December of 2012, I experienced trigeminal neuralgia–most likely related to MS. I distinctly remember that it is not what I told Santa I wanted for Christmas, but he was a shmuck that year, and that’s what I received. It started off cycling (about 20 minutes with pain, 20 minutes no pain), and I thought I could handle it if it continued to do that. It did not enter my mind how exactly I thought I was going to live as I was just trying to cope. It then stopped cycling. The trigeminal nerve has three main branches: opthalmic, mandibular, maxillary. Both the mandibular and maxillary branch were involved; it felt like I was having root canals on all the teeth on the right side of my face, both lower and upper jaws, without the benefit of a numbing agent.
I thought I knew what pain was; but I must have been delusional. I’ve had migraines that lay me out for 9 days. They were nothing compared to this all-consuming pain. When they describe it as among the most painful conditions known to mankind, they do not mince words. I was ready to kill myself. Seriously.
I called the on-call neurologist. He asked for blood work before he prescribed anything so we found ourselves at the hospital on Christmas Eve—me contorting in pain. The prescription I was given was for Gabapentin , and let me tell you, after reading the sheet of warnings, I didn’t want anything to do with it let alone consume it. My partner asked how long I was going to writhe around before taking it. I took a 300mg capsule. It stopped the pain, and I saw space portals in our backyard. I was wide awake but hallucinating. This was fine since I wasn’t alone, but it would have been terrifying otherwise.
I was able to see my neurologist several days later (it was Christmas, after all), and I only had to take one more 300mg capsule although the Rx was for two per day. I was figuring space portals meant my dose was quite high enough, so I deferred additional pills until the pain returned. My neurologist promptly labelled me a light-weight and switched me to Carbamazepine (Tegretol). We ended up lowering the dose so much that I was bisecting a children’s chewable tab. My partner and I quickly named them BAM-BAMs since no two pharmacies could manage to tell us how to phonetically pronounce it the same way. We preferred the unlikely, but amusing, car-BAM-aze-pine. Just try saying that while keeping a straight face.
I read the handout for that and was immediately concerned about the RARE rashes they mentioned. My body tends to excel at the RARE and UNLIKELY side effects. I tried to forget I ever read that. When I started getting a slight itch on my scalp, I was hoping for dandruff. No such luck. I’ve been known to get eczema when stressed. If I ever deserved to be stressed, it would be now. I had my partner start taking pictures. It didn’t match anything I was seeing in the literature so I remained unworried—for the most part.
On March 12, 2012, we awoke to unexpected snow. This typically isn’t a problem. I ate my BAM-BAM, a slice of apple (I was still eating fruit at this point), started drinking my cup of coffee, began feeling VERY flushed and hot, and the snow became a problem. I went to the bathroom to check my reflection and calmly told my partner, “We need to get to the hospital RIGHT NOW.” I was having a full-blown allergic reaction. I didn’t have trouble breathing, yet, but I knew it could come at any point. I was bright red in a full-face flush with hives on my chest. I went to my purse get an epi-pen and my albuterol inhaler. We got out to the car and to the main thoroughfare only to discover the unexpected snow meant travel was impossible. Traffic was backed up, in all directions, to where we sat at a traffic light. Fortunately we’re only a short distance from a BIG Fire Station, and I pointed my partner in that direction. Paramedics.
The Fire Station staff was amazing. They got an IV into me immediately to administer Benadryl, monitored my breathing to insure my airway was not shutting down, and called an ambulance for us. We arrived at the hospital where the ER MD was someone we’d dealt with several times before. Never a dull moment in OUR household! He administered solu-medrol by IV, gave me some oral prednisone for the next few days, and then we all tried to figure out what set me off. I’d been taking BAM-BAMs for 2.5 months, so nobody ever even considered that. The only other thing I had consumed was the apple slice. We all concurred that it must have been something on the apple. I AM allergic to a lot of different food items; why not apples now? I did show him the scalp rash and asked if it could be the carbamazepine. He said, “No.” The MD made me promise to never hesitate about using an epi-pen again. Yeah, yeah, I know. Allergic reactions can ramp up faster than you can control them, and once past a certain point, you’re screwed (so to speak).
OK. Fine. Now it really sucks I can’t have apples anymore, but I can cope. There’s lots of foods I can’t eat anymore; what’s one more thing? On we went with our lives. Insert scary music here.
I sent pics of my rash, which at this point was keeping me awake and driving me nuts, to both my functional med MD and my neurologist several days before our trip. I didn’t hear anything so off we went… We check email when we are away, so I figured I’d hear from them if it were anything important. I’m constantly amazed how we continue to think that email communication is ALWAYS immediate; it just simply doesn’t ALWAYS work in that fashion. Instead of hours sometimes it takes days! You can be sent an email, but it never fails that it is the one you REALLY need to read that is delayed for some silly server reason or some such. So it was in this case…
I always have an epi-pen with me, but I brought six with us on vacation. I remember staring at them and thinking odd things about my mental state, but figured it was harming no one. What the hell.
