New New New :(

Hello all,

this is my first support group for this, i was recently diagnosed and it seems like every day im getting worse and worse :( ive suffered from migraines since i was 7 yrs old so 20 yrs but recently the last few months they have gotten worse, waking me up blind hearing my heart pounding in my head and like a helecopter by my ear... i thought i was going crazy, until i went and saw my headache dr and he just kept saying mmmhmmm yup yes yeah mmmhm and then scared the **** out of me by saying you have Pseudotumor right infront of my 6 yr old daughter who heard tumor and started bawling especially when he said "we need to get you to a eye specialist and a spinal tap and a mri and fast because you could go blind" i do not ever want to relive that day...
ive had my Mri and ive seen the retna specialist i indeed have IH :(

i just started diamox a few days ago and its only makes me feel worse, my eyes are killing me and im honestly scared to death of having to get surgery if it gets out of hand :(

and im afraid to tell my own mother i have this because when i made a comment that the dr thought i had it she made a joke about it :( no one understands the feelings im having, the pain i have and what im going through, what im scared of or how to help...

i hope i can get some good feedback and some good friends along with it, im so new im still learning new stuff about this, we are pretty sure ive been living with this for a few yrs, its just become a daily basis the last few months :(

thanks for whatever feedback you give...
amyamz101 amyamz101
26-30, F
5 Responses May 4, 2012

I can relate on others not understanding, i was diagnosed in April and it was scary but glad to have answers. My vision comes and goes and i am on lasix as i cant tolerate the Diamox due to kidney disease. Hope you get relief soon.

I was diagnosed with IIH last year, after serveral lumber punctures and scans etc, and I now take Diamox. I find going for a brisk walk or speed walking on a treadmill helps with circulation and helps my headache. I was not a big drinker of alcohol prior to IIH, perhaps a glass or two of wine a month, but now I don't have any alcohol as it makes my headache worse as pressure increases. I also cut down my intake of caffeine, and drink mostly water, and most of the time my headache is better although every few months it flares up and I need a lumber puncture to relieve the pressure. It is frustrating that there doesn't seem to be enough knowledge about this condition, in general, with many Dr's and there doesn't seem to be a neurologist who actually specialises in IIH, as they do with other conditions and I have asked them to consider if they will nominate a Dr to specialise in my country. I find it is a very frustrating condition, with a roundabout of pressure pain, to feel better, then be in extreme pain, then feel better again and so on.. the condition definitely needs more reasearch, and a better understanding of the condition and what the patient is experiencing.

I recommend you finding a specialist that you feel good about and feel they are being your biggest advocate. Believe me, they are hard to find! I probably went to 6 or more before I found one. I knew he was the right one when he told me, we can get you referred to a Neurosurgeon and get a LP shunt placed. It's been over 14 yrs ago and I haven't had any trouble since the shunt was placed. Finding the right doctor who fights for you, is the hardest part!

I had surgery last year and I can honestly say its the best thing I have done since being diagnosed in 2006.... I'm now off the diamox and my headaches are rare. I'm currentlywriting this sitting at the hospital waiting 4 a follow up appointment n I may never have to come back ( fingers crossed) <br />
Don't worry about a thing it's all manageable.<br />
Take care x

It's a lifelong disease, my new wife and I spent last Christmas in the hospital when her vision got so bad she was referred to the ER . We thought it was just headaches, but she was diagnosed with the disease. It's an adjustment but stick with the diamox and be sure to take it morning and night or whatever your neuro suggests! It's manageable !