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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pippiphurray 03/20/2016

I had five good days in a row. The last two days I actually felt like a normal person. That hasn't happened in 10 months. Every time I have more than one good day in a row I always hope I'm going into remission which is my fault for getting my hopes up.

This morning I was fine. I got to church and half way through I could feel the headache coming on. I ate breakfast with a friend and I told her I was hoping it was just a regular headache. I left there and went to my mom's and by the time I got there I had a full attack going on. Headache, pressure in ears, eye pain, and neck pain. My mom did all she could do and gave me a big hug as I rushed home to pills and ice packs.

Now I'm just sitting here crying which is only making my headache worse. I go to the Neuro Ophthalmologist tomorrow who will give me all the eye tests, say my eyes are a little elevated, I'm doing good, write RX's and send me on my way. Even if I tell him I'm miserable what is he going to do?

Sorry I'm just venting. I hate this disease, it's erased me as a person and taken my life away from me.

angel1313 03/20/2016

SO VERY SORRY KNOW HOW YOU FEEL WHEN THEY SAY NO CLUE WHAT KEEPS CAUSING MY CHRONIC NAUSEA & INNER SHAKING & HEADACHE ETC..FIGHT DAILY NOT TO THROW UP BUT WE HAVE TO KEEP FIGHTING ON I ALSO HAVE 2 DR APPT TOMORROW & ON THRUS SEE MY ACUPUNCTURE THAT SEEMS TO BE THE ONLY ONE HELPING AT THE MOMENT SHE IS AWESOME BEEN WITH HER 3 YEARS NOW & SHE'S SEEN ME AT MY WORSE & CAN'T FIGURE IT ALL OUT
I'M WITH YOU ***SOFT GENTLE*HUGGIES***

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mmidl 03/21/2016

Venting can be a good thing though, besides, here is suppose to be a place where you can do that since we all realise what you're going through.
The bad days are... Well, they are bad, and we know that, but just remember you've got people rooting for ya! ^_^

antiquerose 03/21/2016

Just wondering if there was someone sitting near you in church that was wearing strong perfume, etc. or if perhaps the pitch of the music or the settings/tings on the mic during the service set off your headache? Are you sensitive to such things?

pippiphurray 03/22/2016

Thank you all for your support! I finally feel better today. I appreciate it! My doc said yesterday that my pap is gone and my eyes are back to normal so of course the first thing that shot out of my mouth was why are my headaches so bad? He told me to be patient that it may take a couple of years to go into remission.

To answer you questions, yes I think it was the bells playing that morning and the lighting. I used to never NEVER be sensitive to smell but now I can't stand to smell any perfume and certain other things kick it off too.

I'm sorry Angel about your symptoms and no answers. :( I'm glad that acupuncture is giving u some sort of relief.

I know we are all in this together! Thank you for listening me vent.

Pip

cinnabunny 05/10/2016

@angel I also have inner tremors! It's worse when I lay down or wake up. Ive heard it can be a symptom of too much csf and also a decreased dosage in diamox. Do you still have this? Does anyone else?

Sophiasmom06 05/10/2016

my son vibrates when he gets worse. his osteopath can feel this even when it is not obvious, and his treatments help it. this is osteopathy in the cranial field. you can find a local provider at cranialacademy.org

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