My Battle With Psuedotumor Cerebri

This was my final in editing. I put it together in about 3 days two weeks out of brain surgery. This news package allowed me to pass editing despite missing much of the quarter so I was very excited.

To all of you out there suffering with Pseudotumor Cerebri I would like to send you this message. "Never Give up, Keep on Fighting"

Throughout my struggle I have found several communities that have helped me to cope with my ever growing symptoms.

http://intracranialhypertension.yuku.com/
Is a support forum with posts by real people just like us suffering through pseudotumor.

http://www.invisibledisabilities.org/
The invisible disabilites advocates offer advice and support to those who suffer from invisible diseases. "But You Don't look sick"

http://www.ihrfoundation.org/
The Intracranial Hypertension Research Foundation researches this rare disease. Here you can regegister your illness and submit medical records to help research. With our help new answers can be found.

Category:

People & Blogs

Tags:

• brittydragon
• pseudotumor cerebri

[maryamhosseinighomi]

what were your reactions to diamox? i think i may be as well im having strong adverse reactions but the neuroopthamologist said to stay on it to keep the pressure down to preserve my eyesight. i have to see a neurosurgeon soon. everything got really bad after i was upped on my dosage of diamox from 250mg BID to 500mg BID. i cant drive anymore bc i forget where i am going. i am going tohave to leave my job. its ruining my life. i want my life back

[Brittydragon]

@maryamhosseinighomi Hives and my airway swelled. I am allergic to it because I am allergic to Sulfa drugs

[maryamhosseinighomi]

how are you doing now? are you ok?

[Brittydragon]

@maryamhosseinighomi I have been doing really shitty. Hence no new IH videos. I haven't felt up to making anything awareness wise and as far as talking to the camera about IH, well there is pretty much no change. I live every day in hellish pain, exhaustion, dizziness and confusion. Even my doctor has no hope I'll ever feel better

[maryamhosseinighomi]

@Brittydragon I feel ya, did you notice the confusion starting more after a particular med, lke diamox? this condition sucks. we're all in the same boat, we all feel like all drs are against us or cant/wont help us- well most of us.

[Brittydragon]

@maryamhosseinighomi More it got worse after each surgery. I am up to 8 now. I am allergic to diamox and all the other alternative meds haven't made a difference. So I have only shunts for treatments

[angeltoashs]

(2) all the while wondering if its a brain tumor or a pseudo. and hiding the random blindness is getting harder and its starting to threaten my job. i just wnat to know already! wish i had just gone to my eye dr in the first place because at least i would have known already. being told its either a brain tumor or a pseudo tumor then having to wait 2 weeks is not very good on the nerves. and being told it only happens in obese women ya i didnt think i was obese but thanks lol

[angeltoashs]

Iv been trying to find a dr to believe me that i get really bad headaches and random blindness since august! its ridiculous that after i finally find one and tell him im not leaving til i get a scan that now i have to wait two weeks to get the results, then who knows how long before i can see the dr again to get him to tell me the results. my eye dr said my optic nerve is swollen and if i hadnt gotten a scan yet he would have sent me straight to the hospital. so now i get to sit here and wait(1)

[ThePrincessnikki86]

Wow ur video is great, I've had ih for 2 years well be ,3 years in November 2012. I've been thru hell and back so no how u feel. U shud check out my video :)

[spanisheyesri]

@Brittydragon I agree with you on that score. They are there for when you can't get to your Dr. in an emergency situation. It was like that for me with my first bout with the kidney stones. I almost put my hand thru a window because I was in so much pain that I lashed out and that is what I hit. They told me that they would be in soon to take an x ray to see what was going on. They sometimes just do not get it. I have great empathy for what you went through.