Trigeminal neuralgia… what on earth is that?”

That was my reaction when I was hospitalized in May 2014 with the most severe right-sided face pain that I had ever experienced in my life. I had been trying to cope with it for three weeks with strong painkillers. I was thinking it was just another idiosyncrasy special to me and would soon pass.

I woke up at 4 a.m. on the morning I was taken to the hospital by ambulance. The pain had escalated to such a high level, I was physically sick and running a fever as my body was trying to find a way to cope with it. The rigors had set in and all I could manage to say to my husband was “ambulance, call the ambulance.”

I had no idea what was going on but I knew I needed help.

Once in Emergency at my hospital (which I must point out, I am now on a first-name basis with many of the nurses on the wards due to my frequent-flyer status!) the doctor in the ER came and listened to my story.

Within minutes he diagnosed trigeminal neuralgia, although that diagnosis did need to be confirmed by specialists.

I was admitted to a ward within the hour.

A long stay lay ahead while my medical team struggled to get this first major trigeminal neuralgia attack under control. The first four days were pure hell until they found the right medication for my case. Often it’s a medication called gabapentin that works well for TN. It unfortunately did absolutely nothing for me, despite the dose being constantly increased.

My specialist who looks after the majority of my medication, my rheumatoid arthritis and other autoimmune issues, visited me on the ward the next day. He was very disappointed I had left the situation so long before coming to the hospital. Nice to know he really does care but how was I to know whether this was just a passing symptom when my health is so complex?

The neurologist who saw me once I was admitted was much more understanding as to why I had deferred seeking treatment. I asked him how on earth can I tell, with this idiopathic complex disease, if a symptom is one that will just go away on its own or one that is more serious?

I don’t want to be running to the doctor every five minutes saying something hurts or doesn’t feel right. It’s one of the hardest parts of having such a difficult disease. He completely understood that I didn’t want to waste anyone’s time but all my specialists re-iterated that my condition is serious and I am never to hesitate in getting treatment if a new symptom arises.

It’s such a juggling act and one I think I’m getting better at handling… until the next curve ball comes along of course.

So after an MRI, a lumbar puncture (which actually wasn’t as bad as I expected it would be) and 10 days in the hospital, I was officially diagnosed with trigeminal neuralgia.

So, what on earth is that?

Trigeminal neuralgia is inflammation of the trigeminal nerve, causing intense facial pain. It is also known as tic douloureax because the intense pain can cause you to contort your face and move your head to try to get away from the pain. That type of movement is known as a tic.

The pain of trigeminal neuralgia is intense. There is often no known cause but I was told it can be linked to autoimmune diseases, most commonly lupus and multiple sclerosis.

Idiopathic trigeminal neuralgia is a clinical diagnosis and often no testing is required after your doctor has taken a history of the situation. In my case my specialists wanted to rule out MS so that’s why I needed the MRI and lumbar puncture.

My neurologist however still believed, despite my lumbar puncture results being OK, that I do in fact have an inflammatory nerve disease. My MRI was inconclusive for MS but falls into the “probable” category.

We decided to park all thoughts of probable MS as I had more than enough to contend with. In all reality my treatment at this point wouldn’t have changed anyway. The medication I was eventually given to treat the trigeminal neuralgia worked and continues to work really well today.

I have a philosophy of “one day at a time” that has stood the test of time with my complex health issues. I was never more grateful for that than in the coming months.

As I was discharged from the hospital in May 2014, with yet another diagnosis to pack in my suitcase, I had no idea what lay ahead.

Just five months later the strongest bone in my body (my femur) was about to have a major pathological break and I was to be diagnosed with a rare disease. A debilitating and progressive bone disease probably caused by a genetic mutation.

It’s also quite probable that my bone disease was the cause of my trigeminal neuralgia. My bones are so dense that they impact all kinds of nerves.

I am a strong believer that we are only given in this life what we are able to cope with (even if we feel like it’s too much). So if that means complex diagnoses and health events will arrive unannounced in their own time, I’m OK with that.

Some days, as I look back on my story, I am just so relieved that I didn’t know what lay ahead. I feel like I have been protected from being completely overwhelmed.

I’m going to continue living one day at a time and I’ll let tomorrow take care of itself.



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