1. My Journey with Trigeminal Neuralgia by Janice MacArthur
It was June 2008 and what had started as a dull ache in the right side of my
mouth, finally forced me to visit my dentist. I had toothache (or so I
thought). My dentist duly examined my teeth and a miniscule hairline crack
was seen under X-ray. The procedure of root canal treatment was commenced and
continued for a period of seven months.
However, despite this, I had no respite from pain. In fact, the level of pain
increased and continued even though I had been 'numbed up' on many occasions.
My dentist, by this point, suspected Trigeminal Neuralgia although she had
never come across anyone with it before and reckoned that, at 43 years old, I
was 'too young'. She hoped that for my sake it was not Trigeminal Neuralgia
and so, the term was not used again. However, she did refer me to a mouth
specialist who didn't listen much to what I said but promptly told me that
from the alignment of my teeth I was a 'grinder' and that the pain was due to
'grinding' and would be sorted if I wore a mouth guard at night-time.
I was sceptical and found it hard to believe that the level of pain I was
experiencing was due to grinding my teeth! However, I went along with it and
yes, the pain continued. In the meantime, I was living on paracetamol and
felt physically drained of energy. I was continuing to work every day but
life was becoming increasingly difficult. At this point, I went back to 'the
specialist' who persisted with his 'grinding' theory even though my husband
spoke for me during the consultation as I was in so much pain
By this stage, my doctor had referred me via the NHS to see a maxillofacial
specialist as he thought I had 'stones' in my salivary glands. This was ruled
out but that visit was an experience I won't forget for the wrong reasons. I
was instructed that the pain was due to nail biting and that I should continue
to wear the mouth guard which I had already privately paid for - all very
dismissive! At that consultation, I mentioned that I had read about
Trigeminal Neuralgia and was concerned that my symptoms matched - this was
ruled out and I was advised to ‘read the internet health blogs with caution’.
I left the hospital the way that I had come, in excruciating pain.
At work, I noticed that when I answered the phone I would get 'shocks' in my
mouth which took my breath away but I couldn't explain what they were. Then,
one afternoon, before addressing a large audience, I noticed that the shocks
were coming and going more frequently especially when I spoke. This was a new
development and I now know that the Trigeminal Neuralgia had progressed at an
alarming rate. By mid February 2009, nine months from the time the pain
commenced, I really wasn't well at all and had no diagnosis apart from the
fact that my pain was due to 'nail biting and teeth grinding'. Life was
becoming a struggle and even my family were beginning to think it ‘was all in
my mind'. I felt absolutely helpless.
Shortly afterwards, and whilst at work, I had what I can only describe as an
'attack'. I felt a lightning bolt of the highest velocity going through my
body. This description sounds dramatic, but believe me, the attack was not
comparable to anything I had ever experienced before. Thankfully, I was
outside at the time because I screamed so loudly that 'I would have wakened
the dead'. It was like experiencing a form of torture which gripped me with
pain from my mouth right through to my feet. After it had passed or fizzled
out, I couldn't believe that it was still possible for me to be standing
upright and alive!!!
2. In desperation and panic, I rang the 'dental consultant' who insisted that I
go to my doctor for the following medication - Trileptal. I had no idea what
was happening to me and in my naivety I thought that the prescribed medication
would take the pain away and that I would be okay after a few days - a bit
like taking an antibiotic, I suppose! That didn't happen and the pain
continued but I had no more lightning strikes for a couple of weeks. I
continued to work. I was the boss and needed to be there and, anyway, what
could I say was wrong with me apart from the fact that my mouth was in agony?
It was easier to work and say nothing - who would be interested anyway? Then,
one Friday morning, I finally cracked; I couldn't go on. The pain had beaten
me and the shocks were becoming ever more frequent, driving me to my knees.
It was impossible for me to conduct a conversation or continue with my daily
work duties. The pain was relentless. I left work that day a broken and
fearful spirit. That was my last day at work for a year and four months.
Now on sick leave, my pain escalated and so my GP advised me to increase the
medication. This I did without any effect, and still with no idea what was
happening to me although I was becoming increasingly aware that what I had
read on the internet regarding TN matched my symptoms. By this stage, I could
not eat or speak. Just trying to get food into my mouth was an arduous
procedure and it was easier to sip nutritional shakes. Even the slightest
movement left me reeling in pain. If I got in a comfortable position on the
sofa, I lay there all day; my mother had become my carer.
The breakthrough for me came via my dentist. I spoke to her again and asked
if an emergency appointment could be arranged at the Maxillofacial Unit of my
local hospital. At that consultation I saw a different consultant. He
immediately took me seriously and could see that I was in difficulties. He
gave me a lidocaine injection which he said would last for five hours, long
enough for me to lie still in an MRI scanner. However, I should point out
that I did have private health insurance cover so the series of events which
occurred next were all done through private health insurance. I dread to
think how many more months of torture I would have experienced had I not had
that cover. Indeed, I am saddened that there are so many TN patients who are
not taken seriously because of the lack of information and provision regarding
TN, and who are trapped within an inadequate system! My knowledge of TN is
based on the TNA literature, especially' Striking Back'. The Maxillofacial
Consultant recognised that I was desperate for help and also organised for me
to see a neurologist the following day ....
