Hi crystalee,

I'm sorry you are having such a hard time and not feeling well. I wish I could answer all your questions, but can't, because it is beyond the scope of an online question and answer community. A diagnosis can only be provided by a doctor who can review your medical history, your family's medical history, discuss your symptoms, and conduct a complete exam in person.

But I can give you some information on a few topics you had questions on, how does that sound?

First, if your doctor isn't listening to you and your concerns, it really is time for another opinion. You may want to think about seeing a Migraine specialist too. And here's the thing:  a neurologist may not be a board certificed doctor in headache medicine. He/she may be board certified in neurology, but there are only 290 board certified doctors in the US in headache medicine. When you get a chance, take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

We have information on IIH you can read about in these articles:  

Idiopathic Intracranial Hypertension (IIH) - The Basics and  

Headache Attributed to Idiopathic Intracranial Hypertension - The Basics  and 

The ONLY definitive way to diagnose pseudotumor cerebri. I'm surprised you haven't had a spinal tap at all for IIH....

Sinus issues are often confused with Migraine. During a Migraine attack, the trigeminal nerve (TN) becomes inflamed. The TN has three branches. One runs just above the eyebrows, one runs under the eyes - near the sinuses, and the third runs along the lower jaw. That's why Migraines can cause pain around the eyes, ears, sinsuses, and teeth. To see an illustration of the location of the TN, see Pathways of Migraine. And when you get a chance take a look at: Sinuses Giving You a Headache? It's Probably Migraine.

How many days a week do you take something to relieve these headaches? Taking Migraine abortive meds such as the triptans or ergotamines or any kind of pain medication -- prescription or over-the-counter -- more than two or three days a week can make matters worse by causing medication overuse headache (MOH), aka rebound. See Medication Overuse Headache - When the Remedy Backfires for more information on this.

I do wish I could give you more help, but the best thing is to see an expert, the Migraine specialist at this point. There is even one in Alabama - his name is in the link I gave you up above. 

Good luck

Nancy 

crystalee

8/24/11 5:40pm

I appreciate this very much Nancy.  I will check out the information you sent.  I have had many spinal taps, but I just won't return to the neuro surgeon since 2008. I even tried to switch neuro surgeons, LOL.  They told me I could not do that unless he retires or I move.  I do love my neuro and he's tried to do preventive therapy, but so far nothing has worked.  The sinus/migrane info. was really surprising.  My goodness it is exact to the T of where I hurt. I will have to add my cheekbones hurt too.  I take meds DAILY for headaches.  I know it isn't good and I was surprised to read about rebound headaches, but I just don't know if I can stand not trying to relieve some of the pain.  I guess I can try since it doesn't help anyway.  You were more helpful than you know.  Again, I do appreciate it and will check out the info.

Nancy Harris Bonk, Health Guide

8/25/11 11:52am

Hi there,

 

I'm glad you found the information helpful. Medication overuse is not fun and can a small subset of people can even get MOH from a tiny bit of caffeine (which in itself is a stimulant!!)  

 

It's really important, and much easier said than done, to have a good working relationship with our doctors. When one lives in daily chronic pain - it is exhausting.

 

Good luck and keep me posted, ok?

Nancy