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permanent visual aura

Hello, i have suffered from visual snow for 11 years now and all the doctors i have seen have told me i have depression and anxiety.i have had an MRI and CT which were clear. I am convined that the migraines i started getting at the age of 16 have caused this permanent change in my vision and this has caused me to become anxious and depressed. Everything has an unusal glow about it and appears too bright. i have trouble with flourescent lighting and focusing on reading black text on white paper. computer screens are an issue and lectures at uni are difficult as the white background on the screen makes it hard for me to see beyong the flickering it causes me. after i look at an object then look away i see after images. i have trouble focusing on people when i talk to them due to the visual static. the vision is similar to the auras i used to suffer from before getting a migraine but not as severe.
I would give anything just to have normal vision, it's been so long that i've forgotten what it is like. i avoid social situations in bright lighting due to my focusing problems and i'm sick of this vision thing making everything appear dreamlike!
Do you have any advice?
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Avatar universal
Kris189

It's nice to finally find someone who has the same vision problem I have. I noticed that this thread is from several years ago, but I found your explanation and the answers to your issue very enlightening. I'm 24 and was diagnosed with CADASIL about 3 months ago. CADASIL is a rare genetic disorder that affects the blood vessels in the brain and around the heart. It's mostly associated with a classic migraine but has stroke-like side-effects. Most often the migraine is accompanied by an aura.

I noticed my permanent aura a few years back, around when I turned 12 and at 16 I started getting severe migraine-like headaches. At the moment my pain-threshold is so high that I can't really tell the difference between a coming migraine and a headache - and with the permanent aura I don't get the usual warning signs other people with CADASIL get.

I basically see a faint fuzz whenever I look at something, like a tv screen that isn't quite tuned right and normal light-bulbs have star-bursts around them. Florescent lights have an aura and white screens and paper seem to ripple and whenever I close my eyes I see a negative afterimage. Sometimes the afterimage is so pronounced that I can read the page on the inside of my eyelids. To be honest it amused me as a child and I would turn my bedside lamp on and off to see how long I could make the afterimage last. I never really noticed it before because I thought that's what everyone saw.

Now I live in constant fear of a CADASIL attack and knowing that I don't get any warning beforehand is making life living hell. Obviously this has made my anxiety and stress levels peak and this isn't helping my condition one bit. With the meds I'm already taking for my condition it's dangerous to just take something else, but I'll schedule an appointment with my neurologist and maybe go for a second opinion, but I've never heard of a Neuro-opathamologist in South Africa but the internet is a wonderful thing so I might just find one here.

Hope things are going better with you these days and that you found a way to get rid of your aura!
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1 Comments
I know these posts are old but I'm wondering if anyone has had any success yet?

Out of the blue I started experiencing dizziness daily which progressed over the course of a year into multiple visual disturbances and chronic migraines. It is 24/7 and affecting my life very badly. The visuals are all very similar to what has already been described and its very distracting especially with the dizziness ontop.

I believe that it is a fairly rare condition related to migraines but more due to an over stimulated part of the brain that deals with vision. Like there is too much electrical activity, in the same way that causes epilepsy. In all the articles and forums I have read it seems that anti epileptic drugs are the most effective to treat the visual distubances, such as lamotrigine and topiramte.

Has anyone had success with these? I am waiting to see a neurologist and I am hoping that they will allow me to try either one of these drugs because I believe that they are the best chance I have.

