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!

[LivingInHope]

I've experienced frustration with doctors, so I hear you on that.  And to get sick while you travel can make it more of a challenge for sure!  I wonder if anybody on the Chiari forum would have a list of doctors who specialize in it?  See PM for some info that you may want to follow up on.  Getting a doctor who cares enough to try to help you through what you are dealing with is a real blessing when it happens.

Also, I was curious- did the doctor order just iron, or did he/she include ferritin (iron stores) in the testing?  If your ferritin was in the low end of normal range, you may even want to get that checked again, particularly if you start feeling extra tired- this happened to me.  It doesn't have to take long at all for the ferritin to dip so low that it can start to affect blood count.  I've even experienced iron deficient symptoms when my blood count was still normal in the past.  If you have that problem on top of your other issues, it can only make things worse.  

Have you gotten your spine scan results yet?  

I found some very interesting information that ties something called "downbeat nystagmus" in with Arnold-Chiari malformation.  See private message!  What I often do with doctors is copy portions I feel are significant, along with the source, at times with the doctor's name who wrote the article, because a respected source is important to doctors.  You may just be on to something here with your downward eye movement thing that could make Chiari's an even more likely possibility than 50/50!

[hava]

Do this pranayam twice daily for 30 minutes with concentration and come with your feedback, when you start to notice the benefits.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom pranayam –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.

[jenshead]

I have seen the Chiari forum and yes it is very active and informative.  However, I feel like I can't do anything about the Chiari - don't insurance companies get angry when you keep switching doctors?  With every doctor I have made a point of talking about the Chiari Malformation and trying to argue that it's something worth pursuing and man do doctors get annoyed!!  Getting mad at them accomplishes nothing, turning on the waterworks only works so many times.  I was told by a neurologist and a neurosurgeon that the diminished CSF flow was normal...seems silly, wouldn't the report say "normal" if it were normal?  I had to literally demand the CSF Flow Study...I don't think I'll get a 2nd shot with the better MRI, and I'd probably have to drive a few hours to find one (and I get pretty car sick thanks to all this).  

Also with the Chiari...I literally would have to find someone locally to take it seriously because if that is my problem, I only want it monitored.  I'm not letting someone cut into my head unless there is imminent danger.  Very, very frustrating.

The problem with reading started immediately with the dizziness, nausea, and headache.  Very sudden...I'm in grad school and I suddenly couldn't even read a paragraph, much less make it through my everyday tasks.  On the computer, I had to squeeze windows to be tall and narrow so that I didn't have to scan left to right.  The nystagmus was discovered when I went in for occupational therapy for the dizziness...they ended up focusing on the vision because my balance was good.  My understanding is that it's almost if not completely gone now, but why was it there?  Both of my neurologists noticed that when I lay down with my head turned, my eye moves downward...they thought it was really interesting and then never mentioned it again.  Since you mention this though, I'm going to do some further research...might lead somewhere.

Have you ever heard of that downward eye movement?  Maybe there's an official name for it.

Thank you again...sorry for the long ranty post

[LivingInHope]

Here is a very active forum- have you tried your post on there as well?
http://www.medhelp.org/forums/Chiari-Malformation/show/257

They also have info on Chiari's here on medhelp- which you may already have seen at this link:
http://www.medhelp.org/health_pages/Neurological-Disorders/What-is-Chiari-Malformation/show/125?cid=186

I was tested for Chiari's after someone on a forum suggested it to me and a doctor agreed to order an MRI but it came back I didn't have that malformation.  

I recommend you show your neurologist your radiologist reports, where it says possible Chiari's, 4 mm Chiari's- and if your MRI was not done on the latest 3T MRI machine, which has a stronger magnet (3 Tesla) and is supposed to show more detail, and since your Chiari's malformation is so small, you might ask if he would be willing to order another MRI if you could get it on one of these latest machines which could be important with your malformation possibility.

In addition, I would ask the doctor to explain why your CSF flow study demonstrated  diminished cerebrospinal flow.  I'd ask what is the reason for it, if not Chiari's and is there anything that can be done about it.  It might just be your doctor was in a hurry the second time and didn't remember all the details of your case- it sounds like he might be worth another chance, based on your first visit.  

