HomeRegisterLog inFollow us on facebookFollow us on twitterFollow us on youtubeFollow us on LinkedinFollow us on PintrestContact usFeedback


Share  | 
 

 Julie Diagnosed April 25th 2012

View previous topic View next topic Go down 
AuthorMessage
Jewls27
Member
Member
avatar


PostSubject: Julie Diagnosed April 25th 2012   Sat Apr 28, 2012 3:45 pm

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
Back to top Go down
Heidi
Admin1
Admin1
avatar


PostSubject: Re: Julie Diagnosed April 25th 2012   Sat Apr 28, 2012 5:21 pm

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 hug
Back to top Go down
http://www.ihaveiih.com
Jewls27
Member
Member
avatar


PostSubject: Re: Julie Diagnosed April 25th 2012   Sun Apr 29, 2012 7:05 pm

Thank you for the warm welcoming. i will surely look into this link you have provided thank you so much Smile
Back to top Go down
BananasMom
Admin2
Admin2
avatar


PostSubject: Re: Julie Diagnosed April 25th 2012   Tue May 01, 2012 7:32 pm

Hi Julie! Very Happy 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!
Back to top Go down
Jewls27
Member
Member
avatar


PostSubject: Re: Julie Diagnosed April 25th 2012   Tue May 01, 2012 10:26 pm

@BananasMom wrote:
Hi Julie! Very Happy 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 Smile 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
Back to top Go down
Heidi
Admin1
Admin1
avatar


PostSubject: Re: Julie Diagnosed April 25th 2012   Tue May 01, 2012 11:54 pm

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

Heidi


Last edited by Heidi on Wed May 02, 2012 12:51 am; edited 1 time in total
Back to top Go down
http://www.ihaveiih.com
Jewls27
Member
Member
avatar


PostSubject: Re: Julie Diagnosed April 25th 2012   Wed May 02, 2012 12:51 am

oh thank you Heidi ! Very Happy
Back to top Go down
Sponsored content




PostSubject: Re: Julie Diagnosed April 25th 2012   

Back to top Go down
 

Julie Diagnosed April 25th 2012

View previous topic View next topic Back to top 

 Similar topics

+
Page 1 of 1

Permissions in this forum:You cannot reply to topics in this forum
www.ihaveiih.com :: Living with IIH ::   :: Women and IIH-
Jump to:  
DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.
Protected by Copyscape Web Copyright Protection Software
Top Disability Websites
Free forum | © phpBB | Free forum support | Contact | Report an abuse | Free forum