Slacking

Slacking with some reason. Since the arrival of the Beast in earnest, I've been looking for a trend to latch onto for discussion. A month on and it's become clear that the only trend is that things do not get totally out of control on the current medication regime. I did grit my teeth and up my Gabapentin to the prescribed dosage (800 mg thrice daily, enough to flatten a Budweiser Clydesdale).

Yes, I get occasional Goofies, as well as other less agreeable side effects from time to time. (More on that below.) The proper dose, plus the Baclofen, seems to have shored up the gates against the full-on, out of control breakthroughs that have so often made going to Hell look more like a reward than a threat by comparison. One can't relax the vigil, however. I've taken a couple of long anti-cabin fever walks in our recent mild weather and wound up regretting both of them.

Later on, I may have to educate the new neurosurgeon, as I did one when this started, about the imprudence of tapering the dose. Back then, I was only a few days into his optimistic taper when I had a really unmanageable breakthrough. In full summer, which really sucked. The jury is still out on the question of whether my mystery right-side neurovascular compression is manifesting TN symptoms.  As I commented in the last post, I have no idea if I had precursors. I have to work hard to remember any life without TN.

Today I finally shipped off my paperwork and DNA sample for the Yale study into the genetic origins of trigeminal neuralgia. It appears one has to be selected for the study, as I was. That is owing mainly to having landed in the right hospital, with the right neurosurgeon. My particular neurological freakishness may also have made Dr. E think I was a good candidate. At any rate, there are a few clinical hoops to jump though, followed by a pile of red tape and an agreement to do a DNA "buccal" (cheek) swab. Oh, and this isn't a paid study. It may not even make chances of a cure, or even better treatment, possible in my lifetime. It's paying forward for the next generation. I have a  daughter, who agreed to take part in the study. If the Yale hypotheses are correct, and genetics do play a role in TN, she is at risk. As a woman, she is at greater risk, as TN affects women over men by a ratio of about 5 to 3. I would pay it forward in any case.

I don't have a particular aversion to medical red tape (I handle it for a living), but the questions required one to describe the experience of my episodes as objectively as possible, and how if at all the experience has changed over the years. The Beast was kind enough to drop by to refresh my memory about the current state of things, and I've looked back on my old posts to see what my impressions were several years ago. It's somewhat disagreeable to relive the older experiences. One gets through this by not looking back too much.

I had quite a round of side effects today, which unfortunately started when I was on the road. The most interesting one was a line of thought that morphed into a hallucination of a melting face a la Raiders of the Lost Ark. (Clinical knowledge is very helpful at moments like that, as in "oh, what an interesting hallucination," vs. "God, my face is melting!")

When I had got myself back home and into bed, I had two consolations. One was our cat, who came up on the bed to give me a once-over before lying down and staring at me intently. It reminded me of the joke about the vet, his cat scan and his lab work. I felt I'd had the cat scan and was now under observation.

The other is a little harder to keep in mind. I consider that side effects, unusually intense now because of the change in dosage, are the price I pay for not having breakthroughs two or three times a day for two or three months of the year. The breakthroughs were the initial price for not having unmanageable pain eight months a year. Most of the time, the side effects are a fair trade.

Today's experience bordered on the unfair, which made me glad I had the cat scan to smile about.

Indefinite

My town's legislature is an open town meeting. When a question comes before it that the meeting, or actually its leadership, aren't quite ready to address it is "indefinitely postponed." This says that the question is a good one whose time has not yet come.

The question of my TN surgery has been indefinitely postponed.

I'm for this, and I didn't even have to argue for it. The neurosurgeon understood that as long as my TN is contained  within tolerable limits by drugs, no carrier in the US is going to cover surgery.

Contained is the word. My present trifecta of drugs is doing a good job containing the TN. I'm having to use Clonazepam very rarely, which is a good thing. Alone of my medications, Clonazepam can create clinical dependency. I didn't know that I had turned the corner into dependency until I began taking Baclofen and found that I couldn't take both at the same time. The pair of them knocks one out so fast that one barely has time to lie down. Cutting back K had to happen, which led to a fortnight of interrupted sleep and extreme crankiness. Not much of a dependency, for sure ( I hadn't increased the minimal dose), but enough to be a warning. One neurosurgeon I saw called Clonazepam "a witch." I know what he meant now, and I'm back to using it only when the neural pot is about to boil over. Trifecta + K + T=containment (where T is my absurdly increased pain threshold). 

It's all a high wire act in which every step has risks. I've hit the safe maximum on Carbamazepine and Gabapentin. It's a question for my physician whether running up the Baclofen would be any help at all. Clonazepam is addictive. My pain threshold is now so high that I run the risk of sustaining serious injuries without even noticing them.

I had the latest instance of that a couple of weeks ago when my platelet donation failed. Failure of the stick is an occupational hazard for platelet donors, because it involves needles that are nearly the diameter of the vein itself. I knew there is always a risk of a hematoma extensive enough to cause at least discomfort after any blood draw, and I knew what to do about it. 

