Hi everyone, My name is Donna and i am 27 years old, i was diagnosed with IIH in june of last year after a sudden onset of symptoms, i had blurred vision suddenly for two weeks before i was admitted to hospital, i spent a week in there, my opening pressure was 40 (but i was sitting up...don't ask me why the REGISTRAR told me to sit up for it) I had another LP done two days later laying down and my opening pressure was 34. I had 3 MRI's and 2 CT scans and was diagnosed immediately with IIH. My neurologist is a fantastic professor (we only have 2 Neurologists within 4 hours, luckily one is 50 mins away). I was put on the maximun dose of Diamox and given another LP One month after being medicated to see how well it was working and my pressure was 32...was obvious the diamox wasn't working for me, i was sent to see a Neuro-opthamologist 3 hrs away and to have a Venogram, they found the large narrowing was quite long! Surprised me to be honest. My neouro-optho spent 5 mins with me and said, well your pressures are high (28-32) and your vision is severely compromised (i went from perfect 20/20 vision to not being legally able to drive), but i reckon if you start taking topamax and lose weight you'll be completely fine...
I walked out of there completely mortified.

I started to take the topamax that day, maybe lost 3 kg but my head was so sore. I kept getting put up on the topamax until i was at 350g per day and i couldn't talk properly, my cognitive skills went through the floor. I wouldn't hold a conversation with my 5 yr old let alone with my husband, my words just wouldn't come out! It was a very frustrating time. I spoke to my neuro (who i was seeing monthly) and he said look, lets take you off it, slowly and LP you again and see what your vision does what your pressures are...I had another LP done and it took them 2 hours to perform it this time, i was black and blue!! Unfortunately my pressures were still elevated at 29.

My neouro put me on verapamil to stop the horrific migraines i was experiencing, they were so painful i was vomiting and the severity of it.
That is the only medication i am on, since november of last year. I am having another Venogram on this coming Monday to check my pressures again and to hopefully be booked in the for stenting surgery.
I have only been sick for 8 months but i have 4 children and a husband who need me. This has been extrememly hard to deal with, i have always been so healthy! People don't understand! They ask "oh so you're better now?' Ah no. I probably won't every be again, thanks for asking though..I am a bit angry that this has happened to me and my family. Angry that this condition even exists..It is not fair to be honest.
In saying that, i accept the challenge and i will win.

Hello Donna and a hearty welcome to you!

Have your doctors discussed getting a shunt? Do you get any relief from having a lp? Do they drain off fluid to lower your pressure to see if that helps? My docs did that. After each lp we would start back up with the diuretics (I was taking Diamox and Furosemide). I always felt better. Didn't last long enough for my liking, but proved that a shunt might do the trick. I had my shunt put in Nov. 1st. It has helped.

I hope your docs are able to help you feel better soon.

I have only had the stent offered to me, in Australia it seems the thing to do with IIH its only called BIH here really, the shunt scares me, my hubby's uncle has 2 shunts in his brain and it hasn't gone well for him. They take off 20ml everytime i have an LP i get maybe an hour of relief at most, i have had two leaks in my spine from them, out of the 5 i have had done. It's all just a bit unfortunate really.
Thanks for the welcome!

Donna, I love that you've accepted the challenge and vow to win..attitude really does make a difference! Of course it doesn't help w/ the pain, vision loss, and cognitive deficits, BUT it makes you more determined to find an answer...good for you!

I didn't tolerate meds well and am usually down for a week after LP now, so I understand your frustration. I've had my lumbar shunt since 2002, so stenting really wasn't an option..I'm not very familiar w/ it and don't know anyone that's had it done, but hopefully you'll get some replies from your post in IIH Surgery.

Unfortunately, finding the proper treatment can be a long and overwhelming process. Your quality of life and functioning can improve once you get there though..it is possible to live a normal life w/ IIH, so hang in there. It's not perfect, but you'll learn how to adapt and live again. Good luck, and keep us posted!


Take care,
Julie

Donna welcome,welcome, welcome to the group I'm so glad you joined us. I know the frustration that you're going through having been there myself at times, I applaud you for your determined spirit and that you aren't going to let this beat you. I can't agree more with Julie, it wont always be like this. Once they sort this out fingers crossed your life can get back to some kind of normality.

The best of luck with the Venogram and keep us posted.

Heidi

Hey everyone, i just had the venogram done today, i was informed that the stent will not work for me as my issdues is not in the sinus vein it is with my 'cauliflower suckers' that bring my fluid from the outer of my brain to inside...so it's optic nerve fenestration or a shunt...kind of mortified right nowe...will see how i go with this news..

Donna I am so sorry it hasn't gone as well as you thought it would. You need to give yourself time right now to get your head around all this, and I'm sure you feel shocked and numb. We're all here for you so you aren't alone and if you need to rant or just get your feelings out, ask questions whatever, please do so and we will all help to get you through this.

Heidi

Donna, I'm also sorry things didn't work out as you had hoped..finding the correct treatment can be such a long & frustrating process! I do hope that you're finding some comfort in the fact that you still have other options..hang in there & let us know if we can help in any way!

Take care,
Julie

Hello Donna,

I'm so sorry your going through all this I know it can be so hard and scary when your treatment is so up and down and everything seems to fail but it should settle down soon and you should find something that works for you xxx

Thanks everyone. I am so new to this illness...it just seems like it never stops. The fenstration scares me and so does the shunt. It petrifies me.
I'll get my head around it i am sure. The financial pressure is great when dealing with this though i might add!

I understand how you feel the thought of surgery scares me too

The financial strain can be hard too is there no disability help where you are?

I have avoided disability help so far, i have had my head in the sand regarding my condition...maybe it's time to seek some help...

A huge Welcome to you Donna!

I hope you're finding all the information you need around here, don't hesitate to ask for anything

Laura