Hello everyone. I'm new to the group but not too new to IIH. I have been cursed for 5 yrs 2 mos with this disease and it has slowly sucked the life out of me. I only say that because I have been told that by many people very close to me and finally this past year my family stepped up and told me the facts. :( It really hit home when my boss came to me with disability papers and told me it was time I apply and he needed to cut my hours because I couldn't do my job anymore. It was one of the hardest things I ever heard,I cried but the surprise was, he cried first. It was a fight to get it and my boss kept me part time (very part time) so I could have some $ come in to help the family. The day I found out that I won my case was the hardest days in my life, I had to go to my boss and tell him the great news, and then in turn him and say good bye to my favorite job I have ever had the blessing of having. It was an agreement we made and I upheld it and with both of us crying, and jumping for joy, we knew an era had ended.
I have a VP shunt with 1 revision thankfully. But I have fibromialgia so bad I can barely walk at times, my memory is hit or miss, my vision got better after the shunt went in but lately I'm not sure what is going on. Vertigo has also set in and they can't get rid of it, I suffered a deep vein thrombosis in my calf and a pulmonary embolism in my lung pressing on my heart at the start of the year. I just thought in July that my shunt was failing to find out that I had pneumonia really bad where I spiked a dangerously high fever I nearly suffered brain damage. Lost a month there.
I know there is more to my story but my head is pounding (that hasn't stopped since June 9, 2007) that I can't think of anything else.

I don't mean to cry on any shoulders I just wanted to tell my story. I have a lot of info that maybe I might have an answer. I was blessed and was able to go to the conference last year at the Foundation and got to meet the doctors and talk with them face to face. But I have been through a lot so maybe I can help someone but trust me, for those of you that have had it for 24, 25 yrs I noticed my hat off to you and my heart out to you. I can only say I pray they find a cure and find it quick.

Thank you,
Karla

Hi Karla and

It sounds as though you got the short end of the stick in many ways! I feel for you. So much going on. Do the docs think any of it may be inter-related?? I had Shingles in 2008 which left me with IIH among other residuals. Balance issues are my worse part. I originally had vertigo, spinning all the time, which morphed into only getting the spins at bedtime. Vertigo is no fun at all. It is a ride no one wants to stay on. I would imagine they have already ruled out MAV and Meniere's?? Perhaps the IHRF can offer you some suggestions???

The work done at the IHRF is absolutely outstanding. It is due to attending the same conference last year that I came to trust my Duke Docs that I indeed did have IIH and geared my treatment that way. Even with all those specialists, there are still disagreements on just what is IIH and how to treat it. No wonder so many regular docs are at a loss as to what to do when one of use presents to them. I hope that the IHRF and the Brain and Spine in the UK are able to break the code and figure all this out during our lifetime!

Hi Karla! I just wanted to add my welcome. I'm glad that you had a supportive boss and were able to leave on good terms. It sounds like you've been struggling for quite some time, so I think it's amazing you've been able to work as long as you have. Disability is definitely a tough step to take, but hopefully you'll be able to focus on treatment and find some much needed answers. I really hope they're able to figure things out, so you're able to function more consistently again. It sounds like you have a lot of health concerns to address..just take it one day at a time. I know it's easier said than done some days, but it makes things a lot simpler and easier to manage. And remember, just because you were awarded disability you don't have to keep it for life. I had to file for disability at one point, but once they were able to appropriately diagnose and treat my conditions I was able to return to work. I know it doesn't happen for everyone especially w/ multiple concerns, but it can happen..hang in there!!!

I also attended the conference last year and found it very informative. It didn't really help me and I had to keep searching for answers, but eventually I found a physician that was able to help. It sounds like you've been on a similar journey, so I'm sure you'll have a lot to offer to others. And please, never apologize for sharing your struggles, needing support or a good rant..that's why we're here!

Take care,

Julie

Hi Karla, welcome.

Sorry u have been though so much. I ain't much help has I newly diagnosed but I have found alot of helpful information here and there are so many great people here who are so nice.

Welcome again.

Emma

Welcome to the group Karla! I hope enjoy it here, we have fantastic people here that will make you feel right at home!

Laura x

Hi Karla

A very warm welcome to the group. It was so nice to read how understanding your Boss was, and I do sympathise because I was in the same position 6 years ago, however mine wasn't as an amicable parting as yours was.

It's a change I know but it can also be a positive one, because your experience and knowledge gained through your years with IIH, could indeed help alot of people here. Please don't give up hope of having a good life, a normal kind of life, because it is possible with a tweak here and there.

We're so glad you joined us and I look forward to getting to know you.

Heidi

Hi Karla,

I'm glad you're here but not glad you have IIH. I'm sure you know a lot more than most of the docs do.

Hi Karla! Welcome to the group. I'm so glad you have found us and sorry to hear about all that you have been through with your IIH. *big hugs* I look forward to getting to know you here on the forums.

Hi! Happy you joined the group!



I just recently joined As well, i just put up my introduction and am Happy to see all the great information they have avaiable and the supporters too.

I was diagnosed a little over a year ago and my drs have told me to apply for disability. I was unsure that because the rareness of IIH that they wouldn't even bat an eye at my case. So hearing you were approved gives me hope

Looking forward to talking with you in the group discussions and am hear if u ever need someone to talk to

~Nichole