Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

I Have Pseudotumor Cerebri

A Neurological Disorder characterized by increased intracranial pressure 431 People

    Wow,,,, Really,,,, I Have Pseudotumor Cerebri!

    I am a 42 year old lady that was diagnosed after months of dizzy spells, vision issues, ear ringing, nausea, vomiting, slow to have an accurate thought, and crippling headaches!! I went to a neurologist who asked me if my headaches got worse when I laid down and they do. Thats...
    jerrynkara jerrynkara 41-45, F 3 Responses Jul 3, 2012

    Your Response

    Cancel

    Deja Vu !

    These past 3 weeks have been so hard for me. I have had PTC for 1 year now and these 3 weeks that just passed felt like I went back to the day I was in the hospital being diagnosed with PTC. 2 weeks ago on a Monday, I went to school like normally but I had to be dismissed early...
    Lisa20h Lisa20h 16-17 2 Responses Oct 17, 2013

    Your Response

    Cancel

    Last night 5/11/14 (approx 4 days

    after beginning Diamox after diagnosis, approcx 4 months since symptoms began), still no lumbar puncture has been done. I was awoken from a painful burning and tingling sensation in my left big toe. It was so severe i could not go back to sleep. I got up to use the restroom and...
    kughrin8 kughrin8 22-25, F 1 Response May 12

    Your Response

    Cancel

    Just found out about two weeks ago I have PTC.

    . I have been a nervous wreck since then. I had one failed attempt at a spinal tap now scheduled for another tomorrow at the hospital. They have to lay me on my stomach to insert the needle and then roll me. Which totally makes me nervous afraid I will go paralyzed ..
    cynthiashortridge cynthiashortridge 31-35, F 3 Responses May 14

    Your Response

    Cancel

    I was diagnosed in 2006.

    It started with a severe headache and they kept telling me it was just a headache and I need to learn to relax. However, the headache just kept getting worse and my eye felt like it was bulging. Then my vision started to go. It was like looking through a glass of water so I...
    curiousgirl1214 curiousgirl1214 26-30, F 4 Responses Jun 29

    Your Response

    Cancel

    Does It Get Any Easier??!

    Before I tell my story, I just have to ask, are there any of you out there with IIH who have symptoms so severe that you cannot function? Like can't work, go to school, hardly go ANYWHERE??? I'm worried that they still haven't found everything that's wrong with me so I'd like to...
    HopeWanted27 HopeWanted27 22-25 20 Responses Sep 29, 2010

    Your Response

    Cancel

    I Have Pseudotumor Ceribri/ Intercranial Hypertension

    My name is Katelin and I have Pseudotumor Ceribri, I was first diganosed when I was 13-years-old. SInce finding relief after about a year of having it then it has been back twice. I am now on my third time with it. It all started at a softball tournament when one morning I woke...
    KatelinMillikin KatelinMillikin 22-25, F Apr 30, 2013

    Your Response

    Cancel

    Do U Believe

    I've have had ptc since 2009 docs put me on methzolomide till it stop workn then i went thru surgery a PV shunt i lost some vision in left eye and all in right eye it scares me to death i just want to know if any one went or going thru this i even have so much brightness that i...
    Trillshelly2 Trillshelly2 46-50, F 2 Responses Aug 26, 2013

    Your Response

    Cancel

    Is PTC lifelong? I have not been diagnosed yet,

    but all of my symptoms point to PTC, I am waiting to see a specialist. I have had blood work and multiple MRIs, all coming out normal. I am frequently nauseous, have headaches, am dizzy, and my sight, speech and hearing is starting to become effected as well. I am 23 years...
    tcollier tcollier 22-25, F Aug 28

    Your Response

    Cancel

    Hello Everyone! I am 19 years old &just

    diagnosed with Ptc Dec 25 2013 I've been scared ever since than , I also have depression ,anxiety and ptsd which makes matters worse for me because im scared i try to keep an open mind about everything im just so confused as to why this has happened! I stopped taking my...
    Ganaye18 Ganaye18 18-21, F 4 Responses Jan 20

    Your Response

    Cancel

    I read so many entries from people

    that suffer from PTC, this website has helped me a lot . I also have a blogg all about PTC and my daily struggles Please check it out teenagedreamxo.blogspot.com
    Lisa20h Lisa20h 16-17 Dec 8, 2013

    Your Response

    Cancel

    Living With PTC

    Hello Everyone, My name is Courtney, I am 19 and i was diagnosed with Ptc at the end of 2011. The first sign I had was the ringing in the ears. This was really annoying, I went to the doctor about it and he had no idea what is was so he just gave me a script for ear drops...
    HappyDayss HappyDayss 18-21 1 Response Aug 31, 2013

    Your Response

    Cancel

    Feeling Blah

    At the beginning of this year I decided to go to the eye doc because my vision was just a little off and I was having pretty bad headaches frequently. When the eye doc saw me he told me that my optic disc was swollen and told me I would need to see my family doctor for further...
    chelle1980 chelle1980 31-35, F 3 Responses Aug 2, 2012

    Your Response

    Cancel

    What Just Happened?

