I am surprised and happy to find this group. I was just diagnosed in November 2012. I have had daily headaches since November 5th which lead to my diagnosis, I was lucky to be diagnosed quickly but I still don't have much of a treatment plan. I'm finally seeing my first Neuro OP on Friday, YAY! I'm hoping for some answers as I feel a little lost. I'm thankful for many message boards where i could find information about this disorder. The Neuro OP informed my primary care doctor that my BMI needs to go from 39 to 30 or below. Not an easy journey for me (around 85 pounds to loose) and I'm hoping I'll find relief before that much weight is lost because it's going to take me a while to loose that much. I'm on Diamox, 1000 mg a day. I think it might be helping a bit, but each day is different... I work full-time. My symptoms are - Daily headaches, neck and shoulder stiffness and pain, nausia, fatigue, vision is blurry and always changing, and memory issues.

Best Wishes to you all on your journey!

I was diagnosed with IIH back in 2005. I've got lots to lose, unfortunately and exercise is difficult with the headaches.

I have been recently diagnosed with IiH in January 2013. It started off with suddenly seeing black "spots" or dots on my left eye. I was sent to see a specialist because my blood pressure was normal. He diagnosed me with IiH and sent me to do a CT Scan to rule out tumor. He put me on Diamox 4 times a day, I never realized that my headaches, neck aches and pains could be related to my eyes. I'm being sent for an MRI at the end of this month, and have to lose minimum 23 pounds (or 5 % of my body weight) to see if it's getting better. The last few days I haven't been feeling the greatest, and I'm not sure if it has to do with the Diamox or that my eyes are getting worse.

Hey, my name is Christina. I was diagnosed with IIH on 8th January this year. I stopped smoking last November and started having these throbbing frontal headaches, went to see GP who advised my headaches could be due to stopping smoking. Late December after having ankle ligament reconstruction surgery I contracted pneumonia which then turned out to be viral meningitis.. after a week in hospital I was sent home. A short while later I developed diplopia (double vision) and had the worst headache I could imagine, I couldnt even lift my head from the pillow! Back to hospital I went!!
Had MRI and CT scan and finally a lumbar puncture was completed and I was diagnosed with IIH. I was given 500mg a day of Acetazolamide and told to rest. 3 months on I have had another 2 lumbar punctures to release the pressure and struggle to cope on a daily basis with tasks that used be normal to me. I want to lose weight to see if my IIH will go into remission, We can all beat this together!! Feel free to add me on MFP Hope you all are having a good day x

Hi. I'm Maria. I was diagnosed with IIH on July 21, 2014 after meeting with a Neuro Ophthalmologist in NY. The doctor kept asking if I got headaches and I said sometimes, but my main reason for going to him was because I lost vision upon standing up. Apparently, some medications I had previously been on could have been masking the headaches that tend to be associated with IIH. I've had three to four visual field tests, with each one my vision has decreased, both optic nerves have increased swelling and I am currently on 3000 mg of Diamox. I am now seeing a N-O at Johns Hopkins who has confirmed that I meet all the criteria for a Pseudotumor Cerebri and there are three ways to treat it. #1- Lose weight, at least 10% of my current weight, so about 19lbs or more, #2- Medication, continue to take Diamox, apparently the highest dosage for Diamox is 4000mg, he stated that if 3000 mg doesn't work there really isn't a point to increase it to 4000mg and #3- Surgery, an Optic Nerve Sheath Fenestration - he didn't go into the details as he saw I got pretty nervous. He said if I'm not proactive about following up and losing the weight that it's very likely I could lose my vision. I'm seeing him again on the 8th of September at which time he will see if the Diamox has helped reduce the swelling of my optic nerves. He also said that a decision will be made within the next few weeks in regards to next steps, surgery as if we wait too long I could lose vision. So that's where I am at.
I'm glad I found this group because I don't know who to talk to about this stuff. My husband is probably sick of all my questions (He probably isn't but I always worry that he is), I was let go from my job back in March and in a way I see it was a blessing in disguise because I would have never been able to take the time off to take care of myself while working. I am finding it difficult to exercise while on the Diamox, as I feel very tired and things I used to be able to do easily, I am having a difficult time with... example, I live on the third floor of our apartment complex and used to walk up the stairs without a problem, even carrying three to four grocery bags... now without carrying anything, I must hold the hand rails and stop every four or five steps and I am still out of breathe by the time I get to each landing. Any suggestions?
Well, thank you for creating this group! I hope all the members are doing okay and pushing through.