Visual Auras

Specific Illnesses & Conditions VM/MAV
1

I know this has been talked about before, but I need to bring it up again -

I just had my first visual aura in 2-1/2 years. I was hoping so badly, I was done having them (they scare the “you know what” out of me).

How many of you get them? How often do you get them? Has anyone ever stopped getting them ? (Sounds like I’m panicking huh? :shock:

Mine always start the same way, with a blind spot in the center of my vision, and within a couple minutes I get the irridescent floaty thing that gets bigger and more annoying, and today it lasted 30 minutes. It usually takes up about 75% of my vision before it starts to fade.

Julie and Jen, I know you guys have talked about yours, but do you still get them, and how much?

Kim

2

Hey Kim, sorry about that. Did it run it’s cycle? like a classic migraine, or is it there for the long-term? Like a a sign of some kind of relapse? funny Kim, i’ve been thinking of you today and had plans to PM you by the end of the day.

Mine are gone gone gone. the meds took them away, early in my treatment, Neurontin did it. When i had classic migraines mine were very much like you described yours and then would run its course, be over and then i would land in an agonizing migraine headache followed by an even more incapacitating hangover. The hangover was worse than the pain.

During my MAV the aura was constant: visual snow, blue lava lamp, flashes and floaters, star bursts, intense white lights laterally in both eyes, strobe lights, a hazy white spot when i was tired, double and triple vision, surreal vision, like looking through the bottom of a coke bottle, nystagmus, seeing my heartbeat, seeing things melt, flickering in the corners of my eyes, a constant black and white kaleidoscope moving all over the place, things looking too big or too small, too near or too far.

Jen, have i left anything out? I would see all this whether my eyes were open or shut and worse as the day went on. I would never have been able to fall asleep without ambien. I used to tell my husband, it’s time for the light show! At night, when everything is dark, i still have some residua, but it’s nothing compared to what it was.

Boslee has a lot of visual stuff going on. I’m not sure he’s reading the board, but he may or may not be able to add to my list.

Most of all, i hope it helps to know that you are certainly not alone. I’ll bet this ends up being a very long thread :slight_smile:

Julie

3

Thanks Jul, I hope alot of people respond to this thread. I would like to hear everyone’s experience.

I don’t really know whats happening here. Today, when it hit me, I ran for the ibuprofen. Took two (normally I just take one - when I start spinning, which Thank God is not very often anymore. I’ve been doing GREAT in that department). Laid down in bed, and said “Ok, come on, get this over with”. It was over with in 30 minutes. I was left with my vision feeling really dim - almost like somebody turned a dimmer switch. Like I said, its been about 2-1/2 years, since I’ve had a full-blown humdinger like this. There wasn’t anything abnormal about this one, not any better or worse than I’ve had before. I just HATE them. It sends me into a panic, my fear is always - “what if this doesn’t stop???” I know they are harmless (right??? :shock: ) As always has been the case for me, I have just a very slight headache. Not even enough to complain about , so I’m thankful there also.

Anyway, I guess what bothers me most is, I don’t know why after this long its happening again. Probably just stress, or any combination of things. I cut back on my propanolol about 6 months ago, so I’m thinking I need to increase it again. Who knows???

I have weird visual things really often ever since my crash, but have kind of gotten used to them. Flashes and floaters, the snow at times, I’ve “seen” my pulse beating too, weird color blobs (just for a split second) nothing ever lasts for any length of time thankfully.

Anyway, it definitely does help to know I’m not all alone. Thanks for letting me vent and whine like a baby!!! :oops:

Kim

4

The worry that something will never stop is horrible. When i first got dizzy i worried that it wouldn’t stop, well, we know how that went. And then i worried that it would get worse, and it did.

My auditory stuff was intolerable and I wanted to jump out a window, so that’s how you must have felt worried that this visual stuff wouldn’t go away.

But the kind of visual aura you’re talking about, i’ve never heard of anybody being stuck in. That WOULD be bad. The stuff i described was tolerable. I hope more members respond. I know Jenny will, she’s had a boatload of aura. And Boslee too.

Julie

5

Hi kim,
I’ve been sleeping while you posted,
you said this.

