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As someone who used to suffer from visual auras (which ranged from a few minutes to 15 minutes at most) due to migraine, a persistent aura which does not go awa

As someone who used to suffer from visual auras (which ranged from a few minutes to 15 minutes at most) due to migraine, a persistent aura which does not go away sounds truly horrible.

culopatin 5y ago
Hey here too. The first time it happened to me I was in high school and my professor thought I was lying when I told her I could no longer see my periphery. I had a dentist appointment after school and I had to take the bus. By the time I got on the bus, I could only see through a tiny window so I had a hard time finding the handles to hold on to. I was lucky and my dentist was working with a massage therapist when I got there and the lady was nice enough to give me a massage where my head meet the neck and that seemed to start undoing the effects. Within an hour my vision started getting better. Over time I started learning the patterns of my migraines and I’ve avoided the auras for 10 years. Biggest impacts for me are staying hydrated, not starving myself and avoiding prolonged sun exposure (as in 3hs under the sun in summer)
- tw04 5y ago
  Same, too much caffeine and being dehydrated are a trigger, too many nights of not enough sleep as well. It's annoying they've gotten more frequent as I've gotten older. The first time it happened a doctor recommended Excedrin (HAH!), fortunately I had already suspected caffeine so I skipped that advice and hammered water and laid in bed for a couple hours instead.
  - culopatin 5y ago
    I avoid acetaminophen altogether. i had a terrible terrible morning because of it. I guess my liver wasn’t doing great which caused a migraine and I added acetaminophen to the mix. 3hs of incapacitating pain followed by 6hs of recovery:m. A wasted day. Ibuprofen or naproxen for me. Caffeine is risky but present in my day to day, I just have to take double the water even if i know I’m just going to pee it out. Any energy drink messes me up BAD
- JKCalhoun 5y ago
  Thank god for the internet. I too would (infrequently still do) lose my periphery. (I called it tunnel-vision when I was a teenager ... close enough.) No one I talked to knew what I was talking about.
- abhijat 5y ago
  Mine started with a very weird feeling that something was off in my vision (usually triggered while working on a screen). I would notice after a while that a tiny portion of my vision was going missing and then the shimmering would begin and spread out. I've also not had auras for several years though I do get headaches still. I had extremely low vitamin b-12 levels and I think the auras disappeared after I took shots for b-12.
- positr0n 5y ago
  Woah is sun exposure a trigger all by itself? I almost always get a headache if I've been outside all day, but I always assumed it was a second order effect like being outside makes it harder to get enough liquids so I was dehydrated. Or heat stroke.
  - culopatin 5y ago
    I think it’s just like what you described. I love the sun and I love being outside, but after a long day out at the beach or racetrack I feel drained and I always have a headache that can end up in migraine easily if I don’t cool off and over hydrate
  - ars 5y ago
    Bright light of the sun can trigger a migraine, at least in me and some other people I know. It's not dehydration, it's the bright light itself. I found shade 5 sunglasses that are essentially lightweight welding glasses they have been amazing. Unlike most sunglasses they are actually dark.
vanderZwan 5y ago
I would lose the right half of my vision, except not like anyone here (without similar experiences) is probably imagining it right now: it was not like my right eye stopped working, no, the part of my brain that processes visual information would deny the existence of the right half of my vision and replace it with a reaction-diffusion lookalike aura. Split precisely down the middle, doesn't matter which eye. Even freakier, if I were to look at someone's face, my eyes would refuse to turn and show me the missing half of said face on the "left" side of my remaining vision. Similarly I could no longer read words or sentences because they were cut off and my eyes refused to do the normal reading saccades. It was then that I first learned that my conscious is only a small part of my mind, and not in direct control of everything. If I would have been stuck with that mode of perception permanently I would have gone crazy.
- coldcode 5y ago
  I know exactly what you describe, I had migraines for many decades; oddly enough now that I am older I still get the aura, but the headache itself is barely a Tylenol. I also had cluster headaches one summer in college; now those are truly the worst pain in the world. Imagine an electric drill going through your head for 15 minutes once a day, then vanishing.
- Apofis 5y ago
  > It was then that I first learned that my conscious is only a small part of my mind, and not in direct control of everything. We're made up of disparate systems that our conscience pilots essentially, even our mental faculties are disparate systems. This can sometimes make it hard to recognize when one of these systems is under-performing or worse-yet failing.
- 555watch 5y ago
  > It was then that I first learned that my conscious is only a small part of my mind, and not in direct control of everything. That's probably the craziest takeaway from these. In my experience, losing half the vision + the middle part was the most often one. However, the craziest attack was when I temporarily lost the control of speech. The mind and thoughts were there, but nothing verbally said made sense when listening to myself. I'm so glad that taking a nap was enough to resolve that...
jtwigg 5y ago
I also suffer these though I've learnt to pick up on them before they happen so I can pull over or step away from the computer. This started when I was a teenager and has gotten better since my mid twenties (30 now). I've only had 2 attacks this year, though they have both been in August. I find taking a nap helps. I don't get a headache but I do eventually lose 99% of my vision.
Daub 5y ago
Some interesting work on the visionary writings of the 12th century Abbess Hildegard of Bingham. Her visions are now being understood as manifestations of migraines. I believe Oliver Saks was the first to understand them in this way. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4103393/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4103393/
SavantIdiot 5y ago
Heya, me too. A few times a year, 30-40 minutes. More frequently as I get older. Are you on anything for them?
- abhijat 5y ago
  Hi, no, right now I'm not on any medication for them. At the time I had them frequently (a few years ago) I was diagnosed with very low vitamin b-12 and given shots for it which seemed to help a lot with the frequency. I also gave up alcohol gradually around the same time and the episodes gradually subsided after that (I had noticed that the migraines were pretty bad after drinking). I do not know if the two were related or not. Hope you get better.
halfmatthalfcat 5y ago
I also get auras but thankfully it's the worst part of my migraine cycle (actual headache is a 3/10). Probably get one a month. I occasionally get pre-drome symptoms a couple days to a week out. It's a minor inconvenience for 30-45 minutes but they seem pretty benign (also verified by a neurologist).
snegu 5y ago
Yes, I had no idea that was possible! I have had a total of 5 silent migraines (aura but no headache) in my life, and each time was terrifying. What's worse is that my current doctor says there's no way to know if my last one was a TIA or migraine (all my research shows otherwise) and now wants me to start on baby aspirin. So yeah, every time I have an aura I'm convinced it's a stroke.

