This is me when I'm not doing the stuff for my regular blog. That means not necessarily as careful, not necessarily as able to do things, lots of things could be different than usual. I don't do trigger warnings, and I have genuine well thought out reasons that aren't just some kind of callous BS.
Okay so more about this migraine gastroparesis thing.
There’s a possibility that the nausea and vomiting experienced during migraines, may be due to a temporary gastroparesis. It comes on during the migraine attack, then it goes away again. So for the duration of the migraine, the stomach empties more slowly, and that causes all manner of stomach upset.
Then there’s this other thing. It’s totally unrelated. It’s called chronic gastroparesis. Your stomach is slowed down all the time. Maybe sometimes more than others, but it never goes at a normal speed. It ranges from mild to severe and has a wide range of causes. Migraines are not one of them.
I have gastroparesis, and other motility problems. Not only does my stomach go slow, so does my esophagus, my large intestine, and quite probably my small intestine. It has been getting worse over a period of longer than ten years at minimum. It is probably related to a neuromuscular condition inherited from my mother.
It has been chronic and progressive. Over time, I’ve lost the ability to eat solid foods, and finally lost the ability to eat at all. The most I can manage is a few sips of ginger ale, and not always. Sometimes just the amount of bile and stomach acid building up in my stomach without draining properly, is enough to cause nausea and vomiting. This has resulted in gas which has resulted in stomach contents going up my esophagus which has resulted in terrible recurring aspiration pneumonia. I also have lost the ability to maintain even a liquid diet enough to get adequate nutrition. I now use a GJ feeding tube to avoid both of those problems, and for now it’s successful.
The only similarity between what I’m going through now, and what I used to go through temporarily during migraines, is a slow stomach. That’s all. Having a migraine and having your stomach slow down for the duration, is not the same as having a constant, chronic, longstanding, progressive condition that has threatened your life.
A friend just said it’s like comparing a cold to tuberculosis because they both involve coughing.
Yet that’s exactly what my neurologist has done. He’s seen the word gastroparesis used to describe the stomach slowing during migraines. And that may be an accurate word. But it is not the same as chronic progressive gastroparesis. It doesn’t have the same causes. And chronic progressive gastroparesis sure as hell doesn’t come from migraines.
Back to the cold and tuberculosis comparison. Both involve coughing.
So he’s doing the equivalent of saying “tuberculosis is caused by colds, they both have coughing”.
What disturbs me about this is that there are plenty of children who could see the difference between a temporary thing caused by a migraine, and a permanent progressive condition with a variety of other neurological causes. And this guy refuses to grasp the difference. I can’t figure out what is wrong with him. I mean he got through med school, and yet he’s focusing on keywords and not grasping the huge differences.
I’m pretty sure he thinks my muscle weakness is actually just fatigue brought on by constant migraines. I do have fatigue, probably not caused by migraines.
I also have specific muscle weakness. Both. It’s not hard to understand either. He told me with this air of total certainty, that the pyridostigmine wouldn’t work, and then it has worked. I mean I knew he was probably wrong, but when someone in authority acts that certain of something, it brings me up short. But now I keep looking at the conclusions he’s leaped to and it’s a serious WTF moment.
Especially the thing about how gastroparesis is really just caused by migraines. Migraines cause very temporary gastroparesis. That’s not the same as gastroparesis (the chronic disease) is caused by migraines. He told me to see a colleague of his who is very interested in studying gastroparesis. I am thinking I ought to stay the hell away from him. Because if this guy looks up to him, he can’t be that good. Ugh. He only sees what he wants to see.
To my neurologist, everything is a migraine.
I’m pretty sure if I sprained my ankle, he’d find a way to call it a migraine.
As far as he concerned, not only are my normal migraine symptoms migraines.
But so is the nerve problem in my neck. Even though it acts like a nerve problem and has some complicated diagnostic term I don’t understand attached to it.
And so is the trigeminal neuralgia.