Several days after this failed draw I noticed that I had a pretty extensive hematoma. It was big enough to cause discomfort at least. I felt nothing. Up to a point, pain can be your friend, but that friend is gone. It's hard to remember to check visually after any injury when every accident seems like an incident.

Let's not forget that people with chronic illnesses will be the first under the bus when the Trump Congress gets busy dismantling Federally subsidised health care. I don't know what my personal pharmacy costs every month. Unlike most people, I have the tools to find out, although even they are mostly linked to Federally mandated rates. When I have a moment, I should look at this.

And no, MassHealth and similar state programmes won't help for long. Once the Affordable Care Act is gone, and the Tinker Toy Trumpian "substitutes" are in place, there will be a seismic shift in coverage for care. Programmes like MassHealth are likely to be snowed under as carriers, especially from neighbouring states, dump their chronically ill  into them. (That happened before ACA to a small degree. I worked at MassHealth for a time, and screening the dumping attempts was part of my job.) There will be more on that later. 

Congress is doing magic that they don't understand. Once they have done it, neurosurgery in this country will be priced off the table, and it's unclear whether my meds will be similarly priced out.

It's a bleak future. For those who try to live with a chronic disorder, it may be bleakest of all.

Year something or other

Well, the Beast is here. The current trio of medications is doing an adequate job of containment When I say "adequate" I think of how my nurse supervisor was explaining TN to my co-worker. She pointed out that when I say "no pain," it means "tolerable pain."

That's about right. I measure my periods of complete remission in weeks now, in the warmest weeks of the summer. The other end of the spectrum, of course, is the breakthroughs, the part that gets the physicians' attention. The other eight or nine months are the tolerable months: hardly worth explaining, even to friends and family. Some clinicians, like my boss, get it and don't push it.

For years, I have followed the request of the physician who first diagnosed this pleasant companion, and kept a journal of episodes and pain levels.  My favourite measurement is the Mankoski Pain Scale, which is more exact than the silly faces most such scales employ. For those with Tn, indeed those with most neuropathies, it has one weakness. It measures pain in part  by tying it to conventional painkillers. Because painkillers have no effect on TN at all, I just edit that part out. Because I live on a diet of anti-convulsants, there is also no point at which "medication not needed" applies.  To use the scale, I rely on the degrees of distraction Mankoski describes.

Journals get discouraging after a dozen years. The executive summary is that I've crept upward through the middle Mankoski levels, hitting 7 yesterday. It was at the end of the day, so there was no need to test my "effort." For me, TN pain doesn't interfere with sleeping, most of the time, although the hallmark of the more intense levels is that it makes getting to sleep difficult, until the evening drug cocktail plus Klonopin kicks in.

So here we go again.

Goofies

Strange, but neither my PCP nor the current neurologist had heard the expression "goofies" applied to Gabapentin side effects. I understand the expression comes from drug culture, but while the origins may refer to recreational drug jollies, the side effects of Gabapentin and Carbamazepine (Tegretol) aren't all that amusing. People who take these drugs are trying to get control of their pain, not trying to get high.

It is frustrating as hell to have the drugs that do control neuropathic pain, pain that nothing else controls, randomly turn on you. It's not pain, fine. But it's called goofies because it throws such treats at you as dizziness, disorientation, and distorted vision (because your eyes roll). That especially sucks when it happens whilst driving or doing some job that requires dexterity or concentration.

My two main drugs between them fill nearly two pages with side effects, and when one adds such extras as Clonazepam and Baclofen (or a few others I don't have) it's a wonder we can get out of bed. One couldn't, if one didn't spend several weeks adapting to the drugs. One can never be totally sure.

Goofies are on my mind because I've had them yesterday and today, today combined with a couple of moderate TN jolts. Life is fun.

Warnings

It is the season of precursor pain, the dope slaps the Beast administers as a reminder that it is always there. Before diagnosis, I would get episodes three or four times a year, much like today's breakthroughs, two or three times a day, for weeks on end. Now it's usually just winter, but the precursor pain is a reminder: "Dude, you're just one chill too many, one late or forgotten dose, away from my claws. Beware."

In remission, one tries to live in the moment, with variable success. Precursor pain spoils that by changing the focus from the relief of now to the anticipation of what is to come.

I broke training and put one of my TN thoughts on Facebook a few days back. We had our first trace of snow, just enough to coat the grass, the deck, and the windscreen. It reminded me of how my daughter and I would tromp around the back yard on Nordic skis, on an inch of snow, whooping and hollering and greeting the start of ski season. That part of the father-daughter experience ended with adolescence. Then skiing, which had been part of my life since I was five or six, was killed off by The Beast. I remember the last two times I skied, once with my daughter, once solo. Both times I struggled through the pain, obstinately denying it.  That was before the diagnosis, when I didn't really know what I was up against.

