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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  • tuonela

    Headaches still after vp shunt?

    Hello. I'm new here.  I had a VP shunt placed in December and had to have a revision shunt placed in March of this year. Before putting in the VP shunt, my doctor tried three stents in my brain. After the stents replaced I had some relief for a few weeks. But then I would start having the pressure headaches again. My doctor said that even though the stents were keeping the vessels open, other...
  • All4him

    How long for body to adjust to LP Shunt

    Hello everyone!  New here. Thankful to find this support group!  My daughter just had a faulty Codman Hakim programmable LP valve replaced, with an additional siphon guard added this time, in an effort to eliminate overdraining while upright.  She is set @ 80 as this is the level needed to allow her to walk.  This level seems to be too low for her head though. She is experiencing what feels...
  • 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...
  • CC126227

    Diamox - IIH diagnosis

    I have been suffering from headaches for 6 years, after having two life threatening bouts of meningitis and a CSF leak.  I have been seeking treatment and relief without success.  My last neurologist did another LP and found my opening pressure to be 37 so he has diagnosed me with IIH.  I don't have any other symptoms - other than headaches. They are constant, all day, every day for 6 years....
  • Linzdad

    Diagnosed with IIH really confused right now

    My 19 yr old daughter was just diagnosed with IIH or Pseudotumor as the Neurologist called it. I have been researching and asking tons of questions the past week. That has led me to this forum. About a month in a half ago my daughter started complaining about her eyesight getting bad, Mainly her periferal vision and she said she had a blind spot in it as well Just the right eye. She also had...
  • 2Much2handle81

    Hello everyone I'm back!!

    Hello everyone. I've been a member in this group since 2011 but for some reason I wasn't able to log in 2 my old account  so I created a new one. My user name was kphillips...just wanted 2 check in with you all and see if anyone from back in 2010 or 11 was still on board.a quick recap on me..i got diagnosed in Nov  2010 due 2 having papiledema.  Nearly lost my eyesight due 2 severe hemorging...
  • 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?
  • 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...
  • deleted_user

    Mirena IUD and IIH

    Hi LadiesI was wondering if any of you have or have had used the Mirena IUD or any hormonal birth control. I have read alot of articles and alot of what I have read comes back to hormonal. I believe in my heart my issues with IIH stem from having the Mirena Iud for 5 years. Does anyone else feel this way or know anything about this. Why does mostly woman of child bearing age get this? I feel...
  • alien63

    New Diagnosis

    My journey with Pseudotumor is new. I showed no symptoms other than swollen optic nerves at an annual eye exam and was referred out to neuro. My MRI came back clean other than my raging allergies clogging up my sinus cavities, but my spinal tap came back with extremely high pressure levels. I was put on Diamox and given three months until I need to go back to the neurologist. In this three...
  • nursebeth

    No diagnosis

    Has anybody else been diagnosed with IIH with no papilledema? My background story: I have had frequent headaches for years, but always brushed them off as being caused by caffeine withdrawal or stress. Around May 2016 I started to experience the whooshing in my ears occasionally as well as the random dizzy spell. Fast forward to October and these symptoms along with the headache increased in...
  • ptchelp


    So I'm a little freaked out. Lately I have been having tinnitus (ringing, not whooshing) in both ears. I used to have pulsatile tinnitus pretty bad, but it's calmed down since I started Diamox about two years ago. Now my ears are both ringing off and on, especially if I lie down or change positions. It comes and goes, it's definitely not constant. Sometimes my ears feel a little muffled, too. I...
  • deleted_user

    Weight gain

    Yeah she's still hanging around lolSo i have gained 17 kg which is 37.4 pounds in a month i honestly cannot say were all that has come from and was wondering if anyone who has had the fluid Malabsorption was weight gain a factor i mean that is allot of weight and it has gone up so quickly i haven't fallen badly into old eating habits i eat more since my lap band leaked but no were near enough for...
  • MLM

    G/I Issues - On Diamox Again

    Hi -I was on Diamox last year and had to be taken off due to extreme diarreah after taking it for about 2 months. My doctor put me on lasik only and it is not helping, so I am back on Diamox again to see if I can tolerate it. My doctor said that most people's bodies adjust after time on the medication. Have any of you had extreme diarreah and then had it subside?
  • Hello everyone. I am Alexis and I am 33 years old. I was diagnosed with pseudotumor cerebri in June of 2013 here in Atlanta. All my life I have dealt with severe headaches and every time I went to the doctor they would say it was something like sinusitis headaches or tension headaches or migraine headaches. When I was Nineteen I start experiencing floaters in my eyesight. Sometimes I will feel...