    Hello! So I went to the eye doctor today and she told me she saw some swelling of my optic nerves and want to do a follow up next week. It seems like she's leaning towards a diagnosis of PCT. I'm only 18 but I was diagnosed with chronic migraines years ago and my eye sight has...
    jcrear18 jcrear18 18-21, F 3 Responses Nov 15, 2013

    Your Response

    Cancel

    VP Shunt

    is a VP shunt a good idea?
    ashlynrose2011 ashlynrose2011 18-21, F 1 Response Aug 16, 2013

    Your Response

    Cancel

    Rebuilding...

    Seven years ago I had an excellent life! Husband, kiddos, a wonderful home, career, the works! Then the headaches started. My husband deployed to Iraq leaving me with the full list of mom and dad duties as well as full time work and college. I figured it was just stress. My...
    WickedMelon WickedMelon 36-40 2 Responses Oct 9, 2013

    Your Response

    Cancel

    I Saw...rings...

    A few years ago, I experienced headaches; this was unusual because up until that point in time a rarely experienced headaches.  Then one day I started seeing "rings."  I later found out that these silvery-gray circles were refer to by medical professional as...
    fairplay1 fairplay1 41-45, F 4 Responses Jul 26, 2007

    Your Response

    Cancel

    i was diagnosed a few weeks ago.

    i went to see my eye dr because i was having difficulty seeing when i was working on the computer. he took pictures of my eyes and told me i needed to see a specialist as soon as possible. i got in to see a retina specialist a couple days later and by then my vision was super...
    kmd430 kmd430 31-35, F 2 Responses Jun 17

    Your Response

    Cancel

    I Struggle From Pseuotumor Cerebri

    Hi, the year of 2010 I had seen a neurologist because i was having vision changes and extreme headaches, they did an MRI and also send me to the University of Minnesota too see the eye doctor, everything looked okay, but i knew something wasn't right. In 2011 i started having...
    justbelieve93 justbelieve93 18-21, F 1 Response Mar 16, 2012

    Your Response

    Cancel

    Hello I am a 25 year old female recently

    diagnosis with this disease on October25 in the er and it was recently confirmed in the hospital after spending 7 days last week. This disease has effected my eyesight drastically. For about a year I was experiencing 12 hour headaches and I just thought it was due to stress from...
    directline35 directline35 26-30, F 4 Responses Dec 6, 2013

    Your Response

    Cancel

    I Have Pseudotumor Cerebri..

    I was told I had PTC at 15 years old, I am now 16 years old and one thing I can say is that its been very hard. It all started with headaches and then my eye turned inward and my vision became all blurry. I got rushed to the ER and i got my first LP and the level was 50 i was so...
    Lisa20h Lisa20h 16-17 Oct 3, 2013

    Your Response

    Cancel

    You Will Survive

    I will try to make it short since i was first diagnosed with pseudo tumor when i was 16 and i am now 37.  As the same as so many others, i was a teen it got further along with the headaches,vomiting,lose of vision before it was found because i didn't say anything to my mom.  I...
    tshafer3 tshafer3 36-40 3 Responses Jul 20, 2011

    Your Response

    Cancel

    Hi! I Just Want Some Answers!!

    I was diagnosed with PTC when I was 12, normal weight, very active. I am now 20 and I feel as if its just getting worse. I've had around 27 shunt surgeries ( 5 VP), AND close to 50 LPS. Im about to have to quit my job and get back on disability because I just cant hold up all...
    anc8469 anc8469 18-21, F 4 Responses Oct 28, 2013

    Your Response

    Cancel

    I was diagnosed at 16,

    I had an optic nerve sheath fenestration and I'm always in pain
    silverth0rn silverth0rn 18-21, F Apr 26

    Your Response

    Cancel

    Psuedotumor Cerebri

    My 6yo was recently diagnosed with this disorder her entering pressure was up to 49 and they drained it down to 13 through a LP. She currently takes diamox 250 mg 3 times per day. I Just dont understand why she got sick she has been completley healthy. This just came out of...
    splme22 splme22 36-40 2 Responses Nov 9, 2010