I found myself, once again, trying to explain the TN worldview to a well-meaning innocent the other day. She had clipped an ad for Botox for migraine for me. I took it with courteous gratitude and without getting into the differences between actual Botulinum toxin and phenol injections, which I barely understand myself. I just explained that the therapy appeared to be off the table because it is potentially fatal and that makes neurosurgeons nervous. (The jury is still out on the "off the table" bit. We'll see if a second opinion is in the offing.)

Continuing in that flippant vein, I said that neurosurgeons don't understand that fatal doesn't necessarily mean bad to us, mentioning the grim statistics of suicide amongst people with intractable TN. Before I could go on, I got the usual "but but but that's terrible. Why would anyone think that?" So I pulled out the closer: "because the pain is so extraordinary that death is just a treatment option."
That's a great way to get some subjects changed.

So now I get to ponder my options between now and Friday, January 13. There shouldn't be any problem ginning up some pain for the neurosurgeon to study (insert sarcasm note here), because the precursor pain is coming along more, and more often, already. There have already been a couple of troubling warning shots on my right side. I'm trying to persuade myself that it's just psychosomatic: we'll see. If we get to the serious dickering next time there will be three opinions to reconcile, at least.

First, we have the neurosurgeon and his staff, who say that his  MVD procedure is "elegant."  In the language of science, elegance is defined as a minimum of constructs to reach a conclusion or outcome. The procedure itself, the insertion of tiny synthetic sponges to insulate the trigeminal nerve root from the impinging blood vessel, is perhaps elegant. The approach, as I understand it, is anything but. It is a craniotomy, almost the oldest surgical procedure known to humanity. MVD has at least one thing in common with the earliest known craniotomies. They were performed in the Paleolithic era, it is theorised, to let evil spirits out of the heads of the patients. This is a rather apt parallel. Asepsis and precision instruments have improved the success rate, but the neurosurgeon is still drilling a hole whose diameter is somewhere between that of a nickle and a quarter in the skull, driving out the evil...pardon me, performing precision brain surgery, and replacing the skull tissue with a metal lattice-work, then closing. I will perhaps accept "elegant" as an adjective if the approach can be performed with a little more finesse.

Then there's the recovery, Typically, it will start with one night in ICU and two nights on the wards, which at the hospital in question costs about $10,000: I know because it's my business to know, but we'll get to the money-ball later. After that, the patient is home as soon as the patient can ambulate. Oddly enough, as soon as one can ambulate one's arse out of the hospital, there are usually severe restrictions on mobility. You must usually divide your day into little chunks of walking, sitting or lying down, with bits of rehab exercise tossed in here and there. Your head is either totally shaved or partially shaved in some grotesque fashion that would get you the envy of a Goth queen: no hats, no wigs, no nothing. You can't drive, and may even have your licence taken away: for months. You can't work. But in many cases, you won't need to worry about gaining weight, because you may lose your appetite. All this assumes a normal recovery with a normal prognosis.

If MVD is elegant, why does the recovery sound so much like major brain surgery, which it is? Thus the next part of my standard of elegance is learning whether anything mitigates this grim outlook. And no, I don't care if I'll be able to receive radio signals with my head.

All this explains why I'd like to hear another neurosurgeon confirm that phenolic injections are unsafe at any speed. We haven't gone there yet, but that bears looking into. Nor have we heard from the parties who will pay for most or all of this, whose record of support for neuralgia surgery is dismal at best. As I said, medical reimbursement is my occupation, and I won't take one step toward an OR without knowing, in writing, who is paying for what. That's the money-ball game.

It's for damn sure that I can't count on anything I spent my life expecting to rely on in retirement. I keep recalling a form of demonstration from the sixties and seventies called the "Die-in." We're the same people, just older. I think we ought to start planning die-ins in which we actually die. Start small, outside of hospitals. Move to state houses, then Washington. Bring popcorn for the living.

Being really unique

Uniqueness isn't necessarily a good thing. Consider this tableau from an MGH exam room yesterday. On the right is my neurosurgeon. Centre is Yours Truly. On the left is a surgical resident. We are all looking--staring, really--at an MRI image of my brain. All of us are trying very hard to maintain clinical decorum, and not to say "what the FUCK?"

For those who haven't taken anatomy and physiology, I must explain that trigeminal nerves come in pairs, one set on the left and one on the right. This is why most people who get to entertain this disorder have it on one side or the other. Only a very unfortunate few have bilateral TN. Just as the experience of unilateral TN is beyond the imagination of most people, bilateral TN is beyond our ability to imagine.

Last Saturday's MRI was meant to determine whether my left side TN was indeed idiopathic, or whether it was the result of vascular compression of the primary trigeminal nerve. With the improvement of imaging and other diagnostic tools, the latter has been found to be the source of TN in the majority of cases. The neurologist was therefore confident that he would discover vascular compression of my left trigeminal nerve.