And so is the gastroparesis. Gastroparesis. He actually told me that gastroparesis is a fucking migraine. Mind you, gastroparesis can apparently, they think, occur during migraines. But my gastroparesis is constant, and progressive, and totally unrelated to my migraine symptoms, while seeming very related to the neuromuscular problems that run in my family.
So the neuromuscular problems my family has, those don’t exist, can’t be that, I couldn’t, you know, have the same things my mother has, even though we have roughly the same symptoms. Because those are all migraines. Or something.
He’s also given me false information about my own symptoms. “You don’t experience your muscles weakening with use, you only experience general fatigue.” Actually no I experience both. But he wouldn’t know, would he? Because it’s not like every time I experience my body doing something, I report it to him. I only rarely have appointments with him, and they’re short, and I only discuss migraines. And other things that he swears are migraine related no matter whether they are or not.
As far as he’s concerned, any symptom I have? Migraine.
I understand that, in theory, migraines involve a lot more than headaches. And that they can encompass a really really wide variety of symptoms. But that doesn’t mean that every time I have a symptom you can call it a migraine.
It’s like… Yes migraines can cause neck pain. But just because a person has both migraines and neck pain, doesn’t mean the neck pain is related to the migraines. I have a lot of pain from my middle to upper back and neck. It seems related to the back pain far more than it’s related to the migraines. And the neck pain seems related to a specific nerve. My regular doctor has said it might be related to hypermobility syndrome, or some other possibilities. Not migraine. FFS.
But it doesn’t matter what I have, all of it is migraine. Because when all you have is a hammer, everything is a nail. But I’m really sick of dealing with things he can see as superficially similar, and then having him make those connections to migraine that don’t really exist. Just because a symptom has a superficial similarity to a migraine symptom doesn’t make it a migraine symptom. And just because people may get TEMPORARY gastroparesis during migraines, doesn’t mean that long term, severe, progressive, scary-level gastroparesis in a migraineur is caused by the migraines. Especially when the migraines and the gastroparesis seem to have absolutely no connection to each other, and autonomic dysfunction runs in the frigging family.
I don’t know how I’m going to approach him about this though. I suppose I’ll just have to be blunt and say it. Because it’s pretty ridiculous. And I can’t stand the knowing tone in his voice when he says he’s pretty sure I don’t have this or that thing… Because if I had this or that thing, it wouldn’t be a migraine, and he’s so damn sure it’s a migraine that it makes him get that know-it-all tone.
Another thing he got that tone about? He was certain I wouldn’t respond to pyridostigmine, because it couldn’t be neuromuscular problems, etc. But now that I’m on it, I can walk around the house without falling. Haven’t been able to do that in years. I walk more than before, because I have to get my butt pills from the fridge. And yet I never fall. He was certain it wouldn’t work because if it worked it would suggest I’d actually inherited those neuromuscular problems my mom has. Except it does work. Hah.
EVEN WORSE TUMBLR — IMPORTANT WARNING too
The sponsored post I just saw on my dash. That went there involuntarily.
Was an animated GIF showing sparks flying and flashing all over the place.
Which was not tagged with any kind of warning.
So basically it’s now dangerous for any photosensitive person (epileptic, migraine, whatever) to look anywhere on their dash because there’s no way I know to turn off these damn sponsored posts from randomly turning up on your dashboard.
I’m really pissed.
My neurologist’s waiting room carpet looks exactly like one of my migraine auras but not as shimmery.
“Oh you’re getting migraines? I’ll shut up. My husband gets migraines and I know you can get sensitive to sound.”
[Chats ceaselessly and pointlessly about anything and everything for 20 minutes of bed bath.]
Seriously even when my migraines aren’t that bad I often end up with one before this particular woman leaves.
situation: you do not know if a gif is abrupt or strobing enough to possibly trigger a seizure in someone. your options (and the consequences of them) are as follows:
- tag it
- just ignore it and figure it’s all fine
the consequences of option 1:
- someone may potentially miss a nice gif. oh well, it’s not that big of a deal
the consequences of option 2:
- YOU COULD GIVE SOMEONE A GODDAMN SEIZURE
it is always, always better to err on the side of caution with this, folks. it really is a lot nicer to be a little overcautious rather than not cautious enough.
