Do you REALLY have Ocular Migraine?

Ocular migraine seems to be an increasingly popular diagnosis these days.  Unfortunately, the term is also causing a great deal of confusion.  So let’s try to find our way to some clearer information.

Ocular migraine ?

The word ocular (sometimes spelt occular) relates to vision, or the eye itself.  So we can at least tell that ocular migraine has to do with vision or eye problems.  The problem is, the standard of headache classification from the International Headache Society doesn’t use this term.

So what we’ve ended up with are a number of different definitions.  In other words, there is no one proper definition for ocular migraine.  As a matter of fact, it would be helpful if the term was dropped altogether.

So what was your doctor talking about?

From what I’ve found, the most traditional use of the term is for a type of migraine that causes blindness.  The blindness is in just one eye, and is either full or partial.

A better term for this type of migraine is retinal migraine.  It’s very important to rule out other eye problems before you get a diagnosis of retinal migraine (for example optic neuropathy).

It’s possible your doctor is actually talking about migraine with aura (see this entry at the Mayo Clinic on ocular migraine).  The aura would be the visual disturbances (read more about migraine and aura here).  The visual disturbances may come before the headache, or there may be visual problems with no headache at all.  These are much more common that retinal migraine.  In migraine with aura, the visual symptoms are generally in both eyes.

There are other types of migraine that could involve visual disturbances, such as familial hemiplegic migraine.  It is important to get a more specific diagnosis if you’ve been told you have ocular migraine.  But it’s also important to make double sure you’ve ruled out other eye related problems, since of course the treatment would be quite different, and you don’t want to find you have something that’s getting quickly worse without treatment.

More about ocular migraine here.

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26 comments… add one
  • adele Jan 11, 2009

    I am female and have suffered dreadful, debilitating migraines for 52 years, since the age of 8. For the past 10 years I mostly have auras and then headache, but if I take medication straitaway the aura lessens fairly quickly and I resume my day. I have stopped going into a dark room, now prefer just to keep working to take my mind off this dreadful problem. I have had auras and headaches for the past 3 days, but will not give into them. The headache is there constantly but its dull and a nuisance. My biggest problem is that a “headache” can come on whilst I am driving or at my nursing job.

    • marlene Jun 28, 2011

      I read your story and mine is so similar. I got a strange sensation when I was 26 years old. I had the eye aura, then by the time I got home I had a terrible headache and threw up. I had to sleep and felt like I had been run over by a truck. It took me a while to realize that if I took tylenol at the time of the eye aura I did not get the headaches. The eye aura usuallly lasts only 30 minutes. I still dont know what causes them or why I can go for years without one and in the past 2 days I have had one a day. But I am glad I found out about taking the medication a while ago.

  • Tahir Razvi Jan 24, 2009

    I had headahes since 1990 or maybe before but never thought it was Migraine. I am 41 now, First time I had an Aura was at a phone booth and when I came back to my car I could not concentrate, it was a hot day and I felt quite confused and went home which was very nea, I just slept woke up with a severe headache. The Aura never came back but two years before I had Aura not knowing what it was I panicked, it was just a small spot first and than I could not understand whats appening, but since than I have these Aura’s followed with severe headaches sometimes only for few hours and sometimes for 2 days even, Aura’s can happen anytime even when I am driving so I always park my park on the corner and it takes nearly 5 minutes to start and it finishes within 15 minutes but the scary part is teh headache on one side, I don’t know what to do with this, first I went to teh eye doctor but everything was fine. How can I get rid of Aura’s and headache, can someone tell me pease.

  • lrb Jan 25, 2009

    Adele- I’m 51 and have had migraines since I was 8 as well. The only difference is I don’t usually have auras so it’s hard for me to get my migraine medication taken in time. I’m a teacher and continue to work through the pain most days because I have learned to live with the daily headaches. I visit a pain center for my medications and a neurologist for bi-annual updates. It’s very frustrating to find that no one can help! LRB

  • James Jan 26, 2009

    Thanks for your comments.

    Yes, everyone needs to deal with an individual attack differently, and treatment is different for everyone.

    But there is help available! Tahir, check some of the medications and treatments throughout this site. Migraine with aura is treated with most typical migraine treatments, but you need a specialist who understands your medical history to guide you through them.

    Irb – it is frustrating! But don’t give up. And if your specialists are not willing to try new things, give up on them and find someone who can help. There are hundreds of treatments and combinations of treatments. There is still hope that you can say goodbye to your attacks – don’t stop fighting!

