I would like to learn more about:
The Healing Rooms Ministries

I may consider:
Upper cervical chiropractic treatment
(NOT a fan of chiropractors)

I would like to read:
Insights as well as End the Pain, both of which can be purchased here

I would like to wear:
www.endthepain.org wristband as well as this awesome scarf! (the black one, not the scary half face one) (maybe :P)

Monday, December 1, 2008

Neurology Appointment

So this morning, I went to my first neurology appointment. Dr C., and his med student M, went through my health history. Then M did some standard neurology tests and everything was going well until Dr C decided to test my eyes. He took a q-tip and touched it toward my left eye, I flinched and felt it right away. When he did this to my right eye, I didn't feel it or notice it (he put the q-tip towards the corner of the eye). I didn't even flinch. Also, when they were doing the light tests with my eyes, M had to use his fingers to open my right eye wider.

They decided to step out into the hallway to discuss their findings. They talked about trigeminal neuralgia but were worried about my decreased optical blah blah on my right eye and Dr C brought up the possibility of a tumor. (I don't know why doctors think you can't hear them right outside the door!).

Dr C prescribed Oxcarbazepine (to take on top of the Neurontin/Gabapetin). I went to the pharmacy to get it filled and found out that my super fantastic insurance doesn't cover it. The pharmacy tech put in a call to my doctor's office to get a new scrip but they were out to lunch for an hour. I am supposed to hear something by this afternoon.

I have a scheduled MRI tonight at the hospital. My husband has had several MRIs due to his epilepsy so he's given me the MRI down low.

As a sidenote, my GP declined my request to refill my hydrocodone on Friday. She said I was filling it too fast. So this whole weekend I have been in pain. My mom
(a hospice RN) had me step up the Gabapentin this weekend to see if it will help. It did for the most part until I stepped it back down this morning. I had an episode in the doc's office this morning and it damn near brought me to my knees.

Will post more when results are received.

Friday, November 28, 2008

Getting Better

The pain attacks are getting under control. I really think the Neurontin is kicking in. I have had fewer episodes and when I do have an episode, as long as I take a pain pill or apply heat, I can stop it if I catch it early enough. I am almost out of hydrocodone though and I won't make it though the weekend with the amount I have left. I have been taking 10mg a dose (my prescription is for 5 mg pills) and I only have 5 pills left. I am going to see if miraculously tomorrow I can get a refill. If not, I am going to cross my fingers that 5mg will relieve pain.

I have my first appointment with a neurologist on Dec 1st (Monday). Hoping that goes well. Since I am still having attacks, a nurse at their office suggested that they may consider upping the dosage of neurontin.

I am careful as to what I've been eating. I read on this blog, that sugary foods seem to be a trigger. I've noticed that to be true for myself too. So as soon as I drink something sugary (like soda) or eat something sugary I immediately brush my teeth, because if I don't, it seems like an attack is imminent. The pressure trigger is the biggest one. If I even SLEEP on the right side of my face I will be in pain. The pain doesn't wake me up though. Usually the baby will cry and when I wake up, I notice the pain. I have a problem with clenching my teeth at night so I wear a dental guard and it has really helped minimize that problem.

All in all, I have noticed a big difference in the amount of pain episodes although they seem to be more frequent at night.

Monday, November 24, 2008

The Green Tea Debate

So I did my own little Green Tea experiment. Of course, I'm not talking about the good for you, cup of hot green tea. I was addicted to Arizona Green Tea. Yum Yum.

On Sunday, Dan and I moved. That night I had a killer headache. I had ingested about half a gallon of tea over the course of the day so I think that, and the massive amounts of hydrocodone cause a migraine. I also had many many facial nerve pain episodes that day (hence the hydros). The migraine lasted through the night (only on the right side of my head too, the same side as the nerve pain) until my mom coaxed me into taking 2 Excedrin Migraine tablets.

The rest of the day I didn't drink any green tea (mostly in part because I didn't have any left), however, that night I picked some up and drank it an hour or two before bed. The pain started within 30 minutes.

