But sometimes I think it's important to know that answer. Because I could find Drs that specialize in migraines but may not know a whole lot about trigeminal neuralgia. There are "headache specialist" neuros. I have yet to find a "trigeminal neuralgia specialty" Dr.
But there are neurosurgeons who specialize in the surgical treatment of TN. They usually only operate on typical TN patients with a very specific pain pattern, though, that I don't really have (I have some aspects of it, but I also have other more constant pain which isn't consistent with typical, or classic, TN). So, it is possible that somewhere along the way I could find someone to treat the TN but it may still leave with the migraines. So then what? Would that take care of the worst problem? Especially since the most common surgical treatment for TN rings to the tune of about $80,000. This is a big question.
But I don't know. And then to add to the confusion, I have some pain, the eye pain particularly, that I don't even know for sure which category it falls into. Some people with TN have similar eye pain. Some people with migraine have similar eye pain. And the exploding eye pain, especially when it continues more than a day or 2, is probably the worst to deal with. That's what sent me to the ER last time. But the relentless, day after day after day, throbbing migraine pain gets to me too. I guess I'd say that the TN pain isn't as bad, most of the time. But it's the sharp, stabbing, electrical jolts of TN facial pain that stop me in my tracks, make it so I can't chew or talk at times (thankfully not often), and will bring me to tears. At it's worst, it is completely unbearable. But that is usually shorter lasting. So it's awful. But it ends sooner. Which is worse?
Sometimes, a migraine that is manageable for a day or 2 becomes unmanageable on day 4 or 5, or 10 or 15. The severity of the pain hasn't actually changed, but my ability to cope with it lessens over time. I can only take so much of constant pain. So, yes, the 22 day migraine was worse in some ways than my TN pain. The reality, of course, is that both things happen at once and build and feed on each other. It's the combination that's the killer.
So, if I had to choose to get rid of only one, which would it be? The deadend choices. I don't know. The truth is that they are both debilitating. And are they related? Would getting rid of one help alleviate the other somehow? I wish that Drs knew. They don't.
It's interesting because looking back, I think that I have always suffered from episodic migraines. Maybe a few bad ones a year, I don't know for sure. But I remember in college I had a friend whose mom had chronic migraines. He showed me once the pain diaries she had to fill out, over years, at the instruction of her Drs. And I remember thinking how truly awful that must be. I couldn't imagine having to endure that. Ha. And here I am. But I remember back then getting really bad headaches. I had a really bad episode on my mission that lasted probably a week or more. And I remember getting a few really bad ones as a child, and lying in a dark room waiting for it to subside. And early in our marriage I remember times with bad ones. Like after Zac made homemade cooked salsa. It was tasty but it knocked me out with a headache for the rest of the day (onions are a known migraine trigger). I think now that I have always suffered from some migraines.
Anyway. This pain did not start as a typical migraine though, or anything like the migraines I had experienced in the past. The first incident was terrible searing eye pain in my left eye, that I thought was some sort of terrible headache. But it was so bad, it kept me up all night and nothing helped and I almost woke up my mom to take me to the ER (I was on a trip with my mom and sisters in VA). It was scary to me.
Then a few months later was when the jaw and ear pain started, also on the left side. I thought there must be something going on with either my teeth, radiating into my ear, or my ear itself. It didn't turn out to be either of those. That lasted a couple months and then seemed to go away. Then a couple months later it came back as left eye pain, and into my cheek, plus my ear and jaw. This is when it never went away. And then sometime after that is when I started getting head pain on the right side of my head, the same spot every time, so I began identifying those as migraines.
And my Drs kept trying to treat my pain as migraine, so I was trying a bunch of meds but I can't remember if I was expecting to help all of my pain, or just the actual migraine one. I don't even know. I can't remember. I don't know if treating them as separate would have helped or not.
So, this is just more babbling. I've got the left eye pain, and the right side migraine going on right now. Plus facial pain. I hate it.
I think I need to find a Dr, just because I start to feel desperate for relief again sometimes - and I guess thinking through this like this helps me clarify what kind of Dr I might even need to look for. Sort of.
And then there was this, that I saw on another blog and thought it was fitting.:)
(maybe I should apologize for all the posts about my pain? It's sort of consuming. And as I've been on sort of a roll with getting some posts out finally, I am finding that I have a lot of posts that have gotten backlogged in my brain. Trying to clear out some brain space. So you're getting some brain dumping. Enjoy!) ;)