So yesterday I decided to do a game of “What is this and am I dying?” on instagram:
(if you can’t see it here just click on “view on instagram”.)
As always, the comments did not disappoint and I love all of you. Particularly the people who pointed out that it could be old cocaine or poison but it was possibly the ashes of a dead person and so I probably just snorted someone’s great aunt and then wondered if that technically makes me a cannibal.
Then I found some tiny marks on all of the pieces and shared how I was feeling:
And then, upsettingly soon after:
Here’s all the stuff I didn’t share because I was too blind and nauseous to give details. So, I don’t think it was cyanide related because the day before I’d felt like I was going to pass out for a minute and lost vision, and then yesterday (before I may have snorted a dead person) I had another episode where there was a disco ball in the corner of my vision but it passed after I had an apple pie at Whataburger so I was like, “Best medicine ever” but then after I inhaled possible anthrax I had another episode and it was much longer and basically was like a staticky electrical storm in my left eye that started moving into my right and eventually I had to tell Victor that I was blind and he was like, “YOU’RE BLIND?” and I was like, “Yeah, but I’m pretty sure it’s an ocular migraine, because I had one about 7 years ago and this felt a little similar but just stronger.” But then Victor was like, “This has happened three times already and we should go to ER” and I was like, “But no, let’s not because then I have to tell them that I may have accidentally snorted old cocaine or dead people” and then he immediately called our doctor because he doesn’t follow me on instagram and thought I must be having a stroke. I explained it to him and our doctor and they were both like, “Go to the hospital. YOU’RE BLIND.”
So I did and after so many tests and xrays and a CT scan that made me yell “I’M PEEING MYSELF” in the middle of it (because the contrast makes you think you’re peeing yourself and this is a normal thing, I guess). I did not pee myself but it was nice to have said something even more mortifying than “I may have inhaled poison or human remains” to a medical professional that day and I’d like to think that the first confession may have at least led to a group of excited doctors throwing out ideas and House MD yelling, “IT’S NOT LUPUS. IT’S NEVER LUPUS.”
Anyway, turns out it was lupus. Wait, no, I mean it was an ocular migraine. Or the beginnings of MS, apparently. I’m leaning toward the first because you don’t really have to do much for ocular migraines and I am too lazy to accept any more diseases in my body. So I’m home and (knock on wood) maybe this has passed.
But the good news is that several people identified what the miniature was! It’s a miniature18th century whale oil snotneus lamp. It’s called a snotneus lamp because the spout drips like a snotty nose (which is why the half-spout is there to catch the whale oil). So now we’ve learned something.
Actually, we learned two things because when my vision started to come back I saw this big sign on my hospital room wall that said “LLAMA!” and I was like, “Hey I can read that! Llama! …..Fuck, maybe I am having a stroke.” But turns out that was the Spanish version of the sign telling patients to call a nurse instead of getting up and I guess “LLAMA!” is Spanish for “CALL!”
Never say this blog isn’t educational.
PS. I just looked it up and the internet says “llama” is also Spanish for “camel/on fire”. One or the other, probably. Not both, one would hope for the camel.
I’ve had a nerve block fory ocular migraines and it’s been a nice relief. I hope this is the last you’ll see one though.
Jenny, glad you’re okay. As a translator, I can tell you that “LLAMA” means the animal (same spelling in English), “you call,” and “flame.” Thanks for the laugh!
Glad it’s just the ocular migraines not something more serious. Coincidentally, I had a pretty bad one yesterday as well.
And as for the Spanish, your first guess is correct: “Llama” would be the command form of the verb “llamar” which is “to call.”
Having had strokes and migraines I can testify they have overlapping sensations. Sorry you had to experience either. But maybe that is the outcome of snorting dead people mixed with cocaine from a whale lamp? I feel like you’re charting new territory with this one.
I grew up with my mom having ocular migraines on the regular, and then didn’t recognize it the first time I encountered it for myself, because for whatever reason the way they present for us can be a little sneaky (that disco ball/staticky electrical storm seemed to creep up on me at first).
I’ve gotten them so sporadically and without any discernible cause so I’ve basically shrugged them off unless they become persistent, or our caffeine treatment stops being effective.
