Beginning A New Adventure in the Life of Me
 

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 ~*~

Pseudotumor Cerebri
 

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.

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.

Great to meet you!!
 

:Wave-Hello: 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. :smileypray:

Darlene :hug:

midnight sun
 

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 :grouphug:

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 ~*~

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

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! :hug:

~*~ Midnight Sun ~*~

Try again
 

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.

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

I'm not certain why you came to the conclusion this is the wrone place, but I too enjoyed your humor and writing style, empathize with you and hope you find some resolution.

My best,

Jon

Hi Jon,

Mainly because I have posted to the other section and nobody has responded. What I have is rare (figures huh?) and so there is nobody I can ask advice to, or ask about meds or side effects or how to handle things.

~*~ Midnight Sun ~*~

Don't write us off just now, it is sometimes nice to have an unconnected person to chat too, about fears, about pain, about life in general.
There are quite a few people who have un diagnosed issues, they don't have a section to belong to either, or like me have an array and nip between boards.
I hope you find some answers, I have a brain injury and it was a very scary time. I found it helpful to chat to others with brain injury even though we all acquired them by different means, stroke, infections, trauma, hypoxia, hydrocephalus etc.
Sometimes it's good to have a place just to vent.
You never know, there maybe someone else join who could use your experience!

I would like to offer a suggestion about posting.

Many people find our forums here by posting a keyword into Google or another engine, on their topic.

So selecting a title for a medical question, that is keyword sensitive will bring more viewers.

This title here while very creative, does not have Pseudotumor in the title. Other patients with pseudotumor would use that term to Google to find others and support.

To illustrate: One of my threads here:
http://neurotalk.psychcentral.com/thread1138.html

I titled it "Magnesium information" and look at the activity on that thread. Granted some are automated bots but there are 396
replies to the conversation, going back many years.

When we first started here, our Admin, DocJohn, suggested,
we title our threads in a way to bring in people. This was his suggestion back then, and it still holds today as very useful.

Thanks for the info!

I have a post up entitled 'Pseudotumor Cerebri' in the General Health Conditions and Rare Disorders forum (just a short post... I didn't run tangent on it, I promise!) I posted it at the end of last month. This lovely rambling threat is just my introduction :)

~*~ Midnight Sun ~*~

Pseudotumor is not a common disorder. So you should be patient
waiting for replies.

Try another post in that forum, with a title like:
Symptoms of Pseudotumor cerebri (intracranial hypertension).

This might draw more people to post since it has 3 good keywords.

Hi Midnight Sun,

My first Post concerned my sudden onset double vision caused by a brain lesion in the occipital region of my brain. While I have multiple other issues, I have never come across anyone else here with this initial problem.

Yet I can sympathise with others who have vision issues and with my other issues - and the Social aspect of this Forum - I have gone on, within my limitations, to participate and to make real friendships. Do not think you are tied to your condition.

I hope you are patient and that you receive the answers you are looking for.

Dave.

Alas I have come back here after my pathetic plea for help/an ear has fallen flat in the other forum. Does anyone know of any other support sites? I'm really stressing out (more gray hair...), and getting upset especially since I have now recently found out I'm allergic to my meds and the next step may be brain surgery. I just want someone to talk to, to get opinions on symptoms and to be there when I need support (handling this all on my own... a nervous breakdown is in the near future I'm thinking).

Thanks.

~*~ Midnight Sun ~*~

These links might be worth checking out;

http://www.dailystrength.org/c/Psued.../support-group

http://www.waisman.wisc.edu/kennedy/lib_pc.html

Help seeking help
 

I see Kiwi has presented some posts that I hope will be what you are seeking. If you are using the search function here, you might try searching by symptom. I remember the urgent need to match up symptoms. To find someone to help you walk the road in front of you. I can only speak for my self but even if I can't offer any usefull technical "been there done that" advice I hope you keep searching with us and talking with us, I'm sorry-me. Who knows, your primary symptom may be the same only in a less rare condition. Good Luck, Ken in Texas.

Right place
 

Hello there .
I identified with your fears and apprehensions . Sometimes , banging your head against a closing door is mightily frustrating.
I too come from a dislocated family , if I can put it that way. I am also by nature a retiring type who has always struggled to interact with others . This probably relates to the compounding of my probems by the attitudes and actions of others.
You are an amusing person and deserve to share your humour . It would be a shame to hide all that good **** under a bushel .I speak from experience.

hello
i hope one of the test you got was for a flow study. they thought i had pseudotumor cerebri as well until flow study and contrast dye MRI showed aqueduct stenosis.
if after spinal tap you had some relief from your symptoms then a shunt or ETV may be of some help.