March 25, 2019

Diagnosis journey

Diagnosis journey

My journey from first symptom to diagnosis is fairly typical, although on the lucky side of that - it was relatively short, and I didn't have any teeth pulled. Thanks to the wonder of online calendars, etc, I've gone back and recreated the timeline. This is a long post, bear with me:

Day 1: I first experienced pain while eating a sandwich, a sudden sharp pain in the back of the upper left side of my mouth. I continued to have pain when eating, etc, so assumed I had broken a tooth or a filling.

Day 6: Off to the dentist, who did x-rays and assured me that my teeth were fine. He thought the pain might be caused by swelling in my sinuses caused by seasonal allergies (note that I live in Oregon - so much blooms here in the Spring that they should just put allergy meds in the water). I was thrilled that I didn’t have a broken tooth or filling… 🙄 He said that it would either get better or worse, and if it got worse, to come back.

The day after the dentist appointment, our sweet kitty passed away after battling a kidney infection for several months. A week later we found out that one of our dogs had bone cancer (we lost her about a month later).

Addressing the pain became a low priority - it was no longer confined to my teeth, but ibuprofen seemed to control it, so I just didn't care. In hindsight, the ibuprofen wasn't helping at all: I would take it right after I ate, so that it didn't hurt my stomach. Then the pain would go away about 30-60 minutes later - which it would have done anyway, because that's how long my typical swarm of attacks last, and the attacks are triggered by eating.

Day 27: I had a regular dentist appointment scheduled, so I went in, but told them not to do anything because I was still in pain. The dentist still found nothing wrong and offered to send x-rays to my doctor's office.

Day 35: Appointment with a PA at my doctor's office, who told me I had a bad sinus infection and wanted to know why I didn't come in sooner. I just shrugged at him, didn't want to start crying in his office about what was going on with our pets. He prescribed antibiotics. I was surprised by the diagnosis, since I didn't have any other symptoms of sinus problems, just the pain.

Day 42: Antibiotics done; pain was diminished but still there, so I called the doctor's office and was given 3 more days of antibiotics.

Day 45: Finished antibiotics, pain is mostly gone, so I just assumed my sinuses needed to heal or something.

Then I had two months without pain, a remission, which is typical for TN, especially in the beginning. I still had a strange feeling in that side of my face, but I just wrote it off to allergies.

Around that same time, work got really, really busy since I was covering another full-time job in addition to my own. I worked seven days a week and still had too much to do. I spent a lot of my time holding meetings where I had to speak often and loudly.

Day 106: Episode of bad pain in the evening marks the return of pain. I remember being distraught - it kept getting worse, pain meds weren't doing anything. But I was so busy and wrapped up in work that I didn't make it into the doctor until almost two weeks later.

Day 118: Had an appointment with my regular doctor, who said she didn't think it was actually a sinus infection but maybe was an inflamed nerve, and prescribed a course of anti-inflammatories.

By this point I was having attacks pretty much every day, usually two or three times per day. I'd wake up in the morning, feel fine, maybe a twinge or two. Then I'd go to some meetings, or have lunch, or something, and then find myself struck by pain and unable to think. Down for the count - quite literally, because I'd end up laying on the floor of my office. Then it would end, maybe half an hour later, and I'd get up and go off to another meeting. Because I am super woman, damn it, and maybe I might have a little problem with admitting weakness.

It would often hit at the end of the day, as I was driving home, cursing every bump in the road. I'd put my hand to my face, convinced it would come away drenched in blood, because how could it hurt that bad and not be bleeding? I'd get home and spend most of the time curled up on the couch, trying not to move, and then eating what I could in the breaks between attacks. My dear, sweet husband: this time was so hard on him. He'd watch me in pain and couldn't do anything (and it didn't help that I was in a terrible mood). Unbeknownst to me until much later, he spent much of that time trying to figure out when he should take me to the ER.

Day 126: That morning, at 3am, I had the only instance of pain waking me from sleep. One of the classic characteristics of TN - and one of its few bright spots - is that the pain doesn't generally wake you up. It makes sense, I'm not talking (usually!), eating, or otherwise giving it triggers at night. So it is believed that when it does go off at night, something got triggered - maybe I clenched my jaw in my sleep, or something like that.

So I called my doctor, and she prescribed Avelox (a strong antibiotic). We had discussed this at my last appointment, as being the next step, in case there was an infection going on.

Around this time I finally noticed the pattern. The pain seemed to be more closely correlated with eating and drinking than it was with when the ibuprofen would have been wearing off. I also noticed that it correlated with talking - it would often be better on the weekends, when I'd just be quietly working at home, rather than in meetings.

I also discovered, accidentally, that drinking lukewarm water could temporarily pause the pain. [I discovered this when, it the grips of a bad attack, I dug out the bottle of Vicodin I had been given after surgery on my fingers a couple years ago, and downed a Vicodin with the water that was sitting on my nightstand from the night before. The Vicodin didn't help one bit, but the lukewarm water trick has saved me many times since. Also, for reference, the bottle of Vicodin was full - I hadn't taken a single one after the surgery on my fingers. I'm not a wimp when it comes to pain. But TN blows right past everyone's pain tolerance.]

So I came up with a theory that I thought very neatly fit my symptoms and explained why I got better after taking antibiotics previously: that I had a blocked salivary duct, which had previously caused an infection in my salivary gland, and which was causing my salivary gland to swell up every time I ate, talked, etc (i.e., did things that would produce saliva), and then it would press on my trigeminal nerve and cause the pain. Ta da! I had solved it! I was very proud of myself. I was also very wrong, because I totally ignored the complete lack of swelling, lumps, etc in my face.

Day 132: With the pain still raging, and my "blocked salivary duct" theory proudly in hand, I went in to see my doctor. When I explained everything that led to my conclusion, she looked at me and said the two words I had been petrified of since I began my internet research: Trigeminal Neuralgia. She didn't have much time to talk to me - the nurse had thought we were doing a follow-up on a sinus infection and scheduled a short appointment - but she prescribed carbamazepine (Tegretol), ordered an MRI, and said to come back in two weeks.

I didn't want to believe her. I cried all the way home, started taking the Tegretol the next day, and kept researching. I sent my doctor messages about other possible diagnoses, which she patiently addressed. My coworkers, who were as overworked as I was during that time, somehow managed to lift even more of the load so that I could stop going to meetings for a while.

In hindsight, I was lucky. My doctor already had a couple other patients with TN, so even though I'm a bit younger than the "normal" range for TN and wasn't describing the symptoms exactly like they are listed in the diagnostic criteria, she was able to recognize what was going on.

[Which, FYI to the medical profession, no patient describes their symptoms, for any condition, like the diagnostic criteria does, because the diagnostic criteria were written by doctors who were born having already attended medical school and have never spoken to any actual patient. Just saying.]

It took at least a week before the Tegretol started working at all. But then it did start working: I was still having attacks, just not as often - fewer things would trigger them. That's about when I accepted that my doctor was right.

Day 145: Another appointment with my doctor; increased Tegretol dose.

Day 153: MRI - but that's a story for another day.

Day 159: Another appointment with my doctor. The pain is pretty much gone now (and it has left behind the fear of attacks that most TN patients develop once their pain is controlled).

So that's the story of my diagnosis. And a new chapter of my adventures in TN begins next week:

Day 321: Internal neurolysis surgery at OHSU.