health update

[rushthatspeaks]

So I had a scan, to see what on earth has been going on with my sinuses since September that has been so disabling, and the answer is... nothing. It's not my sinuses.

It turns out that my temporomandibular joint syndrome, i.e. grinding my teeth in my sleep, clenching my jaw, and so on, has gotten so bad that the nerve tissue has become inflamed, I've lost the voluntary or involuntary ability to relax those muscles, and the damage is manifesting as migraine. I thought it was my sinuses because of the referred pain-- my jaws hurt far too much for me to feel all of, or even most of, the pain as coming from that area. Also, I've had TMJ for at least fifteen years, it's a known issue, but it's certainly never been anywhere near this bad, so the current hypothesis is that this bout was set off by a sinus infection back in the fall which did, in fact, go away with antibiotics. Then the whole thing just never calmed down again and I've been experiencing it as sinus pain partly because initially there was genuine sinus pain.

What I'm saying here is that apparently I have literally had one migraine, at a level just below producing visual effects, but which does cause nausea and vertigo and light-sensitivity and noise-sensitivity and all that jazz, for the past six consecutive months.

No wonder I've been so exhausted, and no wonder this has been so disabling.

The interesting thing is that asking somebody to look into possible migraine issues had been something I was already planning to do, because three times this calendar year my headache spiked into something with visual effects, which is not really something that had previously been happening. Before 2016, I'd had things I could identify as migraine two or three times in my whole life, separated by stretches of years. But this went on my medical to-do list below 'sort out my sinuses', because apparently non-visual migraines are something I find completely indistinguishable in sensation from a really terrible sinus infection which is failing to drain.

In addition, I'm used to discounting things like light-sensitivity, noise-sensitivity, and temperature-sensitivity as clinically significant symptoms, because I had meningitis as a child and the aftereffects have faded slowly over decades. So when people ask me, do you have a headache or does x part of your head hurt, it's like, do you mean discounting or including the headache I have had since 1992? I spent multiple years as an adolescent using a five-watt bulb in my bedroom to read by because it was the greatest amount of light I could tolerate, so it never surprises me when that comes back every so often? It occurs to me now that while the direct meningitis aftereffects were definitely not migraine-- there was a very specific flavor of headache associated with that, and this now is quite a different feeling-- when the whole thing got to the point of just being a vague undercurrent of pain in the background it could easily have switched over into low-grade migraines literally years ago and I would never have been able to tell. Maybe it did, who knows.

The great thing here is that I was told repeatedly by several different types of doctor that there was nothing that could be done for the post-meningitis and it would have to go away on its own, but there is a chance that they can do something about the migraine, especially since the proximate cause is so clearly my jaws. So I am going to see a neurologist, and a dentist, and they will coordinate with one another, and in the meantime I have been told to stop chewing anything and to put hot compresses on my jaws at night, and in just a couple of days of doing that I have seen decided, though not huge, improvements. I think there's a limit to how far compresses &c. can take me, but I am starting to feel a bit better.

So, in general, optimistic.

Comments

[redbird]

I am glad they have identified a treatable problem, and that you are starting to feel better.

[snarp]

Glad you've got a potential solution!

[rosefox]

Hooray for definitive diagnoses of treatable things!

[starlady]

Very glad to hear that you've got a diagnosis and avenues for treatment. And at least some temporary relief.

[yhlee]

Glad they've identified the problem, and good luck with treatment.

[kate_nepveu]

Eesh. I mean, yay, treatable thing, but six months of migraine!

(My jaw doctor (not a dentist, a specialist in orofacial pain) is very good and while obviously he's out here in Albany, if you want other opinions, someone who's real good at nightguards, etc., let me know & I'll see if he can recommend anyone in your area.)

[heavenscalyx]

Having once had a three-month-long migraine (neck tension + grad school + bruxism + abusive relationship) you have ALL my sympathy! And I hope that the treatments work and you get some relief very soon.

[akycha]

Good heavens. A migraine so long that you were discounting the pain? That is AWFUL. So glad that you are getting it diagnosed and treated now.

[thistleingrey]

Glad that there are reasonable actions to take!

[loligo]

I'm so happy that you have an answer!

