“Somewhere, something incredible is waiting to be known.”—Sharon Begley.
Burning Mouth to the Rescue
At this point, my only play on trying to solve the burning throat was to pretend it was the same as burning mouth and apply therapies used for that to the burning throat.
Now burning mouth is a very different condition; it is a condition of a small subset of postmenopausal women, and it appears to involve some deranged GABA processing in the brain.
With the psychiatrist I had been seeing earlier, we tried lorazepam with the expected “no effect” detected. I also tried a few SSRIs also with “no effect” detected result. (Duloxetine may be a partial exception in that it did appear to affect the pains around the PEG site, but it had no other beneficial effects.)
Anyway, I read most of the world literature on burning mouth and got a list of new medications to try. Two drugs were up, mirtazapine and olanzapine. By nearly a toss of a coin, I decided olazapine would be up first.
For a few days, I took 2.5 mg. The intended dose was 5 mg, but I always start a med at half dose to get my physiology used to the new substance.
Then on a Sunday night, I took the 5 mg. The next morning, the first thing I noticed was that lights were bright, photophobia. I decided to press forward and keep on the 5mg. Normally, the burning throat is like a 4 or 5, but by Friday evening, it was a 3. Now it can get low as 3, so this isn’t earth shattering, but on Saturday, it was a 2 and that never happened before, so it was clear that this was not going to be a case of “no effect detected”. Sunday, it was a 1, and by Monday, the burning throat had been summarily cured outright.
Now I literally mean cured, not treated. That is, if I stopped the olanzapine, this pain would not come back. It was as if the olanzapine was walking the brain and saw this burning throat thing plugged in and just unplugged it.
But there’s more. Way more. I was so focused on the burning throat that I didn’t notice the burning pain around the PEG site had also vanished.
There’s even more. Both the spray painting and cheesegrater are also gone.
This is completely surreal. A whole slew of symptoms were either treated or cured outright by the olanzapine in a matter of days, and some of them can’t come back even if I stop taking it. Let’s review all my symptoms and see how olanzapine impacted them:
Hot ears: treated but not necessarily cured.
Vasomotor rhinitis: unaffected.
Burning throat: permanently cured.
LP Reflux: this symptom mostly cleared on its own; olanzapine doesn’t seem to affect it.
Aerophagia: unaffected.
Upper, upper gut symptoms (esophageal motor dysfunction): not affected, but mostly resolved on their own.
Upper gut symptoms (dry heaves, nausea, bloating): these symptoms mostly cleared up spontaneously after the PEG was placed; olanzapine doesn’t seem to impact them. (I still have to vent after every meal and before lying down.)
PEG pulling: completely treated but not cured.
Pains around the PEG site: completely treated but not cured.
Abdominal Heart Attacks: indeterminate.
Spray Painting (deranged peristalsis): completely treated but definitely not cured.
Cheesegrater: completely treated but definitely not cured.
Zizzies: indeterminate.
Crohn’s: unaffected.
The one major symptom that is bound to come back after stopping the olanzapine are the lower gut symptoms, the spray painting and particularly the cheesegrater. However, even a 1.25 mg dose sometimes keeps it at bay.
How does olazapine perform its magic? Looking over Stahl’s Psychopharmacology nothing jumps out. To make matters more puzzling, olanzapine’s sister drugs do not exhibit the same effects. First, I tried quetiapine and, boy, did that have an untoward effect. I don’t know what it feels like to get hit in the head with a heavy object, but I want to say that’s what it felt like on one dose of quetiapine. I had to stop it immediately. I call this side effect, the 2 x 4 effect, named after wood studs in America that are 2 inches by 4 inches. Now check this out: what happens if I stop olanzapine too quickly? Well, ironically it feels like getting hit in the head with a heavy object. Restarting the olanzapine quickly extinguished this effect. So in this regard, olanzapine and quetapine are really complete opposites. It would be very interesting to know if others experienced this side effect and what’s it really doing to the brain. It’s one symptom that I don’t expect to be novel since quetiapine is a major drug.
Next up, risperdone. This one immediately stirred up my gut, producing a symptom similar to but not quite the same as spray painting! So I had to stop this one also. Once again, complete opposite of olanzapine. It’s quite clear at this point, we have a limited and misinformed understanding of how these drugs work internally. I suspect that may because we are so caught up in their receptor activities that we don’t consider what direct effects they may have on the insides of cells.
Olanzapine has side effects. It seems to interfere with the brain functions of motivation, focus, and concentration. A possible solution might be to try a drug that treats ADHD, namely, methylpenidate.
Interestingly, methylpenidate produced some interesting side effects. It appeared to resurrect the symptom of the zizzies. (pramipexole, which is used to treat restless leg also has an effect of opposite of its expected effect for it too causes the zizzies). Also, methylpenidate created the strange symptom of a stomach fisherman. If you remember all the way to the beginning, my infection had caused a symptom I called the liver fisherman where it felt as if a little man were sitting on the diaphragm pulling up on my liver. Here it was the same, but on the left side, pulling up on the stomach. So then methylpenidate appears to produce the very symptoms we’re trying to treat. It also suggests a possible pathway upon which the disease produces its strange symptoms, specifically that it is one of dopamine processing in parts of the brain and perhaps the gut, too.
Ironically, my lower gut symptoms started on 5/22/96 and olanzapine was introduced in November of that year. Imagine how my different my life would have been had at some point earlier, I knew that an essential cure was sitting all that time at my local pharmacy.