Hi, I'm a newbie

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.

Welcome Leesa. Sorry to hear all the pain you have experienced. I have had GPN for about 26 years. My pain is at the other end of the nerve in my throat. When it is "what I think of as active" swallowing food that is crisp and dry can really set it off. If I get an itch in my ear on that side and dare to touch my ear, it sets off pain right away in my throat. Catching a cold gives me lots of pain. At this current time I have no pain. But I think that is because we have not had to have the furnace nor the air conditioner running. But it is getting cool enought at night I know we will have to turn it on soon. Mine comes and goes. Most of the time I can figure what set if off. But sometimes I have no idea. I know when it is bad I have to use a pillow with a hollow spot in the center so my ear does not have any pressure on it. Let us know anything that you notice that may help you through those times.

Arlene

Thank you for sharing this Leesa! and welcome to the community!

Hi Leesa,

I'm a newbie too! From the UK also. This forum is full of great help.

Who is the chap you saw that said it's ON or GPN? (Not sure if we're allowed to post names?).

Jeffina

This was a great post, and especially awesome from a newbie. :)

Great work!

Welcome Leesa! Sometimes just knowing there are people that understand helps! The only medication that helped me was tegretal and I needed huge doses. Over the course of 12 years…4 just to get a diagnosis…the attacks got closer together and lasted longer. Severe ear pain, tonsil, and throat. All on the left side. The ear pain is Geniculate Neuralgia…I had surgery 3 weeks ago and feel awesome!!! Please read about my surgery, because if you do end up getting surgery they need to do it how mine was done if you have the ear pain…although mine was in my ear…like a ice pick stabbing me! Once I had enough tegretal ordered I regulated the dose myself…would slowly increase it until I had some relief…but I still would have the attacks…just a bit more tolerable…once the attacks started going away I would slowly wean myself off…until the next horrific event. I always filled my scripts even if I didn’t need it do I would be sure to have enough when it would flare up. Not a recommended thing to do but it got me through a few years. Good luck to you!!!

Hi Leesa,

I am also a newbie. I have been dealing with GPN for 12 years (and after reading Laura's post possible Geniculate Neuralgia as I experience the ear pain as well). The first 3 years it was undiagnosed and like you, once it was diagnosed I was so relieved. I have been on different medication the most recent being lyrica. My neuralogists said that lyrica was more effective and fewer side effects. I'm not sure if it is more effectived as I do still have flare ups that typically last 6 weeks with the most recent flare up lasting longer, however it is milder than in the past. Best of luck.