  • adele Jan 27, 2009

    Thanks to all who answered my comments about auras/migraines.
    If I am at a function or even at work and I say that I have a migraine, most people who don’t know me look at me as if I have lost my marbles. Because no-one can see a migraine they assume you are confabulating–lying. The best thing I can do for myself is to take Neurafen x 2, strong ones, and just continue on with the job at hand, even though it will take me longer. Good luck everyone.

  • James Feb 3, 2009

    It’s so frustrating that there are still people out there that think migraine attacks are just “faked”. You’re giving me motivation to keep writing!

    • marlene Jun 28, 2011

      Migraines are real, whatever the cause. I so far have the aura first and keep tylenol with me at all times. Once many years ago, I did not have anything with me and got one while driving, got so sick. I wish everyone could get the aura first and know when it was coming. I do not know what causes mine, and I can go for long periods of time without any. I had one yesterday and also today, took the ty lenol right away and the aura lasted about 30 minutes. I sympathize with anyone with migraines

  • adele Feb 3, 2009

    Keep writng James, maybe someday, someone will find exactly what the causes are, but sadly it won’t be in our lifetime!!
    I quite often get a migraine whilst in the supermarket and I attribute that to the strong lights and noise; normally I will leave my shopping and head for the nearest exit. Yesterday I stayed on and finished my shopping, not very well but I did as best as I could and it went away quite quickly. No more panic attacks for me, just get on with the job at hand difficult though it may be. Cheers, Adele

  • Heather Rankin Apr 11, 2009

    Adele – I’ve had them for about 35 years – since I was 12. Numbness, loss of vision, sometimes speech, etc – can usually control the headache aspect – unless it happens in my sleep – that sucks.

    When I’ve had one in the previous few days or am on the “edge” of one, i CAN NOT go to Walmart or a large grocery. The lights – the lights – the lights will just set it right over the top in to a full blown episode.

    I don’t panic, but I get out as fast as i can. We had a older Walmart until two years ago and it was not as bad, but the new super one – the lights seem more intense, as is the noise level.

    It’s so nice to read others stories – sometimes it gets a little lonely with these dang things.

  • Kathleen Jones Apr 13, 2009

    My migraine attacks started when I was thirteen–within a few months of my first period. I am 54 now. I have only had them infrequently over the years, however, so I suppose I am lucky. The first migraine I had was terrifying–horrible aura and numbness followed by ghastly pain. My mother was an RN, my father an MD. He gave me Demerol followed by a Compazine suppository once the nausea set in. I slept for 12 hours. It worked better than anything I’ve had since. Now that I’m past menopause, I usually have only the aura, which lasts about half an hour–but no pain. This I can live with.

  • Tahir Dec 19, 2009

    My migrains has somehow going away slowly, I use to have two attacks minimum every month but since last 3 months I had only one attack one was at the night started with Auras as usual 15 to 20 minutes these zig zag lines with along with half vision and than severe headache starting from one side of the temple. next afternoon I had the same Auras and same feeling but the pain lasted for 2 days and touch wood no more headache since than so its seems like a blessing to have only one attack in 3 months.What I have done is to stop thinking about it and leave itthe way it is and I feel more powerful now and seems like I have overcome the fear of being bullied by the this Migraine with Aura, I can fully understand everyone on this blog what they go through and how people don’t understand what they are going through. God bless you all. Best wishes to everyone.

  • Gary Mar 6, 2010

    I just had one of these ocular migraines and I must say I was quite alarmed. I found this site once I was able to see clearly again. I had one several months ago and attributed it to lighting at an art museum, which seemed to trigger it. After reading some of the causes, I realized that I my 2 glasses of red wine, followed by a huge hot fudge sunday were probably a contributing cause for the one I just endured!!! I’m so glad I found this site. I suffer from anxiety from time to time and this triggered one of those episodes. I’ll know in the future that there is no need to worry myself into another anxiety attack.

  • Tahir Mar 8, 2010

    Gary, There are many out there who suffer from Migraine with Aura but unfortunately many of them don’t understand it, I was working in Baku Azerbaijan when I had my first episode, I was very worried so I consulted a doctor unfortunately the best doctor in this part of the world could not understand what it was but after the second episode I stared researching on it and I got the chance to visit Pakistan where I consulted the neurologist and after listing to my story he knew what it was but in any case he advise some tests and than told me that I have migraine with Aura although he was sure what it was. There are many different triggers, some food, even lighting and can be both, so finally I have come to terms with my attacks and now I accept it as a normal part of my life. Yes you are very right some times it can be very heavy food and sometimes empty stomach can cause it too, just get the check up before you know exactly what it is, I did my eyetest first to make sure there are no problem with my eyes, If its ok than make sure to take an advise from your GP as I did and than get the test to be sure, but I am sure you have Migraine with Aura. Believe me there are people out there in Baku who have it and still think its low or high blood pressure and when I use to advise them they use to get surprised that such thing as Migraine also exist. Thanks to God I am in US now.