The MRI showed, instead, compression of my right trigeminal nerve. Exactly what this means is unclear, hence the WTF moment for surgeon, resident and patient. The patient is hopeful (desperately so) that what we have here is an instance of neurological gymnastics and the source of my left TN pain, however odd that might be, is the right vascular compression. The alternative is that bilateral TN is somewhere in my future, and that does not bear thinking about.

At any rate, the next step in the decision process is put off until January. The neurosurgeon initially wanted to see me in December, but I suggested January, because the odds that the Beast will be back in full cry are better then. So January it is. Umm, on Friday the 13th. Fortunately, I'm not superstitious, much.

Next steps

I began this dog and pony show around the time we were driving my kid's car across company to her clinical affiliation in California. Now it's a few years later, she's back here, and still in the brain business. My TN is sort of a hobby with her, and she noticed a posting where she works now about a new minimally invasive surgical treatment for TN. She spoke of it as "Botox." OK, logical, since migraine treatment with Botox now has a good deal of traction. As it turns out, Botox is just neurosurgical slang for phenol (or some other) injections of the trigeminal nerve, and the procedure has mechanical similarities to the Botox treatment for migraine. I understood that it wasn't perfect (what is with the Beast?) but could relieve dependency on a bagful of drugs, and didn't seem to come with the after-effects or lengthy recovery associated with other surgical treatment.

Eventually I ended up with the TN neurosurgeon, and went through my usual protocol with surgeons. They ask what I do. I say "medical coder and surgical auditor," and one foot comes out of the stirrup on their high horse. When this one asked how I had heard of his work, I said my kid's a doctoral fellow working with one of his colleagues, and both surgical feet came off the high horse: play the cards you have when gentling surgeons. If you can, show that you're in "the club." It's unfair, but, when they are patients, clinicians and allied health people are generally treated better and get more precise information than ordinary mortals.

At this facility, they have stopped the phenol injections because, to quote this surgeon, "we can't always tell where it will end up." One place it can end up is the heart, which then will stop for good. I would love to find a neurosurgeon who has TN. Then one wouldn't have to explain that that would also be a welcome treatment. One wouldn't have to explain that ending one's life is just another treatment option, so having it done for you is an improvement.

The Good News

My surgeon (cough) buddy has two favourite treatments. Today, with better imaging technology, it has become clear that vascular compression (an artery squeezing the trigeminal nerve root) is the cause of four TN cases out of five. With this in mind, microvascular decompression (or MVD: surgery to relieve the pressure on the nerve) has become much more sophisticated. If a new and better MRI indicates compression, he's ready to cut.

My first MRIs indicated that my TN is ideopathic: a condition without a clear cause. If I come away from the next MRI as ideopathic, then he is a fan of rhizotomy: a partial destruction of the trigeminal nerve root that effectively blocks the pain signals. I'm possibly a candidate for the first of these,  and definitely a candidate for the second. MVD has a 90 % success rate with a low rate of recurrence. Rhizotomy's numbers come under the next heading.

I'm picking this up after the latest MRI. As I've commented here in years past, no MRI is for the squeamishly claustrophobic, and a brain MRI is a notch or two up the scale. So far, my three MRIs have each had distinctive features. The first was like lying under a steel deck whilst someone was dumping 100 tons of scrap metal on it. The second was a decidedly hallucinogenic experience accompanied by sounds similar to post-modern music.

Props to MGH's North Shore Imaging unit. I've always met and chatted with the techs, but this time I got to meet and chat with the radiologist as well. I mentioned the silly advice I got before the first one, that I should bring along a CD of music that I liked. We all chuckled over that, and the tech said "sure. You can hold it."

This experience was well up the decibel scale, but this time, for sound, we had a blend of the heavy metal and the post-modern. My impression was that it was much more intense than either of the previous two. This may have been a hallucination, but I felt certain of being physically smacked around by the pulses at several points, as if my head was actually jolted from one side to the other.

I'll have to wait until Monday's E&M with the Neurosurgeon for the results. My medically naive wife thought I should get an autographed copy of the films. nah-uh. In the latest iteration of HIPAA, you have practically to qualify for a security clearance to walk around with your films. And, of course, they're not films at all, but digital images which go to the common Mass General database in real time.

The Bad News

One of the reasons that rhizotomy fell out of favour as a TN treatment is that patients, while they did get relief from the pleasures of the disorder, also lost most or all feeling in the treated side of the face. They also ran the risk of ending up looking like Tex Avery's Droopy.

MGM Cartoons

Understandably, many patients objected to this. In the modern history of treating TN, this problem has dogged patients and clinicians alike. Nothing can really be worse than the disease, but many treatments have left patients wondering what they let themselves in for.

Supposedly, we now have newer and friendlier facial rhizotomies, which don't leave one with sagging jowls. However, rhizotomies still are likely to leave numbness in their wake. Worse, one goes to the trouble and expense, only to have the Beast back in a few years, leaving the surgeon to do it all over again: the success rate is around 40 percent and there aren't warranties. All these things are the focus of my rhizotomy questions tomorrow.

