I would like to say hello and that I love what your little one said about his tooth fairy money ! So precious !

I can see where you are coming from . However , I had many weird little symptoms that I just chalked up to being neurotic before they found the paps .
After I got the diagnosis the symptoms I had before made sense when I never gave them much thought . I have always been clumsy and off balance feeling . I have had migraines for twenty years which may have something to do with it . I blacked out twice in my early twenties and no explanation was ever found ..I am 39 now . It's amazing what they can discover just from looking at the back of your eye ! I had never had it done in my life ! I finally went because my vision was being weird and the opthalmologist found the paps . I had been seeing a neurologist for my headaches ( they are not as bad as traditional PTC headaches ) and he had never seen a clue !
I have been on Diamox since August and though my eyes have gotten better , my pressure symptoms seem to have gotten a little worse . I am starting an increase in Diamox tomorrow ( from 1000 per day to 1500 per day) and I am nervous . Like you , I was so exhausted and depleted during the first 7-8 weeks of Diamox and I just hope that doesn't happen again ...it's awful .

Thanks! My little ones are a crack up some times..the things that they say lol..

Wow there increasing ur meds fros 1000 to 1500? I wonder why they started me on the 2000 mg a day? No wonder why I was sick as a dog..I've been on now for two weeks and every now and then get the pressure feeling n my head so I'm wondering if the pills are even working! Or maybe its to soon to tell

Kphilips, yes, Diamox is known as the devils drug around here!
It does seem to take between 6-8 weeks for your body to adjust to the diamox, some people never get used to it
I was like a spaced out zombie while on it! I stuck it for two years and live in fear that I will be put back on it again.
My nureo took me off it in March as it was a) killing me and b) she felt my body needed a rest form it.
I came off all meds at the time , which took about a month to wean, but then, I was great. The hds didnt start again till May -June and have been increasing in intensity since then.
My next apt is in Jan and we will take it from there...

What I do find strange, and it has happened to me and others here,we all had symptoms but seemed to manage.Until , we got our diagnoses. Then all hell broke lose.

Was it, our bodies said," thank God, we dont have to be brave anymore!"or a pure coincidence, that we had come to the end of the road and just got the help in time?

I dont think we necessarily get worse as you asked . I think,as long as we are looking after ourselves and our eye sight, it can remain fairly stable.
My first year was pretty dramatic, as I almost lost my sight but since then , even with the shunt,the days are all pretty much the same.

Of course, I am much more relaxed as I know understand so much more of what is going on. In the beginning I was terrified. I have learned how to live with this and not fight it all the time. Kinda pointless, really.

I think acceptance is a big deal. Once you get there, things kind of fall in to place a lot easier. You learn how to adapt your life to suit. I still enjoy life, not like I did prior to being sick, but it still can be good, and normal for a lot of people.
Keep in mind, we here are the sick ones. There are hundreds and hundreds out there living life to the full. And some day soon, you will be to! Cath.

kphillips,
I was on it for a month and the side effects were too out of control and they took me off. I went on Topamax and it completely changed me. I felt so bad on that drug. I'm off it now and can deal better with the symptoms I have. Crappy stuff.
Theresa

Wow, they started you at 2000mg? I started at 500 and worked my way up to 1000. But, it sounds like you are doing really great on the medicine! It sounds like the dizziness and sickness were side effects from the medicine and not necessarily from the PTC. So, hopefully all that has stablized now.

I'm relatively new to this disease (diagnosed 6 months ago), but from what I have learned so far everyone's prognosis is different. There are many people who respond really well to treatment and even go into remission and are able to get off the diamox. There are some people on this site who were in remission for years and then it came back. I have even heard of others who have had their PTC resolve. Maybe you will be one of the lucky ones! Sounds like you're off to a great start!

Well I had my appt today a because of my op being high the doc is referring me to a nerusurgon to discuss a shunt! Wow this is happening so fast! That was the last thing I wanted but who does?? Well if I go this route at least it's in San fransico and they have good doctors over there!!

I had headaches for years before I was diagnosed, and I still have them now with medication. I was on Diamox after the diagnosis, gradual increase from 500 to 2000. Then, I switched to 200 mg Topamax after there wasn't enough improvement. I'm waiting now to see if the Topamax is working, if not, I'm going to try acupuncture and then Octreotide, and then last resort: lp shunt! I'm 18, way too young to be sticking all plastic tubes in my brain ;-)

Honestly, I felt horrible absolutely awful before I was diagnosed (vertigo, constant pain, nausea, tinnitus, etc), but once the medications were added... all of that remained constant and became more intense. On Diamox 2000 mg, I was always tingly and numb, dizzy, food tasted funny, and still had my headaches.

Why are they discussing a shunt so soon?? How bad are the paps?? My NS told me it takes at least 3 weeks for the meds to start working, and 6-8 to work at full capacity. Don't rush a decision unless you have to :-(

And also, I tend to think that this disease is so individualized.

Shunts make some people feel great and they rarely ever have problems, other people constantly get infections and need to have revisions, still have headaches, etc. You can't know until you get it and have lived with it.

We don't really get worse.. I think the worst part is figuring out a plan. Getting a doctor that doesn't think we're crazy, figuring out meds that work for us, getting better as soon as possible. Then is the maintenance, I guess.. I think it's called "remission"? For some people, this just goes away. Others will have it forever. Some people might not ever get it under control, I know mine has been uncontrolled since Day 1.

MC, I think you might be right. at my last NO appt I asked about "growing out of this" because I just recently turned 54.. I am way past childbearing age (which they tell me is unusual) but this is my second go-round with this.. so the Dr. said, some people don't grow out or age up - they have it forever, sometimes in remission sometimes with reoccurring symptoms here and there. He thinks I fit into that category.... I really hope he's wrong, but he's weaning me off Diamox and adding Topamax.. so we'll see.
As far as finally getting a diagnosis and feeling worse? i think for me I Finally had something to blame all the weird symptoms on and as I experienced each one it made it real as opposed to living in silence.. kinda like finally acknowledging the giant elephant in the room... :)