Your nystagmus- did it just develop in recent months?  If so, this would be a very important thing to bring up to your neurologist (see PM for more info).

Also, if you are experiencing any endocrine pituitary related symptoms not related to your thyroid, which you said you had tested, a pituitary tumor can cause a lot of problems, including headache and is often not seen on a general MRI of the brain, but has to be looked at separately.  I also learned after a radiologist saying there may be a small pineal cyst in my own head, that if you have one of those over 5 mm, that can cause headaches.  The pineal gland is even smaller than the pituitary!

But when I look at Chiari symptoms on that link I gave you from medhelp, it sounds like a lot of your symptoms are listed there and I'd encourage you to share on medhelp's forum, because there are people there dealing with that and some of them would know a lot more than I do and they might be of help.

[jenshead]

Thank you for your reply and thank you for the abundance of information.  Here are the tests I've had done.  Results were normal unless otherwise indicated.

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, nystagmus, don't know what else), eye exam (optometrist and ophthalmologist), a number of balance tests performed by a local balance center

The Chiari Malformation and diminished CSF flow have been dismissed by a few different doctors.  I have done a lot of research on it and while it fits, I want a professional to say (confidently) yes or no to it.  A neurosurgeon told me there's a 50/50 chance that it is my problem...not very good odds!  I very much wish a dr would at least keep an eye on it.  I've posted this to see if there's any other things matching my symptoms though.

I don't have blind spots...just the eye strain, problems reading, etc. I also don't get pain behind my eyes, just strain which is soon followed by increased pain elsewhere in my head (back,sides).  They did test my blood pressure in all of the different positions but no one said anything about it.

I'm on my 3rd neurologist :( and this last one I travel an hour to see.  He's the best so far but I feel like he has given up (after 2 appointments!).  The first neurologist was useless - not even worth mentioning.  The 2nd said migraines and isn't open to discussion.  This 3rd one initially said migraines would be a good fit if they had started before less severely but that this presentation of sudden symptoms is very odd.  At the end of the appointment he said he didn't know what was wrong with me but would try to figure it out.  Then, during our 2nd appointment he said definitely migraines...I have no idea what changed his mind...I didn't come in with any new info for him.

Let me know if you have any further input based on the tests I've had done.

Thanks!

[LivingInHope]

With your headaches and blind spots in vision did either of the neurologists order a cat scan or MRI of the brain?  How about imaging of the neck?   Did either of them check to see if you were iron deficient, which can cause headache and dizziness?  If something is affecting your neck, that is part of your vestibular system which helps with your balance.  Did your opthamologist perform a field of vison test?  

I have chronic migraines- they became chronic in 1996.  They can get worse when you stand versus lying down- in my case now, I have been diagnosed with an orthostatic intolerance condition called postural orthostatic tachycardia syndrome.  Since your symptoms can get better laying and worse standing gradually, has anyone tried taking your blood pressure and pulse rates laying then standing?  If so, with what results?

You say base of neck- this may even be a muscular component to your headache (though they should image to look for anatomical abnormalities).  Spinal headaches an be very severe as well and I think they should look for any possible cord or nerve encroachment in your neck, particularly when symptoms increase when you turn your head.  The tingling in your face could be nerve related.  I've gotten little tingling areas in my head before and asked a neurologist I had what it was and he said it was muscle spasms causing it.  

The right-sided headache part- typically a migraine will attack one side of the head or the other, though sometimes it can be bi-lateral in nature.  It usually involves pain behind the eye on the affected side too.  I met someone who had both cluster and migraine headaches and his eyes would water from the pain.

Seeing lights or other visual disturbances can happen prior to what is known as a "classic" migraine headache.  Ocular migraines can happen where visual disturbance can happen even without the ensuing migraine headache.

I often describe a number of my migraines as surging.  They don't typically throb constantly.  The bigger pain can come in surges.

Bottom line- sounds like you are not getting the appropriate diagnostic testing to search for the source of your headaches, if one can be found if they have diagnosed you without sufficient testing.  So, if possible, I'd recommend finding a new neurologist who cares more about their patients.