Hello and Pseudotumor Cerebri Question

[AbiA]

Hi, everyone,

My name is Abi, and I have migraines and cluster headaches. I've been reading here for a while, but this is my first time posting. It always looks pretty busy here.

Does anyone else here have pseudotumor cerebri? I work for a doctor, but I've always gone to a different doctor for my own care because I just felt it easier to keep a professional relationship and not be tempted to "whine" at work if my boss wasn't also my doctor. Anyway, preventive after preventive has failed for me, and I've never been able to figure out what the heck triggers a lot of my migraines. I'd read about PTC maybe being a migraine trigger, but my doctor said he had ruled it out because my MRI's were clear and there was no sign of PTC in my eyes. Then I read in a book that you can't tell definitely without a spinal tap. Well, to make a long story short, it turns out that I do indeedy have PTC, and that for some people only a spinal tap will show it. The eyes and MRI's don't always show it.

I'm just wondering if anyone else has had that experience? I'm finding this experience ultra frustrating because I trusted my doctor and have spent almost three years trying preventive after preventive and trying to be patient. Since finding out that I have PTC and being treated for it my migraines are letting up a bit in severity and frequency both.

Anyone have any experience with this?

Thank you in advance.

[FrenchBean]

Hello Abbi,

I don't have any experience, but was very interested by your post. I have never heard of this before, not even on the old BT forum.

Do you mind if I ask a few questions? I was wondering where you had found out about PTC and what made you suspect it might be causing your migraines? Is the treatment very diffent?

I'm glad to hear that the new treatment is helping, if only a little. I hope somebody will come along soon with some advice.

Frenchbean

[AbiA]

Hi, FrenchBean,

No, I don't mind questions at all. Seems the more we share, the more we can learn from each other. :-)

I read about PTC and it's possible impact on migraines initially on another message board. Then I read in the book "Living Well With Migraine Disease and Headaches" that PTC can be a migraine trigger and keep preventives from working. The author's story sounded much like mine, right down to migraines with unexplained triggers. That was also where I read that only a spinal tap can fully confirm PTC.

I'm taking Diamox for the PTC (they also took out some of the spinal fluid when they did the tap so I was starting out with "normal" fluid pressure.). I've read that Diamox can also help with migraines triggered by weather and barometric pressure and that's one of my worst triggers.

It just feels so good to finally make some progress after years of feeling like a guinea pig and taking so many preventives that never did anything. I'm sure you know what I mean.

Thanks!

[MichelleC]

Hi Abi,
Thanks for bringing this to our attention. I had never heard of PTC before. It's great that the diagnosis is helping you get better!

Michelle

[AbiA]

Hi Michelle,

You're welcome, and thank you. :-)

[AJack]

Hi, I know its frustrating to have to go through years of trials and have no success but I think in general most doctors don't think of PTC since it is so hard to diagnosis. To have 3 different tests (MRI, eyes, LP) come up normal, I can imagine as a doctor they would put PTC off their radar screen since most people (I don't know the percentage) high csf pressure shows up on one of those tests. It seems easy to give someone a trial of Diamox early on to see if it helps and if presumably PTC could be happening. Believe me you do not want to take Diamox when you don't have high pressure (induces low csf pressure headache that takes a while to get rid of). I have had my episodes of PTC and like you it has rarely shown up on any of the tests, but I have come to know the signs by how I feel when upright vs laying down. When I have high csf pressure I get most of my migraines triggered at night and have horrible headaches in the morning that are somewhat relieved when standing up right (the migraine doesn't go away but the background headache does). I'm glad you got the correct diagnosis and I hope things go better from now on!
Best wishes,
AJ

[AbiA]

Thanks, AJ. I think what frustrated me most was that my doctor ruled it out based on an eye exam and MRI, but didn't even do an LP. Now, nobody I know would like to have an LP, but he didn't even mention one to me. If he had, the PTC could have been diagnosed literally years ago. As a side note, now he's claiming that I probably developed PTC after the eye exam and MRI. Somehow, I'm not buying it. There wasn't that much time lapsed.

Oh, well! Things are far better. Preventive drugs have started working pretty well and I feel at least half human again. :-)