If you are on the forum or are reading and have not joined the forum, please do and comment as any information or help would be really appreciated. Thank you
Avatar universal
My daughter suffers from this and has found that a higher protein diet which aloows vitamin B to be absorbed more readily does help ( it is hard to tell whether it actually helps the symptoms or just the way she deals with it)
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Avatar universal
Have you considered whether you could have Lyme Disease? I'm no doctor, but I have lived in countries where we've been exposed to ticks so know a bit about it. It can cause a lot of the symptoms you describe and many doctors are very ignorant about it.
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Avatar universal
I also get really tired and lethargic
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Avatar universal
I have a similar situation. Glad to see it isn't just me. My migraines started when I was 13 and were always preceded by the aura. Then in college my migraines were becoming more frequent but less severe then I started to have a permanent aura for 2 years. It is really annoying! I see wiggly clear worms floating about but if I am about to have a migraine, I see more worms and flashes of orange or blue light, if it's really bad then I can't see out of one of my eyes.
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Avatar universal
Lexi I am not capable on day 9 of 10/10 migraine( w nothing but 6 hrs off from an imitrex shot) of describing as well as you did in your post the vision problems, what they look like, feel like. When I close my eyes I see the same images very brightly in reverse colors, that's about the only thing you didn't mention, everything else the same to a t. Also have annoyingly amazing sense of smell. Vision problems began w migraine auras, which I had for 3 yrs fairly uninterrupted, now they are just here, even on the couple days a month I have zero headache. muscle rigidity also started in the aura phase & now also just seems here to stay. About 2yrs in to chronic migraines I developed interstitial cystitis, which is a very painful bladder condition put in the category of sensitization syndromes. Also waiting appt on 26th with rheumatologist b/ c my neuro believes I have fibromyalgia. It's funny, I've been seeing her for about two yrs w a very good relationship until I missed a couple of phone calls from her on the same day, and had to explain to her that I was having a severe panic attack during that period, and I have something of a phone phobia. It seems now that she is not taking me as seriously, when I explained to her the increasing severity of numbness in my limbs to the point of taking several hours to regain mobility and asked for a neuro exam I know I failed certain areas, the one that comes to mind is that I repeatedly touched the area near my eyebrow w my right hand instead of my nose. When the test was completed, she noted  I had some weakness " but this could be caused by stress & it wasn't like I was lying or anything" I spent the next few days going off to my bedroom to sit down and try and touch my nose correctly in case  I wasn't trying hard enough or it was nerve induced or was faking w/o knowing it. Same thing every time right middle finger goes to area just below left eyebrow. By the way, this was all experienced w neuro's nurse practitioner. I have had anxiety since early childhood,the host of medical complaints began 4 years ago, and has made the anxiety 100 times worse. I understand that fibro CFS , and IC are all sensitization diseases. What I want to know is does mean they are triggered by anxiety, anxiety is just very prevalent, or is it a somatoform type thing. Ever since I failed the neuro exam and was dismissed as anxious, while feeling myself in rapid decline bc of the parasthesia I am really stressed. So if anyone has had prejudice w docs because of anxiety or has been told they have "sensitization " problems please fill me in
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Avatar universal
I am in shock. You have just described my situation to a T! I thought maybe i was going insane. But I have had an MRI and gotten my vision checked and all of the things you described like depression and anxiety, I cannot look at a grouping of white on white objects, carpet in offices with small geometric patterns, when i close my eyes and look at a bright light i see this moving flower pattern. that is what i see all the time it just distorts my vision. I also have floaters which is like insult to injury aaaaand it affects how i see at night because of the after glow that i see from lights. certain colors of light are very hard to focus on, blue is the worst. Im not sure what happened to my vision as i am only 23, but i had migraines with aura for a while and then the migraines went away and the aura seemed extremely less severe but i have days when its better and days when it is worse and on the worse days i get very introverted and just want to sleep because that is the only relief i have.
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Avatar universal
I have had the same thing for 7 months. Bright shimmering lights in my vision which are light induced. I have hernaited disks at C4, C5,C6 and C7 I beieve this is causing the vision problems by pinching nerves tha send  neuro vision receptor s in the brain. I have neck and shoulder pain and often get headaches. Have been getting Accupunture for this and have had some clearing in my vision. Have an MRI of your neck. Good Luck
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Avatar universal
You have the exact same thing as me.

I started getting a headache last jan...very mild one.
I started getting a mild Aura, snow, and flashing lights.
I started to learn to deal with this and about a month ago i have a really bad migraine (I don't really suffer from Migraines, this was the 3rd one I have ever had).
Now my vision is much worst, i'm worried if I have another migraine this will get worst.
I have had a MRI and doc has found lesions but can't say if these are the cause of my visuals...
I have alway been against taking pills but i need to start taking something for this as its driving me mad!
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Avatar universal
My 7-yr old son is stuck in Alice In Wonderland Syndrome.  He just went to bed, completing 21 straight days with nonstop visual distortions and hallucinations.  I am in dire need of help.  

18 months ago, he had his first episode, 8 days of seeing everyone with big heads, hands of clocks were spinning, tv's were breathing.  We were told he had Alice In Wonderland Syndrome (AIWS), an extremely rare migraine variant.  After the episode, we visited the Cleveland Clinic to see a top pediatric neurologist.  He was blown away that it lasted 8 days, said he thought it was too rare to be AIWS (which usually only last a few hours).  

