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...

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New and looking for answers!

Stephaniejean1
Stephaniejean1

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 with no answers. I had a normal MRI, and all blood work was normal except my EBV levels were high. Basically the doctors have said that I'll just have to live with it. However, I feel like their is an underlying problem causing these symptoms. The swooshing sound and headaches are sometimes unbearable during my period. Once I start my active birth control pills, my headache subsides and the swooshing isn't as loud (but still there). I feel like it has something to do with my hormones. Has anyone else experienced this?  And how do I get a doctor to take me seriously?! It's very frustrating!

Stephaniejean1
Stephaniejean1
I should also add that I am not overweight and this is the reason my neurologist doesn't think I have PC.
LeximusPrime
LeximusPrime
Does your birth control medicine have Estrogen? I made a thread about how I thought I had the hypertension, but it was actually a blood clot blocking the part of the brain where it drains the fluid.
LeximusPrime
LeximusPrime
Also, how's your vision and have you visited an Opthamolagist? They're actually better at getting you a referral to the ER since with hypertension you often have fluid leak into your eyes. They can see the very back next to the optic nerve where other doctors don't have the tools to do so
LeximusPrime
LeximusPrime
Lastly pulsatile tinnitus isn't common. It means something is wrong. Not a lot of things cause it, and the intracranial hypertension is one of them. I'm not a doctor, but I'm very familiar with the whole deal
Stephaniejean1
Stephaniejean1
Hi LeximusPrime, I've read your post and have been commenting and asking you tons of questions.
I'm so frustrated because I'm not sure what to do at this point given the fact that I've been to a neurologist and MRI showed nothing. That was about a year ago and the condition is getting worse. I'm thinking I should maybe see an eye doctor and if they see swelling maybe they will send me somewhere that I will get answers.
Michelle42
Michelle42
Hi there! I was only diagnosed recently, but I can second what LeximusPrime is saying: An eye exam was the way in for me. They saw swelling in my optic nerve, ("papilledema" is the term you are likely to hear) which happens when it is under pressure. I went to my regular optometrist, who referred me to an ophthalmologist, who did a more in-depth eye exam before referring me to a neurologist. I wish I could have skipped the redundant eye exam, but once someone saw the optic nerve swelling, the rest of the referrals happened with a LOT of urgency.

I don't know if papilledema is present in every case, but it HAS to be caused by inter-cranial pressure. My understanding of the diagnosis has been "pressure without explanation = PTC."

As a side note... A few years I had gallstones. I was in agony when I went to the ER and was told I had "gallstones, but no blockage." I was skeptical, but these are professionals, right? $20k in tests later, I still had no answers. Later, when I saw the NP and my doctors office, she took one look at me and said "Gallstones." She ordered the *right* tests and 2 months later I had it removed.
Trust your instincts. Find someone who listens to you. "Live with it" is not an answer.

Good luck! I hope you find some relief!