    Your Response

    Cancel

    I Have Pseudotumor Cerebri

    I was diagnosed with PTC Jan. 2010. I had had a headache for 2 weeks and went to the ER several times for some relief. Finally the last ER doctor sent me to a neurologist. After seeing him and the ophthalmologist they decided I had PTC. The started me on Diamox but my pressure...
    abowron8 abowron8 26-30, F 3 Responses Feb 19, 2010

    Your Response

    Cancel

    12 Yrs Old And I Have It

    I'm Meagan I have Pseudotumor Cerebri, and I'm only 12. I'm really young to be having this. But thisis extreamly rare for anybody like me. I hardly fit the critera. I'm 12, skinny, and well a girl. Nobody in my family has had it. I just came to me. I have had TWO spinal taps...
    MeaganEllis MeaganEllis 13-15 4 Responses May 3, 2012

    Your Response

    Cancel

    Yay! Another PTC Member!

    Hi, my name is Adriana and I'm 30 years old. Two weeks before my 30th birthday I went to the eye doctor because I though I needed new glasses since I was seeing blurry. There, the techs took pictures of my eyes and then they took me to a room to see the doctor. He came in and...
    Adriana9173 Adriana9173 31-35 4 Responses Nov 20, 2013

    Your Response

    Cancel

    I am 40 years old and was diagnosed 3 years ago.

    I have a VP shunt and a stint. I have been living in a nightmare for years, even before being diagnosed. I am physically and mentally tired. If there is anyone out there who would like to exchange emails and share some experiences or thoughts on this disorder i would love to...
    DaisyChain911 DaisyChain911 41-45, F 4 Responses Jan 13

    Your Response

    Cancel

    Trying to Understand?

    A year ago I had a severe migraine that lasted for two days.  I never get headaches so this was hard for me. After two days I had some severe head tremors,  numbness on the left side of my face, and vision problems.  I went through two neurologists and CAT scans...
    heatheriris heatheriris 36-40, F 2 Responses Oct 2, 2007

    Your Response

    Cancel

    I'm new to this! But I was diagnosed with PtC 3

    years ago. I'm 23 now. I've had headaches that have always been unbearable since I can remember. I went from doctor to doctor trying to get an answer as to why I was having so many headaches and no one could tell me why. Finally I found a doctor who cared about what was going on...
    Shelmash Shelmash 22-25, F Aug 19

    Your Response

    Cancel

    I Have Pseudotumor

    I was diagnosed with this a few weeks ago and has been hell ever since. I spent 3 night in the hospital. Had 4 mri, ct scan, spinal tap,eeg, and had to go back for a blood patch. I was put on medication that contains sulfa(which im allergic too) I ended up going into anaphylaxis...
    abksuperstar1 abksuperstar1 31-35, F Nov 30, 2013

    Your Response

    Cancel

    My Life With PTC

    I was diagnosed at the age of 16. I was a young, active happy person. Not overweight, just normal. After being diagnosed, my team of doctors at a children's hospital tried to control my symptoms with LPs for about 3 months. After realizing it wasn't working, I then had 3...
    jamisco jamisco 26-30, F 1 Response Nov 8, 2013

    Your Response

    Cancel

    I Have Pseudo And Im Petrified

    I was just diagnosed roughly 2 weeks ago with this dabilitating disease and I'm scared. I am 28 years old. Any advise anyone can give is so welcome. I will send you all my positive thoughts. Thank you so much.
    HRFitzG HRFitzG 26-30 4 Responses Nov 23, 2013

    Your Response

    Cancel

    Living With Ptc

    I was diagnosed at the age of 17 and have been living with this for 9 years now. In the begining I didn't realize what it really meant but after many ears and lots of research I have a better idea. I would like to hear others experiences with this disorder and how your life has...
    allyKat allyKat 26-30, F 18 Responses May 7, 2007

    Your Response

    Cancel

    Year Long Headache Diagnosed In Nov 2007

    My story starts with a headache that began in May of 2007.  I thought it was stress related, and didn't give it a whole lot of thought for a month or so.  Sometimes i would get dizzy, light headed - have some funky vision loss, etc...  Finally my friends...
    Squeesan Squeesan 41-45, F 1 Response May 16, 2008

    Your Response

    Cancel
    Wotserface Wotserface 41-45, F Feb 2, 2011

    Your Response

    Cancel

    My Daughter Has Pseudotumor Cerebri

    I took my 6yr old daughter for her annual check up.  She is a skinny little thing who has always been in perfect health.  It was her pediatrician and his new resident.  The resident to her doc to check her eyes because her margins looked off. ...
    candyfrogs candyfrogs 26-30, F 4 Responses Nov 9, 2007

