Tuesday, April 05, 2005

The Demon-Spawn Is Back: Trigeminal Neuralgia Attacks Again

Yes, my fellow bloggies....that personal hell I refer to as "Demon-Spawn" is back: I am suffering yet another nasty attack of trigeminal neuralgia.

For those who've never had the disorder (lucky you) or known anyone who does, trigeminal neuralgia is a rare disorder which causes horrific facial pain. For me, it's on the right side of my face (coincidentally, the bulk of my MS symptoms are on the right side of my body as well).

I was first diagnosed with it 6 years ago, after months of failed treatments for TMJ (which is what my doctor at the time was convinced I had). It took a neurologist only minutes to determine that TMJ was not the culprit, TN was. I had never heard of it before. I resolved to learn as much as I could, but what I learned was not particularly optimistic.

TN is often referred to as "The Suicide Disease," because so many sufferers attempt to kill themselves to get away from the pain. Never fear, Zen fans...I am not going to be one of them. I love my husband and kids too much for that. I'd rather live in pain than be without them, or cause them the pain of my untimely demise by my own hand.

For years, my TN was mostly under control. It flared up from time to time, but my meds took care of it and after a few days of a liquid diet and added rest, I would feel better.

Well, all that changed late last year. Suddenly, my pills weren't working anymore. And the pain was worse than it had ever been. I had never, ever felt pain like it before. And I've had gall stones, kidney stones, back labor and natural childbirth. I'd take all of those at the same time rather than go through a bad TN bout, let me tell you. Alas, not an option.

My doctor was nonplussed by my condition. I was informed that for many TN patients, there comes a time when you become nonresponsive to medications. I had not known this, and I felt such overwhelming panic at the idea. Never fear, there are surgical options...and I was told that my best bet was gamma knife surgery.

But there were a number of catches: first, I had to complete all my extensive dental work first, because many TN sufferers get worse or have new outbreaks as a result of dental work. That would take months. Second, the surgery doesn't work all the time for everyone. Even if it did seem to work...the TN could come back. But the creme de la creme: for some people, the surgery actually makes the TN WORSE. This is inexplicable to me. But I am out of choices, so surgery it is.

Until then, pain relief is my only option. Vicoden no longer works, so I'm on Oxycontin. And as of the day before yesterday, that isn't working anymore, either.

I wasn't expecting this. It took six years of Vicoden therapy before I ceased to get any relief from the drug. It's barely been six months of Oxycontin. To say that I am disappointed and a little frightened is an understatement.

Now, I am going to have to see my doctor today and find out what else can be done. I hate doing this. She's going to be pissed that I missed my last dental appointment (sorry, but I had a sick toddler who wanted nothing more than to nurse 24/7, and I don't think the dentist wanted to work around her). And if I'm exceedingly unlucky, I'll have to take yet another piss test to prove that I'm not a drug-seeking junkie. I loathe doing that, it is incredibly demeaning. I've given, over the past few years, more than a dozen clean piss tests to doctors...and yet, they still want more proof that I'm not looking to get high instead of what I'm really doing, which is looking to be able to sleep for a few hours. After being poked and prodded (making the pain even worse), I will, if I am fortunate enough, get a shot of Morphine. Perhaps then, I can sleep and be free from the pain, even if only for a little while.

So what's so bad about TN pain, you say? Good question. As I'm going through it as I type, I'm going to try to describe it.

The pain, for me, starts just above my right eyebrow. Imagine the worst migraine you've ever had, times 10, and focused on one tiny point in your head, drilling into you as if it's hoping to discover oil. That's what it feels like in that area.

But wait! There's more! Imagine there's a straight line drawn from that pinpoint above your eyebrow, behind your eye and all the way down to your jawline. Behind your eye, it feels like a hot brand pressing into you, marking you as a cow belonging to the TN Ranch of Hell.

Believe it or not, we're just getting warmed up. In my experience, the focal point of the pain, the absolute worst of it, occurs at the cheekbone level. Now keep in mind, I am Native American...I have very high cheekbones, one of my few vanities. They are just under my eye, and very prominent. From that point all the way down to my jaw, it feels as if a downed electrical wire has been trapped under my skin and is periodically zapping 1000 volts directly into my face. Zap! Zap! Zap!

