My Journey with Idiopathic Intracranial Hypertension

My life was flipped upside down June 29th 2018 this year, a regualr eye doctor visit turned into so much more in 24 hrs, im going share this with you lovely writers.

Idiopathic Intracranial Hypertension

a.k.a Psuedotumor Cerebri 

Ill go ahead and start from the being. Around March 2018 i noticed that i was starting to see blurry through my new glasses i had just gotten around Dec 2017. I figured oh well i may need a new prescription ill just wait till my yearly check up can be done. Well June came around and it was getting worse so i got a referral to an eye doctor. 

June 28th 2018 i went in to see an Ophthalmologist, for those not sure what this type of doc does, its that same as an Optometrist they just deal more with eye diseases like Glaucoma or cataracts etc., they did my eye exam, it showed my vision in my left eye was 20/400... that is very severe visual impairment. I had 20/20 7 weeks before so this was a shock to me, they ended up doing a Goldman visual field test to check my peripherals and to check for blind spots and did pictures of my Optic nerves.

after 2 1/2 hrs at the eye doc with 3 kids in tow, i was told my Optic nerves in the back of my eyes were very swollen and the only thing they could think of was a tumor sitting on my brain compressing the nerves. They told me there was a long list of things that could cause this but they were sending me to the hospital to get and emergency MRI scan. At this point i was just not sure what to think.

At the hospital i was given my arm band and immediately taken back to a room soon as i arrived. I talked to the RN on call and they got an IV in just in case, took blood, and set my MRI up. MRI came back clean which was great!! But there was still the question, Why are my optic nerves so swollen?? Then the doc came back to talk to me and told me the on call Neurologist wanted me to get a Lumbar Puncture..... lol. yea i laughed when they told me that and was like great.... my bf went home with my girls and i laid on the gurney and had a needle shoved into my spinal cavity.... My opening pressure for my CSF (Cerebral Spinal Fluid) was 28. for any given person or baby an opening pressure for anyone is between 15-20. so mine was obviously high.

they immediately put me on a drug called  Acetazolamide 250mg twice a day. 

 i seen my Ophthalmologist that next morning. He officially DX me with Idiopathic Intracranial Hypertension, A very rare brain disease that affects only 1 in 100,000 people in the US. only about 30,000+ ppl have it, And my case is very uncommon as it usually affects women who are obese. of child bearing age, between the ages of 20-37. i am not obese i am 5'2'' 117lbs, i have 3 children and my youngest is 2 1/2.

everything happened soooo fast in those 24 hrs.... now its Nov 2018 and since then my life has been crazy. i do not know what my future holds as there is NO CURE for IIH as of now. I am going blind in my left eye because of it. i do not wish this disease on anyone... it is very defeating. 

Oct 22nd i under went my first medical procedure for my disease, a Cerebral Anigogram with dural sinus stenting. i now have 1 stent in my right transverse sinus in my brain. i have had 2 MRI scans, 1 CT scan, and my 2nd MRV scan is coming up, ive had 2 LPs done, blood work, i now see 3 different nuero specialists. 

the ONLY thing that keeps me going despite everything thats happened is my babies!! they are my motivation and world. plus all my other medical issues im still here fighting and going =D one day i hope a cure is found, till then its medication till my VP shunt surgery in Feb 2019.

PLEASE if you have any questions feel free to ask, i love to educate people on this rare disease. 

Author's Note

if any words are miss spelled i apologize as my vision is not the greatest!