Hello all, my name is Lori, i was officially diagnosed with IIH about 6 months ago, i say 'officially' because i have been living with it since at least the age of 11.....well i guess it all started for the first time when i was 10 or 11, it was the scariest thing i had ever gone through, my eyes filled with fluid, which impaired my vision and put pressure on my brain, causing me to lose control of speaking, i was asking for help and everyone thought i was playing around, being only 10 or 11, no one takes you seriously,thank goodness it went away, it happened only once more at the age of 13 at school and the school nurse called me stupid, :shock: that was nice. i would love to hear if that has happened to anyone else, and if so i sympathize deeply, i know how terrifying it is to feel trapped in your own body. Much like the all of you who suffer with IIH, i have daily headaches, and i am sure you all have found out like i have, that an aspirin wont help make the pain go away. i have vision problems, extreme anxiety :suspect: dizziness, nausea...depression, and also like some of the stories i have read i find that i am not the only one who can sit in a crowded room and feel completely alone, i watch other people going on with their lives and i ask myself, did i used to be like that? because i cant remember what normal feels like anymore, i think i should mention that my weight has always fluctuated 20-30 lbs so i was overweight as a kid, and my IIH was 'active' i was thinner between the ages of 15-22 so i wasn't effected, but now having put on some lbs i am once again effected, does this happen to any other suffers as well? i know weight is a factor, but everyone is different. i want relief, and i want to be able to afford relief too! i want my friends and family to realize that, just because i dont look sick doesn't mean i dont feel like i am dying, i applaud :well done all the sufferers out there who can live their lives despite the circumstance, and i look forward to getting to know you and hopefully make some friends, and i hope i can help too! all for reading my introduction, i hope it doesn't sound like a jumbled mess, lol. i look forward to hearing from you all!!!
-Lori

Hi Lori, welcome to the group!!! I'm sorry to hear that you're struggling w/ symptoms again. IIH can be difficult to diagnose and treat, so I'm glad you're looking for support. I'm sure you've read through the stories and hopefully have found you are not alone. It's true that everyone's story is different, but we all have similar struggles. IIH is known as an invisible disease because we don't "look sick", so it does make it more difficult for friends, family, employers, and even physicians to understand. I think you'll find a lot of support here, and there are guides available w/ ideas on how to talk to people and professionals about IIH.

I know you said you've found that weight is a factor for you..I think you'll find that weight gain/loss has affected other members, although it doesn't seem to affect everyone. There have even been some people that have gained weight since diagnosis and are unable to lose it. You can find more information and research at www.ihrfoundation.org. This would also be a good place to send friends and family trying to understand your struggle w/ IIH.

I'm curious to know how you're managing your IIH now. I assume that you're trying to manage your weight, but is anyone monitoring your vision or treating your symptoms? You will find some discussion and information about treatments here, but IHRF is a good resource for that too.

I hope you are able to find some relief soon!
Take care,
Julie

Hi Lori and a very warm welcome to the group . I agree with everything Julie has said, and I know it has been very hard for you. I think being young and being affected by IIH makes growing up even harder, especially when you cant do the things your friends are doing, and you're very conscious about fitting in being important.

It definitely seems that weight is your trigger, which at least you can control, although you might not think that at the moment. I myself was a healthy weight and continued to be until they put me on steroids and other drugs for pain, and now I am trying to get back to the weight I was before. My trigger is actually hormonal, which I cant control, and sometimesw think it would be so much simpler if it was weight, because you can lose the weight and regain remission when its your IIH trigger.

I am impressed that you know what your trigger is and can identify that when you put on weight it triggers the headaches and other symptoms. Are controlling your diet at the moment and/or spoken to your Doctor about seeing a Nutritionist or dietician who can help you?

We have lots of information and members discussion topics that I think will help you and any of the admin team or Julie are happy to answer any questions or concerns you have. Remember you aren't alone and we are here to help, support and most of all listen to you and help give you a voice.

Heidi

Hi Lori and to the group!

I'm sorry to hear you had such a rough time as a kid and the school nurse was so horrible to you I hope that you can find some relief soon and I look forward to hearing from you xxx

all for your replies, sorry it took me so long to reply back, i just dont know what to say....
as of right now, i am not doing anything to manage my IIH except positive thinking, to be honest, treatment is expensive, and i cant afford it. and because i cant afford it and see a doctor regularly, i fear it maybe something much worse wrong with me....some days i feel fine, and others, i am sure i have a brain tumor or something....it is a viscous cycle...none of my friends of family get it, i feel so alone......i am just glad i found a place where people know how i feel!!