[genarti]

Oh sweet heavens. I'm so, so sorry you've had a migraine for six months and counting. But huzzah for a diagnosis of something treatable!

[nineweaving.livejournal.com]

Thank heavens for a rational diagnosis and a treatment! I so hope you go on feeling increasingly better.

Nine

[ckd]

Hooray for a useful and actionable diagnosis, especially since you are getting some relief already with just home care....

[shewhomust.livejournal.com]

Hooray for diagnosis! And ptogress, however limited.

It is weird how hard it is to tell where a pain in your head is coming from: I dislocated my jaw a couple of summers back, and my dentist diagnosed it by elimination, while I burbled about 'this tooth here' and 'headaches up a line of tension from the back of my neck' ...

Also, yes, answering diagnostic questions on a scale of 'normal for me'.

[ethelmay.livejournal.com]

Yeah. I had a nagging toothache recently that basically felt as if someone was pulling with pliers on all my upper teeth at once. It turned out to be a sinus infection and cleared up with antibiotics.

[mrissa.livejournal.com]

Oh my golly migraines. And the kind with pain in them at that, not just the weird aura kind. There are twenty million things they can try! You never think you'll be saying, oh good, migraines, but! oh good, something known, with constant new research, and twenty million things they can already try!

[tournevis.livejournal.com]

Damn meat! I know migraines, they suck and are always confusing things. I too never quite know wherefrom they come.

As for jaw, I am happy to know that things are getting a little better. My father-in-law, at the very end of his life, got TMJ so bad that he had muscle relaxant injections directly in the muscle to get it solved. You are light years from there, of course, but let me reiterate what your doctors are saying: that there are multiple treatment options that go from simple and mild to atomic and everything in between for TMJ. Now that you and they know, there are options.

[rushthatspeaks.livejournal.com]

We're actually talking about the muscle relaxant injections, and at this point I am like, if it would work bring it the hell on.

[tournevis.livejournal.com]

If it's discussed than, yeah, bring it on! Do what works!

[nancylebov.livejournal.com]

I'm really glad you've got a diagnosis that makes sense and a treatment team.

[gallian.livejournal.com]

Yay progress.

So glad you are getting it untangled. That is always the hardest part in my experience.

May your health continue to improve!

[moon-custafer.livejournal.com]

Cheering the diagnosis.

Also, finding it interesting (if horrible) that meningitis can have those kind of after-effects. The only person I knew prior to this with post-meningitis issues had rather severe ones (partial paralysis) -- I don't know if she was light-sensitive as well.

[rushthatspeaks.livejournal.com]

For some reason they don't talk about aftereffects when you present with meningitis, even though everyone I've met or heard of who has had it has gotten significant and long-lasting issues afterwards. Maybe because it's so idiosyncratic-- like, I hadn't heard of paralysis before; I have the light/sound/temperature issues, a headache, and what I am told is detectable inflammation at the back of my head even lo these years later; my cousin-in-law lost about two inches of her expected height because of the timing of the disease in her childhood and also has substantial back pain. These effects just seem completely unrelated to one another. I do think they should tell people that they are likely to have later problems, though, and that they should expect those problems to be serious and should probably maintain a relationship with a neurologist. Because looking at my life and my cousin-in-law's, we would both have done much better if we had always had neurologists.

[oracne.livejournal.com]

Oww oww oww. But hooray for some relief.

[amaebi.livejournal.com]

I'm glad you're feeling a bit better-- and may you indeed find a path to getting over more obstacles!

[ashnistrike.livejournal.com]

I'm sorry you've had to deal with this, but glad that you've got a diagnosis and a course of action! Treatable diagnoses are an underrated blessing.

[batdina.livejournal.com]

here's hoping rational diagnosis leads to reasonable resolution. migraines are no fun at all.

[kalmn.livejournal.com]

Oy vey. I'm glad for a diagnosis!

[dancing-crow.livejournal.com]

I'm just adding sympathy for six months of migraine, because I've had a week of one and it bites, and I cannot imagine having one forever... Also Mriss is correct that they are working on finding things for migraines, and there are many things that might work for you.

[weirdquark]

Wow. No wonder indeed.

I'm glad that things are noticeably better, and also that you have a diagnosis and treatment plan.

[midofayed.livejournal.com]

Thanks for sharing