    Your Response

    Cancel

    Raise Awareness

    Hello IIH'ers here is my new and improved website to help raise awareness all around the world for IIH/pseudotumor Please feel free to email me your story too through my website to share and help raise awareness.. emilyjordan2222.wix.com/raise-awareness-iih
    emilyboyd2222 emilyboyd2222 22-25, F Sep 25, 2013

    Your Response

    Cancel

    My Story

    i first diagnose with ptc when i was 13 years old. i had a very painful headache and i couldnt see very good everythin was blurry. i went to a doctor that said its migraine and gave me some pills that didnt help to the pain at all  allmost two weeks  i was without...
    hana1987 hana1987 18-21, F 1 Response Apr 9, 2008

    Your Response

    Cancel

    PTC And The Fight For My Freedom...

    hi guys, my name is jasmyine, let me start by saying its so refreshing to FINALLY find others that are going through the same thing i'm battling with. I am a 27 year old woman just like any other have dreams, goals, and a bright future ahead but last year that came to a...
    AJazzyJazz AJazzyJazz 26-30 4 Responses Mar 2, 2013

    Your Response

    Cancel

    Confused

    Last year at 19 years old i was told i had psc. It took two months and many trips in and out of the ER to finally have someone tell me what was wrong. Before I was sick I was very smart had a great memory and was able to drive. Now i walk to my job, which is only part time and i...
    amberd13189 amberd13189 18-21, F 2 Responses Sep 19, 2009

    Your Response

    Cancel

    I Thought They Were Real...

    Every since i have been sick for 2 years, Ive lost just about all of my friends even the ones who i thought were my best friends. They drifted away because I'm limited to things, I'm fragile and I'm self cautious and uncomfortable to leave home in case something happens. I...
    justbelieve93 justbelieve93 18-21, F 6 Responses Mar 16, 2012

    Your Response

    Cancel

    Surgery

    Okay so u posted a while back but just wanted to update. I recently went for another spinal tap an my pressure was over 400 where it's supose to be from 80-150 so I am meeting a neurosurgeon this Friday to discuss surgery.. I had a blackout at work today and my dr has put me out...
    emilyboyd2222 emilyboyd2222 22-25, F 3 Responses Sep 3, 2013

    Your Response

    Cancel

    I am 35 yr old and I was diagnosis a year ago

    and it's been hell. I'm on 3,000mg of diamox a day in addition to others I have lost a lot of my vision and now I mite need a shunt. I don't have no one to go through this with..
    angela35w angela35w 31-35 Nov 16

    Your Response

    Cancel

    My name is Amy,I am 22 years old

    and I was diagnosed with pseudotumor at the age of 11. My first spinal tap I was put to sleep for and from what I was told didn't go well at all,besides the fact I fought the doctors while they had me drugged up I think my mom told my my pressure was somewhere around 45 or so...
    AmiLove101 AmiLove101 22-25, F 7 Responses Dec 29, 2013

    Your Response

    Cancel

    Will This Nightmare Ever End!

    July 2013 It hit me like a freight train. I had been having headaches here and there but nothing like I had the night I gave in and went to er. I had been gone all day out running errands and buying my new car. Drove it from the dealership to my house and little did I know it...
    laceywarner1 laceywarner1 26-30, F 2 Responses Oct 8, 2013

    Your Response

    Cancel

    I have just been diagnosed officially today.

    This whole experience began about 4 months ago. I had recently began a new job working for a construction company as an administrator and I went from standing all day to sitting at a computer. Naturally, I gained a few extra pounds. I've always been a small person. Im a 24 white...
    kughrin8 kughrin8 22-25, F 1 Response May 9

    Your Response

    Cancel

    It's been 3days now on Diamox.

    Yesterday my fiancé and I wanted to go grocery shopping and to walmart to buy a grill so I can start eating better. My head does feel a little better but the effects of the diamox really hit me yesterday while walking around at the store. I became severely exhausted and felt...
    kughrin8 kughrin8 22-25, F 1 Response May 11

    Your Response

    Cancel

    I Can't Take Much More!!

    I am a 44 year old woman who was diagnosed with PTC in 1998.  At that time, I could not find much info about this disease, so I was happy to run across this site.  Since 1998 I have had 6 Lumbar Punctures all being positive for high pressure.  I have not been able...
    michels96 michels96 41-45, F 5 Responses Apr 1, 2008

    Your Response

    Cancel

    Smile

    On 07/28/2011, I  was having a regular day when i started to see what appeared like lighting through my vision. The pressure started soon after along with blurry and loss of peripheral vision. Being a MA I figured that it may be something on my brain causing the pressure, but...
    chrystalg4512 chrystalg4512 18-21 2 Responses Aug 8, 2011

    Your Response

    Cancel