I’ve had ocular migraines since the late 90s, and they range from the sparkly disco ball effect to blocked out spots of vision. I have visual disturbances about once every week or two, but nothing like my first one which left me completely without vision for several hours.
At any rate, I just wanted you to know that I’m living a full life that’s occasionally hard to see through disco lights. I hope yours are as easy to live with!
I’ve had occular migraines for years. If you feel one coming on, take some aspirin, lay down and close your eyes for about 30 minutes. It’s super trippy and bad to have one while you’re driving, because you have psychedelic squirmies in your vision, but if you can lay down and let it pass, you should be ok. I also thought I was having a stroke the first time.
Any time someone I know gets imaging with contrast, I warn them about the peeing yourself thing because the techs are not great at warning you about it. And even when they do it’s such an overwhelming feeling I still think I’m doing it. Can’t imagine it coming as a surprise!
What I really loved on your streams were all of the people saying “Where is Victor?!”
So the good news is that my mom had an episode of MS in her early 50s which never recurred (she’s 79 now). Apparently, if you get it beyond a certain age it’s generally “Acute”, not “Chronic”. So you’ve got that going for you.
I don’t have any comments about the possible cocaine and or dead people, but I can tell you that the contrast in a CT scan does make you feel like you just peed yourself. For some weird reason, it makes your crotch feel all warm for a few moments. Granted, they told me about it in advance so I knew what was going on. It seems like the sort of thing one should mention. You know, in case you have to llama.
I had a CAT scan last month for massive stomach pain and yes, the warm peeing feeling is definitely a thing. Also I was on morphine at the time so whee. They do not know what caused the pain, but I got to lie on a gurney in the ER unit hallway for 5 hours watching everything so that was entertaining, I guess. Then jello. Love jello.
I feel like I need to write a song called “Camel On Fire” now that is really a song in code where I am asking for help with…something. Not sure what yet.
So glad you’re not dying. Feel better soon.
I’ve had an ocular migraine and that’s exactly what it was like. Did they not warn you about the contrast? The only time I’ve had it done they specifically told me I’d feel like I was peeing myself but not to worry because a) I wasn’t actually going to pee myself b) that was a normal feeling 😆
Are you ok? Are you going to be ok?
Anyway for your amusement I would like to add that in Hebrew, Lama means why. Lama lo means why not. There are several words in Hebrew that sound like English words. Examples Me is who, who is he and he is she. First word is Hebrew (phonetically) second word is English. This has been my TED talk.
I feel a bit funny commenting but just in case it might help you-
Your symptoms sound almost exactly like mine. I lost my vision temporarily when I would stand up and when I went outside, I “saw” giant birds flying towards me. It turned out I had extremely high pressure in my both eyes along with a retinal tear – both quite fixable!
So next time I get a UTI and it feels like I’m peeing fire water I can scream LLAMA!
Jenny, you may need to wear some protective gear when you are out exploring. At least a mask? That will keep any dust, mold, whale oil anthrax and remains of dead people out of your airways.. Be well 🙂
Well, my MS gave me ocular migraines, so I hope it isn’t that!
I’ve gotten a handful of ocular migraines in my life and it’s always when I’m at work and let me tell you, the kalidoscope swiggles do not play well with computer monitors. The first one I got, I was alone in the building and was freaking out, thinking I was having a stroke and nobody would find me.
I talked to my eye doctor about them and she said they’re usually caused by 1) too little sleep, 2) too much caffeine, and 3) too much stress.
I usually find a blank spot on the wall to stare at or look out the window for the 20 or so minutes it usually takes for them to pass. Our brains are so weird.
Deleted at request of commenter.
I’ve had ocular migraines. They aren’t fun. Mine were lit up Christmas trees. I freaked out so bad. I called my sister and she explained what they were. Mine were related to a minor heart attack. That was 18 years ago. I haven’t had one since!! Btw, you are awesome!!
I’ve had ocular migraines with auras for years. Apparently, they are not an indication of a stroke and are relatively harmless, except for not being able to see while they’re happening. But my brain says, YOU ARE DYING! every single time. Gotta love that anxiety brain.
Tip: if you start to get that ocular migraine preview aura (for me, a refractive arcing zig zag in the middle, not a disco ball to the side), a big jolt of caffeine can stop it in its tracks. I recommend a repeat of that pie along with the nastiest, biggest coffee you can get.
