- Posted February 28, 2014 by
Van Nuys, California
This iReport is part of an assignment:
Living with a rare disease?
How IIH Changed MY Life
Maybe someday life will be "normal" again. Maybe someday I will be "normal" again. Maybe the littlest task won't seem like climbing the highest mountain, maybe all of the things I took for granted will come back to me and I'll know to never take anything for granted again. See... I don't want a new house or a car or lots of money (tho that'd be nice), don't want the perfect Norman Rockwell life, don't wish for happiness or love or any of that. Just wanna feel normal again, wanna be able to chase my kids, or go for a long walk, or even laugh without it hurting or paying the price for it the next day..I have hope, and I try my best to take nothing for granted even though it hurts just to wake up in the morning..even if it's just watching the girls laugh or run or hearing about their day. maybe someday it will be different. I really have to believe it will..
I started getting bad headaches in 2005, They were bad headaches, migraines supposedly. I dealt with it for years.
I had my second daughter in 2008 and my third in 2010. I had daily headaches by 2010. I kept going and started taking imitrex injections which hurt like hell but were better than pain pills and violent vomiting.
The imitrex worked....sometimes...I worked really hard to pretend I was ok.
Wanted a change and became an in home care provider. Worked 24 hrs at a time and loved my job. My headaches changed around then. They stopped going away. The pain was insane, I'd go in the bathroom and cry at work. I'd get so naseous and dizzy and the room would be spinning.
At the end of jan 2013 I started blacking out while transferring my patient. I just said I didn't feel well but knew something was very wrong, I had a black spot in my vision. The pain was not something i could stand anymore. I went to er. I was told these were cluster headaches and was doped up and sent home.
Went back to work a couple days later, the never ending headache still in full swing. On feb 8th 2013 I again felt strange, like I was drunk almost, the black spot was bigger and I was throwing up nonstop, was at work. Went to er again.
For 5 days I was subjected to pokes and machines and never ending tests. I remember being so sick in the MRI machine I had to make them stop. They tried all kinds of pain meds but this headache wouldn't stop. Various drs came in and said tests were mostly normal and it was stress and migraines but they wouldn't let me go home. I finally got annoyed and jokingly googled my symptoms...
There it was. IIH..I'd never heard of it before. asked the dr if I might have that and he said oh ya I was gonna test for that. My first lp was crazy, I was scared out of my mind, the person said no that's not right...called in a bunch of ppl and they all stood there talking. Opening pressure was 36 I think. They were all standing there talking and I had no idea what any of it meant..
I was taken back to my room and headache was gone within an hr, damn I felt great, better than I had in yrs..
So I was ready to run a marathon. My vision came back somewhat, my head stopped hurting. Mind you my health had never been great so all of a sudden I felt normal. Drs seemed to know nothing about my disease, explained nothing, answered no questions, nurse brought me giant horse pills, which I looked up online because no one wanted to tell me what it was(diomox) no plan was ever discussed, I thought I was cured.
Damn I was so wrong. 2 days after leaving hosp the forever headache returned, brought me to my knees literally.
No one had told me the magnitude of this disease.
So I was ok, denial was great, I tried to go back to work but couldn't make it even an hr, this wasn't going to affect me, I was always big and strong, almost 6 feet tall, and had been thru hell as a child and never cracked. I was a workaholic and my husband was a stay at home dad.
I'm admitting here that I had always been dramatic and kinda a hypochondriac so I thought maybe it was all in my head. The neuro opth actually knew what iih was and was answering questions, I asked if my girls were gonna get sick too and she just stopped talking, said I'm sorry, we just don't know. I felt everything inside me crumble, at that moment it was real, I could care less if I was sick but this was not ok.
She said I needed to go back to er for a lp. I was dangerously close to going blind. So I went, op was way high again. If you never had an iih headache you can never understand how appealing having a giant needle stuck into your spine can be. Was like the best thing since sliced bread. Felt great again but within a few hrs I got my first low pressure headache. WHOA! Stop this train I'm getting off.
Meanwhile the diomox was making me so nauseous, couldn't eat at all, couldn't even move for that matter, I lost the 10% of my body weight that was reccomended in that first couple weeks. Ok I'm cured right? WRONG.
I couldn't explain to anyone that this was no headache, this was something straight from the depths of hell. No one understood and the pain became so intense all I could do was scream and cry which made it so much worse. My kids were scared, and we were running out of money.
No one told me I was 1 in 100,000, I was made to feel almost as if it was all made up.
My primary dr was trying so hard to help, would listen to me cry and beg for help on phone, he understood but didn't know anything about iih, tho he started reading up on it.
I had my first Lp shunt surgery in March of 2013 it went very badly.
I know the pain took me to some deep dark horrible place that changed me for life.
I spent months completely in bed, my babies couldn't understand, my husband tried but it was taking it's toll. We made plans to move home to Ca and I just tried to keep myself together. I got so depressed. Spent my life sooooo dramatic, if I had a scrape I swore I needed stitches, now that I was really sick I struggled to get people to understand.
I couldn't accept that I was sick either and that this was my life. When u get something like this and there's no cure it's insane because with the treatment options you think something will make it better, not realizing that it's just a bandaid.
In the months following we became homeless, our government left me with 3 little girls to fend for myself because I was a few dollars over their limit for homeless services due to the social security that I worked for.
I had brain surgery, and another surgery to place a second LP shunt. I could go on forever about all of the medical stuff and how this disease has robbed me of everything I've ever known but what it comes down to is this:
I am 1 in 100,000. IIh has turned my life upside down. There is no cure because not many are looking. IIh is a debilitating disease that results in permanent disability and blindness among other things. I was diagnosed a little over a year ago, This year I have had a brain surgery and 2 spinal surgeries, 8 revisions day after first shunt, a ton of spinal taps, hospitalizations, medications that made me so so sick, so many drs, mris, cts, and a million other tests, all to save my vision, I am still very sick, I have had an excruciating headache that rarely goes away for a year now. Sadly there are some that are a lot sicker than me, we are given very few options and doped up on narcotics to manage, which I can't tolerate, lots of us commit suicide to escape the pain. I remain hopeful, I refuse to give up and spend my days doing my best to be a mom for my girls and being an admin for a fb support group trying to help others like me...and those are my good days. There is no cure. Please help raise awareness!
My story can be followed on Facebook at:
For more information on IIH please visit