Today, I haven't had any green tea and I haven't had any major pain in my face. I am going to have to rule in favor of the article (somewhere on the net) that claims Green Tea can trigger attacks.

Friday, November 21, 2008

Too Early

It is too early in the morning for me. I just went to bed 5 hours ago. I am in so much pain right now. I popped 2 hydros and am doing some heat therapy. No relief yet. If it doesn't work soon I will try getting in a hot bath and soaking my face...

5 minutes later - the pain is gone.

Thank goodness.

Sometimes I question my diagnosis. Is it a toothache or is it TN? THIS SITE gave some reassuring information.

"Pretrigeminal neuralgia, an early stage of trigeminal neuralgia, is characterized by intermittent, aching pains that last minutes to hours and perfectly mimic toothache or temporomandibular joint disorder,” Graff-Radford said. This pain confuses patients and dentists alike."

I noticed that many TN sites talk about pain lasting seconds to minutes. It's comforting to know that it can last for hours because sometimes my pain goes on for up to two hours.

Also:

"The source of the problem can often be traced by injecting anesthetics into various parts of the nerve, and can be treated with anticonvulsant drugs or surgery on the nerve."

At my first dentist appointment in August, Dr. H had to drill into the bone and inject anesthetic directly to the nerve because I couldn't get numb and the nerve pain was so severe. I think there were a combination of things that cause this problem. And no, I do not blame Dr. H. He is a FANTASTIC dentist and I will continue to be a patient in his office.

Alrighty, back to bed. Wow, an attack that lasted about 15 min. Very promising. Maybe the neurontin is starting to work?

Oh, I forgot to mention. I got into a neurologist on Dec. 1st! Dr. C had an opening due to a cancellation when I called to make the appt. I am so excited!! (I was previously told it would be after the new year before I could get in.)

I'm also not sure if I mentioned it but I know stress to be a huge trigger for me. I have been trying to pray on it and give it all to God. It seems to be working some. I have been grinding and clenching my teeth at night too. I have a night guard that I should be wearing. Tomorrow night I will, and we'll see if I have minimized episodes over the night.

Thursday, November 20, 2008

"Off With Your Head"

That's how I feel right now. Just take it off. This is probably one of the worst attacks ever. I feel like I am dying a slow death. I can't even cry because it will make it worse. I have to keep my face from moving. I wish I could just sleep all day today so I wouldn't have to anticipate another attack. I woke up at 7am, took two 5mg hydrocodone, and hopped into a hot bath. I soaked the right side of my face in the water and after about an hour, the pain was gone. I lasted about 5.5 hours until the next attack, which is now.

Wednesday, November 19, 2008

Pill Box

Today has been a long day for me. I am tired. I don't think I am getting enough sleep. Between my two month old waking up to eat and my 2 year old waking up due to teething I am awake alot during the night. Right now my nerves are somewhere between calm and just before the beginning of a pain attack. I feel some stabbing, just lightly in the second nerve branch (the one that runs along the top teeth/sinuses). I took a hydrocodone at 9 but am trying to avoid taking any more. The limit is 8 in a 24 hour period. I don't know exactly how many I have taken today but I think it's a couple over 8. 9 or 10 maybe? I didn't count so I am not sure.

I told Dan I would like to get one of those older people pill boxes. I already can't remember if I've taken my neurontin during the day. That's not good. I mean it's 1 pill 3 times a day. At lunch I can't remember if I tool the lunch pill because half an hour before I was thinking about taking it and don't know if I followed through. I need a pill box.

No Escape

I can't seem to escape this pain. Just when I think I have it under control, BAM, the onset of pain is sudden. This morning I tried meditating in bed while holding a hot towel to my face. Eventually I fell asleep, but as soon as I was awakened, the pain was back full force. The hydrocodone kinda sorta helped but not for long - two hours at the most. I usually blog while in pain, hoping maybe if I concentrate on something else it will help. I have found that if I do something, anything to keep my mind off the ice pick stabbing/electrical shock feeling, then I don't notice it so much. If I'm just sitting there, concentrating on the TN then it hurts a dozen times worse. I have searched the internet for pain relief ideas and just haven't found anything worthwhile yet. I really hope this neurontin works.

