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DefyTheVerdict
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PostSubject: Hello   Sun Nov 16, 2014 12:53 am

Hello,

As an male living with IIH, it is with humble appreciation that I introduce myself to this foundation.  The diagnosis has been with me since January of 2008.  The story of my diagnosis is very similar to others.  I was prescribed Diamox, Topamax, and Lasix.  Eventually all the doses maxed out.  I was overweight when I was diagnosed.  Over the 4 month medication period, I dropped from 270 lbs to 185 lbs.  My vision kept worsening so we decided to have shunt surgery.

I have an VP shunt.  I have had an LP shunt.  The latest news is a stent placement to address venous stenosis last October 2013.  It took several months but this past spring and summer I experienced a pain free stretch for the first time in 6 years.  

However, the last 6 weeks I have been experiencing high pressure symptoms again.  IF I think back, it does seem that my symptoms have worsened in the fall and winter months yet I can not say for sure.

I am the father of 5 amazing children.  I have been on disability for almost 3 years.  It has always been my goal to work again, perhaps one of the most difficult aspects of IIH for me.  Prior to the last 6 weeks I had interviewed for 2 positions and was feeling well.  

This disease is challenging to say the least.  I am very glad to have found a group of people who understand what I've been through.  It is emotionally draining, the ups and downs, and it is always good to find support.  I have some experience with this illness and I am happy to share any and all of it with any person who has been diagnosed.  

Thank you for creating this foundation.  I look forward to the day when we discover what causes this illness and can bring relief to those who have it.  Until then, we can hold each other in the light.


Dan
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Wylee
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PostSubject: Re: Hello   Sun Nov 16, 2014 4:34 am

Hi Dan, and welcome to the forum.  
I admire your determination.  I suspect that you will indeed get to the bottom of this latest set back.  I assume you have had a myelogram to check to make sure the shunts are working correctly?  
Just as the barometric pressure can wreck havoc with our ICP, I don't see why temperature would not have an effect also.  I hope your docs will be able to figure it out for you so you can get back on track.
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Chris71166
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PostSubject: Re: Hello   Sun May 15, 2016 2:11 am

Hi Dan
Dont feel bad ive had this condition for 17 years now i was 32 when i was disabled im 49 now and my head pain was managed great with 100mcg fentanyl patch.All neurosurgeons ive seen told me they only put shunts in to save vision and if i wanted one put in i would still need heavy pain meds so im like why bother.ive got my own post up on here asking things.i use to belong to other forums years ago and everyone would say how lucky i was that pain meds worked for me when they didnt work for most.if i havent gotten rid of this by now i never will mine was caused by dr error not by my body
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