Ear pain = trigeminal neuralgia/neuropathy?

[football-mom]

I have been having some ear pain that is very close to my atypical trigeminal neuralgia on one side. It is very near the center of where my TN starts, but its not the aching or the flashing type of pain that is typical of my TN. Its more of a sharp burning ache in my deep in my ear that will travel up and make the tip of my ear have the same burning ache. Sometimes it will travel up that side of my scalp as well.

I've had it off and on as a "new" symptom since my big relapse this past October. Is it possibly trigeminal neuropathy? I don't really want to pay for getting things like this worked up by the doctor because its all secondary to the MS anyway and probably not treatable with surgery.

I think it would be a lot more painful if I weren't on gabapentin to control my TN, and I think I'm on the highest dose I can be on, which is 3600 mg/day. Do you think asking my neuro to increase my Baclofen might help? I'm only on 5 mg three times a day, which is a very low dose.

[rdmc]

Hi,

Sorry for your pain.

It could be an extension of the ATN...you also might try googling geniculate neuralgia. It can be in combination with the TN or glossopharyngeal (which it doesn't seem you have symptoms of)...but the GN is in, on, or around the ear, can cause the sharp pain of TN, or burning that can hang around for hours.

As far as treatment, if you've maxed out on the Neurontin without relief, maybe one of the other meds for neuralgia might help, or maybe your neuro will add another med to the Neurontin. There is tegretol, lyrica, and several other newer meds. Problem is they're all sedating, which can cause a lot of sleepiness. Sometimes they'll add a pain pill to the sensory med. Only way to know is to call your neuro and see what he offers for pain relief. If you're diagnosed with MS, already have ATN pain, I can't imagine there'd be any "work up" to go through in order for him to offer something for relief...then again, I'm not a neuro

As far as Baclofen, it's is a lifesaver for me with my facial pain (which tends to be more spasticity and spasm than neuralgia.) I still use Baclofen and a small dose of Klonopin to help control left sided facial/tongue spasms. I have a baclofen pump, but it does nothing for your upper body or face.

You're on a low dose of Baclofen, and I'm pretty sure it won't help with neuralgias, since it's principally an anti-spasticity meds.

But as I said before, give the neuro a call, and register this symptom, especially if it's a new one...then see if he thinks there is anything you can take for relief.

Hope you get some answers.

[football-mom]

Oh I did have the glossopharyngeal stuff. I had horrible burning mouth during that last relspse, along with an occasional icepick down one side of my throat. It seems my cranial nerves are taking a beating.

My neuro is anti - narcotics this early (im only four years in), but my primary has given me a small rx for oxycodone that is good for when the pain is really bad.

[arjay]

I've also experienced this in the past few years. Initially it didn't occur to me that it might be MS related -- I thought I had an ear infection or something.

When it became persistent (and very severe) I consulted an ENT. He confirmed that I didn't have an ear infection, but thought it was most likely due to temporomandibular joint syndrome. That can produce referred pain in the ear and the side of the face.

There's not a whole lot to do about TMJ other than trying to reduce chewing, exercising to reduce tension in the jaw, or trying a mouthpiece to reduce grinding of the teeth and jaw. You can have surgery but I think that's pretty extreme.

In any event, the pain would come and go. I'd have it severely for a week or two and then it would subside. Truly head splitting pain that almost literally makes you cry.

Recently I talked with my neurologist about it and he said it might be a form of trigeminal neuralgia. He prescribed oxcarbazepine, although I haven't tried it yet.

[Poppy7402]

Ear Pain

Have you looked at the possibility your ear pain could be something related to Uhthoff's phenomenon? You state that it's on and off so maybe/hopefully there's an element of heat and/or cold involved??

I feel like a complete idiot as it took me 19 months of this pain on a daily basis to realize that the most tiny increase in my core body temp was enough to set it off - even drinking a cup of coffee too quick did it. Now I'm aware of it I've figured out there's a few other things that are set off this way too, and been able to halve my pain meds.

Before this I'd tried Carbamazepine, Doxepin and (on occasion) Oxycodone together and it didn't touch it!!

[sgrammied]

Ear pain

Ear pain was something new to me. After having it for almost 2 weeks I went to my ENT Dr. Did some testing and some meds. He finally said it was my MS. Went to my Neuro told him about it and the spasms in the one ear. He put me on a new med. called Gralise. It has helped a lot. Pain is gone and spasms only once in a while. Took about 15 days to work as good as it does, but worth the wait as nothing else helped.

[tl-tr3]

i have trigeminal neuralia

Along with ear pain --- I was RX'd oxcarbazepine & baclofen for it . I am working full-time/driving so I hold the baclofen for bedtime only. But it is helping so far. Of course not 100% relief but I'll take what I can get, from this agony .

[football-mom]

Ear pain was something new to me. After having it for almost 2 weeks I went to my ENT Dr. Did some testing and some meds. He finally said it was my MS. Went to my Neuro told him about it and the spasms in the one ear. He put me on a new med. called Gralise. It has helped a lot. Pain is gone and spasms only once in a while. Took about 15 days to work as good as it does, but worth the wait as nothing else helped.