MVDs are cranitomies: significant brain surgeries that carry numerous risks with them, no matter how well done. Even if everything goes flawlessly, I face a staggering recovery period:  no work, no driving, restrictions on practically everything (Did I mention no drinking?), stretching on for months. As I approach 70, I'm aware of how few months I have left to throw away.

I don't like it. One of the main ways, besides medication, that I currently attempt to contain The Beast is restrictions on what doctors euphemistically call "quality of life." I've had to give up winter sports, especially skiing. I can't eat anything more solid than stew. I can drink little to nothing. Hell, when my sickness is on, my trips outside consist of dashes from house to car to whatever building I must visit. MVD seems to trade one set of quality of life restrictions for another: a treatment that creates a dilemma is perhaps no treatment at all.

Tomorrow I see the neurosurgeon, and my PCP as soon after that as I can manage. Stay tuned.

Tomorrow has come and almost gone. I'm off the hook until January. More directly. That was a bundle of news for all concerned.

Dinner and a show

In honour of my wife's birthday yesterday, and the end of the four days a year when she can say she's younger than me, we went out to a pretty good Indian place in Salem. Toward the end of the evening, I suddenly became aware of her saying "are you all right?" I pulled my wits about me and said "Of course I am," although I was somewhat lost in admiring the very hot chutney. She replied that my eyes were rolling, that my face was pale and had tremors, and I looked like I was about to fall out of my chair. All this on the tandoori, the hot chutney, and a half glass of wine. As usual, the colour was the first to come back as the server came over to help, whereupon every eye in the room was upon me. Embarrassment is as much a part of this business as pain. My wife insisted on driving home and I didn't resist. When I got there the combination of signs and symptoms interested me enough to check them against the meds.

Sure enough: right out of the Gabapentin playbook.

I'm supposed to be dividing my monster doses into three equal ones with meals, which isn't how I'd been taking the lower dose for years. Force of habit has had me taking the last dose at bedtime. Just this weekend, I determined to get the timing of that third dose under control, so for three nights I had taken it before supper.

Hindsight suggests that wasn't a good idea, and that I'd do well to return to the old schedule.

It ain't over til it's over.

This thing does have one benefit

That benefit is living with a degree of distraction that makes the political comedy hard to distinguish from the occasional hallucination. No, I haven't gotten into the business of Botox. The past few days have been taken up with surviving a trip to the dentist (always a hazard) and making sure we're ready for the insulation guys next week.

Things are getting better. Alcoholic beverages are still a problem with the ridiculous doses of anticonvulsants, but I'm adapting otherwise. Eating is better (i.e., possible), archery is mostly possible, driving is no worse than usual. Still, it's true what my nurse boss says, explaining me. "Okay," just means the pain is manageable. Even with all these drugs, it's always there now. It's sort of like walking a wolf: the question becomes who is in charge.

News enough for now.

Wassup?

It says a lot about both pain tolerance and the effects of anti-convulsants that the modest zaps of the past eight days don't really count to me at all. Some have reached the level of distraction, but it's up in the air whether these zaps, or the effects of what are now monster doses of both carbamazapine and gabapentin, are more distracting. Things have thus improved. This is quite a nice day and I've been able to go outside a bit. Still need to be cautious about vigourous chewing and drinking more than a token bit of alcohol.

I haven't yet asked my PCP about the Botox. Due diligence suggests it's a plan. I'm expecting some argument because my summer experience remains modest. But my counter-argument will be based on quality of life, and the many things Botox would let me do in winter that are off the board now.

Stay tuned.

Keeping my sort-of promise.

Last Monday, my day to have platelets, I had not Tn pain worth mentioning. As usual, that means "no pain that I would consider worthy of notice." Others might not think so. The rest of the week has been less lucky, culminating with a 13-hour marathon that followed a brunch at which I was a little careless, and a social gathering that included a fair amount of walking--also careless.

One of my diversions in a time like that is thinking about what I might eat when this settles down. Right now, I think it might be peanuts or cashews. The other, as always, is keeping score. The average of the marathon was probably Mankoski 7, with a few 8-plus jabs thrown in for variety. Usually, Once I've drugged up I sleep through a lot of this, and know it's still on when I wake up in pain. This time there was no sleep until early in the evening. Yes, I increased my Clonazepam dose. So would you, in the same place. It brought four or five hours of sleep, and when I woke up, the pain was gone.

I have to explain that waking up to no pain, in situations like this, brings confusion and surprise before it brings pleasure. When one lives with TN for so long, even with my extended summer remissions, pain gets to be so normal that at first one doesn't quite  know what to do when it stops.

