Hi, my name is Leesa and I live in Bournemouth, Dorset, England.
I’ll give you a brief rundown of my story.
It started about 6 years ago, and was triggered by flicking my hair back which my fingers caught my ear, and bang, the pain was immense! I had never had pain like this before and thought something was drastically wrong.
I guess it lasted about 24 hours and then just disappeared as quick as it came. And I forgot about it.
Then the next time, about 6 months later, it was a windy day, same kind of thing, but it was the wind that caught my ear and bang, the pain came back. I call the episodes of pain, an attack, as the only way I could describe it.
Over the next year or so, I had 3 or 4 attacks and each time the pain was unbearable, as you well know. I went to my doctor and he said about TN and prescribed me some Gabapentin indefinitely. During a period of 8 months, I had another 2 attacks, spread about 3 months apart, so I went back to him and he prescribed Carbamazine. And guess what, more attacks continued. (all this is over about 15 months) and the pills made me seem very drunk! And obviously didn't work!
The pain is always in the same place, right behind my left ear, and it feels like a locked nerve. Over the years, the attacks are lasting longer, up to 5 days now. I have said many times that if I had to live with this pain 24/7, I would end my life, that’s how bad it is and because people can’t see anything wrong with you, and look generally healthy, they don’t get it!
So I went back and said the pills didn’t work and I was still suffering the attacks, and I couldn’t go on much longer. It was only because the attacks were 2/3 months apart that I could bare it. The doctor, said he didn’t know what it was, and to be honest, I don’t think he was interested. As you know they is no pain relief, not even Morphine would touch the pain, just helped me sleep.
Luckily we have private medical insurance, so I was referred to a Neurologist, the end of last year, who I went to see, and he said it sounds like a form of neuralgia, but because either pills didn’t work/help, he was convinced it wasn’t , and said he wanted to see me when I was having an attack, which happened within a couple of weeks, so took blood tests and nothing untoward showed up. He then referred me to an ENT Surgeon, who again said sounds like a form of neuralgia , but because the pills didn’t work, was sure it wasn’t.
So he then referred me to an ENT surgeon at Nuffiled Hospital in Southampton, where the appointment lasted 10 mins with him saying it was definitely a nerve problem and suggested seeing a friend of his who was a neurologist who had been practising for 40 years +, who I saw this week.
At last I found someone who understood my problem. After an hour discussion he said it was either GPN or Occipital Neuralgia. I actually burst into tears as I was so relieved that someone finally knew!
So basically as the pills haven't worked and he can't determine which one it is, he is referring me to a pain specalist, which will then wait until I am having an attack and give me a nerve block injection and go from there! If it doesn't help then it is GPN and we will talk further regarding what happens next.
Sorry for the long rant! I'm pleased I found this place and can chat to alike people.