I have weird visual things really often ever since my crash, but have kind of gotten used to them. Flashes and floaters, the snow at times, I’ve “seen” my pulse beating too, weird color blobs (just for a split second) nothing ever lasts for any length of time thankfully.
me too

this means you havent stopped SILENT migrianing at all.
well as far as I’ve been told anyway.
it sounds as if the meds have made then more tollerable and less intense, harldley noticable.
do you rock, or are you dizzy in between attacks , sorry I cant remember.
its the topa, I’m forgetfull latley.

the pannic apart from the obvious, being very frightend of not being able to see and having another crash afterwood,
the pannic is also talked about as being another symptom of the neruons rushing
so dont be hard on yourself try to ride it through knowing full well it will happen regardless.
I find it frightens me less knowing that.

as far as the visaul aura goes, I’ve never experiance one like that.
thank god how spooky
I’m sorry Kim ,
this is such a scarey thing isnt it.

6

Kim also , I’m not allowed ibuprofen while on my verapamil, are you while on your propranolol?
would asprin be better?
I find ibuprofen gives me a rebound mig the very next day.
just wondering.
love jen :?

7

That’s right Kim, i had forgotten what Jen brought up - predrome can bring on either a panic, or a euphoria. So the panic may be something that is part and parcel, not something you can do anything about. Jen talks about a euphoria predrome and i used to get the same, a feeling of calmness during the aura which made no sense since i knew that in an hour i would be in agony.

Maybe that’s why i was never bothered by the aura, my brain was making endorphins or something, while yours might be making norepinephrine or something (i’m speculating). I googled this the last time it came up, so i could document it.

so don’t be so hard on yourself. it’s not you be a baby or whining. it’s your brain tormenting you in yet one more unfortunate way.

Be well Kim, and keep us posted on how this progresses.

Julie

8

Hi Kim,

My experience with aura sounds a lot like Julie’s. When I had classic migraine’s in my twenties, the aura was just as you and she described. It would last about half an hour and then Boom! the headache would hit. With my current migraine experience I have the visual snow, flashes, floaters, nystagmus, seeing my heartbeat, etc. The visual snow appears to be permament, while the others are intermittent. Fortunately, I haven’t experienced as many crazy aura’s as Julie. (Sorry, Julie :() I hope they are lessoning with your medication!

Anyway, that is my experience. I’m glad you don’t get the killer headache afterwards. That is the last think you need on top of the rest.

Take care,

Marci

9

Julie, Jen, and Marci - Thanks guys.

My dizzies have been so much improved, I really can’t complain. It just seems like maybe I’m heading backwards, I’m hoping not. I hope I’m not cycling to have another crash.

Anyway, Jul, the predome panic thing makes sense. I’ve had it before, in different ways, and it makes sense. The fear (in my case, of “oh my God, what if it doesn’t stop”?) actually feeds it all, I know that to be true. Not good.

Jen, I’m told the ibuprofen is ok with propanolol. I’ve actually had success with popping an ibuprofen when I start into a spinning episode. Thats why I grabbed for it so fast yesterday. I still have my spinning episodes and occasional bouncing floors, like walking on pillows, but thats been so much improved in the past year or so!! I do worry about the rebound thing with ibuprofen though, and I try to take it as little as possible.

Marci - yes you are right!!! I’m very blessed to not have the headache afterwords. I really am. :smiley:

Thanks everyone, bottom line, it really does help to know I’m not the only with these stupid crazy symptoms - now that would be something to complain and freak out about. 8)

Like I told you Julie, I’ll keep you posted on the progession, but I’m hoping there won’t be any - LOL!!!

Kim

10

Hi Kim, sorry you had such a bad scare with that. I thought I’d tell you that my MAV is about 80-90% visual, and my visual symptoms are unfortunately 24/7, so I understand how frustrating they can be. I haven’t had anything that dramatic happen in a moments notice, but I have some pretty horrible symptoms on a 24/7 basis, so I feel for you. I have constant visual “static”, I constantly see fickering lights in the dark or with my eyes closed, I see shadows of light on top of everything, especially in low lit environments, so my night vision is shot!! I see the world constantly vibrate, shake, shimmer, shift, move, wave, and it’s constantly hazy if I sit still. I have to move in order for this to go away to a degree. It’s very disorienting and very unsettling. So far, no medications have been able to touch this but I’m still trying several meds. I have a very bad light sensitivity problem as well, so I must wear sunglasses on a 24/7 basis as well. I also have a nice case of tunnel vision, like looking through a pair of binoculars. This is much worse in the morning, and gets slightly better as the day goes on, but is there 24/7 to a degree. My depth perception is all “off”. And I am visually stimulant “intolerant”, so I cannot go shopping, to the movies, the grocery store, a crowded mall, a concert, a convention, or any where that has lots of visual stimuation as I simply can’t process the information and I am far more disoriented and then the headache coms. And this is on top of the usual 24/7 dizzies, headache, nausea, fatigue, concentration problems, and the rest of it. I have a very disabling case. Not sure if that puts your recent attack into any kind of perspective, perhaps not, as it’s still scary, but you could have permanent visual issues as I do. Still, it’s frustrating because you thought perhaps you were over all that. Well, I guess like MAV as a whole, any part of it can rear its ugly head during times where we are vulnerable. But you got through it, and maybe this will be your last “attack” for another 2 1/2 years. I certainly hope so. Be well. :slight_smile:

Boslee

11

Bos!

