TN report

TN (trigeminal neuralgia) is a pain. That’s the closest I can come to making a joke about it.

I’ve been on the medication for 8 days now. First the good news: I experienced 2 pain-free hours on Wednesday. I was so high that I can’t describe it. I went to Whole Foods and bought salmon to celebrate.

But, by the time I got it home to eat, I was back in pain.

The worst of the pain – the searing electric shock-like pain all through the right side of my face and scalp – is muted some, but not gone. I still have attacks every once in a while (somewhere between a half dozen and a dozen per day). And I still have the ongoing pain that usually feels like it’s in my teeth and that makes it very difficult to eat or drink. I’ve been surviving on too little fluids and soft foods that I don’t have to chew much.

Then, very early Wednesday morning (4 a.m.) I had to visit the ER to deal with side effects of the medications. The doc there also gave me a prescription for a very large dose of Motrin (in the form of what I call horse pills) to help deal with the pain. He told me that the medication I'm on (Neurontin) is one that takes awhile to build up and that the doc will probably increase my dose when I see him this coming Thursday.

Today it isn’t too bad – comparatively.

I have continued to teach. I just have to minimize how much I talk and to stop talking for pain attacks occasionally. It is interfering, but I don’t have sick leave or disability pay, so I just keep with it. Students have asked me a number of times why I don’t stay home when I'm so sick. Someone suggested I check into going on disability through the state, but my understanding is that the benefits are so small that I wouldn’t really be able to live on them. I can barely make it on what I make teaching, and I have lots of people I need to pay money back to. I need to work more, not less.

And, compared to last winter, it isn’t too bad. The attacks then were more frequent and would go on sometimes for 4 or 5 minutes instead of half a minute or a minute now. Then excruciating pain was waking me up out of my sleep often. Now I’ve only been awakened a few times. So I'm really feeling somewhat grateful that it isn’t worse now than it is.

I'm trying to communicate it to you in a way that you get it, and I suspect no one ever will without experiencing it themselves – or at least watching me experience it. In that way it’s like depression. People who’ve never been clinically depressed just don’t get it. Similarly, people just don’t get the pain of TN. It’s so frustrating for me. I want people to understand.

Here are some of the things I do that set off terrible pain: walking heavily, carrying things, lifting, bending over so my head isn’t upright, sometimes moving faster than a very slow pace, chewing and drinking (as I’ve said), smiling (really, I can’t even smile), talking, holding a phone to my ear, washing my face, showering, touching my face, turning my head too far, and more.

I was just reminded of one of the side effects of the meds because it just happened. At least I think it’s a side effect of the meds. Maybe I'm just really tired from not sleeping well. I suddenly almost nod off to sleep while I'm sitting at the computer or watching TV or sitting at a stoplight. I have to be very careful driving if I'm not really rested. Mornings are OK. On the way home from work is a problem.

The TN discussion group that I’ve joined has been a Godsend. I can talk to and hear from people who truly understand what I'm talking about. Some of them have it even worse than I do, too. Maybe not worse than last winter, but worse than now.

So, there you have it. At least I hope you do after reading what I’ve written.

Michael

Trigeminal neuralgia and me

As I said in my last message, I’ve been diagnosed with trigeminal neuralgia. I’ve been dealing with this for nearly a year and possibly longer than that. Here’s a brief review of the history since late November, 2004 (in case you weren’t reading these by then):

For a little over 4 months last winter I experienced severe pain in my mouth, face, and scalp. It was so extreme that I couldn’t work most of the time. Because I knew I had some dental work needing to be done where it was hurting, I went to a dentist, thinking that was the problem. I subsequently had lots of dental work done (3 root canals and an extraction), tying to relieve the pain. I also had a medical consult for possible neurological problems, partly because I had Bell’s palsy 10 or 12 years ago. The doc suggested that I take a vitamin B complex and prescribed Amitriptylin, which I couldn’t tolerate without significant side effects. Eventually, after the last of the dental work was done, the pain went away. I thought it was all over with, and another doctor just let it all pass.

Then about 6 weeks ago, I began having some of the same symptoms again. It grew worse and worse over the weeks. Finally it got to the point of being severe pain again – enough that I couldn’t eat (and didn’t for a week until a couple of days ago), could only drink with terrible pain (and became dehydrated), couldn’t sleep well or for very long, and could hardly talk (always with great difficulty). Tylenol with codeine reduced the pain some, but never eliminated it.

I went to the dentist several times, the last time on this past Thursday. They had said repeatedly that they couldn’t find any dental reason for my pain and said the same thing this time. So, they sent me over to the medical side of the clinic to be seen. There I was diagnosed with trigeminal neuralgia, a neurological problem in one of the main facial nerves (the trigeminal nerve, of course).