Another tip: Next to the llama sign, maybe you need to post your own sign that says “I write best-selling humor/memoire books and that colors my medical descriptions. I am not delusional and/or on illicit substances.” Victor should carry one at all times. Maybe have it printed up on little Moo cards to hand out.
Get well soon, and don’t have MS!
I’m glad you’re okay(ish) and didn’t set any camels on fire, but also, I really want you to try the snotneus thing with canola oil or something so I can see how it works.
Llama is, in fact, the verb “call” — but I have never thought about the fact that it is exactly like the Llama the beast. This is what happens when you grow up with Spanish
The first time I experienced heated seats in a car, I didn’t know that my seat was heating up, and I thought that I was peeing my pants and was mortified because I was peeing in my cousin’s fancy new car right in her fancy passenger seat. Granted, no migraines or MS or cocaine or cremains, and I’m sorry about your health scare and uncertainty and concerns, honest I am, but I hope you can snicker at another woman’s imaginary peeing-in-pants situation. (Wait, were you even wearing pants?! Maybe you can’t relate to my story at all and I’ve just bothered you in your time of health crisis just to tell you that I thought I’d peed my pants. In a car, not while getting a scan. I apologize. I remain concerned about you and wish you well regardless, which didn’t have to have pants-peeing brought up at all.)
So glad you’re okay, Jenny. Nobody should have to put up with as many weird-ass symptoms and diseases as you have. I’m sorry you do! You’re an absolutely stellar human being for sharing them all with us and always doing it with a sense of humor. I had ocular migraines when I was pregnant and they are scary and definitely not fun. Love you tons. ❤️
I had an ocular migraine for the first time a few months ago on vacation after going for a hike which also included scaling a mountain. It was super trippy and scary. I made husband drive me to the hospital. They have ran a bunch of tests and were like nope just an ocular migraine and also you are dehydrated. So after an iv of migraine medication and getting fluids I was sent home. But it was scary because when it first started I saw spots and then my dog started to look wavy, and then I couldn’t see anything for a few minutes. I did learn though that the hospital in town where we vacation is really nice and super fast.
Sadly I’ve had many of those pee feeling Ct scans lately so I can relate.
Occular migraines can be absolutely wild. I get what I call kaleidoscope vision. There is a point where I can’t really see, and then eventually it just sort of resolves itself. Terrifying the first time it happens. Hope you are feeling better.
Glad you’re OK! Hope it’s nothing serious. My mom has MS and it’s no picnic. My son deals with the occasional ocular migraine, which sucks, but he mostly just feels like he’s seeing ghosts.
Wow. Wow. I really hope you do not get any more occular migraines. They are not cool.but honestly your write up was lovely and may have saved me because I was having a really bad day and you made my crying turn to laughing. But also why doesn’t Victor follow you on Instagram? Does he know what he is missing? I hope you are feeling all better even if you snorted someone’s ashes.
I had to have a CT last month in the ER. The tech explained about the “feels like you’re peeing yourself” thing, then went on to tell me that no one ever pees themselves, “well, except for the one lady, but she was pretty drunk, so I don’t count her”
I get ocular migraines (in addition to regular ones) and your description is textbook for what happens to me when one comes on. The good news is they don’t hurt. The bad news is the first few times they are scary, then they just get annoying. I will sometimes get a bunch over a few days, then not get any for months. Weirdly, really bright sunlight will often trigger them (or a bright fluorescent light).
do you feel like you have a hangover today? I *always* have a hangover after a migraine, even if there’s no headache involved. (I also slur my words BIG TIME during the migraine.)
Girl! You gotta stay Ali e, we all love you so much.
Also, mention Ehrlers Danlo syndrome to your doc. When my doc told me I had it so many puzzle pieces fell into place.
That should say healthy
Sorry
I get ocular migraines from time to time but after the first one I know they’re just weird and go away on their own.
But that is not something they cover in college and they really ought to.
I’ve had occular migraines for years without the pesky pain of a regular migraine and then I started getting real painful migraines. I use ice on the back of my neck and give myself multiple brain freezes with home made slushies, smoothies, Margueritas, etc., And that stops them for some reason. Just FYI.
