[HiddenTalent]

So, not so sure about this whole idea of a support group but i need help. I was diagnosed with Psuedotumor last August, almost 8 months ago. Here's the story of that:
I went on a trip to Oregon with my son and my mom, we drove. We got back and at the time I was working at Sam's Club. I took off 1 extra day just so I could relax from vacation and possibly do some laundry since we camped for a week. Everything was fine.
The next day I started to get really sick, my ear hurt and I was getting a little dizzy. I didn't think anything of it. By the end of the day it got so bad with my ear hurting I was convinced that I had an ear infection. I went to the instacare. I was diagnosed there with labrynthitis, which if you dont know is very common in the older folk and basically an inner ear infection. There isn't really much that they will do for you in regards to antibiotics or anything. Good ole doc gave me some anti nausea pills to combat the dizziness.
I went home and started that regimine of taking pills and what not. So i missed a day of work so I could rest up, it was physically draining.
At this point I would love to give a shout out to my husband and his brother, thank god for them or my two and a half year old would have been lost. He is a momma's boy definately and was so confused on what in the world was going on.
So being the stubborn person I am, I decided to go to work the next day. The dizziness subsided enough to where I could drive safely. I also realized that if I closed one of my eyes that the other adjusted and I could see straight. Beings that I worked at the membership desk I was able to sit down quite a bit, thanks to my manager for not being rude about the chair. So I made it through the day but everyone kept asking if I was ok, guess I was really pale and looked like I was really sick.
After work at five all I wanted to do was sleep, and was able to without worries. It was about 11 at night when I got up I felt like I was dying. I had never been so uncomfortable in my life. My head hurt, I was spinning and I could barely open my eyes to see. I fought with Marc for about an hour about going to the hospital, it wasnt much of a fight from me but I didn't want to spend thousands of dollars on the hospital when there wasn't anything they could do for an inner ear infection.
I gave in, after getting to the hospital they gave me a ct scan to make sure that I didn't have any type of tumor/blockage from what I understood. They could have hammered a hole in my head and I would have felt that much better and not noticed. After about 2 hours of test the doctor came back into the room and said that she wanted to talk to me. Expecting the worst I asked her if I had an inoperable tumor LOL, she laughed and let me know that they didn't know what I had exactly. That they had run out of tests to see what was wrong with me.
She said that on the off chance that i consented that she would like to do a spinal tap to test some of my spinal fluid to double check for an infection or anything they could. At that point I didn't care, my head was going to explode and anything that they could do or did kind of didn't make a difference to me.
As they did the spinal tap and the fluid started to flow into the 'measurer' (lack of better medical terms for it) it quickly filled up and "squirted" out of the top. (or so I'm told) They filled up one and a half cups of spinal fluid and almost instantly I was able to see like regular and my headache was gone.
"they had never seen anything like this before" Gotta love that phrase. After waiting another 6 hours in the er, thankfully able to sleep, they diagnosed me with Psuedotumor.
I have gone through many tests and was able to control it on Acetazolomide, but I was ending up taking the maximum dose possible. But my doctor just ran tests on me and never followed through. I went for my MRI, Eye Exam, Theyroid check, etc. and nothing has shown up unusual. I haven't changed weights for over 3 years, not even slightly....I am overweight though, as you can see by my picture. So I just came here to vent about my feelings and possibly get some suggestions, that aren't medical correction for my weight problem. I have tried weightwatchers and that was unsuccessful.

[Darlene]

HiddenTalent,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Here are a great number of dear friends to listen when you are in need of ears. You will find out we are supportive and relaxing place.

Check into the following forum for some assistance:
Psuedotumor Cerebri:
http://neurotalk.psychcentral.com/forum2.html

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[Rrae]

Welcome to NT!

You've come to a great place for support and understanding!
People here are very friendly and it's the perfect place to vent all you want

That's quite a bad experience you've been through.
I'm not very familiar with your diagnosis I'm sorry to say. Is it anything similar to a CSF leak? The way you described the horrid headache and then immediate relief once they drained some of your spinal fluid made me think along those lines.

Make yourself right at home! Scroll through the forums and post anywhere you feel inclined. There's a little bit of something for everyone here at NT

Caring,
Rae