The pain from my infected wisdom teeth and my TN had started to worsen considerably, and by Saturday night I was in the ER. I was throwing up and shaking so badly I was practically moving the gurney across the floor of the hospital room. They said my tooth was definitely infected and needed to be pulled (have to love the doctor for his glaring statement of the obvious) They also said I had a pretty decent fever. It took two hot blankets and some pain medicine to stop the shaking. They sent me home with more pain medicine, some medications for nausea and referrals for my tooth.

It seems sometimes when I am in the midst of one long attack, or a couple of bad attacks, that it takes normal pain medications to kick me back into normal gear. It is now Monday night, and my TN pain and fever are significantly better. My tooth feels slightly better, but I am still going to call around to some dentists to see what I can do about having in pulled without insurance. Doing that for me is usually difficult because with my TN, I have to undergo IV sedation to have it pulled. The only problem with that in my book is the price. Some people have issues with anesthesia and things such as that, but I am lucky enough to not have any problems with it. If I do end up having it pulled, that will have finally taken out every single one of my teeth on that bottom left side that normal people use to chew with. I barely remember what is was like to eat certain foods!

Well, I have been doing so fabulously on that medication that I have felt no need to write. I had not even noticed how long it had been since I started taking it. I was so incredibly happy to finally have found something that worked. Even though nothing cures or treats TN completely, there are things to ease the frequency and severity of attacks. Instead of having multiple long attacks a day, I went from having maybe one or two short ones a month. It changed my quality of life dramatically. Now, because of a wisdom tooth infection and changes in the weather, I haven't been doing too great.

I went to my doctor a few days ago, and told him I had been getting more attacks, and he automatically upped my dosage of this medication. He said I was on the minimum dosage, and if I felt I needed more, I shouldn't even hesitate. I have been waiting till I get paid to see what kind of negotiation I can work out on the price of the medication again (since I will be needing more). But I had an attack last night that started at one a.m. and lasted until four a.m. My wisdom tooth that I still have intact on my TN side is infected (I think), which is a definite trigger for an attack. Because of how awful my teeth are, most of my teeth problems on that side will trigger it. I believe now that my TN contributed to the pain I had from abscesses in my lower molars, all which have since been pulled. I was not aware of my diagnosis when I had these pulled. In my communication with others who share my diagnosis, teeth problems seem very common among those with Trigeminal Neuralgia.

Weather is also an issue for people with TN. We are like barometers, when the weather changes from cold to warm, or visa verse, it worsens our pain. When we go outside, the slightest breeze or sun shining directly on our TN side will start an attack. It causes many of us to barely be able to leave our homes. I have been lucky to not have an issue with breezes and such. Only when the weather changes is when I get worse. The weather here has been very bipolar lately, which is why I have not been doing so great.

I always post in hopes that someone with a similar story will read this and feel a sense of connection with what I have been through. This is a very lonely disease, and we need as many friends who can empathize as possible. My other hope is that someone who is not aware what is wrong with them may read this and realize that this is what they have been going through, and that it may help them to seek treatment. Take my advice, it is worth it!!

2:1

I went back to the free clinic yesterday after a horrible day being in pain. I saw a different doctor than the one that had previously diagnosed me. He said that the ER doctor must not be that well informed, because having a prior case of shingles is not the only way to get TN. He asked me to describe the pain and frequency I have been experiencing, so I did. He literally asked me if I had memorized something out of a textbook about this disease because it was so exact to this diagnosis. He said he completely agreed with my diagnosis of Trigeminal Neuralgia. So now I have two doctors in agreement, one not.

He gave me a prescription for a new medication, and I happily took it to the pharmacy. It is a combination of nerve pain medication and anti-seizure medication. But because I don't have insurance, it turned out to be way too expensive. I was able to get two weeks worth (because he told me to come back to see him in two weeks) at a reasonable price. I breathed a huge sigh of relief and took the first dose last night. It was the best nights sleep I have had in MONTHS. Instead of waking up eight or nine times a night...I woke up once. And even that was only for the neck pain that I get from the nerve being messed up. The pain did come back a few hours after I woke up though. Not sure how long it will take to help with the pain during the day. I start work tomorrow so I am praying I can make it the whole six hours with minimal amounts of pain.

Once Again...