In between zaps, there is this aching soreness that won't go away. Sometimes it feels as if I've had a hundred charley horses in my face. Every now and again, my face will actually swell up from it, but my prescription-strength Ibuprofen usually takes care of that pretty quickly. This soreness often radiates to my ears, and it begins to feel as if my eardrums will burst.

If the spasms of pain get very, very bad...my entire face will be in agonizing pain. And if the pain gets very, very, very, VERY bad...my jaw will actually lock up. This is when it becomes truly unbearable, and I, who am very good with pain, will begin to break down and panic. I even became hysterical once, and am not one who is prone to hysteria.

When my TN is acting up, I can barely speak. I can't eat. And I certainly can't sleep through the pain. It completely and totally incapicitates me in a way I never knew pain could do to a person.

What triggers attacks? Well, sometimes there is no telling. Often, though, I can determine what set the awful pain into motion. And it's amazing what tiny, insignificant things can set it off. Strong winds brushing up against my face. Chewing (I've been on a liquid diet for months because of it). Putting on make-up (I couldn't tell you when the last time I wore blush was...but I remember it hurt like hell). Stress and lack of sleep are good aggrivators of my TN, too. And if I forgot to take my Tegratol...I am almost gauranteed an attack. Even an hour late will make a big difference in the amount of pain I can expect to battle.

What do I do when I have an attack? Well, my first line of defense is to stop doing anything that might be causing it or aggrivating the situation. I've found lately, for example, that some of my exercises jump-start the TN, so I've had to discontinue them for the time being. My next step is to take pain relievers and relax while I wait for them to kick in. By "relax," I mean sitting down and doing something to take my mind off the pain (if that's possible): reading, playing around on the Internet, message boards, blogging, playing Sims Urbz on the DS (don't laugh, I'm actually addicted to this game, and I hate video games, lol).

I usually wait an hour for the pills to take effect. If I have some relief, I simply go about my day. If I'm lucky, I have total relief. But sometimes, like now, I get no relief from my medication. That's when things become increasingly unpleasant.

I have two choices: contact my doctor and see if she can see me, or go to the hospital. Of the two, I prefer to go to my doctor. It's faster, easier and better all the way around. Of course, it's not always possible. Sometimes, she can't see me in enough time. Or, the pain gets markedly worse during non-office hours. In those cases, it's off to the ER I go.

I hate the ER. It's usually noisy and crowded, and there's no telling how long I might have to wait. Even an hour is a lifetime when you're in so much pain you can't even remember your own name (and yes, that's happened to me). Most of the time, I am seen by a doctor who is completely unfamiliar with TN. Sometimes, I luck out, and not only has the doctor heard of it, but they are completely sympathetic. They also realize that I am an easy patient: just give me a shot and send me on my way. I love those kinds of doctors.

I am not often lucky.

The vast majority of the time, I end up with Tin God schmucks who either think I'm drug-seeking or think the pain is "not that bad" (have you ever tried it, Bozo?). Soemtimes, I get an asshole who is irritated that I am "wasting his time" with a chronic-pain issue. Never mind that I have a pain-management contract that allows for me to go to the ER if the pain is unbearable. They could care less. And then there are the dorks who don't have a clue what to do, even though said contract is right there in front of them TELLING them what to give me. They still waste time, calling the senior asshole in charge, then my doctor on call, and maybe even their mothers in Pasadena before coming back and giving me the shot of Morphine the fucking contract stipulated to in the first damned place.

I hate the ER.

One of the worst aspects of the ER experience is having to tell a hundred people exactly what it going on before you can get the much-needed shot. In other situations, this might not be so bad. But when you can hardly move your mouth, much less talk, without almost passing out from pain...giving the information over and over again becomes a form of torture which should be covered under the Geneva Convention as far as I'm concerned.

To minimize this particularly unpleasant scenario, I have devised what I call the "ER Cheat Sheet." It's a form I keep typed up on my computer and revise as necessary, then print out and bring with me to the ER. It contains all my information, so that the need to speak is kept to a minimum. I've been praised for it by more than one nurse, as it makes everyone's job so much easier. I highly recommend it, if you ever find yourself also suffering from a nasty attack of Demon-Spawn.

Here's my Cheat Sheet (with my personal info X'ed out, of course):


My name is Angel XXX. DOB: XXXXX. SSN: XXXXX.
Doctor: Dr. XXXX of XXXX, XXXXX.
My address, phone number & insurance information have not changed.
TRIAGE NURSE: Please photocopy this for my chart.

