My journey with TN (as per 12 June 2017)

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I am a 42-year-old female, married, with four children, aged 19, 17, 11 and 10 (girl-boy-boy-girl). All of my children have health issues: congenital heart disease, eating disorder, allergies, ADD, anxiety...
We are originally from Belgium but migrated to Australia in 2008 after a four-year stint of doing linguistic fieldwork in New Caledonia.
I am doing a Ph.D. and have nearly finished my thesis and am also involved in a research project investigating medical communication.

Due to the progressive character of the condition, however, I had to stop teaching and now continue working on my thesis from home.

Now let's go back to where it all started.
I was only ten years old when I felt stabbing pain underneath my left eye. The pain would come and go. Our family GP diagnosed me with sinusitis and prescribed antibiotics. The treatment didn't work. Throughout the years, I also suffered from severe toothaches and became a regular visitor of dental clinics. This would continue for the rest of my life. I have more fillings than anyone else in my family. When I was 15, another GP diagnosed me with migraines and prescribed painkillers. Again, the treatment didn't work and the 'migraines' got worse, more frequent and more debilitating as I got older. However, they became part of my life, and I got used to them, treating them with strong painkillers that didn't do much at all, until, many years later, I had a terrible attack in 2008.

It was a massive flare up that completely knocked me out. The pain was so horrific that my husband decided to bring me straight to Emergency, where I finally had my first neurological examination. Everything was 'normal'. I received medication and painkillers through an IV drip and was sent home the same day. The flare-up lasted for six weeks. The pain came and went. Waves of excruciating pain in my face. At this point, we had decided to leave our field work in New Caledonia behind and had returned to Australia with our four children because I could no longer cope.

My husband finished his Master's degree in Melbourne and found a job in Darwin, so we moved to the Top End. The heat and humidity proved to be disastrous to my facial pain. Yet, I went back to uni as an external student and finished my BA. The attacks continued. My husband saw my plight and, after two years, he gave in and we moved to Sydney.

This was when I consulted my first neurologist. She diagnosed me with chronic migraine, put me on a preventative and prescribed naratriptans. The treatment was not very successful. She tried many different preventatives and sumatriptans. No success. Only subcutaneous sumatriptan injections would provide me with some relief. My neurologist was puzzled by my condition and thought I might have cluster headaches. I had a series of Botox injections that didn't do anything either. My neck started swelling up and it was discovered that I had several tumours on my thyroid, so I underwent a total thyroidectomy. I was declared cancer free afterward, happily finished my Master's degree, enrolled in a three-year Ph.D. and started teaching.

But then... I began to experience more frequent 'headaches' that all started underneath my left eye, as well as stabbing pain in my left ear. Again, I ended up in Emergency. This time, I was hospitalised. Three different neurologists spent ten days trying to figure out what was wrong with me. One thought I had migraine with trigeminal features'. Another thought I had 'overactive ions in my brain' and the third one claimed I had some type of 'bone inflammation'. The last one discharged me from the hospital and referred me to a maxillofacial surgeon.

I never went to see the dental surgeon. Instead, I decided to consult my dentist because, at this stage, April 2016, I had felt the first few zaps in my teeth and was getting scared. The pain had become unbearable. It was sharp as lightning and was caused by simple acts, such as brushing my teeth, chewing my food, washing my face or my hair, sitting in a car, etc. The dentist reassured me there was nothing wrong with my teeth and referred me to a good old friend of hers: an orofacial specialist at a pain clinic in Sydney. He diagnosed me with 'trigeminal autonomic cephalgia'. At the pain clinic, I was then treated by a psychologist and a psychiatrist. I lost 12 kilos in only six months' time because it was too painful for me to chew my food. I was now living on smoothies and baby food and had become underweight. Some of the coping strategies I learned at the pain clinic were useful but I had a hard time accepting that this excruciating pain and the attacks I was having would simply have to become a part of my life, as suggested by the psychologist, and I would have to find a way of living with it.

