Trigeminal Neuralgia, What is it?

Definition

Trigeminal Neuralgia (TN) is a neurological syndrome characterized by excruciating pain to the face. It is chronic and progressive.  While remissions of up to 6 months in length are reported by up to 50% of TN patients, it usually returns and most often becomes more frequent and severe over time.  While a fortunate subset of patients with typical TN are able to achieve long-term and/or permanent pain relief with a procedure called microvascular decompression (MVD), for many others there is no cure. (This was taken from Face Facts)

My journey to a diagnosis

I wish I could say that my diagnosis came quickly and easily, it did not.

In August one day I had excoriating pain all over the left side of my face. Following that came several weeks of wide spread pain all over my body. So off to the doctor I went.  Disturbingly in addition to the pain I was extremely forgetful and I was frequently reversing the order of words.

The doctor recommended OTC painkillers and a heating pad while we waited for test results. We scheduled a follow up for two weeks later. According to my blood work I should be healthy.  So we scheduled a brain scan but it was going to take a few weeks to get in.

I couldn’t sit ideal for weeks letting my brain run away with itself.

Off to the dentist I go

While I’m waiting for the MRI I decide to go to the dentist.  I had a pretty awful bicycle accident when I was young and it did a substantial amount of damage.  As I spoke with the dentist he told me that it sounded like a nerve issue and my visual check up didn’t show any concerns.  I asked for x-rays including an in-depth wrap around image as well.  To their surprise they found two abscesses.  So I started some antibiotics and we scheduled the root canals.  One was successful, the other tooth was too calcified.

So it’s off to the endodontist. He believed that he would be able to do a traditional root canal. I was so grateful to hear that I would finally feel better.  The utter relief I felt at the idea was overwhelming.  So root canal day comes and I have a system for any major dental work, I take an oral sedative, put on dark glasses and insert earbuds to listen to an audio book or a meditation program.  At this particular office they also put a quilt on me and prop my mouth open so I actually sleep.  Only when they woke me the root canal had not been successful and I needed to heal for three weeks before I could have surgery through my gums instead.  So I waited patiently.

Then surgery day came !!!!! YAY!

And then oh my god, the pain as the sedative and the freezing wore off at the same time.  My kids were barely home from school when I threw up into a bowl in the living room because I wasn’t going to make it anywhere else.  Side note is that when Atticus told Margo she confirmed with him that I had a bowl and I was alright, then she told him to leave me alone and not to watch.  I adore that kid.

So a week later I went back and I have this awful migraine, it’s all consuming. They remove my stitches and check how I’m healing, everything looks great.  If I could just kick this migraine.  Except I don’t kick the migraine.  It’s never ending, and now my sinuses seem to be inflamed. I reach a point where I have a migraine, light sensitivity, cheek and sinus pain, only on the left side,   then comes the boat load of pain at the surgical location.  But I have no fever and no inflammation.  So I start using a nasal spray and allergy medicine, to see if it’s all sinus related.

Monday after dropping the kids off at school I had enough and I went to the clinic.  At this point except for some reprieve for a week after the first two dental procedures I have been in high levels of pain for six months. I am sobbing.  He asked where the pain was most intense, he checked my ears and throat, we discussed all the dental work and the previous pain. Then he checked my facial muscles.  And told me quite plainly that he believes it is Trigeminal Neuralgia. He wrote a note for my doctor, prescribed me enough lyrica for two weeks and told me to see my doctor after I had been taking it for a few days.  Turns out that positive reactions to anticonvulsant medication is considered a positive diagnosis.

But before I could allow myself to fully believe that I had this lifelong illness that would always require managing, I decided to have a consult with my dentist again.  We took new x-rays and did a new exam, everything is healing great.  He agreed with the clinic doctor’s diagnosis. He said it was the first time he was disappointed to tell someone that they had no dental issues. He also reminded that there are treatments available.

My feelings have really been all over the board today.  I spent months thinking I had a nerve issue, or had suffered a stroke. But then it was as though I had been given a golden ticket and I went through multiple dental procedures including a very painful surgery.  Only I didn’t end up fixed; in fact I escalated to the point of vomiting from pain about once a week.

So while having a diagnosis is a great thing because we can start to manage this better, it wasn’t the diagnosis I wanted.

At the end of the day though I know we will deal with this, and I am truly grateful that it is manageable.

XOXO As Always Alice