Good stuff and debates

Maybe we'll deal with Zohydro in a bit. But remember, the chronic pain I address most is my own. It happens that you might as well treat TN with M&Ms as with opiates, and you'd enjoy yourself more. So we're coming back first to anti-convulsants.

The default medication for trigeminal neuralgia is Tegretol (R), aka carbamazepine: for good reason. It works. Maybe a third of patients who present with TN actually achieve an indefinite remission. It has some benefits for most of the others.

Like most wonder drugs, it has down sides. The first is that it has a discouragingly long learning curve, so to speak. That is, it takes a lot of time to develop tolerance and find the right dose. The maximum dose most often cited is 1200 mg daily, although some clinicians take it to 1600. Most physicians would like their patients on less than the maximum because of the second down side: it can cause permanent liver damage. To find the sweet spot,  the dose that works but causes the fewest side effects, the patient must willingly reduce the dose, knowing that the outcome will be breakthrough pain, the increase it until you find the dose that contains the pain. That is not a fun exercise.

I've been on a maintenance dose of 700mg for years, increasing to 900 during breakthrough periods. As an "involved patient," I have licence from my PCP to experiment when things don't work. During the latest breakthrough, neither the 900mg nor the crisis dose of 1mg of clonazepam got the job done. However, 1000mg will, along with the clonazepam. I also have taken a maintenance dose of 1500mg of gabapentin daily for some years. My PCP wanted it to be 1800mg, but at first I found that gave me the trots, so we cut it back. I guess I've been on it long enough, because I've found that I can tolerate the 1800mg dose now.

Experimentation means that I don't have to run to potentially addictive doses of clonazepam, but can put the burden back on the safer anticonvulsants. It also shows that the maintenance doses likely need to increase by these relatively small increments permanently: at least until that doesn't work any more.

The debate part of the title lies ahead. There's a clear connection (at least to me) between the worst breakthroughs and dental work. To the clinical people I work with, the mechanism is obvious. Dental work = severe stimulation of the trigeminal branches innervating the jaws=breakthrough. My dentist's hygenist did her best, knowing the problem, but it still happened.

There is medical debate about whether major dental work can initiate TN, so here's where the involve patient may have to administer a dope slap to a neurologist. We're not talking about initiating TN. It's been there for 13 years, and this year it's been hanging around at a barely tolerable level since October. We're talking about the likelihood that messing around the teeth has caused the current outbreaks, which are, objectively, intolerable until the various jolts of medication take effect. In treatment of any chronic pain, it's important for the patient to be patient, to make sure that you and the physician are not talking past each other. Physicians are busy people and often accept the easiest explanation. I doubt I'll have trouble with my PCP, who has been on this case for a long time, but I'll have to be on my A game if a new neurologist comes on board.

Ah, tis an adventure!

Ringing the chimes

The following is the description of Mankoski pain scale levels 8 and 9:

8 - Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.

9 - Unable to speak. Crying out or moaning uncontrollably - near delirium.

I was  en route  to a modest libation in Boston when the Beast came to call.  It started about halfway to Wonderland station,  and I was stupidly deluding myself that it wouldn't get worse. It did. I pulled over, sent my regrets to my fellow quaffers and headed home. By that time I was blowing through level 8 and heading for 9, with about 25 minutes to go to get home.

The trouble with this, aside from pain that speaks for itself, is the agreement I made with myself several years ago. As I've said here before, when you have TN, none of the horrible labels people put on suicide really matter. It's just a treatment option. But my agreement is never, if possible, to put myself in a position where I might take someone else with me. It is a very short step from level 9 to level 10, which is unconsciousness. While most of my functioning right-brain consciousness was bearing down on just getting home, a small part was reproving myself for breaking the agreement. I could have-should have-turned around sooner. Too late for that, brain said: just keep enough concentration going to get home safely.

The wise head might say, "just stop and get help." I refer you to the description above: at 9, one can't talk, only moan involuntarily from a face contorted in the famous tic. From experience I can tell you that scares the crap out of laypeople. It's likely to get you a trip to the drunk tank, not the ER, from the cops. I should probably get a bracelet.

The self-reproach was enough of a distraction to get me nearly home, where the delirium almost caused me to miss my street. Five hours later I could take soup, lemonade and a heavy dose of anti-convulsants. Now, by the next morning, I can eat a little and write this.

Lesson learned. The current breakthrough, which seems to be courtesy of the dentist, is the worst I've had in several years. That means no non-essential driving during the six to eight weeks it will take to get this under control. That sucks, because I'm already fed up with semi-shut-in life. TN's remissions encourage false optimisim, and that makes us feel like this sort of thing won't happen again: but it always does.

 

Ungentle dental

Not going so far as to retire the Zombie Bunny hat, but air changes are taking second place to dental triggers in my TN tale. This is a classic trigger and a grim one. Before medicine discovered the value of anticonvulsants in controlling trigeminal neuralgia, people with this problem commonly starved to death. That gives the uninitiated an idea of the kind of pain we're dealing with: untreated, one would rather starve than take on the pain.

Just now, I wish I could get that reaction going, because I have an over-abundance of reserve calories to work through.

This isn't entirely new to me. It has shown up several times in the aftermath of breakthroughs started by temperature. This year, for the second time, it has started following a trip to the dentist. I've always found the "electric shock" analogy a bit inaccurate when describing triggers in the nerve's temporal branch.* It is very accurate when discussing TN in the maxillary and mandibular branches.*

The other day, during my usual mental retreat in an episode, another unwelcome analogy occurred to me. I recalled seeing some sword and sandal epic as a kid in which the unhappy inmates of a dungeon were tortured by having hot lead dripped onto them. This came to mind because something very similar happens along the part of the mandibular branch that descends from the Gasserian ganglion*: drips of red-hot pain every few seconds. This sensation is new to me and obviously very disagreeable. It's enough to distract one from the trick of retreating into the unaffected hemisphere for relief.

Dental triggers carry with them the possibility of year-round entertainment by the the Beast.  Oh joy.

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*This stuff is for people up on their medical terminology. If you aren't, google it.

Cures worse than the disease? Depends

The AARP is always anxious to look out for its members. The other day they posted the linked information about drugs that can cause memory loss. No surprise (I read this stuff too, and for a living), the Big Two for TN (carbamazepine and gabapentin) are right there. So is clonazepam (Klonopin). AARP lists this with its antianxiety meds, but it is prescribed also for its potent anticonvulsant properties.

Nice advice from AARP, but beware: the article is loaded with weasel words: "many patients" is prominent in the discussion of TN meds. I also take a statin and a beta-blocker, without which I wouldn't be around to write this.  Considering that I ring the chimes for five of these medications, it's a wonder I can remember my name.

Now, what was I saying?