Chiari malformations...Pseudotumor Cerebri...or just plain migraines, still?

I'm still having the occasional headache episodes. For the past several years I have just been doing a prednisone taper (starting at 60mg and decreasing by 5mg per day for a total of 12 days) and this takes the migraine away. I do this on the third day of a migraine and they generally stay away for a month or more. I guess I've probably had one to three prednisone treatments per year for the past few years.


Last year I injured my neck (folding laundry on the Sabbath...that's my little joke, as if God punishes us like that. but really, I was just folding laundry, turning my head, and then it went into a spasm) and after a few weeks I still couldn't turn my head from side to side very well. I asked my doctor if there were any non-crazy chiropractors in our town. He gave me a name and I got brave and went.


I've always been skeptical of chiropractors. I tend to pass judgment on big claims like having one's allergies cured by having a spine adjustment or feeling energy and holding your allergen while bringing your left foot in and your left foot out and doing the hockey pokey until there's no allergen about...


So it was a leap, trusting my instinct to see a chiropractor, something my gut has told me for years but my physicians have shook their heads to the practice.


My neck did eventually heal, but the remarkable event happened when the chiropractor gave me a migraine during an adjustment. Before I left the office I mentioned my new symptoms of nausea and disorientation and he adjusted me once more and the symptoms cleared.


Remarkable. I thought if he could give and take away a migraine, perhaps he could take them away.  I began seeing him when I could, trying for the beginning of a migraine. Then when I did tapers I noticed the duration of my migraine symptoms shortened from having them the full two weeks of the taper to often finishing the last few days symptom-free.


This year I decided to omit the prednisone taper and just do the chiropractor adjustments. I made a deal with myself that I would try the adjustments for two weeks and then if I still wasn't better then I'd begin the prednisone. I believe I've gone all year, since January, without taking any prednisone. Which is incredible.


Though I am currently on my first dose this year. My chiropractor left town. I saw his previous partner. The first adjustment was fine but the second one left me worse. I went home feeling a rush of pressure, like fluid going from my neck to my head. The same head pain at the bottom-back of my head, nausea, etc. I went back to the chiropractor two hours later and he readjusted me. And then he said he did an adjustment that is supposed to increase CSF fluid flow to the brain. I believe that is what I was feeling--the fluid-pressure-rush feeling.


I went home with a horrible headache and it continued through the next day. While I was lying in bed I researched CSF pressure, headaches, along with the other symptoms. I stumbled upon Chiari malformation. That name was familiar to me because my little nephew had corrective surgery for this condition that limits CSF flow because of a blockage caused by dissention of the cerebellum into the foramen magnum of the skull.


Chiari malformations are three times more likely to occur with females. The mean (most common) average age of onset is twenty-five. I was twenty-seven when this all began. Activities like lifting heavy objects or straining cause an attack (which has been my trigger on multiple occasions: my mother still gets anxious anytime I start lifting something because of a rather horrible episode of vomiting and headache after lifting a potted plant for her). Tinnitis, headache at the back of the head, the list goes on and on of the similarities between this chiari thing and my headaches. What has always bothered me is that I was fine, perfectly fine. And then one day everything changed and not one doctor could explain why.


I'm a control freak. This health condition changed my life and has made me feel out of control of my body. Which then leads me on searches trying to make sense of it all on my own. Someday the world will understand these neurological conditions...until then I'm responsible for discovering my body's issues.


I saw my gynecologist before starting the prednisone to see if I could have him manipulate my hormones (I've strange menses) to get rid of the migraine. He urged me to take the prednisone and to definitely see the neurologist and ask him about the hormone changes with my headaches before we decide on anything. I discussed my idea of the chiari and he brought up another he wanted me to research (he printed off some credible material) before seeing the neurologist, on pseudotumor cerebri. Those seem to have a comorbidity, often occurring together.


This week I had my annual eye exam and I discussed with the optometrist this headache and he ruled out anything wrong with the nerves in my eyes (which happen with pseudotumor cerebri). It was timely to see him because the night before my headache was behind my left eye and get this: for several hours my very poor vision improved significantly in that left eye. The optometrist hadn't heard of that before and couldn't explain it. While it would be fantastic to have sustained improved vision, it actually scared me. But to soothe my (optical and anxious) nerves, my eye no longer has that intense pressure making me feel like it will pop out, and my vision is just as terrible as usual... 20/450 vision.


I see the neurologist tomorrow. I haven't seen one since 2008. I figure it's time. I have a few things I'm wondering about:
1. Are these actually migraines or was a diagnosis missed years ago that would explain this abrupt change?
2. Are there any new treatments I can try, instead of the prednisone? I'll keep doing the prednisone if it's the only choice, but I really don't feel it's a safe, long-term option.