  • JoAnn Jan 12, 2011

    I never had this occular migraine until I was older and the first time was at a department store..seems like the bright lights caused it. It was very scary so I got help. My doctor thought for sure it was occular migraine but had me get an MRI and also the test from the eye doctor to make sure. I still get it once in awhile but this week 2 days apart..I always thought you got these when you are younger, but never did. I am past menopause. When I get one, my Blood Pressure does go up but I think because of the anxiety it causes. I get a hold on it but still get anxious thinking maybe the tests weren’t right. Mine affects my left eye and I keep working or put a cold wash cloth over my eye until it slows down and I take a small amount of ativan (makes me a little tired..afterward a slight headache. Even after all the tests, I feel uneasy. I agree that it is very frustrating. I also take tylenol just in case a headache occurs (my doc told me to do that). The doctor says it is a scary thing but not harmful. I thought this type of thing subsided when a person gets older..

    • Sharon Jun 9, 2011

      I just started getting them, both eyes, several times a day. Sometimes, the zig zag lights are so many they blot out my vision! I used to have regular migraines without any aura, so I found this rather entertaining, with all the little dancing lights and the occasional blank spot.

      I’d never heard of it being related to a person’s age. With all my other pain issues, it’s kind of nice to have a thing that’s harmless and doesn’t cause any pain 🙂

  • Tahir Razvi Jan 12, 2011

    JoAnn this is a very normal reaction which you have, I still have them but I have come to terms and take it easy, if I am at work I just try to go to a place where there is little light, its just makes it better, although I know after 20 minutes there will be nothing but the feeling of having that severe headache scares me because sometimes it goes for 2 days , I am not afraid of this aura’s anymore I am scared of the headache and that makes me really down but once the pain is over I feel extremely fresh and full of energy, the migraine pain can stay as little as for an hour and can go upto 72 hours, I had such long headaches but very seldom.
    So take it easy remember you are much more stronger than this Migraine.
    Wish you all the best.

  • Tabitha Jan 14, 2011

    I am 25 and have got migraines since puberty started around 11 or 12, they also run in my family; my mom gets them as well as my younger brother. My migraines started with flashes of light and hand or finger numbness followed by a severe light and sound sensitive migraine usually lasting 5-8+hours. (Mostly triggered by stress) I noticed once my weight increased the migraines decreased, my husband and I recently lost 70+ pounds each and I have noticed a huge increase in migraines again. I have had 12 migraines from 5/10/10-1/6/12! This is a large increase considering I maybe have 1 a year/2 years. The past 3 weeks I had one every week! After about the 3rd of 4th migraine I consulted a doctor and was started on a preventative 25mg of amitriptyline and bulbital for the onset of a migraine…which I take as soon as I notice an aura..the terrible flashes followed by vomiting. 2 months after being started on the amitriptyline I had a check up visit and had 1 migraine in that time frame. My doctor decided to increase the amitriptyline to 50mg, since then I have had 3 migraines in 3 weeks like I said earlier. I will now be seeing a Neurologist in a few weeks to hopefully see why this is happening. With the large increase in migraines I have a constant anxiety and worry day to day if I’ll get a migraine…where I’ll be. Lately they are sporadic and often come at any time of day. My vision is commonly effected first with the aura, when I was younger I got spots of lights that flashed, recently I’ve started to have zig-zag flashes appear with half of one of my eyes going numb. I must say that the medicine I’m currently taking has made my migraines less intense, but I’ve noticed they are more frequent. So I don’t really see any benefit. I keep track of when I get them, intensity, time of day, how the aura was as well as the duration. Having migraines since I was 11 or 12 seems like this will be something I will struggle with as I grow older. I hoped I would grow out of this migrain phase. Please offer any advice or stories, its helpful reading how others handle these darn migraines!