I have trigeminal neuralgia (pain in the right side of my face.) I have a pain management contract. I’m to go to the ER if meds aren’t working & pain is unbearable. I AM NOT OUT OF MEDICATION; IT IS NOT WORKING.

Other conditions: I also have MS, tachycardia, & hypothyroidism.
I am allergic to codeine & the tetanus shot. No other known allergies to medications.
I’m nursing; I’m 18 months postpartum. My last period was XXXXXXXX.

I am taking the following medications: XXXXXXXXXXXXXXXXXX

History: Diagnosed with TN 6 yrs. ago. Pain begins just under right eye near nose & continues in a line down face to jaw, worst at cheekbones. (feels like a live wire trapped under my skin, spewing electric shocks into my face). It’s not constant, but in between is a sore ache. It’s excruciatingly painful. I can’t eat, speak or sleep, due to pain. I have no other unusual symptoms; no numbness, headache, trouble swallowing or other pain.

Until 12-04, it was mostly controlled by Baclofen, Tegratol & Vicoden as needed. I can’t take Amitryptiline, because I’m nursing. I took Neurontin for 6 months, & had severe side effects (migraines, vertigo, vomiting, hypersensitivity to touch & depression).

In the past, I’ve had shots of Morphine & Phenergan (I get sick from shots) for pain. Please put shots on right side to avoid problems with my cane. My husband will be driving me home. This note was updated today (XXXXX).

Thank you,


With a "Cheat Sheet," you don't have to speak to Admissions, you don't have to speak to the Triage Nurse...and if you end up with a particularly accomadating doctor, you won't have to speak to him, either.

For today, I am hoping my doctor can see me. I haven't slept in two days, and that is not making the situation any better, I'm sure. Otherwise, I'll have no choice but to head out to the dreaded ER. I most assuredly cannot continue this way. No sane person could. And I would like to retain my sanity, as I've grown quite fond of it.

I hope this has been informative. If nothing else...it kept me busy for a little while.

Wish me luck...

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At 8:15 AM, Blogger Ron Southern said...

I'm so sorry, Angel. I can relate to your discomfort and pain, but I can't compete. If I had any good advice to give, I would have taken it all myself already and you'd have to get your own prescription. Life's a dirty trick sometimes.

At 11:10 AM, Blogger Angel said...

(((((Angel))))))) My heart is hurting for you. I'm praying for relief, no Tin God attitudes, and answers about your surgery.

At 2:15 PM, Blogger Pixie LaRouge said...

Luck. Lots and lots and lots of luck! I hope it eases quickly this time and waits just a little longer to attack next time.

At 12:47 PM, Anonymous Anonymous said...

This is really something. I'm Angel too.

Well, briefly, my story goes like this: I had a root canal one day and two weeks later had another root canal in the same tooth and 2 weeks later had another corrected root canal in the same tooth again, but this time, by an endodontist. I have been diagnosed with TJM syndrome and although no one will give me an MRI to confirm it, I have been told I have TN.

I have always been a very happy person and very committed person, but dealing with this pain has caused me to really feel down and miss too much time from work and not to mention choir rehearsal. And oh yeah, I love to sing, and I know that this is just an attack of the enemy to keep me from walking in my gift...but I WILL SING!!!

My pain is in my forehead, both cheeks, in both lower jaws, have felt some pain in throat, pain on both ears, pain in different areas of my head, pain in the back of my head that radiates to my neck, and this is the part doctors keep telling me is impossible and looks at me like I'm crazy...the pain is now going down my back, my arms legs and feet. This is something I have not read frequently in my research.....but I sure would like to know what it is. I'm still trying to get an MRI done. I've seen a Neurologist and he basically told me this was all in my head and refused to give me any test except tested my reflexes!!!!

My dentist told me maybe he had damaged a nerve and that I may have tmj. He called in another dentist who said he hadn't the slightest idea what it was and they can't pinpoint every ache and pain. It varies from person to person he said. I take wellbutrin (for menopause); I've had the following for this TN and TMJ: darvocet, hydrocodene, clindamycin (for antibiotics during root canal), valium (to relax my muscles), advil and been prescribed neurontin but haven't taken it because I didn't like the side effects I read. I'm wanting to know why is it that I have this tingling feeling in my legs and arms and feet and sometimes pain in one toe, coupled with movements in different areas of my body, and feeling like something is on my skin on different areas of my body? When I tell doctors this, they are looking at me as though I need to be put in the insane assylum? This really upsets me. I know dr.'s are not GOD, but don't they know I wouldn't come in tellnig lies when I'm looking for answers and relief?

