REALLY BAD WEEK.....

iVillage Member
Registered: 09-03-2004
REALLY BAD WEEK.....
5
Fri, 10-01-2004 - 12:08am
But it's getting better!

Okay, so I had a good weekend. My parents met me in the town halfway between Omaha (where my DH and I live) and WY (where they live) this weekend. It was wonderful seeing them. They are doing well and loving retirement. But I noticed I had a horrible headache and it started to progress towards a migraine very quickly. Now, I am no stranger to migraines. I have a rare and serious condition (I guess that's what you'd call it) called Pseudo-Tumor Cerebri that effects between 5-13% of obese women between the ages of 18-25. Basically, a healthy brain constantly filters spinal fluid, but I have a "growth" blocking the duct out of the brain. In a nut shell, the spinal fluid can get in, but it cannot get out, causing my brain to swell.

It sounds major, but really it's not. The pressure on my brain has permanatly destroyed some of my optical nerves, so I have no central or lower peripheral vision. I'm on some diaretics, and I have a spinal tap about once every 2 weeks, but it's been very regulated for the passed year and a half or so, until this last weekend. We cut the weekend short and came back Sunday, by Sunday night the pressure had built up sooo bad I was having seisure's (spelled that REALLY wrong) and I had no peripheral vision at all. I went to the ER and they admitted me into the ICU. I had to have a catheter similar to what they put in for women having an epidural, that drained my spinal fluid constantly.

But the GOOD part was, I thought I was 305 going in, and I weighed in at 299! And now, my first day home, I was 295! That's 10 lbs less then I thought I was! I feel a lot better, and look forward to catching up on the page of posts I missed. (Looks like I missed a few doozies too!) I hope everyone is doing well.

Take Care,

Critter

iVillage Member
Registered: 01-05-2000
Fri, 10-01-2004 - 6:38am
Is there a cure for this condition? Geez, I sure hope so. Congratulations on your loss. :-) Stephanie
iVillage Member
Registered: 01-04-2004
Fri, 10-01-2004 - 9:21am
Wow! I'm glad you're feeling better :) I'm sorry you had to cut your weekend short, but at least you're doing better. Congrats on your loss!

~~Linda

~~Linda

 

iVillage Member
Registered: 07-26-2004
Fri, 10-01-2004 - 9:26am
(((((HUGS)))))))

I didn't know a thing about this condition. So I went looking - I am the cat that curiousity has killed a million times.

http://www.pseudotumorcerebri.com/

Excellent and very readable website.

Is yours primary or secondary?

I wonder how many women have suffered from this and been treated for stress and migraine.

Just a note: according to the website, weight has nothing to do with the condition.

furry

iVillage Member
Registered: 08-31-2004
Fri, 10-01-2004 - 9:54am
Holy cow! What an ordeal :( I hope that you are feeling better. Ive had an epidural but not a spinal tap. I would hate having to have one every two weeks or so. But I guess you have to....Im glad you are feeling better :)
iVillage Member
Registered: 09-03-2004
Fri, 10-01-2004 - 1:40pm
I have primary idiopathic PTC. Basically it just means that they don't really know what caused it, and they're having a very hard time figuring out how to fix it. They mentioned putting in a shunt. Basically it's a tube they put in the brain that drains all of the excess fluid into your abdominal cavity to be reabsorbed. I'm really not a surgical canidate right now, with the weight and blood pressure issue. I would do it in a heart beat if I could though. They said I could try losing weight (which is one reason I'm trying so hard) but they also said that probably wouldn't do any good. But it's worth a shot, and gives me some motovation! ;0)

I'm with you on the misdiagnosis thing. My insurance wasn't going to cover me because I had been diagnosed with migrianes before. It took a lot of letters from some excellent doctors to change their minds.

BTW...that's an excellant website, thanks for finding that and sharing it with us.

Critter