I get ocular migraines and also kaleidoscope vision when I go out into bright sunlight from indoors. I also get a rare left side goes numb migraine that makes it feel like my throat is numb and I have difficulty swallowing. It’s triggered by cold air and cold drinks and my neck and arms or head being in certain positions for too long, like reading or writing or sitting at a desk or while working on a computer.
I also have a vasovagal condition where if I sit or stand for too long without moving around or putting my feet above my heart, I lose my vision and control of my limbs.
It’s like my body wants me to have stroke like symptoms constantly. My neurologist and rheumatologist thought I had MS for the longest time because of all my health issues and other additional symptoms, but so far, they have not come up with a definitive diagnosis. I think I have mixed connective tissue disorder, because I have all of those symptoms, and it’s the best match I have so far.
I totally freak out every time, but I can’t afford to go to the hospital every time it happens, thinking it’s a stroke.
It sucks how our bodies and brains betray some of us.
But you still didn’t figure out what the powder was?
My money is still on the whale booger powder. Glad you are okay!
I, too, have had ocular migraines. Randomly. Usually one every 5-10 years. I had them a lot more often when I was in chemo. Go figure. Disco ball is a perfect description. Thank goodness I never got the headache to go with them, but the first time I had one I freaked out and went to my eye doctor. I thought I was going blind, or had ruptured a vessel in my eye!
So, what did you snort?
I have to have CT scans with contrast dye on a regular basis to monitor my hopefully-all-gone cancer, and I will be forever grateful to the lab tech who, during my first CT scan, said “You are going to feel like you are peeing yourself, but I promise, you are not.”
I call them “blind migraines” and I tend to get them when my lupus is flaring. So sometimes it is lupus? But also I feel like they are one of the (many) overarching autoimmune disease symptoms that accompany so many AI diagnoses.
I have ocular & regular migraines, and have experienced the peeing my pants feeling during a CT. But what was even stranger was when I was being prepped for dental work with sedation. The dentist injected dexmethasone (a steroid) into my IV and said “This might make your nose really itchy for just a minute.” About 15 seconds later I did get really itchy, but it was not my nose. It was, to be polite, my lady parts. I desperately tried to ignore the sensation while wondering if the dentist had said “nose” because it would be awkward to say “lady parts/crotch-ish area”. He was correct that it lasted only a minute, which was a good thing since I was thisclose to blurting out “What the hell did you do to my crotch!?!?” Also, turns out the itchy nether regions reaction is a real thing, at least according to Google. Who knew?
PS You are a true treasure. As a person with a long list of medical mysteries, thank you for all the laughs and for making so many of us feel less alone.
I also have been told I may have MS when going to the ER for migraines. I also one time had my nervous system attack my spine with left my arms temporarily paralyzed and they told me that may be a sign of MS. Luckily I have had no re-occurances in 3 years and LOTS IF MRIs (which have 100% less feeling of peeing yourself and 100% more feeling of claustrophobia) it appears my nervous system was just one time broken.
I really hope you’re feeling better and that nobody haunts you (unless of course you want that, which is totally cool). I was telling my husband your saga while we were waiting in the deli line at the local megamart and the poor woman kept interrupting to ask exactly “how thin” did I want my sandwhich pepperoni and then my husband was “Dear God someone is weirder than you” and also “Things like this are probably why the music teacher thinks you need to find more time to practice.” At which point the person in line behind me snickered and I disappeared into the candy aisle.
I get ocular migraines often and the fractal pattern that takes over my vision is similar to tripping on shrooms and quite entertaining before the migraine pain comes charging in like a demon on speed. Hope these remain rare in your migraine experience since they are freaky as fuck.
Glad you didn’t inhale cyanide/human remains/antique cocaine.
Ok- part of my backstory- migraines since I was 5 and in Kindergarten. I now get ocular migraines (why I do only audiobooks – bcuz I can’t fucking see) pisses me off too btw lol! AND Hemiplegic migraines- that one truly does feel like a stroke. You lose all control in half your body- like fall over and your like a turtle
on its back, super fun🙄
My neuro keeps telling me to go to the ER when it happens, and as soon as I’m out of her earshot, I’m like nope, not going to the damn ER for hours to be told, ya you have a hemiplegic migraine lol Oh and to have the dumb CT and feel like I’m peeing my pants! It’s really and truly a side effect- for those that are wondering about that part. Plus I have enough ‘alphabet soup’ behind my name, from all my autoimmune crapola and chronic crapola. Or should I say Llama? I like that. I’m going with Chronic Llama crapola! I too damn tired for more letters.