The price of obstinacy

On Saturday, determined not to let the Beast have all the shots, I drove to Manchester, NH for an SCA event. Since this one is indoors, I figured I had an even chance to seeing something. I lasted about three hours before Beastliness. I finished my last errand quickly, and beat it before the tic got out of hand, I hate the tic almost more than the pain, because one begins to look like a refugee from a horror film. This can alarm misinformed people, which can lead to restraint, and ambulances, and EDs, all of which are unnecessary.

As usual, once things set in in earnest, eating is a trigger. The exception is breakfast. I don't eat a big breakfast, which may be why. However, I'm otherwise living on soup, and scrabbling to dig up soft recipes that offer a little culinary challenge while having a mush-like consistency. Tonight was curried rice with (bought'n) Punjab eggplant. I've found a recipe for African peanut soup that I can prepare quickly, which is important when one can only count on a few healthy hours a day.

Here, without naming names, I must point out that any chronic illness brings in its train the well-intentioned but ill-informed friend or relative, who is sure to have something that will keep you healthy and happy and have nothing to do with the problem, The latest was "well, last year you weren't sick, and you went out a lot to shovel snow, so why don't you start taking nice outdoor walks."

Item: last year I was out a lot because I had to be out, and much of the time I was sick but our seven-foot drifts gave us other worries. I was not as sick as this year because TN plays with you.

That's the simple answer. The more complex one is that treatment of TN and other neuropathies calls for a delicate balance of meds in the blood and liver that will suppress the symptoms. Sometimes, the liver reserve falls, the blood reserve follows it, and shit happens.

The game is trying to regain the balance while avoiding as many pain stimuli as possible. This isn't easy with a progressive disorder, especially one that has stolen a march on you. Go for a walk? Sure. Why the hell not, when I can now get sick sitting at my desk in a warm office. Let's go back 200 years, treat like with like, and do the thing most likely to cause pain. How about a nice chewy three course dinner afterwards.

The best thing to do, if you know someone with TN or another neuropathy, is to be helpfully
sympathetic. Keep your sovereign remedies to yourself. Don't provide links to the latest bit of woo you picked up on Google. Those of us who have dealt with this for a long time (15 years next April, in my case) try to be partners with our clinicians in the treatment of the disorder. We read up peer-reviewed studies of the latest treatments, weigh the pros and cons, and try to enjoy the times when we have little or no pain. Amateur doctors don't help.

Disagreeable firsts

It hasn't taken long to lose track of the numbers, but on Wednesday I had two firsts with the Beast. For the first time I had an episode at work so severe that I had to leave the office. The other first was the reason for the severity. For the first time  Clonazepam had no effect at all on the symptoms. It is understatement to say this was disturbing: it led pretty quickly to panic. Level? Mankoski 9+, McGill over 10: that's to say concentration for more than a minute or so was impossible, I was dizzy and disoriented, and feeling some nausea. Being absurdly self-conscious, I apply what little self -control I have left in these situations to repressing an almost irresistible urge to moan. If I'm alone in bed at times like this, I don't mind so much

I have a new PCP, who hasn't seen the symptoms, so that was my first stop. One is extra careful driving even on a low dose of Clonazepam, but also I found my sense of time was completely fucked up. It's less than 15 minutes from my office to theirs, but it seemed like three hours. Fortunately, she would be available as soon as possible. Again, I'm not exactly sure how long that was. My face was beginning to tic in the waiting room, I remember that. I don't like frightening the villagers, so I mostly hid my face behind clenched fists during the wait.

The perky medical assistant who took my vitals had clearly never seen TN in full cry before. I think I took her aback when she routinely asked "how are you?" With what voice I could muster I said " I feel like hell," and went over the symptoms. One trouble with a full-on breakthrough is how hard it is to communicate more than the simplest thoughts. Kept it brief, impressed the MA with the gravity of the situation, and begged her to turn off the light in the examining room (the Google experts don't tell you how much light can hurt). Sitting in the dark did so much to relieve the worst: it has done so since Hippocrates,

My young physician was all one could ask for. It must say somewhere in my chart that I'm an "informed patient." As my voice came back I described what had been happening for the last two weeks. It's my personal and professional policy never to tell a physician anything; rather to inform them what I have experienced. That's how you get along with M.D.s, and it is a fine line. Mine picked up quickly on the background questions that have been growing in my mind these last two weeks. She proposed some changes in my meds: some small, some pretty substantial that went at first a bit beyond my comfort zone. We talked those through and in the end I agreed, and we agreed how how to ramp up the dosages. One should not go jumping up rapidly in doses of anti-convulsants, nor cut them down rapidly. Either can make one very miserable or even very dead.

That was two days ago. Yesterday was less rotten than the day before, having applied only the small changes. Today is the start of the larger changes. One is never exactly well when a TN breakthrough is on, but there are degrees of pain, and for us many of those are tolerable.

In this, and in my work life, I have to deal with the fundamental problem of pain management, which is that pain experiences are subjective. It does little good, for instance, to explain to people that the only pain equal to or greater than the upper levels of TN is inoperable brain cancer. Most people will be lucky enough to be unable to make the comparison. But I read a better analogy the other day, for the moderate levels anyway. It is like experiencing childbirth. With a broken leg.

