I started with what seemed TN in zone1 then spread to zone 3, then included the ice pick to the ear then pain in throat and now I have it behind my ear branching across the occipital region.... Can I just say "ugh"...? So, from my extensive research it would seem that I have ATN, TN, glosso, and occipital...? Who else has more than one issue and is it common among this uncommon condition to have the neuralgia types morph into other types or is that one is dormant until irritation? I have only seem one doc so far and he was a jerko so I am working to get into a specialist and get a real dx of the types I have.
I think your basic instincts are right. It is indeed possible to have more than one facial neuralgia. In the course of the past 16 years, I have met patients who had several types -- generally similar processes but involving different nerves. The combination of TN and ATN is quite common. The combination of either or both with glossopharyngeal neuralgia is also reasonably common (my spouse has had all three), and may occur as a sort of "progression". The ice pick pain in your ear may be associated with an extension of your TN into the Geniculate nerve. And occipital neuralgia can occur either alone or in combination with any of the above.
In addition to these neuralgias, a good number of patients have other head and face pain syndromes. These can include SUNCT headaches, Cluster headaches, Migraines (fairly common), polymyalgia, fibromyalgia, Complex Regional Pain Syndrome, and symptomatic trigeminal neuropathic pain associated with MS.
If you're having a tough time finding a knowledgeable doc, there is a section of our "Face Pain Info" article that is dedicated to the how-to of the process. See the menu selections at the top of our pages.
thats what I was told and Miami diagnosed none. a little confusing. i was wondering about the purpose of going back to lyrica when it didnt work years ago. im also concerned about side effects. i thought neurontin had less.
Elaine: Medication side effects tend to vary between individuals. For instance, many people have balance problems or cognitive disturbances with Neurontin. My wife isn't among them. She's been on 2700 mg/day for several years without significant cognitive effects other than occasional word-finding problems, and she's very physically active. In general, however, Neurontin has less severe side effects than Tegretol for the majority of people. It is also somewhat less effective in removing all pain -- it sort of drives the pain into the background for a lot of people.
isnt it impossible when i have symptoms of all of them and you cant test for all to get a true answer. I have had such varying answers from “good docs”. It seems to depend onn where the pressure is, the sweating, weather. The new dr. wants to switch to lyrica from neurontin. Lyrica did nothing ffor me a few years ago and I thought the side effects were worse. Im only on 600 neurontin. My patch in high than 2 30mg oxy and 2 1o mg. valium… The neuro with the most experience is Jacksonville. I know very little about the new one. Isnt there surgery for occipital and glosso or simulaters.
Elaine, there's no reliable surgery that I know of for "simulators." MVD can be used against glossopharyngeal neuralgia. Occipital neuralgia surgery is normally some kind of external exploration and nerve section into the neck. Nerve section is risky, given that deafferentiation pain can set in afterwards and make matters even worse.
I have been wondering the same thing and I too think I have several neuralgias going on. You are not alone. If anyone else has feedback about this, I would love to hear.
Flans, a veterinarian is not qualified to make these statements, and there is next to no support for them that I know of in medical literature. If you have support from published studies, please quote your sources.