Hopefully re:MS this might give you some comfort. Our oldest daughter, but still my baby girl, Kelli, 35, has MS, last year, they changed her diagnosis to the most aggressive form
of MS (primary progressive). We got her diagnosis on Christmas eve 2018😢, rough year that was. Anyway- her first symptom was Occular- it’s called Optic Neuritis. Generally w/MS the Optic Neuritis symptoms, are SUPER painful, not just our crazy auras that we get and say hey I’m blind, because of our “acid trip” ocular migraines. Optic Neuritis, hits the trigeminal nerve near your temple/cheek area. They call the trigeminal nerve the “suicide nerve” as it’s the MOST painful nerve pain, and one they can do very little for. Also, w/Optic Neuritis, it really hurts to move your eyes to the side or up and down. Keeping the eyeballs forward, is the only thing she can do to try not and have as much pain, but it doesn’t help a lot. We were in the ER and she needed an IV, and couldn’t get one in. They had to flip her upside down in her hospital bed, to give her an IV in her neck vein, it was the only one they could access quickly. Now that was super crazy- the doc, she used to be in the military- she did like this Kungfu move with the bed, flipped kelli upside down and had her IV in, in seconds and back upright. I’m telling you, that doc was a kungfu ninja! Now I’m going to have that damn song in my head. Everybody was kungfu fighting ….🎤🎵🎶 you’re welcome. Now you can sing it too. 😁 Sending you lots of love hugs and hopefully no dead aunt dust. 🤣
I’m glad you are feeling better, Jenny.
My one and only ocular migraine came while I was playing the organ at my church service. Needless to say, I think the music became a little “wonky”, but, oh well!
I just listened to your 3 books (in a row!) in a row on Audible two months ago… I could here you saying “Victor, I don’t need this right now” when he reacted to you saying it was the third time it happened”. Glad you didn’t die. That would definitely be a setback.
I’m so glad you’re OK! Ocular migraines are scary. Mine are blessedly unusual: I get the spinny disco ball and big dark spots, then the shimmer gets wider and wider until it disappears. Then that’s it. No actual headache, which is weird because I’m prone to migraines generally. But I also have a high pain tolerance, so who knows. I had an ovary and tube rupture – which my doc says is “as painful as a heart attack,” and I somehow missed it completely. So maybe I have a headache and it just doesn’t register?
I had weird eye stuff over the weekend too. Diagnosed with posterior vitreous detachment, which means the gel in my eyeball came detached from the retina. “A natural, normal part of aging.” Sheesh. Big floater and flashes of light from the side. They say my brain will get used to them over time. That, and the knee pain from the crappy weather, and I feel like an old aunt whose ashes are in your teapot! Being in your 50s is no joke.
I’m disappointed to learn that it was a whale oil lamp. I was hoping for a Genie and three wishes (Haley is old enough to have their own wishes! Or at least not all three!)
However, I’ll give up on the Genie as long as you’re all right.
Stay well! Stay safe!
First time I had an ocular migraine I was in the 6th grade in class silently freakin out with the teacher calls on me to read and answer the question. I didn’t know what to do so I was honest and said I can’t see the question I’ve gone completely blind. The teach doesn’t say anything and just calls on another kid. Now I think I’m in a dream and or this a weird hallucination. My friends are like wtf and I’m trying to explain to them I’m not joking everything is black. One of my friends had to walk me to my next class and sit me down at my desk. Thankfully I was able to see by my next class. Thankfully this has only happened a hand full of times in my life and I handle it the same way as my teacher did I pretend like I didn’t notice till it goes away and that it’s normal to just go blind for a while
I used to have ocular migraines pretty often, but in the last 10 or more years, I’ve had only one. One thing I read and noticed about them was that they tended to occur during the time just after a bunch of stress. I think they’re called classic migraines (and ones with headache are called common migraines). Or vice-versa. Anyway, I guess the key to avoiding them is just to never have any stress — or maybe just to never let the stress stop, I guess.