There are other things I've read that has indicated I could have something else associated with the TN and tmj problems, but I'd rather not put any ideas in anyone's head before they tell me what they think this might be.

Can you help me and tell me what to do? I appreciate any input you or anyone else can give me.


At 12:19 AM, Blogger Zen Angel said...


I strongly recommend going to the website for the Trigeminal Neuralgia Association. The good people there might be able to help you.

You're in my prayers.

Here's the website:

Good luck.

At 6:26 PM, Blogger Rachel said...

I have suffered with pain and discomfort from my trigeminal nerve as well...Plez, plez...pray...press into God and ask for His guidance and healing and if He leads find a good chiropractor...I am going to one associated with Maximized Living. You don't need pills or surgery...God designed our bodies to heal themselves. This was the first step to my healing. My symptoms are slowly dissolving away and none of the other 8 doctors could do anything to defeat this Demon. I pray God's fervent touch on your body, mind, and spirit by the blood of Christ!

At 6:32 PM, Blogger Rachel said...

Felt it important to add after reading an additional comment:
I too was having numbness and pain radiating down into my hands, legs, and feet. It is all connected to this nerve. Please check out this website for some additional info:http://www.ctds.info/sitemap1.html This lady went through what we are going through and won the battle.

At 11:14 AM, Anonymous Neurontin Prescription Information said...

My name is Karen Tobin and i would like to show you my personal experience with Neurontin.

I have taken for 4 months. I am 54 years old. Was taking 1800 mg per day for pain, numbness and scalp soreness. It helped immensely and right now am weaning off of it taking 300mg two times daily with no noticeable side effects.

I have experienced some of these side effects-
Drowsiness and dizziness.

I hope this information will be useful to others,
Karen Tobin

At 10:06 AM, Anonymous Anonymous said...

Thank you, Thank you, Thank you...you have expressed all that I feel. I was just diagnosed. For me it's my left side of my face & pain meds don't help. For me to get through the pain I use self hypnosis, the dangerous part is I do freeze up & lock my jaw so those that don't know what's going on just see me still. Like a statue, which did me no good during the Black Friday rush or while driving. I wish you luck...I'm not brave enough for surgery at this time, however I could see me going down that road in the future. Best of luck to you!

At 3:50 PM, Blogger rose g said...

Hi Angel I know exactly how you are feeling. I have had TNfor about six years. It is pure hell. I never knew such pain existed. I have been in remission for a couple of months but I know it will be back to haunt me as it always does and each attack is worse than the last and lasts longer and the medicatoins do not control it anymore. I didn't know you could have a contract to go to the ER. I am going to ask my doc to give me one. Thanks for the info. I was reading about Laser surgery and a portable ultrasound machine that is supposed to help. You could check those out. I haven't tried them yet but I'll do anything if it helps. Good luck to you. Your not alone. Rose G.

At 9:15 AM, Anonymous Anonymous said...

Angel, I don't know how you do it with a little one who is nursing, and others as well. I wish I could give you a story of success, but I can't.I have been trying to find a visual of an attack. You describe yours so well - and I'm so sorry that you or any of us have to go through it. I must look like the girl from the exorcist or some horror picture when I am in the throes of an attack, literally throwing myself all over the mattress, screaming, hoping that some miracle occurs and the pain will go away. When I say that I am having an attack, people say, oh I've had a headache too, or my friend has migraines. I want to yell and say, that is like a grain of sand. With my saint husband's mantra and anywhere up to an hour of screaming and throwing my body around, I usually fall asleep in total exhaustion. I wish you all luck in this horrific disease. I had the brain surgery; it helped with the some of the pain but not all and the TN in my face is beyond dibilitating. I wish I had an answer........my only one is that you/I/others must be thankful for the love we give and get. And hope - against hope I'm afraid - that someday this will go away. I have heard from some that it does. I wish for you and me and so many others that it will.
With much love and light and angels for all of us.


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