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  Julie - diagnosed 1999

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medmisfit
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PostSubject: Julie - diagnosed 1999   Thu Apr 21, 2011 8:37 pm

First, let me just say how glad I am to find a social network w/ some substance! I've been on many sites and they have been AWFUL. I finally found you guys through IHRF and the Brain Pain site..thank goodness!!!

My story: I was diagnosed w/ pseudotumor cerebri in 1999, but have dealt w/ encephalitis and "unexplained" headaches since the 80's. My neuro- opthalmologist said I've had everything he's ever experienced w/ ptc and then some. I was on '101 ways to kill me' medications and went into remission for several months, but when it came back in 2001 it came w/ a vengeance. I had a lumbar shunt implant in 2002 w/ revisions in 2005 and 2007. I've had daily headaches for the past 2 yrs. Apparently, I developed a chiari malformation as a result of the shunt, and the shunt is working too well. They think I'm draining too much fluid when upright, but won't move the shunt because it's maintaining the ptc ( and most importantly, my vision). I have a very low tolerance for medication, so trying alternative medicine (open to any suggestions). I think that brings you all up to date..in a nutshell.
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PostSubject: Re: Julie - diagnosed 1999   Thu Apr 21, 2011 11:17 pm

Hi Julie and a very warm welcome to the group. Wow you certainly are having a rough ride, and I know exactly how you feel. It's weird how after remission it does come back with a vengeance, mine was like that after remission as well. I know there is a danger of overdrainage with aned LP shunt, my first one was an LP shunt, and it worked well for 5 years, but it damaged the nerves in my back, it was revised to a VP becauseo f that and also the risk of chiari.

My Neuro's have been on a combination of painkillers that are staggered through the day, and that does help, but if your tolerance is low then they wont be much use. However, there is something called a Migracap which was designed for migraine, by a migraine sufferer, but as our type of headache has similar symtoms it could also be an option. To be honest I have one myself and it is wondeful when the headache gets overpowering. There is also something called a 4head stick and they also do 4head strips. Here are both the links.

Migracap

if you're in the USA its this one

Migracap


4head

You can get it in the USA via Amazon 4head Quickstrips

Hope this helps hug
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PostSubject: Re: Julie - diagnosed 1999   Fri Apr 22, 2011 2:24 pm

Thanks Heidi! I've heard of the 4head stick, but haven't tried the Migracap..I'll definitely look into it!
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