My mom had an ocular migraine once and her pupils became OVALS 😱 I was certain she was having a stroke! Feel better soon!
As a person who has accidentally inhaled cremains, and a person with ocular migraines, I can say the experience is totally different. Inhaling cremains is pretty much just causes sneezing and horror.
I am going to spend the rest of the afternoon figuring out the perfect way to say “snotneus”. So far, the bad eastern European accent is winning.
Take care, Jenny! While your community is pretty damn funny, you’re still irreplaceable. <3
Well shit. At least shit was interesting and not boring, Jenny. Glad you didn’t die and/or accidentally snort cocaine/the ashes of a dead person.
“Wait, no, I mean it was an ocular migraine. Or the beginnings of MS, apparently. I’m leaning toward the first because you don’t really have to do much for ocular migraines and I am too lazy to accept any more diseases in my body.”
Go for the ocular migraine. It’s not fun, but it will eventually pass. MS just keeps sucking harder and harder and harder and never goes away. You really, really don’t want it.
Jesus wept. That same thing happened to me this weekend. Minus the dead aunt. Debated ER but decided ocular migraine too tho MS came up in my research for pendular nystagmus which I surely had first. We can be MS buddies but I too reject the premise.
I just love to be reminded that mine is not the only brain that works this way.
Camels On Fire—new band name.
Felt that way with CT scans too! (I’ve had like 4 at this point). But it didn’t involve a camel that was possibly on fire.
“So glad you’re not dying. Feel better soon.”
This has to be the classic response to anything on this blog.
I am going to use it everywhere!
I’m not a doctor but as an MS patient with visual flares and (also) ocular migraines, that sounds like the former, not the latter (MS flares don’t go away that quickly). I’m also betting on dead great aunts ashes. Glad you’re feeling better!
Between Christmas and New Year my body decided to celebrate by creating a kidney stone. That thing had me puking and puking and puking. I was dry heaving so hard I peed myself and then had to lay down in front of the toilet because I was so weak. After I woke up, I now have a spot that sits right in the middle of one eye. I thought I was going blind too. The eye doctor I went to said it’s not permanent, it’s just debris that got stirred up while I was puking so hard. It will probably go away on its own. Still waiting…
My first thought when I saw the “disco ball” part was “MIGRAINE!” I have had those. They usually left me barfing and ready to die. I’m glad it wasn’t such a horrible experience!
Sorry to hear about your inhalation of a dead person. But it would have been worse if it had been a LIVE person.
LOL!!! Oh My God…Victor…what that man goes thru, kills me. So glad it’s not Lupus & that you’re doing better. And hey, whatever happens, at least you’ll always have your sense of humor.
You have the best followers in the world. As you know very old taxidermy is filled with arsenic so could be a possibility. Love you.
Ocular migraines here too. They start out as a tiny bright spot in one eye. Then the fun happens when the spot expands into a black hole with sparkly shimmers around it, swallowing my entire vision. Not a ton of fun while driving though, and especially not fun trying to read a special event story time book to 200 kids and adults when suddenly you can only see half the page and you’re bobbing your head back and forth to make out the words and hoping no one notices as you slowly go blind on stage dressed like Elsa.
When I had a saddle embolism (a big blood clot that goes over your heart and lungs) they did a CT and even though they warned me that it’d feel like I was peeing myself I was not ready for how MUCH it felt like I was peeing myself. Hope your doctor makes you do a follow-up visit to see WTF is going on with you.
I’ve had an ocular migraine and it is bizarre. It was like a semi circle of blue and white diamonds at the edge of my vision. It kinda started out one size and changed as it dissipated. Very scary the first time. Had it checked out with the optimologist. Less scary the second time only because I could put a name to it. Hasn’t happened again. Pretty lights though.
Good grief! Your life! I get ocular migraines. My first symptom that something is up is that my vision goes blurry. But not blurry, like your eyes are tired. Blurry like the bottom half of your vision is all wavy and distorted. Unfortunately, if I am not able to get ahead of it with drugs, water, and quiet, then I am down for the count. I have to sleep it off. Which means that if it happens at work and I can’t get it under control, then somehow I have to drive home blind. Usually, if I can, I will just head home as soon as my vision goes wonky.