On October 9th, it hit again.  Since then he sees every person with a big head that "breaths" in and out in size, the walls are crumbling like paper, the floor is a deep V canyon in front of him.  He's missed three full weeks of first grade, soccer, play dates, life.  He's an incredibly sharp, well-adjusted, mature, wise old soul for a 7-yr old.  And he's a first born, pleaser, rule-follower, all around good kid.  He has a good, loving, nonstress little life.  We are currently working with Dr. Kent Kelley at Evanston, IL, and Dr. David Rothner at the Cleveland Clinic, Dr. Larry Robbins, migraine specialist in Northbrook IL, and our PCP.  I'm also following leads to connect with a ped dentist (nerve triggers?), a GI specialist (he's had on/off severe abdonimal issues this whole period) and others.  MRI was clean.  MRA was clean.  Blood work ruled out mono, toxins, etc.  He had a spinal tap 10 days ago, all clear.  This isn't psychological, he know's it's not real and that the wires in his brain are just mixed right now.  

We've been on Depekote for 11 days.  No help.  We started Diamox 3 days ago.  No help.  The drs are considering an IV lasix (sp?) if it doesn't stop by next week (after the three full week mark).  However, this has only really been used in adults.  My son in 7.  They r thinking maybe this is a migraine (possibly abdonimal?) that has triggered a constant aura that is manifesting itself as Alice In Wonderland Syndrome.  Basically like five rare events all at once.  Seriously?

My husband and I are completely heart-broken and at a loss.  I am beyond exhausted, physically and emotionally.  I am contacting everyone I know to contact, I'm trying every lead, I will not stop until I find a way to stop this.  Last night my little guy said, "Mama?  Maybe I'm just always going to be this way."  It broke my heart.  

All my pediatric neurologist are saying there are no documented cases of this.  Except one case that they discovered of a boy in Egypt that had a constant AIWS for 7 days.  We just finished day 21!  We are living hour-by-hour, day-by-day.  BTW, we also have a kindergarten girl and 3-yr-old boy.  Our whole family is upside down.

If you know anything about Alice In Wonderland Syndrome or Constant Aura's and how to stop them, I would be incredibly grateful for any advice, information, thoughts, comments.  I'm just a mom trying anything to help my little boy.  Thank you for your time.
Kindly,
Brandy Isaac
b.***@****
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Avatar universal
Holy crap!  You have the extremity pain/paresthesia and muscle problems too??  

I'm 25 and I've had subtle visual disturbances for years, slowly growing more noticeable and pronounced since about 2003 when I went off Wellbutrin cold turkey for a while... I went back on it within a couple of months but the vibrating, glowing auras and snow have been getting worse ever since.  I've had depression and anxiety for as long as I can remember and been on a bunch of different antidepressants, etc.  It's eerie how accurately people in this forum have described the constant visual disturbance I've had that's growing much worse!  It's definitely the worst with black & white text and computer monitors!  I relate to that "glazed" and "numb" feeling I get in my eyes quite a bit.  It's like they just get exhausted fighting against the vibration of the auras all the time.  

I've been struggling with extreme fatigue and hypersomnia for years, but the pains and paresthesias in my extremities began this year in mid-February.  It started in my wrists as just a cramping sort of pain but since then spread to my hands as tingling cold/hot sensations and radiating burning. They thought I had bilateral carpal tunnel, so injected both carpal tunnels with a corticosteroid, which caused all the tingling to transform into shooting sharp and constant aching pains, which were suddenly also in my elbows as well as my wrists and hands.  Gradually it spread to my shoulders, with this always constant deadening aching and burning concentrating in my palms. EMG showed normal--no neuropathy, radiculopathy, etc. I began noticing similar sensations in my feet and calves.  Also, any pressure, even light pressure, applied to my arms (particularly upper) and shoulders/collar bone area and calves results in a delayed but extreme and lingering pain.

Couldn't find any help locally, so I went to the Mayo Clinic, hoping they could help me.  I've also been having problems with weight gain, exercise intolerance, temperature regulation (sweating a lot!) and migraine headaches (without aura, to my knowledge since my aura is ever-present).  After a thorough workup, including two brain MRI's, they couldn't find anything wrong--no brain tumors (thank God!) or lesions, no autoimmune disease, normal hormone levels, blood sugar's fine, cholesterol good (seriously, I'm apparently really friggin' healthy).  They pretty much told me I have "central sensitization syndrome", which is their fancy umbrella term for things like "fibromyalgia" or "chronic fatigue syndrome".  As for the visual disturbance... it's like I see an image with the afterimage at the same time... edges of it glow and vibrate along with constant but more subtle snow.  It's gotten worse this year as everything's been gradually progressing.  I'm pretty fed up with doctors--I honestly am not holding out much hope of finding one that can help me--but if it's fibromyalgia, I suppose a heightening of visual perception would go along with heightened pain perception.  It could be a problem with visual processing.  Maybe what we're seeing is completely normal and everyone sees it, we just can't filter out the "noise"?

