Lately, I’ve had allot of ear pain. It feels like the ear canal is swollen. And there are sharp, short pains like someone shoved a large sharp pencil in my ear, our something weird like that. I’ve had ear pain before but this is very different. I had a day last week, my ear didn’t hurt but i put my finger in my ear and pulled out a huge glob of ear wax(hope no one squeemish is reading this). I was disgusted and confused. I haven’t been swimming and I don’t take baths so I have no idea what happened. But if anyone has advice or similar stories please comment. Thanks, Janet
The ear wax might or might not have been directly associated with the earpain. It's possible that you have additional nerve compressions which cause what is called "geniculate" neuralgia. If the pain persists after removal of the wax, then report this development to the physician who supervises your treatments for face pain... Stabbing pain deep in the ear in the absence of infection is very often diagnosed as geniculate neuralgia.
Regards, Red
Not so sure about that Red, most of the people I talk to with TN tell me they have ear pain, especially stabbing, or ice pick feeling. It's part of area 2 pain.
Regards, Sheila
Shiela, the distinction between "TN" and "Geniculate Neuralgia" which professionals use is the ice pick pain deep in the ear. The usefulness of this distinction is probably marginal unless someone is being considered for MVD, as the medical treatments for the two medical entities are largely identical. If surgery is considered, however, knowing which nerve is most likely involved can guide the surgeon in setting up the surgery itself.
Regards, Red
Thanks for that info Red. I know the ear pain hurts most in the summer. My entire TN is worse all summer with the high pressure. My ear still hurt after the glob of ear wax came out. I’ll mention it to my pain doctor but i doubt that’ll matter to him. My pain doctor was really nice at first but after I was diagnosed with TN that has a psychological factor to it, he treats me like i shouldn’t be there. Should I apply for a different doctor of bite the bullet and deal with him. It’s to the point i’m worried I’ll freak out at him and that would stop me from getting my pain meds, what do i do?
Janet: expand for me please: what was the sense in which your TN pain was supposed to have a "psychological factor", and what was that factor called? If it was "Atypical Face Pain", that's just a fancy label for "pain that crosses nerve distribution boundaries in an unusual or unexpected way". I've had recent correspondence from members of the TN Association Medical Advisory Board that agrees with a position that I've long taken: the term Atypical Face Pain should NEVER NEVER NEVER be associated with the term "psychogenic". All pain that is restricted primarily to the face is real and organic in origin, even if stress, anxiety or depression render patients more vulnerable to breakthrough pain.
As for what you "should" do, I can only advise you as I might someone in my own family: I would seek a consult with another practice, without informing your present doctors that you are. And the people who deliver that consult should already have a significant number of chronic facial neuralgia patients in their practice. By significant, I mean at least 20 or 30, not five or ten. The TN Association Patient Representative (Cindy Ezell) or office staff may be able to name someone known to the Association, with whom patients have reported good outcomes. If they don't have someone, then I'd advise you to inquire through the nearest TNA Support Group leaders, listed on the TNA website.
Regards and best,
Red
Hi there,
I'm new to the community, when I get my really severe pain (10 on the scale) my ear canal is swollen and I get shooting pains every now and then.
I think it's just one of those unhappy side effects
Take care
Michelle
It might be that you are dealing with geniculate neuralgia... OR with a recurring inner ear infection, Michelle. Have you been checked out by an Ear Nose and Throat specialist?
Regards, Red
Hi Red,
Yes I have been to an ENT specialist as back when this was originally occuring they believed i had some sort of tumor on my ear nerves. I had an MRI which ruled all that out. They passed me on to a maxillo facial surgeon who diagnosed me with ATN.
Take care
Michelle
Richard A. "Red" Lawhern said:
It might be that you are dealing with geniculate neuralgia... OR with a recurring inner ear infection, Michelle. Have you been checked out by an Ear Nose and Throat specialist?
Regards, Red
Very likely, then, your ear pain is associated with your ATN, only it derives from a slightly different branch of the nerve. Geniculate neuralgia is normally treated in much the same manner as the variety of trigeminal neuralgia which it medically resembles: in your case, possibly with a mixture of one of the tri-cyclic antidepressant drugs (which have cross-action in a common chemical channel, against pain), anti-convulsants like Neurontin, and possibly Lyrica or a low dose of tranquilizer. What meds are you now taking, Michelle?
