I’ve suffered with GPN for a decade now. According to a specialist at House Ear Clinic in LA, I’m not such a good candidate for MVD because the disease has progressed so much that the success rate of the MVD is much lower than if I’d opted to have it years ago. At this point I check in with my ENT and neurologist periodically and with my pain management doc regularly. That said, over the past 10 years the GPN has changed in size, locations, intensity, area, etc. Now, I have a VERY sore neck. Just recently the ice pick in the ear pain has taken up residence in my neck - good news, bad news. I’ve read online about patches and topical compounded analgesics that are used by people who suffer from Eagle’s Syndrome. These provide temporary relief. The topical/patches are a combination of gabapentin/ketoprophen/lidocain, for example. Has anyone tried this type of pain relief? I’d especially appreciate hearing from Rob (?) as I konw he’s a physician, and I’d value his take on ths approach. Thanks…Nikki
I also get the sever ice pick pain deep in my ear which will typically last for 3 hours or so. The pain level can vary from attack to attack. On the worst attacks even the slightest touch anywhere on my ear can make the ice pick feeling, feel like its twisted sideways. I discovered during one of my worst attack. I tried hot water bottle filled with water as hot as I could stand. Then lay on it for 15min to 30min and pain just disappears until the next attack.
Hi Nikki -
I've had a recent flare-up and today it is in my ear and runs a bit down my neck to clavicle. I, too, am interested in any info on these patches!
Take care - Kara
I was prescribed a compounded topical cream by my pain management doc. I asked for a combination of ketoprophen (20%) gabapentin (6%) and lidocaine (10%). She came up with the percentages. But that she listens to me and is willing to try new approaches with me is what I love about my doc. Anyway, this med comes in a little jar and is compounded with a very sticky cream. I rub it on my neck and I put a little on a q-tip and stick it in my ear. AND IT HELPS!!! But only for a little while. Obviously this is NOT A CURE. I’m just looking for a little relief now and then, and it’s very helpful. But like I said, not for long. The affects last about 45 minutes. I’m seriously considering gamma knife!!! I’ve been in SO MUCH PAIN lately. Boy oh boy, stress really gets the pain going.
I have had this condition for 17 years and was finally diagnosed 6 years ago. Doctors thought I was nuts when I described the "ice-pick in the ear" pain. It was comforting in some way for me to read your post and hear someone else describe the pain in the same way. I am new to this community and it has been so interesting to hear others who are dealing with the same strange condition as I have. I have never met or spoken with anyone else who has this condition. Anyway, I used to take Tegratol (sp?), but it made me fall asleep and feel dizzy and sick. Now I take hydroprophin, a combo of hydrocodone and Ibuprophin. I'm not sure if treating with pain meds is the "right" thing to do, but its the only thing that gives me relief and allows me to function in my job and as a mother.....or human being. I'm interested in this topical cream you are referring to. Are you still using it? What more can you tell me? I am going to see an ENT for the first time next month. It would be helpful to have some ideas to take with me. I have been through many neurologists and Mayo Clinic. I'm hoping an ENT might know something different.
Hi Nikki,
You are lucky to have a doc that prescribes the lidocaine for throat pain, it does help. It just does not last very long. They usually do not give this due to it adding to the difficult swallowing. I remember when seeing Dr. Tew in Ohio he used the lidocaine, as a diagnosis tool. He then prescribed it for the pain. It was viscous xylocaine, and it did help. For reasons unknown the pain can change, be gone for a week or so, then coming back still in same area, but spreading to different ones too. Something that helps me at times is drinking hot tea or coffee, not sure why? Coldness makes mine much worse. A pain specialist, most of them are anesthesiologist are trained to find the nerve responsible for pain, doing so by injecting the nerve, blocking pain, eventually locating nerve.Good luck with this process, just do not allow some of these docs, to dismiss your pain, I believe it's due to them not understanding this type of nerve pain. Hope you soon find the answers you need.
Take Care-Kat
I have used plain topical lidocaine gel on the tonsil and around where the pain originates, but it only has a limited effect on my situation. The pain still triggers with eating, swallowing liquids. etc. It may work for you and it is worth a try.
I use a Morphine cream my pain mgmt dr & a compounding pharmacist developed. It is amazing & lasts hours.