And this is why I tag all animated GIFs with epilepsy warning and seizure warning.
Especially because I’ve found even when the GIF itself isn’t flashing, often in the course of loading onto my screen it will do weird flashy things.
So I’ve always figured missing a GIF is way way way better than having a seizure.
Especially given I’m epileptic myself and know that even a mild seizure can fuck you up all week, and a severe one can kill you.
And since I have severe migraines (think I have migraines every single day ever) that can be triggered by the same flashy stuff that triggers seizures for some people. And for some people a migraine is a rare but horrible event. Which is bad enough.
For me, they’re something that I constantly have to modify my entire environment around, to keep the severity level under 5 or 6 on a 1-to-10 scale, every single day. And if they become too intense, they can interact with other conditions I have, to do little things like induce severe dehydration. Or make me too weak to get to the bathroom. Or give me weeks of being nauseated every time I see any light st all, despite very little pain.
And if I have one bad enough one, I can get stuck in a loop where I have more and more. Which can leave me with weeks and weeks of not getting really important stuff done because whenever someone is here to help me do it, I’m curled up in a ball under a pile of blankets. Despite having learned to more or less function through migraines that would put a lot of people in that state.
And seizures can put people into that exact same sort of position. (Not to mention seizures can trigger migraines and migraines can trigger seizures.) And both seizures and migraines can lead to the loss of abilities a person normally has, in a huge range of areas, both before, during, and after, for long periods of time. Your flashy GIF may leave someone unable to talk, understand speech, move in certain ways, think straight, or plenty of other things. Which in addition to screwing up your day, can lead to inability to do your job, which if it happens too often can lead to losing your job, and I shouldn’t have to tell you what that means in this economy.
So putting epilepsy warning on things that flash, and anything you’re not sure about, is essential. And not just for people with epilepsy. People with any condition that’s sensitive to flashing light benefit from this. And the consequences of not doing so can range from completely fucking up someone’s day, to death. There’s a reason that knowingly exposing epileptic people to flashing lights has been prosecuted in some places as assault with a deadly weapon. So don’t.
And don’t tell us to just stay off the Internet then. I’m unable to speak, and I live pretty much my entire life in bed right now due to various physical conditions. (I get up to go to the bathroom, and even that’s often pushing it. When I go out, it’s in a wheelchair that tilts me back. And that’s mostly to medical appointments.) The Internet is literally my entire social life, I can’t just call people on the phone or something. I’m not asking anyone to feel sorry for me, just don’t suggest that the Internet is just a luxury I should do without.
It’s not very hard, especially for a nondisabled person, to tag with seizure warning, epilepsy warning, or both. And if it is too hard for you? Just don’t post the animated GIF in question, until it’s easy for you to tag it again. That’s even easier than tagging it. And if you’re not sure, tag it. That’s what I do, and I haven’t heard any complaints.
This just figures.
I went to sleep with a bad migraine. Dreamed entirely about posting on tumblr and my blog. Still too much of a migraine to even comment on that. But just…wow. Signing off to go and try to sleep again. So glad I didn’t go to the dentist today, migraine would be even worse. Bleh.
OK, I’ve attempted to explain this weird visual thing that happens to me sometimes in the presence of bright light to a few people before. But it only just occurred to me now that I could actually make a picture approximating it. The photo contents aren’t important (it’s just a random picture of my back yard on a bright sunny day) but I’m really curious as to whether the “stuff” at the top of the screen looks familiar to anyone.
For a long time I didn’t even realize it might be a thing and for all I know, it’s a fairly normal response to very bright light. But a friend suggested, last time I tried describing it, that it could be an ocular migraine or something like that. The simulated image I’ve got posted here isn’t *perfect* but it gets at the idea pretty well: basically it’s like this field of grayish-whitish mottled stuff in my upper field of vision. The most reliable way to invoke it is to sit somewhere (like in the front seat of a car) where I can see the sky, and then move my eyeballs slightly down or up.
