Okay. Update. This post is largely in response to a request from a reader. As many of you might remember, I have Trigeminal Neuralgia. For those of you unfamiliar with it, it’s a neuropathic disease which affects the trigeminal nerve, the largest nerve in the brain, causing unbelievable head and facial pain. Most scientists, doctors, neurologists, health care professionals, and patients widely consider it to be the most painful disease known to mankind. I’m not kidding. Google it. It’s also widely known as “the suicide disease.” I’m not kidding. Google it. Look at the Wikipedia entry. The last time I looked at it, it was there.
Not many people have it. Somewhere between 35,000 and 40,000 Americans have TN. That’s all. That’s why there’s virtually no R&D done on it. There’s no money to be made in it. There are two major types of TN: Type 1 and Type 2, often also referred to as Atypical TN. I have Type 2. It’s extremely rare. Only about 5,000 Americans have it. I’m one of about 5,000 Americans who have this rare, unbelievably painful facial disease.
The pain is hard to describe accurately. I can only under-describe it. Type 1 pain feels like sharp, electric shocks coming in quick, hard jolts through your face in 15, 20, 30, 40 second episodes over and over again for 30, 40 minutes, one hour, three hours, five hours, then maybe a break for awhile, then perhaps days, etc. It’s unrelenting. The electric shocks are supposed to be ungodly. I don’t experience these with Type 2. The pain usually centers in eye sockets, temples, cheeks, and jaws, although sometimes teeth and gums, as well as foreheads are also impacted. Sometimes even the back of the head. There are triggers. Eating, dental work, brushing your hair, wind, rain touching your skin, foul weather, anything brushing your skin, occasionally stress, it can be just about anything. Sometimes there’s no trigger.
Type 2 is different and a lot harder to diagnose. Instead of a series of short, sharp, insanely painful attacks, Type 2 people experience nonstop, usually all day, unrelenting dull, aching, yet also sharp (if that even makes sense), intense, otherworldly pain centering in similar locations. Allegedly, the pain is slightly less severe, but because it lasts virtually all day, every day, often for days, and in my case, weeks and months and even years, every day, I would assert that in some cases, such as mine, it’s much, much worse. You get no break. It’s horrible. It’s incapacitating. The first year I had it, beginning in the summer of 2010, through the summer of 2011, I spent most of my afternoons and evenings in bed, unable to function, able only to do things in the mornings when my pain was less intense, and even though I’ve not always been bedfast this whole time, I still schedule all of my appointments for early in the mornings and run all of my errands early in the mornings when I am able to, because by my early lunch, I’m usually in a great deal of pain and by after lunch and for the rest of the day, am unable to function as well as I would like, sometimes not at all.
There are treatments, medications, and some temporary surgeries, but only one possible cure, through a risky brain surgery. There aren’t any medications specifically for TN. There’s no money to be made in developing a medication for something that so few people have, so none of the companies have done so. Thus, neurologists and pain management specialists give out other types of medications for pain. The most commonly prescribed medication is Tegrotol, which I’m allergic to. The second one is Neurontin, which did nothing for me. Most TN patients are on incredibly high doses, usually well past the daily maximum recommended doses. Often they don’t get pain relief. Lyrica is another popular medication. There are many others. Sometimes people take Klonpin. I’ve taken that for years, but it does nothing for my pain. Two I take that have helped are Keppra and Topamax. After I started taking them together, I didn’t get a TN attack for some months and that was nice. Of course, there are often side effects and with those two, I had severe drowsiness for two months and fell asleep in my chair every morning and every night at 7:30 pm. It was annoying. Of course, most people with TN have extremely severe pain and these types of anti-seizure and anti-depressant medications only do so much. Sometimes people with 10 out of 10 on a 1-10 pain scale need something stronger. Unfortunately, as I’ve learned with some research, people with Type 1 are not helped with narcotics. People with Type 2 are. I have been taking narcotics since 2010. They used to help quite a bit. However, my pain levels increased threefold over a year and a half ago, and they ceased working like they used to and I had to start taking more and more for less than half the aid they once provided. This was annoying, in part because I didn’t even like taking them in the first place. Indeed, the first thing I normally do is take over the counter medications. I don’t even know why. They’re useless. I just don’t like to jump straight to the heavy stuff. I start with Advil, Tylenol, etc. Then move on to Excedrin Tension and Advil Migraine. Then I go to the prescription non-narcotics, such as Treximet, which used to help, and Sumatriptan and Naproxen, which has torn my stomach to shreds. Then it’s on to