Patient Comments: Pseudotumor Cerebri - Symptoms

What were your symptoms associated with pseudotumor cerebri (idiopathic intracranial hypertension)?

Comment from: carmencita1000, 55-64 Female (Patient) Published: March 22

The thing with my pseudotumor cerebri was that I had no idea it was happening. Not until an Easter dinner. I got up from the couch rather quickly and suddenly the right side went black. I didn't pay it much mind. A few days later it happened again in my apartment. Then I called an eye doctor. The office thankfully became hysterical and rushed me in same day. I was clueless. From there straight to a neurologist to a neurosurgeon to do an MRI and C scan all in the span of 7 hours. End of story was that after 7 spinal taps and steroids they placed a lumbar shunt in my body. This happened in 1992 when I was likely obese and in my early thirties. I also had meningitis when I was five. Finally, my older sister who passed at 3 months died of hydrocephalus. None of my other siblings or their children have ever presented symptoms. Very weird to me. It recurred in 2004, no weight involved that time. Long story short a botched surgery and then I was told the lumbar was enough.

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Comment from: JJBM, 35-44 Female (Patient) Published: September 21

I have now had an off and on battle with pseudotumor cerebri. Sometimes my vision will just go red, other times I will just pass out. Sometimes I will just have severe head and neck pain. They have tried Diamox, caffeine, and another pain medicine Fioricet. The only thing that keeps the symptoms at bay is a lumbar puncture where they drain the spinal fluid to a normal level. Every 6 months to 2 years this seems to be required.

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Comment from: jessica C., 25-34 Female (Patient) Published: October 23

This is all very new to me. I have been suffering from what we have thought to be chronic migraine for 6 years now, and my doctor seems to think pseudotumor cerebri may be the underlying cause of them. I am just hoping to find a solution to the persistent pain. The odd thing is I didn't start gaining my weight until the migraines really kicked up.

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Comment from: NYCKYD, (Patient) Published: September 05

I also have pseudotumor cerebri (PTC). I do not get headaches, maybe 2 a month but only when my allergies get going. The only thing that drives me crazy about this is the pulsating sound in my ear! I can't take it anymore!

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Comment from: Dawnmm02, 25-34 Female (Patient) Published: December 30

I have had pseudotumor cerebri since I was in high school from an antibiotic I took for acne. I have had four rounds with this condition and my symptoms each time have varied. The first time, my version turned to double vision with a severe headache. The second round was just an overwhelming headache and my blind spot would grow and expand for hours on end and relax after I lay horizontal for an hour or so. The third time I had the pulsating sound in my left ear constantly for 2 months, along with the headache. Finally, my fourth round with the condition has brought a constant headache and vomiting. I would be wary of any or all symptoms and they do change from episode to episode.

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Comment from: chickapain, 25-34 Female (Patient) Published: March 13

Well, I started having the pain and issues with pseudotumor cerebri at the age of 8. Sadly it happened around the time my parents were divorcing, so they just wrote it off as emotional pain from that. Then in my teens they said it was my body adjusting to all the stress, then as I got older my vision got worse. I had all the signs but they still kept writing it off. Finally only when I looked for a second opinion did I get someone to believe me and boy, did they scare me! When someone says you have a tumor even if it's a false one, your body goes through a little shock. Then the talk of surgeries just made me more scared. I finally had two spinal taps during which both times I got infection into my spinal cord; the second time I had nerve damage also. But once it was confirmed I felt a tad bit better but this happened at the same time I got told I have fibromyalgia, so I was a little overstressed. Now it's been over four years since I got it confirmed and now I know I am not crazy and I am slowly learning to live with it.

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Pseudotumor Cerebri - Treatment Question: What kinds of treatment, including medication, did you receive for pseudotumor cerebri (idiopathic intracranial hypertension)?

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