    • Sharon Jun 9, 2011

      Keeping a log is a great idea. What worked great for me for migraines was Paxil, but I gained 60 pounds in 6 months on it, so if you take it, be VERY AWARE of the side effects – I have had doctors that just refused to prescribe it for anything, saying it should have never been allowed on the market, it does have other strong side effects. Also have used Inderal, which is a blood pressure medicine, and Caffergot, and Midrin, which are both caffeine + sedatives. Blood vessel constrictors + something to calm you. Currently I take a lot of pain meds for my back (in a nutshell, my spine is disintegrating) and fibromyalgia, but I think what helped more than that was the nerve blocks and the trigger point injections I got from pain management. Those thermocare heat pads stick to your face as well – the shoulder ones are just the right size to stick to your temple on one side and behind the ear on the other! (great for sinuses as well)

      Keep up with the doctors, I know I spent 20 years dealing with it before we got it stabilized…..and now it’s my daughter’s turn 🙁 It’s a different treatment for everyone, and even for you at different stages of your life. Always be an informed patient.

    • Nat Jul 18, 2011

      Tabitha – Sounds like we have similar migraines. Vision loss (for me it is in my right eye – retinal migraine), then severe pain and depending on the severity of the migraine numbness in my right hand/arm and the whole right side of my face. I have never vomited from a migraine and am usually not light sensitive. I am now 29 years old and have suffered from these migraines since I was 10. My advise – get your eyes checked. I was told a couple years ago that I have a vertical alignment problem. This means that my right eye is not properly aligned with the left (although you would never know it to look at me). It took optometrists over five years to discover this problem, and after going through lots of blood work, MRI’s, blind spot checks, etc., etc. To correct this problem with my eyes I now wear glasses that have a prism in the right lens. Although this has not completely gotten rid of my migraines, they are now A LOT less frequent (i.e. from twice a week to once every 5 to 6 months). I was also switched to a birth control with very little to no estrogen (deproprovera) which has also made a HUGE difference. To deal with the pain when I get a migraine I take anaprox but usually the best medicine is to sleep it off and drink LOTS of water. Hope that helps…

  • Sharon Jun 9, 2011

    I just found this site. I used to have awful migraines, and I seem to have traded them in for awful Fibromyalgia. Not sure I got the better deal lol.

    I have a history of severe low back spinal problems, and my neck has some disc issues as well, and lately, I have been noticing a huge increase in the “zigzag” and “bracket” lights when I get up from laying down, to the point where I sometimes can’t see around them! I’ve also had the blank spots now and again, and the optomitrist was the first to suggest optical migraines.

    I’m going to go with the most obvious choice and say that the increase of aura (I never had auras when I had normal migraines, just the pain) is because of something in my neck degenerating more, and I do feel more stiff in the morning, with the stiffness and the aura wearing off together. Should I be concerned? Or only if it doesn’t go away?

  • Tahir Razvi Jun 29, 2011

    Sharon Fibromyalgia has nothing to do with Migrains, these are the signals going from your brain to your muscles and creating those uncomfortable pains, there are some good medicines available now for these pains and aches connected to Fibromyalgia.
    Migrains with or without Aura is a mystery till date there are different theories and no one is still sure what triggers it. I personally suffer from Migraine with Aura, The interesting thing is that Migraine is not just a headache, even Aura’s are of different kinds, stiff neck is very common in Migraine during or after the attack, even before also, its really very painful event , you can have all kind of pains and aches in Migraine, Aura are visual, there are people who have these weird sounds before during and after attack for a short period like thirty minutes, numbness, difficult to speak, one side totally numb etc etc, weird things but they all llast for 30 minutes or little more. But my advise to you is to make an appointment with your doctor before you start any medication, I have gone through it a lot but what makes me easy is that I know what I have. So once you will see your doctor he will ask for some tests.
    If it Migraine than maybe you have to live with it for a while, they automatically goes away after a period of time and than comes back for sometime and again vanished.

  • kay Jul 19, 2011

    the office recently changed the lighting into those yellow lights, my! Migraine strikes me and i get these terrible headaches and oftentimes vomiting, was just discharged from the hospital now. These attacks are costing me my job.. can anyone give me a few things to do and consider to get rid of these attacks?

  • cindy slinkard Mar 15, 2013
  • barbara Oct 20, 2016

    I have had migrians for all my adult life. I am 70 yrs. olds and they are getting worse. my right eye is so bad i can only see blured objects. MAY GOD B LESS EVERY ONE THAT HAS THEM.

  • Trayvon Mar 20, 2017

    Really trippy and scary to me, i could deal with the headache its just the vision blurr zog zags and not being able to see straight bothers me plus all the foods and drinks i like triggers it !!! Sucks…god bless whoever doesnt have to deal with this

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