Regards, Red
Currently I'm on 200mg Tegretol and 300mg of Gabapentin a day along with 4000mg of Solpadol 30/500mg capsules (Codeine Phosphate Hemihydrate 30mg and Paracetamol 500mg).
However I'm back off to the doctor in a couple of hours for a review and hopefully a referral to the Pain Management Council of my Local NHS service
Richard A. "Red" Lawhern said:
Very likely, then, your ear pain is associated with your ATN, only it derives from a slightly different branch of the nerve. Geniculate neuralgia is normally treated in much the same manner as the variety of trigeminal neuralgia which it medically resembles: in your case, possibly with a mixture of one of the tri-cyclic antidepressant drugs (which have cross-action in a common chemical channel, against pain), anti-convulsants like Neurontin, and possibly Lyrica or a low dose of tranquilizer. What meds are you now taking, Michelle?
Regards, Red
Your Tegretol and Gabapentin doses are well below the range generally considered effective in pain management. It appears that your doctors are relying upon the narcotic drugs to manage your pain. It's worth asking if a re-balancing of your meds toward the Tegretol and Gabapentin is appropriate for consideration.
Go in Peace and Power
Red
I know I am new to this, but I too am having ear pain, not in an infection sort of way because I have had those before, and I have not been swimming either. Mine also does not include any sharp or stabbing type pain, it’s more of a dull aching that comes and goes. Just my 2 cents worth.
Love Ali
My 13-year old son is now in his 5th month suffering from chronic inner ear pain, the symptoms of which seem to us to be a lot like Geniculate Neuralgia, though he remains without an official diagnosis; TN has been ruled out, though. The symptoms have been the same since he came home from school in tears: pretty constant pain deep in his inner ear, punctuated by stabbing ice-pick incidents (these were very prevalent initially, though seem to have lessened in the past 60 days, either from medication or his own managing of the pain or some physical change), with the ear itself incredibly painful to the touch (though not to touch around it, or to wind, sound, etc.) He did have an ear infection at the onset of the pain, but that has been long gone while the pain has remained. CT, MRI, EKG, EEG, and poking and prodding my ENTs, neurologists and otoneurologists with everything being “normal” and no definitive diagnosis.
As for treatment, he is now on 3600mg or Gabapentin a day, and was recently weaned off of Trileptal after being on 12oomg a day for about two months. They tried to move the Trileptal up to 900mg twice daily and he had severe side effects. They were going to put him on Lyrica, but now there are concerns about depression (um, duh, he’s 13-years old, is in constant pain no one can explain that has made him drop out of school and he hasn’t had a good night’s sleep in months, of course he’s feeling “down”) and they’re now thinking about Cymbalta, though he has to go through a psych evaluation because his neuro doesn’t want to prescribe it.
Which is a long-winded way of agreeing with Red that the dosages of the Gaba and Tegretol are really low :-), as well as cry out for any insights or experiences as we continue to try and find comfort for our son.
At Steve in regards to his son’s ear pain. This will sound dumb but have you tried a heated magic bag or wash cloth with warm water held against his ear. I find that helps as a temporary solution. That or plugging you nose and blowing to pop your ears helps too. Give those a try. They help me.
My daughter who is 12 has very similar symptoms to Steve’s son. 6 weeks of almost constant ear pain which began overnight and initially given antibiotics for an infection but with hindsight I wonder if there ever was infection or if the doctor just assumed pain=infection. It has not lessened with a variety of pain-killers, the ENT consultant is at a loss as to what to suggest next. Can anybody help. She has nothing else wrong except the pain . Had blood tests, MRI etc - all clear.
Barbara, it may be wise for your son to be tried on a short course of Carbamazepine (Tegretol, Carbitrol) or Oxcarbamazepine (Trileptal). A positive response to either could be considered confirming of a basic diagnosis of trigeminal neuropathic pain, trigeminal or geniculate neuralgia. A low dose of one of the tricyclic anti-depressants may also have positive effects, if the pain is neuropathic in origin. For further information on facial pain treatment and issues, select the "Help With Research" tab on any page here at LwTN...
Go in Peace and Power,
Red
Hi Barbara,
I've been thinking about you, wondering how your daughter is doing and what you've been able to find out, if anything. Please feel free to contact me directly if you'd like compare notes or just talk to someone who is in the same place and trying to find care for their child.
