I started experiencing sharp pains in my ear, like the typical Ice Pick in the ear description, in 2009. I went to the GP, who put me on Anti-Biotics for an inner ear infection. After the third time, I insisted that I be referred to an E.N.T. specialist. I waited two months for the appointment.
All the while I had attacks without any pattern nor prediction.
The E.N.T. did an examination, and couldn't find anything wrong, so sent me for a scan. Nothing there either. Oh, and he also took a sample from within my ear, and whatever test it was, came back as okay. He then referred me to a Neurologist. Again a waiting time of a couple of months, and no relief from the pain yet!
It was a relief to have the Neurologist ask if it felt like an ice pick in my ear! At last someone knew what it felt like! He sent me for another type of scan, but said that he couldn't definitely diagnose it as GN. That burst my bubble!. He prescribed Tegretol to be increased until there was pain relief.
Over the following few months, I did experience the side effects of Tegretol. The GP changed me to Gabapentin, and prescribed anti-depressants as well.That cocktail of drugs put me on such a high, I couldn't work, and after a few weeks I went back to Tegretol and no anti-depressants. I could then go back to work, but still had painful attacks, which I tolerated, and upped the Tegretol to 800mg per day.
The GP has now prescribed Pregabalin for when I have pain attacks... The first time I took one, I got so high, I couldn't even walk up the steps!! My lips went numb, I got all rubbery! It was like I was drunk, but the pain was dulled, Note: not relieved. I've had to take them for pain relief, but dread taking them for what they do to me. I'm high as I'm typing this now! Tegretol is now up to 1200mg per day. No shit!
So, last night (this morning) 04:25, I wake up with excruciating pain in my ear. I sat up on the edge of the bed and moaned cried with the pain, real tears. On a scale of 1 to 10, this was 100! I've never had this much pain. My wife got me another Pregabalin to take, and after about 5 minutes my lips were numb. Some relief, but not complete.
In the mean time, I've contacted a specialist, who sympathizes with me, and has referred me to someone else.... The waiting game continues !
Geniculate Neuralgia doesn't have the same support nor recognition that Trigeminal has. The NHS in the UK doesn't even list it under the alphabetical conditions and treatments, so I've emailed a Professor of Neurology, at a private institution. I guess the consultation and procedure will cost an arm and a leg. Have you seen the Medical procedure on You Tube about how they sever the cranial nerves to relieve the pain? You lose +/- 40% hearing, but hell, for relief of the pain, I'll do it tomorrow!.
It's nice to know that I'm not abnormal, and there are others out there who, like me , suffer with this. But it's no comfort to know that others may have the same pain as I do. I sympathize for you guys . All I can say is: Put pressure on your GP, Doctor, whoever , to get you through the to the neurologist, and get it sorted. Holding thumbs!