hi all. i'm new here and i'm really glad I found this forum. this all started in the middle of January. Basically one day I woke up feeling some pressure on the top of my head and some pressure on the top of my eyes. Everyone kept saying it was because I have tight muscles in my neck and that I should just see a chiropractor. This was on a Thursday. By Sunday I woke up with the worst headache I've ever had. Also I was seeing everything in doubles. Complete perfect doubles. Side by side doubles. That's when I went to go see my primary dr. She told me that the right side of my face looked swollen and my sinuses were inflamed so it was probably a nasty roaring sinus infection. Took the antibiotics for a week. Suffered through the endless migraines that entire week. Finished the meds and woke up a week later with my left eye completely turned in towards my nose.

Now I've never had a medical problem in my life. When you wake up one day and your eye is turned in and you have to wear an eye patch there is nothing scarier. So I went to an eye doctor. He checked behind my eyes, did a field of vision test and believe it or not everything was stiff normal. He send me to a neurologist. By this point the headaches are so bad and the double vision is so bad I can't drive, I can't go to work, I can barely get up. The neurologist is convinced that it's some auto immune virus probably some rare mutation of Miller-Fisher and it's going to cycle its way out and nothing can be done. Just wait. She decided to run some extensive blood work and send me for an MRI with and without contrast for my brain and optic nerve. This was a Friday. The MRI was Wed. On Sunday my mom raced me to the ER. For 3 1\2 weeks i'm getting blinding headaches and seeing doubles and no one seems to know why. The docs at the ER were clearly concerned I had a tumor or mini stroke or bleeding aneurism. So I got CAT scans. EVERYTHING came back normal. MRI also came back normal. Blood work negative for all these viruses this lady thought I had. So we waited. MY eye straightened itself out. The headaches slowly started getting less severe. I thought I was getting better.

We found a neuro opthomologist and had made an appointment with him back when everything was at the worst. It took 2 months for us to get an appointment. So this is not 3 months after I first got sick. I was feeling better and decided not to go. But my mom MADE me. God bless mothers. I'd probably be blind without her because within 5 minutes of seeing me this amazing dr declares that both my optic nerves are swollen to almost twice their normal size. HE automatically says pseudotumor cerebri and sends me back to my neurologist for the spinal tap. When I scheduled it with her and she heard his diagnosis I can picture the look on her face. That "oh crap I didn't even think of that". Can't really blame her. Other than fitting the age group I'm not over weight or anything that would make her think PTC.. oh other that EVERY SINGLE symptom that comes with it... haha

Anyway the spinal tap was ok. my pressure was at about 31 ccs of spinal fluid. unfortunately the hole didn't close right away so on top of draining 21 ccs of fluid, being on 500 mg's 2x a day on Diamox, and the fluid leaking out of the hole, I started having spinal headaches. These were so bad I missed the migraines I had before. I would have traded in a heartbeat. So they rushed me back to the ER and I had a blood patch. took about 12 hours but I felt instant relief and have felt better since. Well except the side effects of the Diamox. The tingling and the nausea and the grogginess. But I guess better that than blind or dead right?

Sorry for the lengthy post... but I had 3 1\2 months of pure joy to share.

Moral of the story: Always listen to mom. Even when you reach 29 she still knows more than you do

I do have a question. I'm on 500 mg od Diamox twice a day. The side effects are awful. I can deal with the tingling and the change of taste but i'm concerned about the grogginess and loss of energy. I feel lethargic, especially the first few hours after I take it. I drive 30 miles to work and it's scary sometimes. At night it causes me to wake up every few hours and most morning I wake up with a headache that almost feels like a hang over. Does anyone know if your body adjusts to it? I've been on this now for about 3 weeks and where the PTC symptoms are better the side effects of the Diamox aren't. Any thoughts?

Gorga14,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Glad the doctors have found out the problem. And yes we are always suppose to listen to our moms.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.