Last year, in March, I had a scintillating scotoma out of nowhere. Lasted about 45 minutes. No headache followed. I have no idea what triggered it.
I just had another one this afternoon. Lasted about 40 minutes. Had an aftermath that was almost like a post-ictal feeling, but no headache.
In addition to these, I've had, every few weeks for last the few months (1) headaches that throb and wake me in the middle of the night and that improve when I sit up (but don't go away); they're the worst pain I've ever experienced; and (2) a sort of occipital neuralgia that starts suddenly at the base of my skull, bores "through" to behind my right eye, then goes away. This one takes my breath away and stops me in what I'm doing. Thing is, I haven't had one of those now in about a week.
Anyone got any insight into headache syndromes? I know a lot of people on this board either have migraines or have been "accused" of having them. Does anyone have aura without migraine or scintillating scotoma without migraine? Once a year?
All I know is, there is some really weird you-know-what going on with my head, and it ain't conversion disorder.
Now, I am definitely no doctor, so I'm in no position to make a diagnosis, but from what I've read this sounds really par-for-the-course for ocular migraines, or the kind that are headache-free.
My dad, mom, brother and I all get migraines, of varying sorts, and the scotoma you describe sounds pretty much exactly like what happens to my dad. Sometimes he gets headaches, but that's pretty infrequent, and usually he just gets an aura - for 30-60 minutes, I think, and about one every 3-6 months. He had this happen for quite a number of years, I think, before the headaches finally showed up. Also, sometimes he gets migraine headaches, WITHOUT an aura - weird, right? Oh, and when it's only an aura for him, he definitely describes feeling pretty weird - he ends up talking kind of slow and strange, and usually goes to bed because he just doesn't feel right.
The occipital neuralgia thing you're describing sounds really familiar to me. Waves of weird pain through the eye? Oy. And yeah, with migraines, the pain can be excruciating. Like, whimper on the floor kind of pain.
So, like I said, I am no doctor! But this sounds like pretty classic migraine experience to me. I'd go to the doctor if you can, check out some meds - because oh my goodness, the prescription stuff actually helps; it is such a relief.
I'm wishing you luck - and I hope they stay away for a while!
I have had both, the aura and no headache and the scintillating scotoma with no headache.
The frequency varies but they spaced out very far apart and it's been at least a year since I've had the scotoma. The caveat though is I'm on meds for migraine prophylaxis so it may be more common than I realize.
The headache itself is the occipital pain with the hot poker feeling from the back of head through my right eye.
Strangely enough, all these headaches were new onset at the age of 47 which is coincidentally the same time all my paresthesias began as well. So, I wonder if the head pain is actually some sort of neuralgia related to the MS.
I do wish yours would stop as I know just how painful they are. If you find a definitive answer let us know.
Had the scintillating scotoma twice: once in 1997, with a moderately bad headache soon afterward, and once again about 15 months ago, again with a headache. In neither case could I say these were anywhere near the worst pain ever, not even the worst head pain.
I have pain behind my eyes that doesn't feel connected to anything. Gabapentin seems to be controlling it, most of the time. None of the migraine meds tried did anything, and after I read the fine print on some & compared that to my history & med list, I switched neuros (even though the last weenie wanted to try several dozen others).
The headaches that have been my worst pain ever are the ones that wake me in the middle of the night with throbbing pain that improves when I elevate my head. I don't get any headache (so far) with the three scintillating scotomas I've had, although I am certainly tired afterward.
I've given birth at home, and those nighttime headaches are a far worse pain than the childbirth.
Tell ya about my kidney experience sometime. Seventeen days straight in the hospital, 23 staples across my back, stones the size of -- well, I don't know; they never told me how big they were, just that they were the biggest they'd ever seen, and in the worst possible spot. Got to know pain pretty well. Knew a woman who'd had 3 kids & 3 kidney stones; she told me she'd rather have 6 more kids than one more kidney stone.
Have you had a head CT? When I had my first "worst pain ever headache" it was 4 am when it awoke me. Finally fell back to sleep until alarm clock went off at 7 am. Laid there not wanting to get up and get 3 kids off to school and was awake and oriented as I watched the clock tick over to 7:15 and I knew I had to get up.
Got up and promptly passed out striking my head and giving my PCP the chance to use his new staple gun for the scalp laceration. The neuro was ticked that they had used 7 staples to close my head (allergic to sutures) as he wanted an MRI. They did a CT scan.
The call back that afternoon was the CT didn't show an aneurysm, tumor or stroke. Aneurysm never entered my mind. What imaging studies have you had recently?
Ren wrote: "Strangely enough, all these headaches were new onset at the age of 47 which is coincidentally the same time all my paresthesias began as well."
Same here, except for me it was age 42, and not headaches but just the ocular migraine (blank spot that developed into a C-shape full of "diamonds in a heat wave," as I've heard it aptly described).
This all hit at the same time that perimenopause came on strong. My timeline went like this in 1999:
June (?) -- bilateral TN (self-diagnosed in retrospect)
July -- sudden hearing loss and big increase in dizziness
August -- jolts in head; nearly back-to-back three-week-long periods
September -- first-ever ocular migraine, recurrence of dizziness, hyperacusis
October -- LOTS of paresthesias, twitching, facial shocks, second ocular migraine
November -- Lhermitte's (unrecognized until later)
March 2000 -- third and last (to date) ocular migraine
Hormone changes can trigger a period of migraines; also thought to sometimes trigger MS attacks, right?
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