Here’s a brief description of TN from the Trigeminal Neuralgia Association web site:

“What Is Trigeminal Neuralgia?

“TN (Trigeminal Neuralgia / tic douloureux) is a disorder of the fifth cranial (trigeminal) nerve that causes episodes of intense, stabbing, electric shock-like pain in the areas of the face where the branches of the nerve are distributed - lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw. By many, it's called the "suicide disease". A less common form of the disorder called "Atypical Trigeminal Neuralgia" may cause less intense, constant, dull burning or aching pain, sometimes with occasional electric shock-like stabs. Both forms of the disorder most often affect one side of the face, but some patients experience pain at different times on both sides. Onset of symptoms occurs most often after age 50, but cases are known in children and even infants. Something as simple and routine as brushing the teeth, putting on makeup or even a slight breeze can trigger an attack, resulting in sheer agony for the individual. Trigeminal neuralgia (TN) is not fatal, but it is universally considered to be the most painful affliction known to medical practice. Initial treatment of TN is usually by means of anti-convulsant drugs, such as Tegretol or Neurontin. Some anti-depressant drugs also have significant pain relieving effects. Should medication be ineffective or if it produces undesirable side effects, neurosurgical procedures are available to relieve pressure on the nerve or to reduce nerve sensitivity. Some patients report having reduced or relieved pain by means of alternative medical therapies such as acupuncture, chiropractic adjustment, self-hypnosis or meditation.”

If you want to know more about it, see the Trigeminal Neuralgia Association website, http://www.tna-support.org/.

The doctor gave me a heavy-duty anti-seizure medication (Neurontin) that’s one of the accepted treatments for the condition. They also want me to go for an MRI to rule out tumors and multiple sclerosis, both of which are sometimes present when someone has TN. They’re looking for a way for me to see a neurologist and get the MRI at low or no cost since I still don’t have insurance or make much money. (Teachers, especially substitutes – even long-term ones - are incredibly underpaid, in case you’ve never heard that.)

I’ve now taken the Neurontin for a couple of days, and it has reduced the pain some. Specifically, I'm not having the excruciating “electric shock” attacks I was having all through the right side of my face from things like lightly touching my face, moving my mouth, the shower running on my head, turning my head, the wind blowing on my face, and so on. I'm still having ongoing pain on my right side in my teeth, TMJ, and ear, though. That still makes it difficult to eat or drink. I have to force myself to drink anything and to eat even things that don’t take much chewing. I know that it’s going to hurt a lot.

And there are side effects of the Neurontin. I feel spacey and fall asleep easily at odd times. And I'm still on low doses of it.

In addition to the medical treatment, I’ve done some internet research, and I’ve joined an internet discussion group for people who have TN. I’ve learned a lot in 3 days.

I want to share some of my experience over the past 11 months.

TNA says, “By many, it's called the ‘suicide disease’.” I admit that I have considered suicide many times while this has been going on. The pain is intolerable. People who haven’t experienced it have no idea. Imagine the worst pain you’ve ever experienced, and then double or triple that, and that’s the pain of TN. I think that maybe Antoinette was the only one who understood because she was with me so many times when I experienced the attacks, and she saw my reaction to them. (And once again, I am filled with gratitude and love for her because of her caring and help.)

One of the things that really hurt was all the people who didn’t believe me, who thought I was malingering or just lazy because I wasn’t working, who thought I was exaggerating, and so on. One person said that she had had root canals (when I thought it was a dental problem) and hadn't had that kind of pain, so there “must be something wrong.” (In other words, I must be lying.) There was something wrong. I had trigeminal neuralgia, not just dental problems. Several people said I seemed fine when they saw me, so how could I be experiencing what I described? Well, I can hide the ongoing moderate pain pretty well, and I just didn’t have any of my attacks while I was with them. So, yes, sometimes I look OK. But a few minutes later I'll be in excruciating pain from an attack, and I can’t eat or drink without severe pain. I think this is what hurt most, even more than the physical pain. I needed support, and from a lot of people I got doubt and accusations.

I still need support. I still don’t know how I can live with all this pain. It was nearly impossible for me to teach because of the pain that talking caused me. But I kept going because I didn’t want to let the kids down and because I need the money. I need people to say to me, “I understand, and I care” instead of accusing me of making it up or thinking there’s no reason for me not to work.

I don’t know if I'm going to be able to teach this coming week. I just don’t talk when I'm away from work except when absolutely necessary. I nod and grunt and “uhn-hunh” and write out what I need to say. That’s what I did when I went in to talk with the pharmacist about some concerns – I wrote out all the things I needed to ask about. That way I only had to say a few words.

Thank God for computers. At least I can communicate this way.

So, that’s the story. I'm sure I'll write more about this as time goes on. But for now, I'll let it rest.

Namaste,
Michael