On Wednesday, I blew past that level about an hour into the episode...or so I'd say. Let's hope the revised meds do the job.

Trigeminal Neuralgia 2016 7 & 8

Monday. a doubleheader again. The morning session blew by quickly and with great intensity, and contributed to kacking my blood platelet appointment. The evening session was equally intense, but I only missed out on things I wanted to do.

The resolution to keep taking notes on this is fading rapidly. This pain is a very private experience, and only people who have it can understand. On Sunday night, I pulled the plug just as "60 Minutes" was doing something or other on the "Make a Wish Foundation."

I'd like to make a wish. I'd like the TN to be over and stay over, but that's not going to happen.

Trigeminal Neuralgia 2016 5 & 6

I'm including number 5 just to keep the string going, because pain levels in the 4 to 5 range hardly count any more.

It was interesting because it was followed by two entirely pain-free days. What a cheat that experience can be! It's a treat like low gas prices; you think it will last, you hope it will last, but part of you realises that it won't.

It didn't. With my triggers, running a snow blower is a roll of the dice, even the Dead Bunny bomber hat and three layers of hoods. The warning shot was kind enough to wait until I was done and inside. Then I waited to get a grip on how bad this episode was going to be. When it became clear that this was going to generate sensations above average, I popped a Clonazepam and went to bed.

Blessed be Clonazepam. Before it kicked in (tablets take about 20 minutes to dissolve and enter the bloodstream) The zaps were Mankoski 7, some up to 8, or McGill 9. This is the start of the "Holy Shit" range, if your brain could spare the energy to get your mouth to speak. The drug did what it was supposed to do, bringing the pain down to an manageable level before it got out of control.

I don't know how it is for others, but without Clonazepam, my breakthroughs can spiral up to levels that are near unconsciousness. The scariest episode I had like this hit me when I was driving, some years back. I knew the road, and I knew as the Beast rampaged, that there was a place I could pull off not far away and ride it out. I just made it. One of my oaths with all this is no matter what happens to me, I don't want to harm anyone else before I regain control. I'll put up with a great deal of pain to prevent that.

Everyone who lives with this knows that it is rare, and consequently few clinicians know how to treat it or how, exactly, it manifests. I was just reading a well-meant but hilarious piece by a neurosurgeon on the fine distinctions between idiopathic and atypical TN. Atypical, he says, is likely to point to a physical cause. Then, he said that any pain ("zaps" to the cognoscenti) lasting longer than five minutes should be investigated for that cause.

Ayah well. In breakthroughs, my zaps last from one to five seconds. But they are spaced only a few seconds apart, and one's grey matter is reeling from the assault during the time between zaps, so much so that one could be forgiven for thinking the TN pain is constant for the 30 minutes to several hours of the episode. One neurosurgeon I was sent to had heard of this manifestation, and called it the trip hammer effect.

All this is much better than it used to be, before we got the regimen that helps. Then, the zaps flashed in every half-second or so, at increasing intensity. Just leave it at that and be grateful for small blessings.

Late news. Had another breakthrough of similar intensity in the evening. This was self-inflicted: I forgot to take my meds with supper (a danger of getting wrapped up in sports). All the same, I don't know why I'm cruising on the edge. Carbamazepine is lipid-soluble and I should be building up a reserve. Going without even one dose right now is like driving with the gas gauge warning light on.

Trigeminal Neuralgia 2016 3 & 4

We'll  call this a doubleheader, with no pun intended.

Number 3 was Monday night. It was slow gaining traction, then got lively, with some 7+ zaps thrown in for entertainment. This and the previous one had one thing in common: I'm pretty certain eating was the trigger in both cases. It backed down with only a little help from Clonazepam, but I did notice one thing. I had recovered enough to try some bedtime reading before the drug kicked in. That was no good. Granted, my choice of reading matter wasn't great. Histories written in the 19th century are heavy going at the best of times. Under the twin influences of Special K and TN, the words just clumped together and fell off the page. Times for some lighter reading.

Number 4 began at work. Because I don't like doing Clonazepam at work, this one dragged on for around three hours, subsiding once and coming back. It's a tossup whether to rate this as one breakthrough or two. Still going on.

Trigeminal Neuralgia- Breakthrough 2016-2

So, here we are again: regular Beast walks. I had not yet finished posting the account of number 1 when number 2 came calling. Neither as as nasty or as long as the opening round, but rather stubborn, taking two Clonazepam to tame. This was not so much classic as retro. The first experiences I had with TN featured pain in the stem, and I got a load of that, along with the temporal pain. It limits one's options lying down when one can't bear to lie down on the back of one's neck. The second Clonazepam finally put me down, lying on my right side, concentrating on keeping up that barrier between the hemispheres.