I saw the neurologist and for the first time in 10 months, suitable medication
was prescribed for me. He diagnosed Trigeminal Neuralgia, saying that my
scans showed that a blood vessel was wrapped around the fifth cranial nerve
and that this was the cause of the pain. He organised for me to be seen by a
pain doctor within a few days, as by this stage I was becoming dehydrated and
could not speak much due to the pain. It was difficult even to swallow as my
own saliva triggered attacks which were relentless.
The pain doctor recommended 'an injection through the cheek’, something called
a radiofrequency, and said that would get rid of the pain for possibly five
years. I may be a little numb afterwards, he said. As for the procedure, it
would be a bit uncomfortable but I would be in and out of hospital in one day.
My husband did most of the talking at that meeting and, in fact, he was the
one who remembered what was said. I was so ‘drugged up’ with the maximum dose
of anticonvulsants that I had little memory of the event. The only thing I
3. knew was that I couldn't go on like this and if an injection would sort the
pain, then I had to have it done.
Within two days I was having 'radiofrequency of the trigeminal nerve', an
experience forever imprinted on my mind. The initial procedure took place
whilst I was awake and if TN pain was excruciating, then the pain of that
injection was off the scale. Words fail me when I think about it now! I came
out of theatre traumatised and more frightened than I have ever been in my
life. I felt terrible. However, I was told that in a few days I would be
okay and feeling fine. This was not to be. As far as everyone around me was
concerned, I had just had a 'procedure', an 'injection', and an overnight stay
in hospital and they just wanted me fixed, better. I was feeling far from
better. My face, now numb, was so very painful.
The attacks had gone but had been replaced with the most weird and painful
sensations. My face was freezing cold, colder than a freezer, and I had to be
tightly wrapped up in a scarf all the time to try and prevent the coldness
from consuming me. My face felt as if it was being cut with glass and my skin
felt as if it was being torn. I scratched and scratched. I hated speaking as
it hurt me. I couldn't chew on the right side of my mouth (still can't) and I
had no taste. This was the trade off and I hadn't expected or been warned
about any of it - only that I could be numb! I felt as bad as ever and,
although I did try to come off the medication, the pain in my face was so
unbearable that I needed something to deal with the nerve pain. Life was not
At that stage, April 2009, I came across a website hosted by TNA UK. I was
surprised to read stories about people who had had surgery for pain like mine.
I had been told that an MVD was only an option once all the other, non-
invasive options had been explored. However, having browsed the website, I
realised that other TN patients in the UK had had an MVD as a first option.
By now the TN pain was beginning to break through the numbness and I knew it
was only a matter of time before I had a full blown attack. However, I tried
to keep the level of medication as low as possible as this helped me to
I made another appointment with my neurologist to discuss an MVD and to ask
how I could see a neurosurgeon. I was told that an MVD couldn't be done in
Northern Ireland and that the closest hospital to us was in England. I asked
for a referral to a neurosurgeon there as I desperately wanted my life back.
I contacted the TNA for advice.
I flew to England at my own expense and met a neurosurgeon there. He was a
man experienced in the field of TN and MVDs. He told me that my MRI scan
showed 'a vascular compression' and, had I lived in England, I would have been
offered an MVD as a first option and as a matter of urgency. My TN was
classic - I was a classic TN case. The bad news for me was that the operation
could not be done just now as I had too high a level of dysaesthesia - painful
numbness. I would need to wait for a while to see if the painful numbness
receded and if the TN pain continued to break through. He assured me that if
the pain broke through, the operation would be done. I went back home,
disappointed of course, but I knew that his decision was sensible. My life
was on hold...
The summer of 2009 was a bit of a blur. I was by now getting breakthrough
pain on a regular basis, although the freezing cold feeling was not as bad as
4. it had been. However, I couldn't tolerate wind on my face or air-
conditioning. My speech was poor as, yet again, that had become a trigger for
pain. I was fearful of a big attack and hated to go out on my own. The TNA
UK had become my lifeline and support.
In June 2009, I asked to see the neurosurgeon again. He was not available but
I saw another experienced neurosurgeon. He assured me that he would do the
MVD, but now the bombshell - because I had had an injection, my chances of
success were not as high – about 75-80%! That was news to me. However,
despite that, my answer to him was clear; I was going to go through with the
My surgery took place in England in late September 2009. I was, of course,
away from home, family and friends and, yes, that did impact on me a lot but I
was determined that this was my only chance to get my life back. It wasn't
only about me; it was for my family too as they had cared for me every day.
I was in hospital for just over three weeks as I picked up an infection when
there and had to go back to surgery again. However, after the second
operation, I left hospital the following day to take an 8-hour journey on the
ferry back to Belfast. That was by far the toughest day of my life!
At home, recovery was slow but with the support from my family and friends, I
got there! They encouraged me to fight every day and to be positive about the
future. My faith in God was also my rock and I knew that despite all the
problems, I would get there.
Now, almost one year after my MVD, I am pain-free! Yes, I still have a dense
numbness in my face but the gripping fear of a TN attack is gone. I have been
able to return to my career - something which I thought would not be possible.
However, I live one day at a time and I don't take anything for granted. TN
has taught me the preciousness of family and friends, and has forced me to be
a stronger person.