Holding My Breath

A year ago a rough period was just beginning. What I didn't know at the time was how long or how bad things were about to become. Today I am holding my breath to a degree... just hoping and praying that the events of a year ago aren't repeated. So far, so good!

Let me begin with two very dirty words...... TRIGEMINAL NEURALGIA. When I say these are dirty words I'm not exaggerating! This term should never have to pass the lips of any human being. Unfortunately, all too often it does. And equally unfortunate, it has now become a part of my life, as well of the lives of those who are important parts of my life. Trigeminal Neuralgia is an extremely painful condition emanating from the trigeminal nerve. There isn't an exact known cause of why the nerve becomes damaged, however, it is more common in women over the age of 50 and those who have Multiple Sclerosis. Here's an example of what Trigeminal Neuralgia "looks" like.....

My journey with TN actually began in June of 2015. I went to the dentist for a routine X-Ray, exam, and cleaning. I was told that everything looked fine (no cavities) and the cleaning went just fine. The next day I noticed my teeth seemed more hot/cold sensitive and I felt like I was getting a toothache on a tooth on the lower left side of my mouth. After a few days it was bothering me to the point that I decided to return to the dentist to have it checked out. The dentist did another X-ray and said everything looked fine; perhaps I could try a sensitive care toothpaste. I did that and after a week I felt relief. I figured it was just a "fluke."

Fast forward to mid August. The same thing happened. I began feeling increased sensitivity and a toothache, again on the lower left. It rapidly became worse but when I called my dentist I was told I couldn't be seen because it was a Friday and there were no appointments available. I was told the dentist had reviewed my chart and still said there was nothing wrong with my teeth. I took as many different types of over the counter meds I could think of to relieve the discomfort but the pain kept getting worse. By Saturday afternoon I was a Patient First thinking I must have an abscess or something. The doctor seemed to agree and prescribed an antibiotic and prescription pain reliever. She also told me about Smilebuilderz in Lancaster. This dental practice offers emergency appointments on the weekend. I figured I'd be fine to wait until Monday to see my own dentist. I couldn't have been any more wrong if I had tried.

First thing Sunday morning I was on my way to Lancaster. The pain was bad, BAD, BAD! No matter what I took or tried (heat, ice) I couldn't shake the pain. By the time we arrived at Smilebuilderz (shortly after 8am) they already had several patients waiting ahead of me. I wasn't willing to leave without being seen though. After 2 plus hours of pacing back and forth, walking around outside, crying, suffering, etc., Matt became pretty forceful with the staff and said I needed help. It was a short time later that I was seated and waiting for the dentist to examine me. Another set of X-rays and exam revealed nothing wrong with the teeth in the area. The dentist pulled up some information about a medical condition and before he even said a word I started crying again. I immediately recognized what I was seeing. I patient I had worked with had been diagnosed with the condition and I had watched her suffer for several years before she finally had a surgical procedure done which in her case worked very well. I honestly didn't think the dentist was right. On the other hand it all made sense. As he suggested, Matt and I went immediately to Memorial Hospital in York to be seen for the condition (because the medication needed to begin treating me wasn't anything he would be able to prescribe). The E.R. doctor agreed with the finding and within an hour I was given a shot and an oral medication One was a pain reliever while the other was an anti-seizure medication meant to sedate the brain (in turn calming the trigeminal nerve). I did get some initial relief but not for long. By Monday morning I was at my family doctor practically begging (not an exaggeration) to be seen and given something to help me.

I was given a higher dose of the medication I was prescribed along with a new medication (another type of anti-seizure med) to see if it helped. Dr. S. told me it may take a little bit of time to get everything under control but to not give up. He said this condition used to be known as the "suicide condition" because of the intensity of the pain and the limited treatments available. Sure enough, after a period of time (perhaps a week or two) I did seem to improve. I was feeling like the worst of it was behind me. In mid October I had a very minor "relapse" for two or three days but other than that things seemed to be going along much better....  UNTIL the wee hours of November 28, 2015. All Hell was about to break loose.

To make a VERY LONG (seven week to be exact) story short and because a lot of what took place isn't clear anyway, I had an OVER THE TOP  battle with TN. I woke with a severe toothache and it kept getting worse and worse. Again, regardless of what I tried nothing was working. This time around I ended up in the hospital on Dilaudid (a potent schedule II controlled opioid) around the clock while they tried to get the pain under control. After 2 days they began switching me off the Dilaudid and onto an oral opioid to take while a different type of anti-seizure regimen was increased to an effective dosage.

Following discharge from the hospital, I spent the majority of the month of December asleep. Every few days my medication doses would be increased to get to a point where I would be able to have pain relief while at the same time become able to "function" again. I literally "missed" Christmas last year. It's still something that brings me sadness when I think of it.

Due to the fact that I was asleep so much (and moving very little at best), I ended up with two additional issues... pneumonia and shingles! Can you believe that crap?!!!

Throughout it all I had my family standing by me. From what Emile and Brie told me, Matt slept on the floor in the "man cave" many nights. I couldn't sleep in bed because of the pain and then because of all the chest congestion. Brie kept all my medications straight up to and including getting up around the clock at times to make sure I was taking everything correctly. Both Emile and Brie had to deal with getting me to and from the hospital and/or numerous doctor appointments. And one of the sweetest gestures of all was when Emile sent me a darling flower arrangement to try and cheer me up. Christmas is my absolute favorite time of the year and I was struggling to such a degree that all of them were try to doing anything they could do to support me.

So here we are a year later. The medication regimen I'm on is working well. I've researched a few different surgical options should TN rear its ugly head and/or the meds I'm currently taking become ineffective. Am I scared things may become bad again? Absolutely!! I'm more frightened than is imaginable. I never want to experience what I went through again. I described the pain as being an all consuming "black" pain. The reason I say this is because at times black was the only thing I could see. There was no way to escape it! Fortunately, skilled doctors finally got on top of things and for now I'm "stable" and doing well.