The first time that it happened, I thought that I was having a stroke, because in addition to the vision thing, my left arm went numb! And I had my two toddlers in my car!
Anyway, thankfully you didn’t poison yourself, as far as we know. But, you may be a cannibal if someone did store their great aunt in that piece! Either way, you will always have a story to tell!
We’re all dying. At least your journey is interesting.
I didn’t see anyone else mention this but I have an idea about what the white powder is. Baking soda. I store silver in baking soda to keep it from tarnishing. If this little trinket is silver it may have been coated in baking soda to protect it.
I was kind of thinking onset of MS, Jenny, because that’s how my sister-in-law’s started.
Hey Joyce, my occular migraines are exactly like you described. The jaggedy half circle. It comes on gradually for me, starting out like visual radio static. First time I definitely thought I was having a stroke.
As my endearing ENT once said to me with all the earnest emphasis that his Asperger nature could muster “You don’t have cancer… yet.” His attempt at consoling (and yet also forecasting my eventual doom) still makes me laugh to this day.
So, I say unto you (void of all foreboding tones though unlike my doc) yay no cancer for you!
Brain burps are the SCARIEST experiences ever (I relate to many of you here, lovely tribe and Jenny!) I’ve dealt with all forms of neurological zebra level weirdness, and everyone here has my empathy. You name it, I’ve probably experienced most of it-except the terrifying blindness business symptom with the ocular migraines that you and others get. No thank you!
Also I don’t know about anyone else, but when I had iodine contrast during my last CT scan it burned like freaking MAGMA through my veins.
I kept shouting, “Ahhhhhhh I’m hot!!! It burns!! Ahhh!!!” like I was melting like the Wicked Witch of the West.
Although weirdly the iodine brought me temporary pain relief-wish I could get an iodine drip stat!
I have had a few ocular migraines. The only thing I have found that helps is a quiet dark place to lie down and wait for it to pass. (pain in the butt, generally, but not something deadly. Okay, eye not butt, sheesh! and not really pain except mental pain.) At least of me there was never a blindness episode. So, I did NOT comment about it then.
LOL, I understood that Llama was “call” in Spanish thanks to over 4 years on Duolingo.
I used to get the ocular migraines a lot. They are sneaky and you may not realize there’s a dark spot in your visual field until the sparkly part of it starts. My sparklies would grow, get brighter, and travel across my visual field, usually from left to right. They’d last 30-60 minutes. Pre-retirement they were often followed by a bad migraine headache. If I was at work, I would slam a couple aspirin, head for home (yes, even with only partial vision) and on the way I’d pick up a triple shot latte and a plain hamburger (to help with the nausea and shield my stomach from the caffeine). Once home, I’d find a cool, dark, quiet room, and try to sleep the migraine off. The good news is that after retirement, the migraine headaches stopped, although I do still have the sparklies on rare occasions. Good luck.
Glad you’re feeling better! Please be careful of what you snort! I’m not sure that’s a whale oil holder, it’s really small. I think it held incense. https://www.etsy.com/listing/1067293988/true-art-nouveau-solid-silver-incense
Yes, when I was in 7th grade my notes turned invisible, as if I were writing in invisible ink, although I was using a pencil. I kept looking back at them and they appeared, but then when I wrote, they disappeared. My headache came 7 hours later. Fast forward to my 20s and they came back and yes, it is exactly a disco ball in your peripheral vision!
I had an MRI tech ask me to ‘describe in detail’ the warm feeling I had during the contrast. I never ran out of a place so fast! Coincidentally enough, heading to another one today. Hopefully the creepy guy doesn’t still work there
I wonder if I should be sad for me that I realized it was an occular migraine pretty early in your story. I was once told that, if the visual disturbance is happening in both eyes, it should be checked, so I’m glad you went to the ER. I hope it isn’t MS (or Lupus either for that matter.) Tip of the day: Don’t snort dead people.
I’m very glad to hear you are ok, and not dead!
