Monday, December 29, 2008


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!). 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
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
Working on self hypnosis/hypnotherapy (that helped through my first pregnancy/labor)
Meditation (not helping so much)

I would like to try:

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: 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.