On March 24 we left for Japan. On March 28 I had another allergic reaction—after eating my evening BAM-BAM. Obviously, we now knew that the REAL culprit was the carbamazepine and NOT apples. This reaction wasn’t as bad as the one in March, but I still needed to get to an ER. We went to Tokyo University Hospital where we met Dr. Gunshin. He speaks perfect English which was very nice since our Japanese is limited to VERY SIMPLE phrases and words. He and two of his students examined me. I was not in danger of expiring, but I was given a large dose of prednisone for the evening and more for the following morning. I had been out in the sun that day when we went out to Odaiba to see the big Gundam, so he thought it was more a sun reaction. This is common in people who are taking Carbamazepine.
The next morning we hopped onto a shinkansen (bullet train) to head to our next destination, Kobe. I had the paperwork from Dr. Gunshin and the ER visit tucked into my purse. I took my morning BAM-BAM with no ill effect; this was understandable given I also took another whopping dose of prednisone. However, when I took the PM dose, it elicited a VERY different response. I knew we had to get to a hospital RIGHT NOW, yet again. The hotel got us into a cab, and we were on our way. Problem: my breathing was becoming shallow. I asked the driver how long to the hospital. He depressed the accelerator as he replied 5 minutes. I had an epi-pen out, but the cab was now careening about, us bouncing against each other in the backseat, and we couldn’t conceive of poking me given the wrong object may receive the injection accidentally.
We arrived at the hospital ER, but nobody spoke English which isn’t surprising since we’re in Japan—although we were specifically told to go here because someone who DID speak English was supposed to be present to help us. Alas, what do you do. I was dying. I thought of the promise I made the ER MD at home: don’t hesitate. My breath had become very shallow, and I could no longer feel my hands or arms; my partner was going to have to give me an injection with the epi-pen. I showed him where to administer the injection, and in front of an ER full of people enthralled with two gaijin in their midst, he stabbed me in the thigh, through my clothes with the epi-pen. I could breathe. I’m not going to die in Japan. That was my exact thought.
The staff didn’t even notice. One of the people in the waiting area of the ER led us over to a nurse’s station where I, unceremoniously, dropped the used epi onto her desk. This finally resulted in some scurrying about. They were not pleased that I had used an epi in their ER waiting room; I was in no mood for BS given I was high on a whopping dose of epinephrine. They, all five MDs around my bed, spoke little English. I spoke little Japanese as stated earlier. This was one rough conversation. FINALLY I recalled I had Dr. Gunshin’s paperwork in my purse. Holding it in my hand, I repeatedly pointed at it, shoved it at them, and pantomimed phoning. They went away with the paperwork and came back with different attitudes.
These very young MDs were very capable. The ER was just an open ward so I watched them administering to a traumatic brain injury and other patients. They just didn’t know what to make of me until they spoke with Dr. Gunshin in Tokyo. I also was able to get the neurologist, the oldest of the group, to confirm the rash I had on my scalp, shoulders, and neck was caused by carbamazepine. This was progress.
Well, obviously, I couldn’t take BAM-BAMs anymore. Now what to do about trigeminal neuralgia? They decided on Lyrica. I asked what dose would they recommend while trying to tell them that I react very strongly to medication. This fell on deaf ears as they talked among themselves and consulted their PDAs. They insisted that the lowest dose was 75mg. Great, we’ll deal with that tomorrow I thought. Someone would be by bright and early, 5am, with a dose. Keep in mind we had no internet access and no way to dial internationally. I would’ve, otherwise, been on the phone with my MDs stateside; there’s a 15 hour time difference. I had no info on which to compare Lyrica and other meds, couldn’t read the pharmacokinetics, probable mode of action, or even see to which drug class it belonged. I could’ve also seen that it was a different name for the drug Pregabalin which I know. I never take meds without researching them, but there’s always a first time, right?
Obviously, we had to stay the night in ICU. I couldn’t leave and risk having the reaction ramp up again. We both slept in the hospital bed. OK, my partner slept, and I listened to all of the familiar noises. It reminded me of being a kid. The beeping of the monitors, the man with the head injury moaning, a nurse singing to him to calm him, and coughing. Lots of coughing. I knew that I’d be lucky to get out of here without catching whatever virus everybody had. We’d had masks on the entire time, the curtains to our little ICU corner pulled, and I stole a bottle of hand wash from the nurse’s station on my way back from the restroom earlier in the evening.
They didn’t show up with the Lyrica at 5am. When they did they wanted me to take 75mg. There were three capsules. I took one and my partner quickly pocketed the other two. I was supposed to be released by 6am, but it took me threatening to pull my line out to finally get the MD to appear. The nurse and I shared few words but she understood when I started untaping the line and asking for a 4×4 (aka 4×4 gauze pad). They gave me more Lyrica for the trip home to the States, reminded me that Dr. Gunshin was awaiting a phone call, and let me loose over 4 hours past when they had originally told me I could leave. This had been complicated by the fact it was the weekend, their accounting office was not open, so we eventually walked out without paying and a promise to “be in touch.” It was an amazingly surreal experience.