Maybe I'm doing this wrong. Maybe I should keep track of the days when nothing happens.

Trigeminal Neuralgia: Breakthough 2016-1

The opening gun of the new salvo began during that little experiment with curling, near the end, at about 1440. Classic (for me) onset and development at first. By the time I got home, took  my .5mg clonazepam and got into my dark room, things began to get different.

The sensations (about five seconds apart) were about Mankoski 7 and McGill 8 (see above) However, instead of diffusing over the whole nerve, they descended the main stem to the posterior neck, and ascended to the ends of the peripheral branches (below).

Previously, clonazepam and a darkened room have reduced the pain well below my tolerance level and usually put me to sleep briefly. Neither happened. After  about an hour and a half, the pain was in the same location and barely tolerable.

I got up awkwardly. I have a nightstand made of those coated wire segments with press-on attachments, and I managed to bang into it and knock it into several segments. Normally, assembling these things is a kindergarten-level exercise. I stood there stupidly and couldn't figure out where to start. Noted since inability to perform basic tasks goes with both nastier TN breakthroughs and clonazepam. With that experience behind me I went to the kitchen to make supper. Decided to skip dicing fresh tomatoes and opened a can of diced tomatoes instead.

The basic pain level gradually transitioned to pain hangover, as the clonazepam wore off, then began to come back. I took a second 0.5 mg, and while I could focus enough, fixed the nightstand. I fell in bed, and again there was no sleep, and kept having level 7/8 zaps every few seconds, now on my classic pattern. This time, they were punctuated by extreme zaps, brief but disorienting, incredibly painful, and capable of eliciting involuntary moans. If I had to put a number on the big ones, it would be 9+. This went on for almost two hours.  Eventually the zaps, big and small, subsided below tolerance level. Since I was still awake, I thought I could handle a little light, and I read a little as things fell under control. I finally slept.

Total duration of the episode was 7+ hours, and it was the worst in several years both in maximum intensity and duration. The current course is troubling, as it differs in several ways from my past experience. One lives on hope; the hope in this case that this was an isolated breakthrough.

I post all this chiefly for the community of people who share this disorder, and interested clinicians. One can tell the latter apart from the rank and file, because they're the ones who flinch when you tell them what you have. Most laypeople can't comprehend the experience. Some few are convinced we are all faking. They are too stupid to bother with.

Ah, so that's it

One of the things one loses when entertaining Trigeminal Neuralgia is an appreciation of the horror most ordinary people, and most clinicians, feel about suicide. I've been looking for a good summary of those feelings for quite a while, and now I've found this.

As of this writing, the blog is marred by several paragraphs at the end on chronic pain. I say "marred," because the lack of transition suggests that the material wasn't meant to go with the copy on suicide. Yet I appreciate the irony, because there is an association between suicide and some forms of chronic pain, a connection that may have eluded the author.

My cushion of Carbamazepine and Gabapentin allows me objectivity. It also allows me to write, because when things are bad it hurts to concentrate...it hurts to talk; to eat, or brush one's teeth; to open one's eyes. Yet I'm fortunate. I was born into a time when my medication exists, and fortunate that much of the time it works well enough to allow me to function fairly well.

Medication doesn't help everyone. I found the following recently.

While no one quoted here actually says "when I finish this, I'm going to stick my head in the gas oven," something else is clear. There are degrees of bravery, and degrees of bravado. When you live in a world in which suicide is just a treatment option, those degrees matter a lot.

Be patient with us: we see things through a different prism.

Things Beastly

The Beast is of course still with me. Trigeminal Neuralgia can and does go away for a while, but it is never really cured. It's those random remissions that make TN such a magnet for quacks. They can pitch their woo until the poor sucker has a remission, disappear, and be nowhere in sight when it comes back.

It's frustrating to those who have it, and even more perhaps to their loved ones and healthcare providers, that triggers and the course of the disorder can change over time. Time was that a big part of my containment plan was simply being a near shut-in for five months a year. It's no longer enough.
It also used to be that the year's first episode of breakthough pain brought on a couple of months of horrors once or twice a day. So far that hasn't been happening, and we should be grateful for what blessings we can get.

In place of that one gets something more like the usual picture of TN. This is what I've started to call sucker-punches that can hit at any time of day, several times a day, year-round. Again, so far the pain level hasn't been anything that my drugged-up nervous system, with its ridiculously elevated pain threshold*, can't handle. What this would be  like without enough carbamazepine and gabapentin to flatten a normal person doesn't bear thinking about. It's a rough ride.

We shall see what the rest of the winter brings.

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*Last summer I had an ancient ladder fall apart under me. After falling several feet and managing to land upright, I used a few words from my Navy vocabulary and moved on to another ladder. I limped for a fortnight, and the bruises from this are just now fading away.  I reflect that someone not floating on a cushion of anti-convulsants would probably have ended up in the Emergency Department. This happens all the time: collateral damage of TN treatment.