I have atypical trigeminal neuralgia and I’ve known this since July 2015.
A dentist first pointed this out to me, my doctor confirmed it, a neurologist diagnosed it and I have done my own research for five years. I’m a trustee for a national trigeminal neuralgia charity and I’ve written articles about my experiences for years. I am certain my pain is trigeminal neuralgia and I’m not looking for a new diagnosis.
I reached out to my doctor around a year ago, because I have extreme fatigue and muscle weakness in my hands, legs and feet. Sometimes I will lose feeling in my hands and drop my phone. Sometimes I just can’t feel my feet. I’ve been having issues with my legs for as long as I can remember. I find it difficult to climb stairs, I will avoid longer walks. My circulation is bad, but I can feel muscle weakness too.
Both my doctor and I agreed that it would be a pretty strange coincidence for me to have neuralgia, my eye issues and fatigue, muscle weakness, circulation problems and it not all add up to something else. She suggested maybe we see if there was one underlying health condition to tie them all together, to make sense of how I’m feeling and she bundled me off with a neurologist referral and I was feeling pretty ready to have some answers.
I had a very painful nerve test and the results came back “all fine”, with the same for my blood tests. I expect no less from my appointments, as I seem to be the rarest case and I was actually looking forward to my consultant calling me to discuss next steps.
Coronavirus delayed my consultation, but around 8 months after my nerve test, I finally received a phone call from my new neurologist and, looking back, the whole experience was laughable. However, if I wasn’t confident in my diagnosis of trigeminal neuralgia, the NHS would have really let me down on this one.
I am so glad I’m not newly diagnosed or in a bad place mentally, as this consultation would have been so damaging and the only reason I haven’t discharged myself from the neurology service now is because my next consultation is scheduled for 12 months from now and I’m hoping I’ll have a new consultant assigned by then, again..
The consultant asked me about my health and I briefly talked him through my neuralgia diagnosis, the rare eye disease that affects my vision and the long term problems I’ve been having with fatigue and my sore legs. He only seemed to really care about my neuralgia and asked me to describe the pain to him, which I can do very concisely now after 5 years of living with it.
He pointed out that this didn’t exactly match the notes on my file from the time of my first diagnosis.
When I was first diagnosed officially by the neurologist, I found it very difficult to articulate the pain I was feeling. I hadn’t yet heard the term ‘formicaton‘ (the crawling sensation under your skin that comes from type 2 neuralgia) and I was very depressed. I felt like my whole face was on fire and I found it very difficult to put into words exactly where the pain was on my face.
Over the last five years, I’ve learned to better manage my pain. I’ve had counselling. I can accurately describe the way my pain feels and I can identify exactly which bits of my face are painful.
I was a bit taken back, not because he was questioning my diagnosis – I am used to having to explain myself – but because I’d asked for help about my legs and hands.
The neurologist said that I wasn’t describing ‘typical trigeminal neuralgia’ and he’s right. I have atypical TN, or type 2, with occasional type 1 attacks. However, he didn’t seem interested in this and announced that he thinks I have atypical migraines..
I don’t have migraines. I have had probably two migraines in my life and I know what a migraine feels like for me. He said that migraines also come with fatigue, so he would be happy to accept this as an explanation behind my complaints of muscle weakness.
Nothing he was saying made sense and he didn’t seem to be putting together that my TN and my feelings of weakness did not always have timings that coincide and the fact that I don’t have migraine symptoms, I do a actually have trigeminal neuralgia.
Then I realised where he had gone wrong.
I have AZOOR, a rare eye disease that affects my vision, that was originally misdiagnosed as an ocular migraine on the first day it flared up. When I was describing my eye disease, he must have noted down “wavy lines in vision”, “light sensitive”, “loss of vision” and this has somehow blurred into my facial pain in his notes and thoughts.
I tried to correct him, but as I was doing so, he announced that another cause of my fatigue could be PTSD. A bit blindsided by this curveball, I told him I don’t think I’d been through any traumatic events, aside from.. getting trigeminal neuralgia.
He asked if I’d been a victim of domestic or sexual abuse and when I said no, he snapped right back to my apparent migraines and that was the end of my consultation. He’d like to see me face to face in a year for a second consultation.
Honestly, I’m not too bothered by the whole experience. I have a lot going on at the moment. I’m pregnant and we currently don’t have room for a baby in our little house. I have plenty to be doing for the charity I’ve just started working with and I’m very busy at work. I’m confident and happy with my trigeminal neuralgia diagnosis and I’m managing the fatigue as best as I can.
However, come next year, when I go back for a consultation, I’ll be asking for a new neurologist.