We grabbed a taxi back to the Kobe Crowne Plaza just in time to catch the breakfast brunch. I had not eaten dinner the evening before, and it was now approaching 18 hours since I’d consumed anything. We sat in the private lounge on the top floor of the hotel looking at the best view in Kobe in somewhat of a stupor. They have magnificent coffee machines there which also exude some of the finest cocoa. I told my partner to please keep the cocoa coming while I ate sausage, bacon, salad, and rice for breakfast. No, I was not supposed to be drinking cocoa with its plethora of sugar and dairy, but I had almost died the evening before. I can’t print what I was thinking at that time, and how much I simply DID NOT care. I understand that one of the worst things to do at that point was to consume things I know I’m allergic to (dairy) or are bad for me (sugar), with my gut undoubtedly compromised by the steroids, but I simply didn’t care. Near-death experiences will do that to you.
I recall having a brief discussion about the large amount of paperwork that must be involved with the repatriation of bodies. My partner said that he would have called for backup. Things just had to be amusing at this point.
I checked email. There was a response to my rash photos from my neurologist in the US: stop taking the carbamazepine and possibly go to a hospital. Done and done. She’s going to love this story, I thought. 🙂
There was also a response from my functional med MD which I will insert here but address in a later post:
- I just happened to come across today…. Carbamazepine in a folate antagonist. We know that you have issues with methylation based on testing that you are positive for one copy of abnormal C677T gene for MTHFR. For that reason you will have more trouble methylating and converting to active folate (about 60% of activity of a normal person). When patients are undermethylating, they will produce more histamine = rash, anaphylaxis, etc… This means that the carbamazepine could potentially be a key in your increase in histamine reactions.
I read this and laughed. Finally I was getting at the reasons I had been having problems all of my life.
Dr. Gunshin works the evening ER shift, so we had plenty of time to kill before I could speak with him. We had to have all of our travel plans changed, so we started on that. We had planned to go to Matsue on the western side of the main island which is very remote; that clearly was not happening now. I needed to be back in Tokyo with Dr. Gunshin—not somewhere remote.
By the time we went downtown Kobe to kill more time—we wouldn’t leave to go back to Tokyo until the next morning—my face and throat were strangely numb. I sucked on cough drops to keep myself aware of my ability to swallow (or not) and kept quiet. I knew I couldn’t take more Lyrica and also realized that had I taken all 75mg, we’d be going BACK to the hospital at this point. What a charming thought. That 25mg capsule was the only Lyrica I took. I haven’t taken anything for trigeminal neuralgia since that time. The pain was inexplicably gone.
When I spoke to Dr. Gunshin that evening, he apologized for what we had experienced—as if it were somehow his fault. He informed us in no-uncertain-terms that we could not go back home immediately—not that we wanted to—because I needed to be stable before getting on a plane. I was to come back to Tokyo immediately where he could monitor me. When was I coming back, and when could he see me? I will never complain about an extra week in Tokyo.
I was back in Tokyo the next day and saw Dr. Gunshin shortly after. We had a lovely reunion. He gave me a small dose of Gabapentin to take with me on the plane in case the neuralgia returned on our way home. I knew I wouldn’t take it. Not that I didn’t trust him; both he and the pharmacist had a pow-wow and decided this was the safest thing for me to take should I absolutely require it. I was just scared to death to take anything at this point–let alone while on an airplane over the Pacific Ocean.
I saw my neurologist when I returned. She told me I could no longer take any of the seizure meds for trigeminal neuralgia—they were too closely related in their pharmacology. I had already come to the same conclusion when I was able to do my own research. We’re all thrilled the trigeminal neuralgia pain went away, but nobody is more thrilled than I am.
Believe it or not, this is the short version of this story. It glosses over many things such as the extended wait in the hospital for the initial Gabapentin Rx because the on-call MD took his bloody time walking from his office to the hospital on Christmas Eve to personally tell the lab which test he wanted run (turns out it was nothing out of the ordinary that couldn’t have been relayed over the phone); the bizarre late-night stroll of Kobe hospital my partner and I took with me in a wheelchair, hanging onto my IV stand, looking for any kind of phone or internet access; the lovely people working at the Kobe hospital convenience store which had nothing I could eat; the infuriating stalling techniques the nurse in Kobe used which resulted in my threatening to remove my own line; how glorious the sunlight felt on my face when we came out of the hospital the next day; and how absolutely beautiful the city of Kobe seemed to me.
PS The seizure meds like Gabapentin and Carbamazepine are the first-line choice for trigeminal neuralgia pain. Next up are opiates, but it is well-known that opiates don’t touch this sort of pain. Opiates just drug you out so much that you don’t care and basically cut you off from life. I don’t plan on doing that. Marijuana has been shown to be useful in combating this type of pain. Some people say guided imagery is also useful. Why do you think I listen to Belleruth Naperstek every day? My trigeminal neuralgia pain is a powerful stress indicator for me. I do everything I can to keep my stress under control.