[Midnight_Sun]

Good evening everyone (or morning or afternoon I suppose... depending where you all are)!

Thirty years ago I was born a smurf; nice and blue with the umbilical around the neck. Pretty much ever since then it's been one thing after another. Nothing ever too terribly serious; a few broken bones here, a stitch or two there, some tonsils yanked out and a couple dozen bouts of chronic bronchitis to name a few.

But I guess it's been too long since my last medical crisis and my body felt it was time for new adventure. About two months ago I was living at my parents place in the near desolate province of Manitoba as I transitioned from going to school in Ontario to going to school in British Columbia. I began to hear my heart beat in my ear as a whooshing sound. 'Cool!' I thought (I'm not a bright person sometimes...), 'Now I can check my heart rate without having to hold my wrist!'. Now why this was a cool thing is beyond me, but as my memory serves me right, the 'cool' factor lasted approximately two days before I idly started thinking about stabbing myself in the ear with a pencil. I tried to go to a walk-in stupidly about two weeks before I knew I had to leave and got a 'huh... that's weird' from the doctor and a promise to try and set me up with a technician to get an ultrasound done on my neck.

No call came for this appointment and just as I was about to leave for BC, two other things began to happen that added to the mystery. I began to see flashing white lights in my right eye (these didn't bother me too much... sortta looked like one of those old TV's from when you're a kid that you gotta smack to make work right), and I'd get sudden bursts of pain in my lower neck. I joked with my best friend that it was a tumor which I named Fred and after getting an ear-full I left for BC for school.

Now came the fun part. New province. New city. New school. I knew nobody, and now added to that I was going completely insane with this increasingly loud whooshing in my ear. Finally after a week I convinced myself (quite an argument) to go to the walk-in. I was PETRIFIED that the doctor would think I'd gone mad, or just say they'd make an appointment which would never come. Well, she spoke with me for a few minutes, and I told her about the whooshing, and how much it was driving me crazy, and how I couldn't sleep at night... and then quickly went by the flashing eye and pain in the neck. But to my dismay (at the time), the eye thing was what caught her attention. She went out of the room after looking me over for several minutes and then came back saying she'd made me an emergency appointment with an ophthalmologist for that afternoon. I left angry and completely convinced that the doctor was confused on where my ears were. When I got to the next doctor I was brought in, given drops in my one eye to make it dilate (funny anecdote... I didn't actually know that's what it had done until I got home and looked in the mirror and in hindsight realized why all the people on the bus were giving me funny looks), and then given I believe it was three different tests on the eyes. A really good looking doctor then came in to talk to me. I knew that something was wrong when he showed me a picture of my eyeball on the computer screen and said 'this is your eye... now let me show you what a normal one looks like.'. He went on to tell me that my optic nerves were all swollen and he was worried about my eyesight. He wanted me to immediately see a neurologist.

SO... fast-forward a whole two days and I was called in to a hospital to get a thousand tests done on my eyes (okay... maybe just about 6), and then the next day I went to another hospital to get a CT scan and speak with the neurologist. When he came in and spoke to me, he first assured me that there was no brain tumors or clots (which is what the CT was looking for), but then he showed me a piece of paper. It was two bulls eye... one for my right eye and one for my left. The one for the right eye was completely blacked out all around it except for the center- the one for my left had only about a quarter of it blacked out. He told me that was my vision; that the pressure in my head right now was bad enough that I had already lost that much of my sight (it's mind blowing what your brain can compensate for!). He told me that it was pseudotumor cerebri; basically it acts like a brain tumor, smells like a brain tumor, walks like a brain tumor, but is really just a duck type thing. He said that we needed to work fast to help save my sight (at this point in the visit I was awkwardly winking at him as I was trying to see if I really had lost that much outta my right eye). The two methods are 1- weight loss, and 2- medication. And SURPRISE- in order to know how much meds to give, I needed a lumbar puncture. Right then. In the office. Que 35 minutes with a needle sticking out of my back. Apparently you want your opening pressure to be less than 25... mine was 34... which is bad. With those readings he said, he would normally put someone on 1 gram of Diamox a day, but because of my eye sight, he's giving me 1.5 grams a day. That, combined with my vigorously trying to shed some pounds (i'm not obese, but I'm defiantly in the 'put the cookie down!' area) is my attempt to control and 'cure' this.

I've come here because it's very hard to be somewhere new. Nobody but my friend in Ontario knows what is going on (I don't tell my family because... well... we're not exactly the Brady Bunch). And I am having all sorts of hard to deal with side effects from the meds but I refuse to stop. As well all this time attempting to deal with school and work. It gets to be a lot.

I'm REALLY sorry for writing so much. I'm a writer at heart and sometimes when I get started it's hard for me to stop. Thanks to all those who stuck through!

~*~ Midnight Sun ~*~

[Lara]

Hello and a very big welcome to the NeuroTalk Support Groups.
I enjoyed reading your post if you don't mind my saying that, especially considering all that you've been going through. You write very well. Just a pity it wasn't fiction for you is all. I'm really pleased that you got to see a doctor who figured out what was happening.

The best way to find other posts or threads concerning pseudotumor cerebri is to use the
Forum Search Feature

You could also post or check on the
General Health Conditions & Rare Disorders Forum

Let us know if you have any trouble navigating the site. I hope you're able to find those threads. They're scattered on many different forums. From memory there are a number of them here on the New Members Forum as well.

I'm sure you'll find support and information here.
take care.

[kiwi33]

Hi Midnight_Sun

Welcome to the community .

It sounds to me that you are getting good care for your pseudotumor cerebri. An IRL friend of mine was diagnosed with it and she responded well to Diamox - I hope that will be the case for you too.

All the best.

[Darlene]

Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

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

Darlene

[katmae]

Hello and welcome to the group I am sure you will find a lot of people here that can help you with any questions that you have

[Midnight_Sun]

Thanks everyone for the warm welcomes! Completely needed on cold mornings like this. Brrr.

I posted to the General Health Conditions & Rare Disorders forum last night but haven't gotten any bites yet. Hopefully soon! It would be nice to know I'm not as alone in all of this as I feel.

~*~ Midnight Sun ~*~

[Diandra]

Dear Midnight Sun,
What an incredibly frightening journey.
I hope your treatment is successful.
You are in my thoughts and prayers.
Diandra

[Midnight_Sun]

Evening all!

This, very sadly, doesn't seem to be the place for me to find help. Contrary to my annoyingly talkative and quirky personality online, I am very quiet in real life and don't much go for the interaction with my peers thing (especially in the new school in the new city in the new province).

So alas, I will slink away from NT with my tail tucked between my legs (no sexual innuendo implied) and do what I do best. Shine on alone in the dark.

It was great talking to the few of you who replied here!

~*~ Midnight Sun ~*~

[zkrp01]

Originally Posted by Midnight_Sun

Evening all!

This, very sadly, doesn't seem to be the place for me to find help. Contrary to my annoyingly talkative and quirky personality online, I am very quiet in real life and don't much go for the interaction with my peers thing (especially in the new school in the new city in the new province).

So alas, I will slink away from NT with my tail tucked between my legs (no sexual innuendo implied) and do what I do best. Shine on alone in the dark.

It was great talking to the few of you who replied here!

~*~ Midnight Sun ~*~

In all honesty your first post was so long that I was too tired to respond. If you could cut it down by about 75%, give the jist and see what happens. Respectfully yours Ken in Texas. P.S. I loved your humor.

[Midnight_Sun]

i'm sorry. as i said, this was the wrong place. sorry.