But my doctor says…. (retinal migraine and dealing with different diagnosis)

Recently we have had some discussion on the post about retinal migraine.  Many of the comments revolve around what exactly a "retinal migraine" is – which, of course, was why I brought the topic up in the first place.

Adele posted a helpful link to a Mayo Clinic article on ocular migraine and retinal migraine by Dr. Dennis Robertson.  It’s a good place to start into this topic.

So Dr. Robertson’s information appears to disagree with the article here on retinal migraine.  Why?

First off, we can start by affirming our respect for the work of the Mayo Clinic and also the work of Dr. Robertson.  I have frequently sent visitors to the Mayo Clinic for information, and I’ve done a lot of research using their website and offline publications as resources.

Dr. Robinson, now retired, has had a distinguished career.  He has specialized in eye disorders, such as retinal disorders and tumours of the eye.

Secondly, it should be pointed out that both articles do agree, for the most part.  We’re not talking about major differences here.  If you’re hoping for a big fight here, you’re not going to get it.  🙂

In fact, looking at the article from the Mayo Clinic again, I can’t find anything worth directly disagreeing about.  Adele’s question actually has to do with the comparison between retinal migraine and ocular migraine.  Does retinal migraine include "pattern" visual disturbances or not?  Dr. Robinson seems to only mention these in relation to ocular migraine, whereas I mention them as a symptom of retinal migraine.

Ocular Migraine and Retinal Migraine: Terminology Alert

Dr. Robertson has worded his answer very carefully.  He starts by saying,"The term "ocular migraine" can be confusing. It’s sometimes used to refer to two different conditions…"

Then he writes,"In some cases, "ocular migraine" describes a migraine aura that involves your vision…"

It’s what Dr. Robertson is referring to, but isn’t taking the time to explain, that’s causing the confusion (he’s trying to be concise, and I understand why he didn’t want to go off on rabbit trails).

There is a lot of confusion.  These are not universal terms that everyone understands.  In the medical community, even, people will diagnose the exact same thing calling it two different names.  In the world of migraine, this situation has become horrendous, and has caused a lot of confusion.

Here at the Headache and Migraine News Blog, I support the use of The International Classification of Headache Disorders (ICHD-II) from the International Headache Society.  The ICHD is an attempt to help us all work together by teaching us to speak a common language.  It doesn’t force doctors to diagnose or treat you a certain way, it just helps them to use terminology that everyone can understand.  Read more about the ICHD-II and why it’s useful here.

There is no "ocular migraine" listed in the ICHD-II.  That’s not because people with these symptoms don’t have migraine, it’s simply because they use a different term for these symptoms.

Just as ocular migraine has been used to refer to very different sets of symptoms, so has retinal migraine.  That’s confusing.

There is one difference, though.  Retinal migraine is in the ICHD-II list.  So we can define it in a way that can be understood.

What is Retinal Migraine?

Of course, I’ve already offered some information here, but I’m actually going to show you exactly what the committee from the International Headache Society wrote, so you have another source:

International Headache Society Classification of Retinal Migraine

There are more notes, and more we could say, but that’s the basic summary.

What did Dr. Robertson say?  Retinal migraine involves repeated bouts of short-lasting, diminished vision or blindness. This may precede or accompany a headache.

Is he right?  Yes.  And he goes on to mention that this occurs in one eye (monocular above).  Right again.

What about seeing "patterns", as I mentioned in my article?  Well, Dr. Robertson didn’t really specify one way or another, simply saying that there was loss of vision.

The ICHD-II is more specific, mentioning scintillations (flashing or twinkling lights), and scotomata (an area of decreased vision which can be manifest in a number of ways, including odd patterns).

Dr. Rima M. Dafer, Associate Professor at the Department of Neurology and Neurological Surgery Loyola University in Chicago, USA, acknowledges the ICHD-II classifications and writes this about retinal migraine:

Retinal migraine (ophthalmic, ocular) is not an uncommon cause of transient monocular blindness in young adults.  It is manifested by recurrent attacks of unilateral visual disturbance or blindness lasting from minutes to 1 hour, associated with minimal or no headache.  This phenomenon is frightening to patients, who usually seek medical help to exclude amaurosis fugax due to ischemia of the retinal arteries.  Patients describe a gradual visual disturbance in a mosaic pattern of scotomata that gradually enlarge, producing total unilateral visual loss….

Once again, notice that retinal migraine has been called ocular migraine at times.  But the correct ICHD-II name is retinal migraine.

And, of course, notice that there are sometimes visual disturbances in "patterns".

Comparing apples and blanji fruit

It’s a challenge to compare apples and blanji fruit.  Why?  Because there’s no such thing as blanji fruit!

Of course, Dr. Robertson has a slightly easier job.  Some doctors have used the term ocular migraine with some kind of consistency.  But it’s an old term, being used less and less, and a term that’s been used for different symptoms.  It’s better to compare retinal migraine with something with a generally accepted definition, such as migraine with aura.

So why use terms like ocular migraine?

Both Dr. Robertson and I have used the term ocular migraine in the past.  Why?  Because people are still being diagnosed with it, and people are still asking about it.

But I think we do need to be careful to point out that it’s an imprecise term (which Dr. Robertson did).  I do think it would have been helpful if his article had been a little more specific.  But his article was not intended to be a point-by-point comparison.

Take-Aways from Dr. Robertson

The main part of Dr. Robertson’s article is very important.  He writes:  Most often, loss of vision in one eye isn’t related to migraine.  It’s generally caused by some other more serious condition.  So if you experience visual loss in one eye, be sure to see an eye specialist.