I have a similar thing with my ears in crowded rooms--particularly restaurants--where if I'm with a group of people at a table and someone's talking, everyone else can hear them it seems, but I can't make out a word against the background noise, as if I can't isolate a single voice.  

All well and good of course to speculate, but it sure would be nice to know if anything helps.  I've had increasing anxiety levels with all this going on such that I've had hives for 6 weeks now with no sign of them quitting despite multiple antihistamines!  Maybe the increase in my anxiety level is responsible for the increase in these visual disturbances as well... in which case, I suppose the only solution would be stress management techniques.... any of those actually work?  lol

I've grown pretty cynical but I don't want to be discouraging.  I'm continuing my quest for relief from eye problems (which of course I have perfectly good eyeballs aside from a slight stigmatism in one eye according to opthamologist at Mayo in Jacksonville) as well as muscle + extremity pain.  I'll be sure to post again if I find out anything more.  
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Avatar universal
I have had visual snow and palinopsia (afterimages) for over a year now.  It happened out of no where one night when I went to bed.  I have a history of depression and anxiety and at the time I was really sleep deprived.  I researched it on the Internet and my neuro-opthamologist diagnosed it.  He said he sees about 10 - 15 cases a year.  I've always had headaches, but thought they were sinus headaches but later figured out they were probably migraines.  

At the same time I also had other symptoms of numbness, tingling, burning in my hands and feet, painful stiff joints, and muscle twitching.  I was tested for all auto immune diseases, vitamin deficiencies, diabetes, HIV, got EMGs, MRIs, numerous eye exams, etc.

All they found was a Vitamin D deficiency (level of 17), some non-descrip brain lesions on my MRI (my Neuros say they don't think they're MS lesions) and my usual depression and anxiety.  

Very scared because no one can give me an answer and I never know which symptoms will pop up.  I"m taking Topamax which I think helps a little with the visual snow and afterimages, Nortriptilyne for depression and the nerve numbness/tingling pain in my extremeties, Klonopin occasionally when my extremety pain is particularly bad. Anyone else have these other symptoms too?
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Avatar universal
I forgot to mention that my mother and brother also have this.  My best supposition is that this is genetic and some sort of bad wiring between the eyes and the brain in my case.  
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Avatar universal
I have had visual snow as long as I can remember, which is since I was 4 years old.  It's always been especially easy to see the static in the dark, although I can see it all the time.  I also see halos and starbursts around lights.  Oddly, though, these starbursts tend to be two perpendicular lines or just one straight line...  

Also, on rare occasions, I see sparkles very briefly.  Usually for a few seconds.  They don't seem to be associated with anything in particular but are very pretty.

Also, on the couple of occasions where I've come near to passing out (or did), the static got more and more until it swallowed my whole field of vision.

I've never suffered from a migraine as far as I know nor seizures.  I am near sighted and have a slight astigmatism.  I'm also a vegetarian who might not keep up enough on the protein and vitamins.  I've never asked a medical professional to examine me for my symptoms.  My eye doctor has never commented on anything being out of the ordinary.

I'm not sure if my descriptions will be helpful, but I figured I'd throw my story out there.
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1411150 tn?1284419657
Wow, am I glad I found this forum. I've been experiencing what I've been calling "weird vision" for nearly 10 years now. It's so hard to explain to people, but aura is the perfect word. I feel like there is an aura around everything I look at, 24 hours a day. It does flare up and get worse, but is constant. Does anyone else also notice that their eyes feel numb or dilated?

I do not have migraines, but have read that it is possible to have migraines without pain. Anyone else have the aura without pain? I went to a neuro-opth many years ago, but they were not able to offer any ideas as to what I was experiencing. I may look into trying another one soon.

Thanks for any input in advance. I hope everyone has found some relief!
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Avatar universal
MEDICAL PROFESSIONAL
Hi,
Thanks for the update. It is good that your neuro-opthalmologist cleared your visual symptoms. How are your osteopath sessions? I hope you are feeling better already. Take care always and hope to hear from you soon.
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Avatar universal
Hi
I have had the visual snow checkd by my neuro opthalmologist but he says its fine just need to control it. Its the other problems like tiredness and nipping at side of head. I am seeing a osteopath for ,my neck pain so hope this will help.
Thanks for help so far.
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Avatar universal
MEDICAL PROFESSIONAL
Hi,
How are you? I know it has been more than two years since your last post. As mentioned, there are plenty of members who are experiencing the same visual symptoms you have. Were you able to identify the underlying cause and have this symptom managed? Take care and do keep us posted.
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Avatar universal
MEDICAL PROFESSIONAL
Hi,
How are you? Were you able to have this checked by your neuro-opthalmologist? If the medication you are taking is not working, check with your doctor for proper management. Aside from medications used for migraine, complementary and alternative medicine such as biofeedback and other relaxation techniques may be helpful. Take care always.
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Avatar universal
Than k you for the above posts. I have been experiencing exactly the same symptoms which is  equally disturbing and interferes with my life. The doctors tell me to get used to it and it will go away. I have read the above posts and may try a different medication as I am currently on Propananol but it is not producing any effects other than lethargy and weight gain. It has incurred depression and anxiety which is hard to shift. Please keep me updated with any progress that you make.
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611838 tn?1220718729
Same thing here, check my posts, 18 years for me, no one knows anything other then they acknowledge these problems are real, klonopin which I prescribed to myself 16 years ago, is the ONLY thing that has helped they thought I was crazy back then, now it's commen for these symptoms.  I'm on 3mg a day it's very potent but helps, it does not get rid of anything however...

