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.


"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.