Many of those more serious conditions are specialties of Dr. Robertson, and he should know.  If you are experiencing visual disturbances in one eye, make sure you get it carefully checked out!

Take home lessons from James

So, what if my doctor is diagnosing me with something that doesn’t seem to agree with what I read online, or what I read in the ICHD-II document?  Here are some thoughts:

  1. Don’t assume your doctor is simply "ignorant".  Not all doctors have the time to keep up with the latest in migraine research and terminology.  That does not mean that your doctor is not treating you properly.  She may just be using different older terminology, and she may be from a different field of expertise.
  2. Then again, this may mean your doctor is ignorant.  Sadly, some doctors simply haven’t bothered to learn much of anything about migraine.  If you begin to suspect that is the case, you should start looking for a second opinion, and maybe a new doctor.
  3. Of course, you already know this, but there is a LOT of misinformation out there!  Some official-sounding websites have information that is completely wrong, and at worst they’re there to scam you (remember this one?).  Keep asking questions, until you understand.  Check sources you trust, and see if they’re all saying the same thing – if not, ask why not.
  4. Remember that this is an ongoing conversation.  Someday the ICHD-II will be updated again, and things will change.  Just because your doctor doesn’t agree with some of the standard diagnosis and treatments, doesn’t mean she’s wrong.  Please, let’s never think that.  And remember, there are a lot of details we’re still discussing.  For instance, should we require headache before diagnosing with retinal migraine?  Are there certain types of visual disturbances that are more common in retinal migraine?
  5. Consider pointing your doctor to the ICHD-II website, and talk together about which one of the migraine or headache types there fits with your symptoms.
  6. Let’s keep trying to speak the same language.  Doctors, specialists, advocates, patients, researchers – let’s keep trying to clarify what we’re talking about.  It may seem at times like we’re being picky, but it really helps avoid a lot of confusion, and helps us focus on the main issues.  In this world, more and more people are joining the conversation.  A "secret language" all your own is no longer possible.
  7. Anyone can be wrong, and anyone can make a mistake.  That’s why it’s so important that people like Adele take the time to ask questions and compare things.  Keep it up, and let’s see to it that someday soon retinal migraine is an obsolete term – because no one is suffering from it anymore!

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5 comments… add one
  • rebecca Feb 9, 2011

    Yes I must agree that was very confusing. But I was hoping that maybe it could explain my problem. I have been diagnosed with Migaine Syndrome for about 4 years now. Mine started with visuals, though I recall them ever so often in my childhood, they came 4 years ago and never went away. I too would have the temporary blindness followed by a headache. The doctors first impression was that I was that I was going blind. After further examination they came up with migraine symdrome. Can u tell me if this is a common Migraine syndrome, a paticular kind, am I alone? I know no one else with this syndome who has daily visuals.

  • Eileen Vicente Mar 26, 2011

    If you are alone, I am alone with you! I have lived with the migraines for about twelve years. I have a pinched nerve and a slipped disc, do you. It is in my third vertabrae from the top. I keep thinking that maybe this is what is causing these horrible plagues. After the light show, I get extremely tired, and I also feel sick to my stomach. These after affects can last anywhere from one day to three days. The light show and blind spots only last about twenty minutes. One other thing that I have that interests me is that I have a membrane that is growing on my retina. I often wonder if this too is related to the whole situation.

  • Patricia Mar 26, 2011

    Well, I have had three different eye situations.

    The first episode I had complete vision loss in one eye, diagnosed as Optic Neuritis which lasted one month. (I thought it was an eye infection and finally took prescription antibiotic & in a few days my vision returned- maybe a coincidence). The second I had what you termed a scotomata (an area of decreased vision), lasting about a week or more. (I thought it was from reaction to a sulfa drug- but learned 30 yrs later I truly have reactions to sulfa drugs). The third type was what you termed scintillations (flashing or twinkling lights) and what I call an ‘upside down V-shaped flashing billboard sign’ in vibrant colors. I still have these occasionally.

    Here are some interesting observations:
    1. Each time with any of the above episodes, I have had a tight feeling as well as a a hot feeling in my eye. When I cupped my left eye with my hand, it would have a normal feeling temperature but when I cupped my right eye, it would be very hot. The heat from my right eye would fog up my sunglasses (in summer or winter).

    2. My ‘flashing lights’ will go away after I wash my eye with soap & warm water.

    3. I could take my daily Desyrel 50mg for migraine prevention, now unfortunately phased out of the market, & my hot sensation and tightness would go away. The Desyrel generic, Trazodone, does not help this.

  • Kathy May 19, 2012

    I have been having what I believe is ocular migranes off and on for about a year. Sometimes I won’t have one for a month, and then sometimes I might have two in one week. It only affects one eye at a time. Sometimes my left eye and sometimes my right eye. They only last 10-15 minutes at most. It usually starts with a visual disturbance, like if I am reading a sentence, I might not be able to see every letter in the sentence. This usually lasts for 5 minutes, follwed by a v-shaped flashing light. For instance if is is affecting my left eye, the point of the V will be on it’s side pointing left () The flashing lasts for about 10 minutes, then my vision is returned to normal. I spend most of my extremely stressful job at a computer. Can the computer and the stress be to blame for this?

  • natalie Nov 3, 2012

    having flashing in left eye and tiny little silver dots like when you can not get a tv channel. With this have you had panic attacks and your ears feel full and brain feels foggy. I am seeing a neurologist Monday 5th November 12 i hope he comes up with something because since March 12 i have been suffering from dizzness, its effecting my work and my life because i do not know when the attacts going to come on. No one realizes what you are going through

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