Thursday, February 23, 2012


So, as I've described to people the pain I've been having and just generally talking and venting, it seems everyone has their own theory of what might be causing the problem. Some of them include:

- magnesium deficiency
- dehydration
- stress
- sinuses/ allergies
- radiation from cell phone
- proximity to power lines
- proximity to natural gas line
- eye strain from computer/phone screen

I know everyone is just trying to help and I do appreciate any ideas of things that might help. I really do. But . . . I must say, in some ways it gets exhausting. I can only try so many things and entertain a limited amount of ideas in my brain at one time. I do research and I try to figure things out, and I try to tease out side effects, and complications, and all sorts of cause and effects. Some of these come from my doctors themselves. And I can just only do so much.

Here are the different theories all the different Drs I've seen have come up with. They seem to rotate around some common themes but no one has real answers to give me. I understand the best Drs can do is educated guesses. But I respect and rely on their expertise (and I pay good money for it). It is tiresome and frustrating to not know what's going on. Especially going day after day after day in pain and not knowing if anything will help or if it will ever stop. But anyway. Here's the scoop so far:
{This is the complete chronological tale. Brace yourself.}

Aug 2011 - ear pain radiating down into lower jaw

Dentist: not tooth, probably not TMJ disorder (disorder of the temporomandibular joint, or jaw joint)

Dr: ear infection, swollen lymph node
(after antibiotics didn't help: possibly trigeminal neuralgia - TN)

ENT: not ear infection, maybe TMJ disorder or TN

And then it . . . sort of mostly went away.

Fast Forward to . . . . Jan 2012

Had a constant terrible one-sided headache for a couple wks. And saw:

Nurse practitioner: not migraines, but here's some migraine med samples (didn't help)

Then my ear started hurting as well as my head. And my cheek. And eye. All on one side.

ENT: not ear related. Ordered MRI.

Results of MRI: nurse said it's not a tumor, MRI normal, prescribed amitriptyline for nerve pain.
The ENT was retiring and told me to see another ENT for follow-up.

Picked up MRI results on my own to bring to new Dr: said there was a small meningioma or schwanoma (types of tumors), or neuritis (nerve inflammation). WHAT?!?

Nerve ENT (for follow-up and clarification of MRI): whatever showed on the MRI (tumor or neuritis) was on the wrong side. It would be causing me pain on the other side. (What the heck?!)
He said it could be TMJD, but that wouldn't explain the pain in my cheek and eye. So it could be trigeminal neuralgia.

He referred me to a neurologist.

Neurologist: probably not TMJ disorder since it doesn't get worse with chewing or exerting my jaw. Said it could be facial migraine, which is a migraine where the pain is felt primarily in the face.

Some of my own research shows that migraines can then trigger the trigeminal nerve pain. I'm still not sure though that I completely understand what the neurologist thought was going on. He prescribed Lyrica to take instead of the amiptriptyline. Has me keeping a detailed pain/headache log. Scheduled me for an EEG and did some bloodwork to rule out some other stuff.

So, here I am.
I bought myself a book about trigeminal neuralgia and facial pain. I'm about 1/3 of the way through so far and if I were to diagnose myself, I'd say it's most probably atypical trigeminal neuralgia (or TN type 2).

Funny thing is, they say the best way to diagnose it is by trial and error with medications and if the ones that work are the ones that work for TN, then that's probably it. But just because the meds don't work, doesn't necessarily mean it's not it. Uh-huh. So helpful.

Anyway. That's the story.

Any theories you'd like to add? What's your favorite? Or based on all my Dr's visits, what do you think is going on??

[Not, you know, that I'll necessarily take anything you say into account or anything. But it's fun to add it all to my growing list.;)]

And PS - I apologize for all the negativity and whining, moaning, and complaining. I'm not doing very well but, just so you know, I'm trying to get help as much as I can. Thanks for your patience and understanding. Really. It means a lot to me.

1 comment:

Colleen said...

A couple of the theories made me laugh, but I'll not mention them so as not to offend anyone. :)

As an anecdotal comment on one of the theories (which I'd never have thought of if you hadn't triggered the memory), I have an old roommate who posted on Facebook awhile back that someone recommended she drink eight glasses of water a day to help with migraines and they went away completely. After a decade of awful migraines. Seems too easy, but worth a shot, right?

I'm sorry you're dealing with all of this. It sounds totally miserable.

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