My endocrinologist is 99% sure I have glucocorticoid resistance, which has caused my pituitary gland to swell so much that it's almost touching my left optic nerve.
It will probably help if you have some background info as to why that's relevant. In November of 2009, I was a sophomore in college and was in choir and doing well in my studies. However, I had a cyst on my hard pallet near the V2 division of the trigeminal nerve. I had to have the cyst removed as it was painful and very swollen, and the surgeon said he would have to remove that part of the nerve, but it would grow back. I had to have that surgery three time, and true to his word, the nerve grew back every time. I still have that cyst but am wary of having it removed.
Around that time, I got very sick with an unconfirmed case of H1N1, and after that I started having massive headaches that would last no more than 30 seconds. I also started having strange experiences during choir concerts where I would be standing and singing and then I would feel complete and utter dread. My left hand would grab my skirt and everything would go all yellow, and the next thing I knew, the girls around me were holding me up to keep me from falling off the risers.
A couple months later, I saw a neurologist for the headaches and he diagnosed me with icepick headaches, a type of migraine. I casually mentioned the things that were happening during the concerts and he told me they sounded like seizures so he ordered an ambulatory EEG. Unfortunately, it wouldn't be ready for two weeks.
At about the same time, my boyfriend broke up with me and I started having pyschogenic non-epileptic seizures because of the stress of midterms and the heartbreak of being broken up with. When I finally got the EEG, I only had the pseudoseizures and none of the other attacks. I also had an MRI. Of course, neither test showed any abnormalities, so I was diagnosed with PNES and sent away. As a parting comment, the neurologist said my pituitary gland was a little too big and I should see an endocrinologist.
I saw one endocrinologist who wasn't very effective, and so we asked for a second opinion after months of no results. He had me take another MRI and the gland was even more swollen. No tumor, though, and my blood and urine tests suggested glucocorticoid resistance. He put me on dexamethasone and the physical symptoms (hirsutism, male pattern baldness and others) have been diminishing.
We were hoping the headaches (which I still have every single day) were caused by the swelling in my brain, but after a month of taking dexamenthasone they haven't even diminished a little bit. Nor have those strange attacks. I have them once every 1 to 3 months.
The attacks are always the same: unilateral automatisms on the left side, partial consciousness impairment, elevated heart rate, feeling of dread, with the attack lasting only about 30 seconds to a minute, but with post-ictal grogginess lasting an hour or more. I am currently on Neurontin (for the headaches), Tegretol (for the seizures), Dexamethasone (for the GCR) and will be on Sulfamethoxasole for the next three months for a persistent staph infection.
My question is: Could the seizures and headaches have been caused by the enlarged pituitary gland, even though they continue to happen despite the treatment for the swelling?