Meanwhile, I had been doing my research. I was slowly becoming convinced of the fact that I was suffering from a rare neurological disorder called 'trigeminal neuralgia' and, thanks to unlimited access to the university library database, I also knew the disease was commonly caused by compressions on the trigeminal nerve. Armed with this information, I went back to my neurologist. She agreed with me and ordered yet another MRI scan. It came back clear. The radiologist had not found any compressions or a vascular loop near the brain stem. I was devastated. My neurologist tried to comfort me and prescribed more medication for the pain.

I had a lot of problems with the anticonvulsants. That alone is a whole story in itself. Lyrica was the worst. It made me feel heavily sedated and getting off it was pure hell. Of course, I was also prescribed Carbamazepine, the golden standard of TN treatment. Unfortunately, my sodium serum levels plummeted after only one week on the medication, I was rushed to the nearest ER and told to stop taking the medication. Gabapentin was next. It gave me a rash. I was put on Topamax, with no benefit whatsoever and a whole range of nasty side effects. The psychiatrist at the pain clinic decided to add some Effexor to the anticonvulsant, much to the dismay of my neurologist. At this particular moment in time, about two weeks before my surgery, I was on Topamax 200mg/day, Effexor 75mg/day and Lamotrigine 200mg/day. My TN had been officially labeled 'refractory to medication'. In other words: I was still in an awful lot of pain.

Here I was, many years later, waiting for brain surgery, with an 80% chance of becoming completely pain-free. I finally underwent MVD in December 2016. It was only partially successful, alas. The procedure did remove all of the type 1 TN pain, so I no longer had the unbearable attacks or the electric shock type of pain in my teeth, which was a huge relief. However, I was still stuck with a more constant dull pain in my face.

So I went back to the neurosurgeon. He suggested GammaKnife surgery (radiation), a needle rhizotomy or SPG blocks. I chose the latter, as it was the only option that did not involve another surgical procedure. I had two sphenopalatine ganglion blocks. The first one did not do anything for me, and, after the second one, my pain got a lot worse, making me end up in Emergency again with a huge flare up. I begged the hospital neurologists for Lignocaine or Ketamine infusions, which they refused. I was first treated with a Keppra infusion, which didn't work, then with several Prednisone infusions, which didn't work either and finally received two Dilantin infusions, which completely knocked me out and provided me with a few hours of blissful pain relief. As a result, my medications were re-adjusted, and I was put on a rather effective combination of Lamotrigine 200mg/day, Dilantin 300mg/day and Keppra 200mg/day.

One of the neurologists at the hospital disagreed with the TN diagnosis, since he thought it was impossible to suffer from facial pain since the early age of 10, and suggested an alternative diagnosis: chronic osteomyelitis. The treatment for osteomyelitis consists of 6-8 weeks of intravenous antibiotics, pulling out most of the patient's teeth, removal of the infected jaw bone and a bone curettage! I was freaking out and asked for an immediate discharge. The doctors agreed on the condition I would undergo a more extensive blood test first.

As it turned out, no sign of infection was detected in my blood: my white blood cell count was normal, and my inflammation markers were fine. They also made me undergo a gallium bone scan (after having undergone a regular bone scan the week before) to check for 'anything suspicious' that would indicate osteomyelitis or, even worse, an osteosarcoma (bone cancer). Nothing showed up on the bone scan and my diagnosis of 'intractable trigeminal neuralgia' was confirmed.

And this is where I am today. I hope the medications will continue to help keep my pain under control. They do come with quite a few nasty side effects, and I will most likely need to undergo another procedure, a needle rhizotomy, somewhere shortly, as one can usually only take Dilantin for a limited period. I am still having side effects, such as dizziness, extreme fatigue and nausea. The medication has also severely disrupted my menstrual cycle. Some of the long-term side effects of Dilantin include lupus, liver or kidney failure, stroke, coarsening of facial features and excessive hair growth (due to high androgen levels it basically turns you into a man and may even make you grow a beard!). As you can imagine, I have no intentions of turning into a second Conchita Wurst, however admirable s/he may be! So I am planning to consult my neurosurgeon again soon and get booked in for one of the nerve damaging procedures.

Thanks for reading my story and if you are suffering from TN too, hang in there. Don't give up. There is always hope.