Mind you, as far as I know I’ve only had one actual migraine involving a headache (in college once, and in that case I was sensitive to ALL lights and nauseous for a whole day). But this ocular weirdness happens pretty much whenever I’m outside in the sun or sometimes even indoors if there are really bright fluorescents. Oh and it’s NOT the afterimage thing you get from staring at a point source of light, it’s fainter than that, doesn’t entirely obscure the visual field, and doesn’t change colors. It stays grayish, and sometimes looks like it’s “zooming” over my head.
EDIT: Forgot originally to also note that I’m sure this isn’t “floaters”, either. I know what those are and what they look like and this is totally different. Floaters are a lot less regular in shape and tend to sort of “drift” or “swim” across one’s field of vision.
I didn’t even see the text and thought ocular migraine. You don’t need to ever have a headache to get them, just like you don’t need to have tonic clinic seizures to have epilepsy. My father has never had a migraine, except possibly the headaches he got with this stroke. He gets ocular migraines all the time. So does my mom. Me and Jeremy both get headaches. And I get ocular ones too. And I’m the winner of chronic daily headache, which is basically some form of migraine headache every day. Because I just have to win the genetic prize every time in this family. (Seriously I seem to usually get a severe form of whatever runs in the family.)
So if my dad can go seventy years without a migraine headache and still get ocular migraines, you can definitely get them especially if you really have had the headaches. I always get ocular migraines in bright sun. Often in the form of weird patterns that show up well looking at the sky, but also I see them anywhere of course. And I have a tentative diagnosis of status migraine aura for the rest of my visual crap.
But what is in that picture is so very migrainey I could recognize it without the text. You don’t need any other symptoms with it to get it. In my family we usually feel some amount of cognitive problems. Ranging from barely perceptible, to so severe my parents are often unable to drive and even if they’re on a highway they have to find a way to pull over until it’s gone. Because they don’t have the skill needed to drive safely. Of course neither you or me could drive safely no matter what. But you get the idea. But the ocular migraine can come with every single normal migraine symptom but the headache, or it can come with nothing but the visual stuff. And everything in between.
I guess the one thing good about coming from a family of migraineurs is I can recognize things like this anywhere.
How did this happen?
I thought I had a bad migraine. Now I’m not sure. Can’t remember. But now it’s turned into one of those nightmarish nights. They happen once every few weeks or so. Where I end up curled up in a ball, sweating heavily, and periodically having saliva come up as if I’ll puke, then I run to the bathroom with a barf bucket and it all comes out the other end instead — if I’m lucky. Only to repeat all night long.
On rare occasions, this sequence ends in puking a lot. On rarer occasions, I end up in the ER and they find out I have a blockage. I really hope it’s not that. Everything in my digestive system seems to be on fire.
Sorry, I’ve tried not to be especially graphic but it’s impossible to describe these nights without mentioning puke or poop.
I’m feeling better overall.
Although my phlegm color is getting worse. My DPA says I can probably wait till my doctor appointment on Monday or Tuesday but that they should almost definitely put me on antibiotics.
(To be clear: Antibiotics don’t work on colds. I need them because I appear to be getting a lung infection and that’s bad and hard to fight off if you have bronchiectasis.)
I have two kinds of headache right now. Bad ones. (Cough headache and migraine.) But those are still better than last night, when I had a sinus headache as well as the rest and all three of them terrible. Like I had to quit typing halfway through a video chat because between the headaches and cold my energy level was not there at all.
Oh and the bathroom stuff resolved too. That was the turning point in feeling much better, that and the equivalent in my sinuses (passing something disgusting that had been clogging them), which happened at the same time. I still feel pretty lousy but it’s nothing like yesterday. (When I can say I’m feeling great when I have two bad headaches it means something.)
Talking to two friends in a row who get worried when I get sick has been the final straw in deciding I’m not doing conferences anymore except under exceptional circumstances that I can’t really foresee. Even when I don’t get sick I run myself down too much even at the best of times. And doctors have implicated the running myself down in terms of what infections I get after. So no more of this.