Well, I went to the ER again on Thursday. I had been in so much pain for almost two weeks straight…which is very rare. I just couldn’t deal with it anymore. Drove myself to the ER, almost running out of gas on the way (which I didn’t notice till I got to the hospital) I got through the admittance process fairly quickly. I was happy to finally have something to tell the nurse other than “My head is killing me!”, because that does not even begin to describe it. The doctor came in to see me. His white coat said “ER Supervisor”. I figured they had him see me because Trigeminal Neuralgia is not a very common problem. He examined me for about five seconds, and said it had to be TMJ. He asked me if I had ever had a shingles infection before. I hadn’t. He said that the possibility of me having Trigeminal Neuralgia without a preexisting shingles infection is basically impossible. He said that without nerve tests, there was no way he would even suggest it being TN. I was so upset. I KNOW my body. I have had TMJ for many years. I know exactly what it feels like. It does NOT feel like this. It does not come in shocks, it is not an electric pain, and it doesn’t make my entire face feel like someone tasered it. He gave me a shot of Dilaudid and sent me home with some Loratab. I don’t think he even cared. He was in with me for maybe five minutes max. I have had some pretty decent ER docs before…but this one was so rude. He basically said my other doctor was a complete idiot for even suggesting a diagnosis other than TMJ.
I went home, just praying that I would sleep through the night for the first time in two weeks. Let’s just say I did not end up doing that. I thought the Dilaudid would end up knocking me up, but instead I was up and down all night in pain. It dulled it a bit. I started taking the Loratab the next day, which also dulled it. I stopped taking my prescribed medication for the TN because I was having a minor allergic reaction to it. I decided I need to try to get the same doctor in the free clinic again. Then we will see what he says to all of this!

The Beginning Part 4

I was okay for a few weeks. I got a call from the hospital that I needed to come back in for the MRI results. Believe me, I hightailed it over there as fast as I could. The doctor that I had seen in the past was busy, so I saw someone else I didn’t know, and who didn’t know my history. He told me that the results were normal. (Which I already knew) He basically sat there and asked me what I wanted him to do. He kept stumbling over his words. While he was muttering, I wondered if he was new at this. Then he said “You know that medicine they shot you up with? It comes in a pill form. Do you want a prescription?” I of course agreed.

So I went on for the next few months. The first few weeks after I got the prescription, I took It religiously, like the doctor had said. Slowly, I tapered off, and found no need for it. I took it here and there, on the days when I had attacks, or felt attacks coming. Some days they got really bad, but some days they just went away. I never knew what it really was. They said an off use for that medication was for migraines. I just figured it was an atypical migraine and left it at that. I had periods of agony for a few days that made me wonder why this was happening to me, if it really WAS migraines, and why on EARTH would it not go AWAY?! Those occurrences left me physically and emotionally exhausted.
Finally, in September of 2010, I got my answer. I was having a particularly bad episode. But I knew enough now that going to the ER wouldn’t do me much good in the long run. I started taking my drug for it religiously again, but it didn’t help. I don’t remember why, but I started doing research again on my pain. I came across a page, and almost started crying. This was ME. This is what I’ve been suffering with all this time. It was describing exactly what I had been feeling. I couldn’t believe it. Trigeminal Neuralgia. It sounds ominous, doesn’t it? “Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. If you have trigeminal neuralgia, even mild stimulation of your face — such as from brushing your teeth or putting on makeup — may trigger a jolt of excruciating pain.” (Mayo Clinic) Welcome to my life. I never figured out what triggered it until I figured out what was wrong. Now I find that touching it, massaging it, things I thought would logically make it feel better actually make it worse. I also found out the morphine probably did not work for me because TN is a nerve disease. It was also why all the tests and scans showed nothing.
I started looking into doctors I could see that would be able to help. It’s not easy for me because I don’t have a real job or insurance. I figured that my free clinic would not be able to help, because they just do basic things. I went to the clinic for another reason, and happened to get a younger doctor. So I took a chance, and told him my story. Before I even mentioned what I thought was wrong, he said, “You’ve given me a great case for Trigeminal Neuralgia.” A diagnosis. Finally.