As someone who used to suffer from visual auras (which ranged from a few minutes to 15 minutes at most) due to migraine, a persistent aura which does not go away sounds truly horrible.

culopatin 5y ago

Hey here too. The first time it happened to me I was in high school and my professor thought I was lying when I told her I could no longer see my periphery. I had a dentist appointment after school and I had to take the bus. By the time I got on the bus, I could only see through a tiny window so I had a hard time finding the handles to hold on to. I was lucky and my dentist was working with a massage therapist when I got there and the lady was nice enough to give me a massage where my head meet the neck and that seemed to start undoing the effects. Within an hour my vision started getting better. Over time I started learning the patterns of my migraines and I’ve avoided the auras for 10 years. Biggest impacts for me are staying hydrated, not starving myself and avoiding prolonged sun exposure (as in 3hs under the sun in summer)

tw04 5y ago
Same, too much caffeine and being dehydrated are a trigger, too many nights of not enough sleep as well. It's annoying they've gotten more frequent as I've gotten older. The first time it happened a doctor recommended Excedrin (HAH!), fortunately I had already suspected caffeine so I skipped that advice and hammered water and laid in bed for a couple hours instead.
- culopatin 5y ago
  I avoid acetaminophen altogether. i had a terrible terrible morning because of it. I guess my liver wasn’t doing great which caused a migraine and I added acetaminophen to the mix. 3hs of incapacitating pain followed by 6hs of recovery:m. A wasted day. Ibuprofen or naproxen for me. Caffeine is risky but present in my day to day, I just have to take double the water even if i know I’m just going to pee it out. Any energy drink messes me up BAD
JKCalhoun 5y ago
Thank god for the internet. I too would (infrequently still do) lose my periphery. (I called it tunnel-vision when I was a teenager ... close enough.) No one I talked to knew what I was talking about.
abhijat 5y ago
Mine started with a very weird feeling that something was off in my vision (usually triggered while working on a screen). I would notice after a while that a tiny portion of my vision was going missing and then the shimmering would begin and spread out. I've also not had auras for several years though I do get headaches still. I had extremely low vitamin b-12 levels and I think the auras disappeared after I took shots for b-12.
positr0n 5y ago
Woah is sun exposure a trigger all by itself? I almost always get a headache if I've been outside all day, but I always assumed it was a second order effect like being outside makes it harder to get enough liquids so I was dehydrated. Or heat stroke.
- culopatin 5y ago
  I think it’s just like what you described. I love the sun and I love being outside, but after a long day out at the beach or racetrack I feel drained and I always have a headache that can end up in migraine easily if I don’t cool off and over hydrate
- ars 5y ago
  Bright light of the sun can trigger a migraine, at least in me and some other people I know. It's not dehydration, it's the bright light itself. I found shade 5 sunglasses that are essentially lightweight welding glasses they have been amazing. Unlike most sunglasses they are actually dark.