I also get the migraines. Both types. Usually if I get an ocular I do not get the head pain, but the kaleidoscope always makes me feel like I’m going to. My favorite was when I totally did it to myself by trying to study while running on the treadmill at my gym. Um, I lost my vision so badly I couldn’t see anything. I was desperately trying to get into my locker to get my key tag so I could lie down on the massage beds, but you actually need to see to open those pesky padlocks. The whole time I’m thinking someone is going to think I’m breaking into this locker.
I’ve also gotten regular migraines that made me lose my vision, and speech as well. I totally thought I was dying with the speech one. I was like 6 months pregnant at the time. Because my brain hates me, I also had Bell’s Palsy. That absolutely mimics a stroke. I was maybe 30 at the time and terrified. Lost my vision with that one, but my eye also refused to close. Apparently there’s a nerve that goes through a tunnel and when that nerve gets inflamed it hits the tunnel and BAM! Feels like a stroke. I have RA & Sjögren’s, too. I feel like there’s a correlation there.
I completely adore every single one of your posts, and wish I could help you in real time sometimes. Everything you described before the final sparkly veil sounds like prodrome of an ocular migraine. Rizatriptan has been a game changer for my kiddo, now that they’re recognizing prodrome symptoms – it just makes the migraine stop before it starts.
I had an ocular migraine a few years ago that was accompanied with the regular painful migraine. Migraines have been a big problem for me since I was in my 30’s. I usually have one or the other kind, but never before the incident a few years back. I was admitted to the hospital. I didn’t know you could be admitted for a lousy migraine!
As someone who experiences ocular migraines when stressed (or in pain I don’t recognize, hungry, or who knows), your story is both relatable and educational. And also humor is the best medicine. It’s also a blessing you document your shenanigans because otherwise Victor and your doctor might still be stumped. Lol. Feel better soon!
I used to have occular migraines when I started going through menopause. I’d get the sparkly vision first and then the massive pain once my vision cleared. My doctor suggested doing my cardio workout in the morning as it would balance out the hormones and they would be far less acute if they happened at all. She was right and I only got them when I skipped workouts for 3 or more days in a row.
Glad you are ok! I get migraines and they always start with an aura, like what you described with your vision. Bummer but I’m glad it’s over! Good luck with you whale oil thingy!
Solid name for a lamp but even after internetting , I don’t totally get the design. I’m sorry snorting dead people made you blind-ish. https://possumscatsthingsgnawingatme.wordpress.com/2023/01/20/ive-gone-blind/
I’m certain your doctors are on it, but through a set of completely unrelated circumstances, I came upon this today, and think maybe you should show it to your docs just in case. I don’t typically send people such advice, but it seems important. And from now on, wear one of those painting masks with ventilation while opening mail. haha. https://www.uptodate.com/contents/myelin-oligodendrocyte-glycoprotein-antibody-associated-disease-mogad-clinical-features-and-diagnosis
I recently had Lasix (the diuretic drug, not the eye operation which is Lasic, I believe?) and it makes you feel “warm in the crotch” too. Right after you feel that warmth, you had better get to a toilet quick, or you WILL pee yourself.
I mean… Poison, cocaine, or human remains is one of the age old dilemmas, i suppose.
Really glad it wasn’t any of the above and i hope the migraines stuff off and leave you alone.
So, did you inhale very old whale oil? Sorry that’s my first thought. I have ADHD and it’s nighttime so no more meds. I’m of course very glad you are home and ok. And of course its not MS, one body can only hold so many things, and yours is full.
Seriously, very glad you’re feeling better and can see again.
Whale oil? Eww.
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Can’t really see those marks, but they might be marks for sterling silver or silver plated. The white powder could easily be some oxidized bits of the metal.
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Please consider testing for MS…a friend’s spouse had vision flashes and such years before the actual diagnosis…
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As a longtime migraineur, I have had a few CT scans, at which I was warned about and experienced that peeing sensation. More recently, I had a nerve block to treat a surgical complication in my abdomen, and several days later I got that peeing sensation—which didn’t make sense because nothing had been done to the nerves in that area. But when I finally heard back from my doctor, she said that nerve blocks can trigger other nerves anywhere in the body to test themselves by doing random things. So I was supposed to not worry about this harmless side effect…that happened about twice an hour for a few minutes at a time, for FOUR DAYS. Awesome.
Glad you’re okay! Ocular migraines are indeed weird.