The Beginning Part 3

One weekend, my family went on vacation. I opted to stay at home for some reason. Friday night I was once again getting sick from the pain. I started to go to the car, and got so dizzy I almost passed out. I called 911. I told them that I also suffer from panic attacks, so they just assumed that was the problem with my head, and sent an ambulance. Actually, because I was having shortness of breath and chest pain, they also sent a fire truck. Did I mention this was around almost midnight? I’m sure my neighbors were ecstatic. They came in my house, and decided that I could walk to the ambulance on my own. (It was clear they had already assumed that all I wanted was a ride) They took me into the hospital, and left me in the ER waiting room. Once again, I got a fancy little bag, and a wrist band. Then they put me in a dark waiting room and told me someone would be with me in a minute. (Come on, we all know that in a hospital “minute” is medical speak for “two hours”) I ended up being in that room for three. The darkness of the room eased the pain a bit, yes, but it was still awful. I tried pressing my head against the chair, the wall, the floor, anything. I was desperate for some relief from this piercing pain. Finally, a nurse.
They took me back to a curtained in room, where I changed into a gown, and waited for another hour. Evidently nighttime is the busiest time. I saw a familiar face peek around the curtain. This was a doctor I had seen a few times before, and he knew my story. He had someone with him. A small, younger man, in civilian clothes. He told me that because I had been in so many times with the same issue, and never had any change, they needed to do a spinal tap. I had a feeling that they thought I was possibly drug seeking, and the idea of a spinal tap would make me run for the hills. But I immediately said yes. Anything that could possibly identify what was causing so much pain, I was willing to do. At that point, you could have told me to go jump off a bridge because it might help my pain, and I would have done it. I won’t go into detail, but that was one of the worst things I have been through in my entire life. (Granted, I have not been through childbirth, but I know a lot of people who would prefer childbirth to a spinal tap!) They had given me some sort of pain medicine for the procedure, but I didn’t feel any relief. After it was done, they gave me some morphine while they waited for the results. Needless to say, the results came back negative. I almost cried. What is wrong with me?? When the doctor came in to give me the results, I told him I was not feeling the morphine at all. He looked at me funny, and said, “I gave you enough morphine to knock out a 200lb man.” Yet I felt nothing. I had never had morphine before, so I figured maybe I either was not used to it, or it was just one of those unlucky things that happens. He told me he wanted me to come back for an MRI the next morning. I left the hospital (without getting shot up with medicine this time), and got a few hours of sleep. I came back at six am for the MRI. Only my head was inside of it, so I was not scared. When I was done, the woman who had done my scan said everything looked fine, but I would be contacted by the doctor with the official results.

The Beginning Part 2

“Oh. %*!@” (insert chosen expletive here) The pain came shooting from my left ear up to my eye and down to my jaw. It felt like someone was sticking a hot poker in my ear, and the other end was coming out my eye. Definitely one of the worst attacks I’ve had. Even the brushing of my hair on that side of my face caused pain. I immediately downed a double dose of Motrin (hey, it’s the equivalent of the prescription dose, give me a break) and picked up one of my library books. It’s practically a routine by now. Four or five times a night I would wake up with this pain, take some form of pills (on the off chance they would actually ease it), and pick up a book. Meaning I usually slept in two hour time spans in between being awake for an hour or more waiting for the pills to kick in. I could barely remember what an actual full night of sleep felt like. It’s really a good thing I don’t need to get up early. I would never function.

It all started last year. It seems like a lifetime ago. It came on slowly. At first I thought it was just a bad migraine. The night came, and I was still in pain. By the next day, I was thinking it was never going to end. Wondering maybe it had something to do with my jaw…maybe a brain tumor…anything I could possibly come up with that would justify this intense amount of pain I was experiencing. By the third night, I couldn’t handle it anymore. I had my parents take me to the ER. They shot me up with something, and sent me home.

A few weeks later, it started again. I tried every over-the-counter medicine known to man. Even hung myself upside-down off my bed, thinking maybe it’s a sinus thing, and this will make it feel better momentarily. (Try it when you have a cold…it’s great!) I spent many sleepless nights in pain, not knowing what to do or where to turn. The pain seemed to intensify at night. I ended up in the ER again. This time, I was throwing up because of the pain. They apparently now have cool little nifty bags to through up in, instead of basins. I took one home with me. They did CAT scan, and found nothing. The doctor said my sinuses looked completely normal, as did everything else. Once again, I got a shot full of medication, and was sent home. I was in and out of the ER for a few months after that. It was beginning to feel like my second home.

The Beginning Part 1

“These will keep you busy,” the well-meaning librarian said about my stack of books. “Yes, um, I read them at night when I can’t sleep,” I said. I didn’t want to explain that it was the pain that kept me up. No one likes to hear about chronic pain. It’s not pretty, sexy, or interesting. (I can just picture the conversation….”I got shot in the head today Jane, how has YOUR day been?” Of course, it’s not an actual bullet, but it may as well be.)
On the drive home, the shooting pain made me pull over for a bit. When I finally got home, all I heard was noise. Oh joy. Running footsteps greeted me at the front stairs. “Oh.” The visiting kids dashed away after discovering it was only me. No one else bothered to see how I was. They were used to me being in pain by now. I went to get an ice pace for my neck, and pondered my situation. No money, no real job, still living at home. Not to mention the pain.
Oh the pain. It’s not an easy thing to get people to understand. People like me are often thought to be having bad migraines, or to be seeking attention. In reality, there is nothing we would like more than to escape it.
My brother banged on my door with his fist. “Dinner.” Living with the pain and living with kids is a joy. Really. I promise. It’s great. Right? Mealtimes usually are the worst for me. You would think I would lose weight eating so little, but I have yet to be that lucky. It’s a double edged sword. On one hand, I get yelled at by mother for not eating enough, or not eating what everyone else is. (But logic has overcome, and they have pretty much given up now) On the other hand, I immediately regret eating when the pain kicks in. But I have to eat. Have to keep going. Keep living. They call it “the suicide disease” because the pain is almost constant and excruciating, and some people just decide they can’t live with it anymore. I understand that…but it is never something I would do.