You have even more visual stuff than i thought and it’s even worse than i thought! I think that would freak me out and I don’t usually mind visual stuff. And you sure do have a way with descriptives.

Sorry Kim, i’m going to go slightly off your topic for just a moment, but i want to add a visual symptom I’ve developed because of either: going off Zoloft (6.25 mg and weaning) or being on Topamax (100 mg for about 3 weeks now and holding) or going on Effexor (28 mg and climbing). Jen has developed the same symptom and she’s pinned it down to the Topamax.

Trailers. Visual echos. I wake each morning and when i move, like my arm, i look like I have wings, like an angel. any part of me that i move leaves a visual echo behind. It doesn’t last all day. it’s mostly in dim light, but at dusk it starts to come back. And then again in the morning, i’m an angel. it’s getting worse. i don’t mind it, i’m just mentioning it in case anybody else happens to come across it.

Sorry you’re suffering so much Bos, and thanks for the input,

Julie

12

sorry for interupting this post everyone,
Jules the ER described it to a tee to me, I nearly fell over with excitment. forgot to tel you that
funny!
yes he has heard of it
topa! :mrgreen:

13

yes, it’s bad unfortunately. But I get out there every day and try my best to make do. I have a new issue getting in my way though but i’m going to start a new topic on it.

Bos

— Begin quote from “Julie”

Bos!

You have even more visual stuff than i thought and it’s even worse than i thought! I think that would freak me out and I don’t usually mind visual stuff. And you sure do have a way with descriptives.

Sorry Kim, i’m going to go slightly off your topic for just a moment, but i want to add a visual symptom I’ve developed because of either: going off Zoloft (6.25 mg and weaning) or being on Topamax (100 mg for about 3 weeks now and holding) or going on Effexor (28 mg and climbing). Jen has developed the same symptom and she’s pinned it down to the Topamax.

Trailers. Visual echos. I wake each morning and when i move, like my arm, i look like I have wings, like an angel. any part of me that i move leaves a visual echo behind. It doesn’t last all day. it’s mostly in dim light, but at dusk it starts to come back. And then again in the morning, i’m an angel. it’s getting worse. i don’t mind it, i’m just mentioning it in case anybody else happens to come across it.

Sorry you’re suffering so much Bos, and thanks for the input,

Julie

— End quote

14

Thanks Boslee -

You’ve humbled me. I feel really terrible, I’m so sorry for all you are going through. I can’t imagine having the visual stuff you described 24/7, I just don’t think I would have it in me to cope. Its very, very frightening. Julie spoke of auditory problems, and again, I don’t think I’d do well with that either.

I’m counting my blessings right now, the only thing I’ve ever had 24/7 was the vertigo during my “crash”. It was non-stop for about 2 -3 months, and slowly let up and went away. Its an occasional thing now, comes and goes, but thankfully it “goes”. My balance is generally overall poor, but I’ve learned to live with that. All of the other symptoms (and there are many) I’ve been able to deal with because they come and go. I battle alot of anxiety. I think in my case, the fear, anxiety and panic is my own worst enemy. But its all part of this crazy package I guess.

Thanks for sharing your experience with the visual stuff. I know you’ll find the right med-cocktail that will work for you, and in the meantime, know you are in my thoughts and prayers.

Thanks -
Kim

15

Kim ,
thank you, for bringing this up.
I forgot to post this.

I think sometimes we get trapped in our symptoms, of which are many!
then comes the anxiety on top!

npadnews.com/anxiety-symptoms.asp

jen

16

Jen,

you are an absolute wealth of links. you have certainly done your homework.

I remember at the very beginning of my crash i had a lot of panic.

I was at my computer one day, fumbling through trying to keep my business running when my left arm went numb. PANIC!!! i thought I was having a stroke. Then i remembered. First - that numbness in any extremity was a classic symptom of panic. Second - when i was in my 20’s i had numbness, that came in waves up and down my left arm, as a predrome to a gigantic migraine (7 days in the hospital, 6 weeks hangover). As soon as realized that, the fear, as well as the numbness, went away. Phew! We do learn some lessons with life.

Julie