Same exact symptoms, 24/7, it destroys lives and no doctor has a clue I've seen close to 35 over the years....  
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Avatar universal
Hi everyone, I've had all the symptoms since the end of Jan. 2010.  It freaked me out so bad that I took a week off of work in the beginning.  I've had migraine with aura since I was 13, (now I'm 32) and have been on celexa for about 8 years.  It seems like any research I've done on my own shows a connection to depression or anxiety with this 'phenomenom'. Anyway, I had the full workup (MRI, numerous eye tests, etc). Finally I was sent to a neuro-opthomologist and after a 3 hour appt, he told me I have persistant migraine aura and showed me about a half page blurb from one of his medical books about it. He said basically its the same thing happening in the brain that causes migraines but is still unknown why it happens.  He also said there is very little known about it by doctors (which I found quite apparent).
    Before I had seen the Neuro-opth. I had read somewhere that clonazepam has helped, so I tried some lorazepam that I had (which is in the same drug class) and it helped!  It's for anxiety or sleep and makes you drowsy so there's a drawback.  Also, it's a controlled substance because it can cause dependence so it can be touchy asking your doctor for it.  After a few months on it though, it just stopped working well.
    The Neuro-opth. prescribed topamax which I am very sensitive to and have been on for 6 weeks with no results but he said it may take a while.
     I think I got very lucky to meet this doctor. He basically told me what I'm seeing is real and there is a lot more people out there that have it than previously thought. Please don't give up. I have a good idea of what you're seeing and it's not ok to just put up with it.  It's a matter of finding a doctor that will help you with it. If I find any relief I'll repost. Good luck!
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Avatar universal
I started  having migraine headaches with aura and numbness in body parts when I was 13.  I am 35 now. I went through a bad time in my life at around 15 to 19 years old as the migraines got worse--a really bad one every couple of days. I was unable to attend school very much for a couple of years. During this time I started having problems with anxiety/depression. When I reached around 20 I was able to get on a med combo that allowed me to live my life- I got married, started a career, etc. I did ok for several years then anxiety and migraines almost took over my life again. For the past 2 years, I have been trying to find meds that will help with the anxiety, migraines and constant aura.
For most of my life I have had symptoms like all of you. I have found some important things over the past 22 years, please listen if you have these problems like me;

1-if you have migraines with constant aura-YOU DO HAVE ANXIETY!!!!! Trust me, I have researched anxiety, and migrains extensively, never heard of constant aura without some level of anxiety. You may have lived with a slight amount of anxiety without knowing it. The past year I have tried several ssri s and older antidepressants that have helped me greatly with my aura, anxiety, and migraines. I am VERY far from normal, but I realize now how anxious I was, and how bad the aura was after trying antidepressants that worked. I have been on Amitryptiline, and now switching to Celexia, after Zoloft wore off and aura is worse.
I am not a doctor and could be wrong, but I have spoken with several folks with my problems and they have some level of anxiety with the constant aura. Serotonin is responsible for migraines and anxiety.
I know how tuff this is, but speak with your doctor, or read about anxiety/aura/derealization.


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Avatar universal
This is quite interesting to read all of everyone's comments...I have had migraines w/auras since 1986 (not much headache or nausea, but always the aura & temporary blindness - usually lasts 20 mins. or so). The squiggly little flashing white lights in my vision are there 24/7 though. Both my mother & uncle experienced the same symptoms. For me, they are little "white worms" that move & dance all about, they sometimes vary in size, like small meteors passing by my eye, but never leave. I've had them for so long, that i function normally and barely notice them, unless i specifically focus on their presence. It's frustrating though, since my optometrist looked at me like i was crazy when i asked him about this. They don't seem to do much, just wiggle about. Good luck to all the others here w/this strange condition.
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