vanderZwan 5y ago

I would lose the right half of my vision, except not like anyone here (without similar experiences) is probably imagining it right now: it was not like my right eye stopped working, no, the part of my brain that processes visual information would deny the existence of the right half of my vision and replace it with a reaction-diffusion lookalike aura. Split precisely down the middle, doesn't matter which eye. Even freakier, if I were to look at someone's face, my eyes would refuse to turn and show me the missing half of said face on the "left" side of my remaining vision. Similarly I could no longer read words or sentences because they were cut off and my eyes refused to do the normal reading saccades. It was then that I first learned that my conscious is only a small part of my mind, and not in direct control of everything. If I would have been stuck with that mode of perception permanently I would have gone crazy.

coldcode 5y ago
I know exactly what you describe, I had migraines for many decades; oddly enough now that I am older I still get the aura, but the headache itself is barely a Tylenol. I also had cluster headaches one summer in college; now those are truly the worst pain in the world. Imagine an electric drill going through your head for 15 minutes once a day, then vanishing.
Apofis 5y ago
> It was then that I first learned that my conscious is only a small part of my mind, and not in direct control of everything. We're made up of disparate systems that our conscience pilots essentially, even our mental faculties are disparate systems. This can sometimes make it hard to recognize when one of these systems is under-performing or worse-yet failing.
555watch 5y ago
> It was then that I first learned that my conscious is only a small part of my mind, and not in direct control of everything. That's probably the craziest takeaway from these. In my experience, losing half the vision + the middle part was the most often one. However, the craziest attack was when I temporarily lost the control of speech. The mind and thoughts were there, but nothing verbally said made sense when listening to myself. I'm so glad that taking a nap was enough to resolve that...

jtwigg 5y ago

I also suffer these though I've learnt to pick up on them before they happen so I can pull over or step away from the computer. This started when I was a teenager and has gotten better since my mid twenties (30 now). I've only had 2 attacks this year, though they have both been in August. I find taking a nap helps. I don't get a headache but I do eventually lose 99% of my vision.

Daub 5y ago

Some interesting work on the visionary writings of the 12th century Abbess Hildegard of Bingham. Her visions are now being understood as manifestations of migraines. I believe Oliver Saks was the first to understand them in this way. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4103393/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4103393/

SavantIdiot 5y ago

Heya, me too. A few times a year, 30-40 minutes. More frequently as I get older. Are you on anything for them?

abhijat 5y ago
Hi, no, right now I'm not on any medication for them. At the time I had them frequently (a few years ago) I was diagnosed with very low vitamin b-12 and given shots for it which seemed to help a lot with the frequency. I also gave up alcohol gradually around the same time and the episodes gradually subsided after that (I had noticed that the migraines were pretty bad after drinking). I do not know if the two were related or not. Hope you get better.

halfmatthalfcat 5y ago

I also get auras but thankfully it's the worst part of my migraine cycle (actual headache is a 3/10). Probably get one a month. I occasionally get pre-drome symptoms a couple days to a week out. It's a minor inconvenience for 30-45 minutes but they seem pretty benign (also verified by a neurologist).

snegu 5y ago

Yes, I had no idea that was possible! I have had a total of 5 silent migraines (aura but no headache) in my life, and each time was terrifying. What's worse is that my current doctor says there's no way to know if my last one was a TIA or migraine (all my research shows otherwise) and now wants me to start on baby aspirin. So yeah, every time I have an aura I'm convinced it's a stroke.