It's 6:15am

I've been up with pain since my 2 month old woke me up at 5:40am. I've taken 10mg of hydrocodone, 300mg of neurontin, and have been applying a heat compress. It is being mostly felt in one area - upper right wisdom tooth to my ear.

Tuesday, November 18, 2008

Better Than Yesterday

Today has been a little better than yesterday. I haven't had as many bouts of pain, however when I did have an episode, only time would bring relief. None of the old standby relievers helped at all. I distracted myself from the TN by playing with my toddler son and working on my digital scrap projects. I've noticed that increased stress seems to make the pain worse as well as cause it to hang around longer. Also, loud agitating noises (kids screaming) put it through the roof. Here's hoping to better sleep tonight!

Pain Triggers and Relief

I read some interesting information regarding green tea and gluten. Apparently green tea helps promote antioxidants and reduce inflammation. However too much sugar can irritate the nerve. I drink green tea everyday, probably too much of it. It has 17g of sugar per 8 oz. That's much less than a can of regular soda. No matter, I will try and be aware of how much sugar I'm consuming daily. I'm at the point that I will do anything if it might relieve the pain.

Actually, right now I am having an episode and it has been going on for the last 40 minutes. Mine usually dissipate within 2 hours, so only an hour or so left!

This article also discusses using ice as way to help ease the pain. I'm partial to a hot wet cloth. In taking this advice, I've had an ice pack on my cheek (off and on) for the last 15 minutes and I actually think the pain has spread along the nerves. I am not feeling relief, just a cold cheek and stinging face.

Gluten is thought to be a trigger. According to this article, a gluten free diet may actually decrease facial pain. Well, let's try it. Maybe after Thanksgiving, I'll give the gluten free, low processed sugar intake diet a try. No Sugar, No Starches? Who knows, I'll probably even lose a few pounds!

Question: What has been your experience with green tea, gluten, and/or ice?

To read the article yourself, click HERE

Monday, November 17, 2008

Nov 17th Continued

I will edit this post today to update throughout.

Right now I am having another pain episode. It started on the upper teeth this time and pain is slowly making its way to the bottom teeth. Dan mentioned that his mom has an electric heat pad. I wonder if that would soothe me. I have been heating up moist towels and applying them but it's a pain to routinely do so and the towel cools down very quickly.

I think it's interesting that I am in so much pain - over a 10 on a scale of 1 to 10 - but I can sit here and type. It seems that as long as I can focus on something and not literally think about how much it hurts, I can try and be numb to it. Of course it only seems to help a tiny bit, but that tiny bit is giving me hope. The hydrocodone makes me extremely sleepy. I am going to take another pain pill and see if the babies will allow me to sleep a bit.


645 PM: The previously mentioned pain episode lasted 2 hours that time. I didn't feel relief until 530 or so and I had also taken another hydrocodone. It seems like I need a stronger dose, maybe the 10mg, because I am needing to take 2 of the 5mg pills in one dose. When I get close to needing a refill I will email the doctor and request a higher dose.

I read on the TNA board that someone didn't feel relief with the neurontin for 3 weeks after beginning the drug regimine. (*Wow, I really hope it doesn't take that long.) The TNA boards are a great source of information and support. You can find an easily and if you post a question or blog, the other forum members are supportive and empathetic.

You can access the boards here, however, to read or post you will need to sign up for a free account.


8:00PM - Feeling good right now, started getting another bout of pain at 7:15 but I popped a pain pill and it has mostly subsided except for a burning pain in my upper right molars. I am going to attempt to play with the kids and not think about the pain. I have noticed another trigger. If I run my tongue along my gums on the right side it triggers an episode. It does take more than one touch however too many turns into an attack.

The Beginning

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:
Side: Right
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.