the heavy stuff. However, a couple of months ago, I had to bite the bullet and after five and a half years, admit with the help of four doctors and two pharmacists that I had reached my tolerance level and it was time to move up to something more powerful. When my pain management specialist gave me my prescription, I was horrified, because it was for a medication I’ve always heard about and had always heard negative things about and I’ve always heard it’s risky as hell to take this and indeed, when I did research, there were all sorts of warnings everywhere about it. I talked to another doctor and to two of my pharmacists and they assured me they thought it would be safe and good for me and would help me, so I got it filled and pondered things and several days later, started taking it, wondering what the hell would happen. Well, I’m still here. And it has helped. Some. I was hoping it would eliminate my pain, but it has not. I did further research and talked to my doctor and found out, it will not. My doctor told me their goal was to minimize my pain and restore my quality of life. Well, it’s definitely cut my pain, some of the time, perhaps even a lot of the time, certainly in the mornings, so that’s good. I’m also taking a second narcotic for “breakthrough pain” when needed, which is more often than I would prefer, but I’m still getting significant pain episodes, so it’s necessary. But less often than before.
So, what kind of procedures have I had and what are available? Well, I started out having Gasserian Ganglion Blocks. You have to be put out for those. They involve putting a needle through your cheek up through your mouth to your middle cranial cavity housing your V2 trigeminal nerve “tendril” (that’s what I call them) — there are three on each side, giving you sensations in three quadrants of your face on each side — and anesthetizing the end of the nerve. They have to put you out because if you felt the needle connecting with that nerve end, the screaming would unnerve the entire hospital. Allegedly. I’ve had quite a few over the past five years now. Many don’t work at all. Not even for a day. Total waste of time and money. A couple have worked for several months. One worked for a year, so that was a good investment.
I’ve also had Botox injections, which haven’t helped me much. The longest any have helped my pain levels have been two weeks, reducing my pain about 50%. They’re supposed to help for 2-4 months, reducing your pain 100%. There are also steroid injections. Lately, I’ve been having Trigeminal Nerve Blocks, which I don’t think I’m reacting well to. With the last one I had, last week, I had significantly bad pain afterwards for three days. In fact, the third day afterwards was one of the most painful days of my life. It was absolute hell. If it were possible to rate pain over 10 out of a 1-10 scale, this would have been perhaps a 17. I couldn’t move, think, function, could barely talk, couldn’t read, nothing. None of my pain medications helped. I wanted to die. I actually thought about killing myself. Twice. That’s the first time in a very long time I’ve thought about that. It was horrific.
There are more major surgeries. There are four long term temporary surgeries, including Gamma Knife and Radiofrequency Ablation. I’m thinking of having a Balloon Compression surgery, which is long overdue. I finally made an appointment this week with a strongly recommended Nashville neurologist for next month to discuss this and other surgical options. Why Nashville? There’s only one group of neurosurgeons in Chattanooga and they’re idiots. I met with one last year for this same purpose. I told him my situation and he had never heard of TN Type 2. I was stunned. He didn’t know what it was. I explained it to him. He didn’t believe me. I had to provide documented proof. It’s his fucking field! I know it’s rare and only 5,000 people in the country have it, but if specialists in this field don’t even know of it, you’re pretty screwed. Indeed, I’ve been trying to find help elsewhere for sometime now. Last November, I went to Vanderbilt’s Neurology Headache Clinic. It was a waste of time. They didn’t do anything that my current, local neurologist wasn’t doing. I was turned down by the Mayo Clinic last month. I have no idea why. I’ve decided not to apply to Johns Hopkins. I don’t like their program. The Cleveland Clinic doesn’t even treat TN! Shit. What do you have to do? The one major, biggie surgery is called an MVD. It’s a brain surgery that involves cutting open the back of your skull, going in and rearranging the arteries around the trigeminal nerve and anything else that might be touching it and aggravating it, and if necessary, simply cutting it in half, which is a bit extreme. It used to take a long time to recover from, although that process and time length has really improved. It’s a risky surgery though. It used to be slightly lethal and some neurosurgeons were reluctant to do it. It still can be lethal. A little fewer than 0.05% of people (I think — could be a little wrong with that figure…) undergoing it die on the table. But most people consider it a worthwhile risk. Apparently, the more experienced the neurosurgeon, the better your chances of survival, so it’s in your best interest to find someone good. People travel all over the country to find someone good.