Gralise is gabapentin, just in a once daily form instead of 2-3 times a day.

[football-mom]

I've also experienced this in the past few years. Initially it didn't occur to me that it might be MS related -- I thought I had an ear infection or something.

When it became persistent (and very severe) I consulted an ENT. He confirmed that I didn't have an ear infection, but thought it was most likely due to temporomandibular joint syndrome. That can produce referred pain in the ear and the side of the face.

There's not a whole lot to do about TMJ other than trying to reduce chewing, exercising to reduce tension in the jaw, or trying a mouthpiece to reduce grinding of the teeth and jaw. You can have surgery but I think that's pretty extreme.

In any event, the pain would come and go. I'd have it severely for a week or two and then it would subside. Truly head splitting pain that almost literally makes you cry.

Recently I talked with my neurologist about it and he said it might be a form of trigeminal neuralgia. He prescribed oxcarbazepine, although I haven't tried it yet.

I went to the dentist, it is definitely not TMJ and I had gone to my primary multiple times over the nearly 7 months of earache, and it was not an ear infection. When I talked to my neuro he agreed that it was most likely glossopharyngeal neuralgia, which is the 9th cranial nerve.

It seems my cranials are taking the brunt of this disease for me.

I think you should try to Tegretol you were prescribed. That is what I was initially prescribe for the TN three years ago and while it worked incredibly, I had a rare reaction to it and had to stop it and go on gabapentin.

I'd like to try something other than the gabapentin because I have already maxed out the dose but still have breakthrough pain that takes several days to stop.

[Poppy7402]

I went to the dentist, it is definitely not TMJ and I had gone to my primary multiple times over the nearly 7 months of earache, and it was not an ear infection. When I talked to my neuro he agreed that it was most likely glossopharyngeal neuralgia, which is the 9th cranial nerve.

It seems my cranials are taking the brunt of this disease for me.

I think you should try to Tegretol you were prescribed. That is what I was initially prescribe for the TN three years ago and while it worked incredibly, I had a rare reaction to it and had to stop it and go on gabapentin.

I'd like to try something other than the gabapentin because I have already maxed out the dose but still have breakthrough pain that takes several days to stop.

Anyone know whether this glossopharyngeal neuralgia could cause the steinocleidomastoid muscle in the neck to spasm?

I suffered from this for a few weeks in March/April and I see that the glossopharyngeal nerve looks like it's attached to this muscle.

Funny though, although I could only feel the spasm on one side (R), the physio I was seeing at the time said it was tight on both sides. I did have the new symptom of earache and facial spasm in the left side at that time too.

I've just clicked that heat is probably what's setting off my SCM muscle today - duh!!

[venice]

As someone with TN, it does sound like it might very well be. Given that you are on such a high dose of gabapentin, it is not unlikely that the drug is ameliorating the more severe manifestations, like the sharp, stabbing pain, and what is left behind is the deep, climbing ache that you are feeling.

I was first on gabapentin, prescribed for the TN and some burning pain I get, but the sedating effects were too difficult to manage. I am now taking Lyrica, and it is much better, though not perfect. It is also more effective for the burning and buzzing pains, but not as effective for the TN. I get breakthrough pain fairly often, but I usually can manage it.

I think I also might have some glossopharyngeal neuralgia issues, but I've not had this diagnosed ... not sure how they can do that, unless it is strictly a clinical diagnosis.

[arjay]

I went to the dentist, it is definitely not TMJ and I had gone to my primary multiple times over the nearly 7 months of earache, and it was not an ear infection. When I talked to my neuro he agreed that it was most likely glossopharyngeal neuralgia, which is the 9th cranial nerve.

It seems my cranials are taking the brunt of this disease for me.

I think you should try to Tegretol you were prescribed. That is what I was initially prescribe for the TN three years ago and while it worked incredibly, I had a rare reaction to it and had to stop it and go on gabapentin.

I'd like to try something other than the gabapentin because I have already maxed out the dose but still have breakthrough pain that takes several days to stop.

football-mom, thank you so much for the clarification!

[cmj123]

I have Atypical Trigeminal Neuralgia and most of the pain is in my left ear. Today it's at a 1, sometimes it gets very bad.

Does your cheek hurt also sometimes?

[cmj123]

Hi there,

Sorry you having the pain, you pain sounds a lot like my pain, my is mostly a deep pain in the ear like a bad earache but worse then any ear ache.

Ear doctor, Neuro agreed it was Atypical Trigeminal Neuralgia, and put me on Gabapentin.

You could go to a ear, nose and throat guy and he can tell if something is wrong with your ear or that and then if it is Trigeminal Neuralgia he can put you on meds for it, or if something is wrong with your ear he can treat it. But either way ear infection, something else, or Trigeminal Neuralgia needs to be looked at by a doctor.