Steve
Hi Steve - No better . She has been started on gabapentin. Now on 400mg 3x a day but it is not doing anything. Do any drugs help your son - and do you feel any nearer to a diagnosis? I did find in a journal a case of a 12 yr old who was eventually diagnosed with nervus intermedius neuralgia and cured but they did say how incredibly rare the condition is in juveniles. Symptoms do seem similar to what my daughter has but it may not be that . She is becoming increasingly frustrated and worried about the lack of help. Do keep in touch and let me know how your son is doing. I have not found anybody else with a similar problem. Although ear-ache is common it nearly always seems to be an infection which quickly responds to treatment. Thanks for being supportive.
Barbara
The gabapentin can take a while to build up enough in the bloodstream to have an impact; I would suspect they'll continue to increase it until she either has side effects or it starts to show some efficacy. Isaac has been on 3600mg a day now for a few months, and it's really hard to say whether it's helping or not. He says that the pain is the same, but he seems to be able to manage it externally a little better. But whether that's because of the drug, his tolerance, or getting more rest, it's hard to say. They generally add a second med to the gaba; we tried Trileptol, but when they tried to get it to an effective level, he couldn't tolerate it, so we're likely to try Lyrica or Cymbalta next.
We have gone through the same course of frustration and outright anger from our son over the lack of a clear diagnosis and the doctor's inability to know what's going on and fix it. I wish I had good counsel there, but beyond patience and understanding, there's not much to offer. :-( This is a long path, with not a lot of good answers, and we just continue to try to get him through days with some distraction and pleasures knowing that we can't do much about the pain right now, though we are trying like mad. He has been doing acupuncture and biofeedback, neither of which are fixing the pain, but both of which are providing him with some relaxation, which is really helpful. He is at his worst when he is most fatigued and exhausted; the more decent sleep he gets, the better he is able to cope.
Our thoughts on a diagnosis is along the lines of yours, geniculate or nervus intermedius, neuralgia, which his symptoms seem very much to match. (I have also come across that one case study. :-) He did indeed have an earache at the onset, but that went away and the pain hasn't. In fact, his pain hasn't changed since it started - deep inside the ear, and with the ear itself being incredibly painful to the touch. No pain extending to the jaw, neck or face, and now specific triggers (which seems key to a diagnosis of TN); he is not bothered by music (we bought him a pair of massive headphones that wouldn't touch his ear so he could still enjoy listening), wind, change in temperature, etc. But a) we're consistently told that "We've never seen this in a child" and b) it seems to be incredibly rare, period. If TN is an underdiagnosed and treated ailment, GN appears to be a tiny pimple on its back.
The only other thing that's been thrown out there is that it could be sub-clinical herpes zoster, where in spite of having no recognizable symptoms of that virus (rash, etc.) that perhaps there was an unseen pustule in the ear that burst, blah, blah, blah. In the long run, the medical treatment of anti-epileptics and anti-depressants would be the same (as it would if it were TN), but that diagnosis seems as far a stretch for me as geniculate neuralgia does.
As great care as we have here in Seattle, we are starting to look at other hospitals and clinics that across the country that may have actually seen something like this in a child; John Hopkins in Baltimore here in US actually has a pediatric neurosurgeon who treats TN in juveniles. I think we're pretty far away from thinking about surgery, but we are certainly desperate for some expertise from people who may actually recognize what we're talking about.
I'd ask about a second medication, as well as the plan for increasing the Gabapentin. Stay well and stay in touch.
Steve
Barbara said:
Hi Steve - No better . She has been started on gabapentin. Now on 400mg 3x a day but it is not doing anything. Do any drugs help your son - and do you feel any nearer to a diagnosis? I did find in a journal a case of a 12 yr old who was eventually diagnosed with nervus intermedius neuralgia and cured but they did say how incredibly rare the condition is in juveniles. Symptoms do seem similar to what my daughter has but it may not be that . She is becoming increasingly frustrated and worried about the lack of help. Do keep in touch and let me know how your son is doing. I have not found anybody else with a similar problem. Although ear-ache is common it nearly always seems to be an infection which quickly responds to treatment. Thanks for being supportive.
Barbara