Hi my name is Julie, im a wife and a mother to a 5 year old boy. I am 26 years old and have been having headaches since i became pregnant almost 6 years ago. i thought it was that i needed glasses so i went and got an eye exam and yes i did need glasses but she also told me my optic nerves were swollen, but nothing to be alarmed about. Well Ive had headaches even after i got glasses but never thought about any other problems cause i was one of those that never wore my glasses when i was suppose to. Also never got a routine eye exam. This year in january or so, i started experiencing complete blindness in the mornings when i woke up, but then it would go away, every single day. stubborn me never had it checked out. until it started progressing into blurriness during day and random blinding during the days. Went to my primary doctor and she checked for diabetes and we ruled out that. Yes im over weight by alot! I know this lol. well i decided to go get an eye exam, thinking maybe i need to get stronger glasses, well yes i did BUT i told her all the symptoms i was having and when she looked into my eyes my optic nerves were extremely swollen and told me to have my doctor check into Pseurdotumor Cerbri (sp). I tried getting a hold of my doctor, but she is extremely hard to get a hold of, so while i waited for a call back i researched on my own and got so stressed out over it all. Finally she called me back and she told me she never heard of it and when she did her research she would call me back. I was so mad but you cant tell a doctor that you new more then them lol. well needless to say she called me back on Monday April 23 all frantic saying she needed to get me to a neurologist right away. 2 days later on the 25th that's were i ended up and 1 an 1/2 away from where i live. Did a CT scan (dnt have insurance or she wld have done a MRI) and that came back clean did a Spinal Tap and she cldnt believe the pressure measured( sorry i dnt remember the pressure measured it was all happening so fast that day) but needless to say i felt so much better 45 mins after. She started me on Diamox 1000mgs a day today is day 4 of taking it. Hoping it works but so far im having headaches all day. Sorry about rambling on and on, i get like that when im full of nerves. im glad i found this site to help me threw things cause i know that everyone here understands. Looking forward to hearing from everyone

Hi Julie and a warm welcome to our group. Our members are all very friendly and supportive and have a story very much like yours. We have lots of helpful information and posts, as well as booklets. We encourage you to keep a symptom log and also a medication log, which isn't just for your benefit, but your familys and your doctors.

Here is the link to Advocacy for Patients with Chronic Illness, Inc which you might also find helpful because they can tell you ;

How to get and keep health insurance.
How to get health insurance coverage for particular treatments, drugs, and/or therapies.
How to get private disability insurance coverage.

As well as other things you might need.

Other members might also be able to advise you on medical insurance etc from their own experiences.

We're here for you whether it be for advice, questions or even a rant. We like you to use your IIH voice.

Heidi

Thank you for the warm welcoming. i will surely look into this link you have provided so much

Hi Julie! Sorry I'm a little late sending you my welcome, but I'm glad you're here and look forward to getting to know you better. You'll find lots of great people here, and lots of great resources, too.

How are you making out so far with the Diamox? I have been on it since my diagnosis in November 2009 and have had pretty good success with it. I hope it will be the same for you!

BananasMom wrote:

Hi Julie! Sorry I'm a little late sending you my welcome, but I'm glad you're here and look forward to getting to know you better. You'll find lots of great people here, and lots of great resources, too.

How are you making out so far with the Diamox? I have been on it since my diagnosis in November 2009 and have had pretty good success with it. I hope it will be the same for you!

Thats ok well so far this is the 7th day on Diamox 1000mg todays the first day i didnt wake up with an extremely bad headache just a normal one. but my head feels pretty darn weird ? but im going to wait another 7 days give it 2 weeks then call my neuro and let her kno how im doing. Tryed printing out the symptom log but some reason it wont let me? Any chance i can find a different one? Thanks for the replie

Julie you can now download the symptom log in a different format. Any problems please let me know.

Heidi

oh Heidi !