Is this really a migraine?

[jenshead]

I have been having trouble with dizziness, nausea, and headache for a year.  I have been diagnosed with migraines by two neurologists but I have doubts.  Here are some things I thought were supposed to be characteristic of migraines but do not apply to me.   I'm on medication that helps a ton (diamox) but I don't want to leave a potentially unknown condition untreated and just covered up by medicine.  Have any of you experienced similar symptoms?

1) I thought...They occur in episodes.
I have had 24/7 severe dizziness, nausea, and headache for a year, constantly, which came about suddenly. It goes away when I lay down and comes back when I'm upright (slowly).

2) I thought...There can be vision symptoms like seeing lights, double vision, and blind spots.
One day I could read, the next I couldn't.  I spent about 4 months in occupational therapy restrengthening my eye muscles so that I could track objects, do saccades, etc without getting flush, experiencing eye watering strain, and worsening my symptoms.  If I don't keep up with the exercises, I start having problems again.  This is my only vision-related symptom

3) I thought...Migraines typically hurt on the sides, front, and top of your head.
I'd say 60-70% of the time my pain radiates up from the base of my head/neck.  The rest of the time it is on the sides, especially the right side.

4) I thought...Migraines have nothing to do with neck/spine.
When I turn my head to the right (for example, to check a blindspot while driving), my eyes immediately get very watery, I feel a weird tingling sensation up the side of my face, and my headache worsens.  This started at about the same time as everything else.

5) I thought...The pain is typically throbbing.
Sometimes mine is, sometimes it's sharp stabbing pains.


Thank you in advance for all input!

[thieb9]

I agree that sending your films to a specialist would be the best thing to do. While the flow may not be blocked there could be some over-crowding in there that could be causing some of your symptoms. It took me 9 years and many many doctors to take me seriously. Im not a dr, so I can't say what it is or isn't, but I wouldn't write the Chiari off just yet.. Some Doctors will look at your films for free, and some charge but it may be worth it to you.

[jenshead]

I'm hitting a bit of a catch 22 with the Chiari thing.  A ENT will always be looking for an ear problem and then find a possible ear problem (however likely or unlikely).  A neurologist will look at the same patient, look for a brain problem, and then say it's a brain problem.  I have experienced this exact problem.  Doctors don't say "I don't know, go talk to this other kind of specialist."  They always come up with SOMETHING relevant to their field.

I'm not saying I'm ignoring Chiari.  It's the only thing I have to go on, so definitely keeping it in the back of my head.  Chiari symptoms are very spread out and can match a lot of problems so...it's difficult, to say the least.  

If I wouldn't have to pay an arm and a leg to travel and see a Chiari specialist, I would do it just to see what s/he says.

[n40066]

drs who are not chiari specialist will always say this....send your films to a specialist for review!

[jenshead]

Here is a list of tests.  Everything was normal except where noted.

I've had a blood test for glucose/thyroid/iron/etc, brain CT (possible Chiari), brain MRI (4mm Chiari), full spine MRI (have not received results), neck x-ray, CSF Flow study (diminished flow, not blocked), hearing test, vestibular evaluation (weak right eye muscles), eye exam (optometrist and ophthalmologist)

Multiple drs have said the Chiari Malformation and diminished flow are a coincidental finding and not a problem.

[thieb9]

Have you had an MRI done?