And why has my pain increased threefold? Well, over a year ago, I started getting extreme back pain out of nowhere. Since then I’ve been to my orthopedist and rheumatologist umpteen times, as well as physical therapy for six months, which did nothing at all. After getting all sorts of x-rays and other images and tests and whatnot, I found that I have severe curviture of the spine, spinal stenosis, massive amounts of osteo-arthitis throughout my entire body, worst of all in my hands and lower back, severe disc degeneration in my lower back, so much so that it’s bone on bone in the bottom of my spine and discs above that aren’t much better. I also have severe nerve damage in my lower back and a broken tailbone, as well as pain in my hips and legs stemming from my spinal and disc problems. I wrote a blog post about some of this not too long ago: CT Myleogram and Emergency Procedure. Additionally, about a year and a half ago, I started getting a new and different type of head pain. It was bilateral — TN is almost always unilateral — and felt different. It also wasn’t responsive to any of my procedures and not really to any of my medications, except occasionally to my narcotics. My then-new neurologist diagnosed me with three new head pain disorders: tension headaches, severe migraines, and cluster headaches. For those of you who don’t know what cluster headaches are, many scientists and doctors also feel that cluster headaches, like Trigeminal Neuralgia, are the most painful disorder known to mankind and they are also called “the suicide disease” by some. I don’t know how you reconcile the two, but in any case, I allegedly have both, so I’m totally screwed. However, my wife and I feel there’s a FIFTH undiagnosed, untreated head pain disorder that remains undiscovered that we’re really frustrated about that we feel my doctors aren’t really trying to find. Thus the desire to go out of town. The reason is, I’ve been given a ton of old and new, even experimental, migraine and headache medications and these headaches respond to absolutely none. Not one. They’re responded to no procedure. They’ve responded to nothing. At least the clusters often respond to TN treatments. So in our opinions, this can’t be a migraine. So what is it? So, Mom keeps asking when I’m going to have brain surgery. Like it’s nothing. Well, there are two reasons. First, Type 2s don’t respond nearly as well to any surgery, especially MVD. They just don’t and no one knows why. Second, even if I did respond well to an incredibly expensive, risky surgery and it eliminated my TN pain, I would still have my daily 10 level severe head pain and have to take my same pain medications and it would be pointless. Until this other head pain is diagnosed properly and treated, I see no point.
Surgeries. My back doctors are recommending back surgery to repair my nerve damage, a possible spinal fusion, surgery to remove my tailbone (which I refuse to have), and down the road, two probable hip replacement surgeries. Great. I already mentioned the balloon compression surgery for my head.
Get this. In the past three months, I’ve already had SEVEN minor surgical procedures! Seven. I’ve had four in the past three weeks alone. One was an emergency procedure for a procedure that went bad. I’ve had four procedures that have gone into my spine in the past two months. I can’t tell you how exhausted I am. I’m so tired out by all of these procedures, I don’t want to have another in a long damn time. But I probably will. That’s just how things work out.
I have Trigeminal Neuralgia Type 2. I have a shitload of other problems to contend with right now too. All seem and probably are serious. All are relatively debilitating in one form or another. I haven’t been able to work in over five years. I miss working in an office, doing something productive, interacting with co-workers. I miss having a social life. I feel badly that I can’t take Gretchen out on the town like I’d like to. I feel like I’m screwing her over badly. But she’s got a really good attitude and she’s incredibly supportive and I really couldn’t make it without her. She lets me talk and she listens. She offers input when I ask for it. She takes care of me. It’s damned nice of her. That’s true love. I’m very lucky to have her.
If you ever meet anyone with TN, I hope that this blog post will have helped you to understand their situation to a certain degree. I hope you will understand their feelings of helplessness and hopelessness. I hope you will be supportive. I hope you will say a kind word to them. Meanwhile, thanks for reading this, if you did. And have a good weekend.