Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting seconds, pulse synchronous tinnitus (a "wooshing noise" in the ear), and double vision.

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  • rmsunkist

    Recently Dx w/ PTC

    Hello All.  I am a 25 yo female that was diagnosed with PTC.  I was told by my neurologist that the only cause of PTC was being overweight or the use of a certain acne medicine.  How many have been told this?
  • sofialopez


    Hello...So i was diagnosed almost a year ago, and all the doctors would say that this was a problem that affected mainly overweight people. I’m 5’2 and weighted back then around 130lbs but when I heard that I totally panicked and now I’m down to 108lbs. I just keep losing weight, but that’s always been hard for me before. Like I just flat out have no appetite anymore because I’m just so...
  • ksh36507

    PTC and Fatigue

    I was recently diagnosed with PTC.  I suffer from severe fatigue.  Does anyone else have bad fatigue  and is it common for PTC sufferers? 
  • kar5279

    Do I Need Another Spinal Tap?

    Hello everyone,I was diagnosed with PTC at the age of 13 in 2008 where I had my first lumbar puncture. I had double vision and debilitating headaches. My eye even began to turn inwards. I was told to lose weight but never put on any medication. I did lose weight for a while and my symptoms went away and my eyes went back to normal. Unfortunately, my weight has always been a lifelong struggle and...
  • princesspickles

    New to this, seeking answers and support

    I was diagnosed 9 months ago with this dreaded disease. I am 27 years old and I can honestly say this has been the worst year of my life. It started off one day I couldn’t move my head or neck and getting out of bed put me in excruciating pain. It took several ER visits and they did a Lumbar puncture thinking I may have meningitis and I got immediate relief. I seen a neurologist and went...
  • rcykb1

    PTC and Retinopathy??

    Hi,I had a multifocal ERG earlier this week to check for retinopathy caused by toxicity of plaquenil a medication I take for lupus. The results were inconclusive, some of the retinal damage was consistant with plaquenil users and some wasn't, I also found the test very annoying and was unable to controll myself from constantly blinking (even after being giving anesthetics) which might have messed...
  • annangel10

    Stent Recovery

    I was diagnosed with PTC in April 2017 and have had a very long battle since then.  I was told my case was more complicated because I also had blood clots in my head.  I have been on 2000 mg of Diamox a day since May as well as 40 mg of Lasix with absolutely no relief.  They finally did another MRI with contrast this time and discovered that the left side of the venous sinus junction was...
  • jyea04

    Pseudotumor cerebrei

     I was diagnosed with PTC in October 2016. I've been on 2000 MG of Diamox since then, with no significant improvement of my optic nerves.  My vision is actually worsened over the year and I'm now told I have fluid on my Retina- which is causing severe distortion in my left eye.  The doctors do not believe two issues are related and believe something else is going on.  Has anyone else ever...
  • Stephaniejean1

    New and looking for answers!

    Hello everyone. I'm new to the group and looking for answers. I have not been diagnosed with intracranial hypertension but I'm pretty sure that I have it. I started having pulsatile tinnitus (swooshing with heartbeat sound) in my ears about a year ago. Headaches often. Some worse than others, especially right before and during my period. I've been to an ENT, General Practioner, and neurologist...
  • Hi,I just joined.  I was diagnosed with PTC recently by a neuroopthamologist.  Pulsatile tinnitus is the symptom that bothers me the most and was why I got it checked out.  It's only in my right ear.  I also had headaches, but I also have chronic sinus and neck issues so I didn't think anything of the headaches.  So anyway my ear and MRI/MRA were fine.  The doctors just said it was...
  • cpowell623

    Mirena Removal, Decrease in PTC Symptoms?

    Hi, I have a friend who had a Mirena IUD and has been diagnosed with Psuedotumor Cerebri and has pretty serious side effects. I was wondering if there is anyone else in here that has had experience with getting the Mirena removed. We are wondering if you saw decreased symptoms or if removal did not make a difference. Any info is appreciated.
  • deleted_user

    Working with a vp shunt

    I had my Vp shunt surgery in March of this year and just got a job about 3 weeks ago...with the shunt Ive only had 3 extreme headaches...since i started my job ive been having a very sharp and painful stabbing pain right on the catheter line...I was wondering if anybody has any ideas or anything...i go back to see the NS in August...since one night the pain was so bad i was in ER...thanks...
  • Teddy45

    I just got diagnosed with PTC last week

    Hello I am 45 and I just got diagnosed last week with PTC after having pressure build up in my head for years.  I asked and told all of my doctors that I had headaches and pressure build up in my head where I was from and they did nothing for me.  I moved to the mountains and I have been there for two years now.  I went in for a routine eye exam and the next thing is the eye doctor is sending...
  • deleted_user

    Birth Control & Pseudotumor Cerebri? Sun &

    Greetings! I'm newly diagnosed with so many questions. At this point I'm willing to try anthing to get rid of these headaches. Has anyone been told or heard that birth control pills can contribute to this disease? I've read that one of the side effects of Birth control is fluid retention. I've been on birth control for years so I"m not sure its contributing but I'm debating going off to see...
  • ki826

    Diamox question

    Hello,I was just diagnosed with increased intracranial hypertension this month, but have been having symptoms for a few years now. I was started on diamox yesterday-250 mg twice a day. I was told that since it was a diuretic I understandably so would be peeing quite frequently, but I'm not. I'm drinking plenty of fluids, but I feel like I'm peeing a normal amount. Has anyone else experienced this?