Hi Kristine welcome to the group. I was like yourself diagnosed in May 2010 had it for 6 months and got better but was never told it was a life long condition. Mine came back in November 2011.

This forum is great for any questions your have.

Everyone experience with this condition is different.

I had to tell my job this time. Its a hard illness to understand and there are days I don't feel the best so I needed them to know that. I'm very rarely out sick cause of this. I work in an office so I make sure I take my breaks and step away from the PC as often as I can.

Hi Kristine and a very warm welcome to the group. Sadly it seems none of us were told initially that IIH was a life long thing or that we could go into remission for anything between 6 months to 20 years in come cases. I suppose thisi s because there is still much unknown with this disease, and there are still few doctors who have knowledge or experience in IIH.

I'm so pleased the medication is working for you, and hopefully you will be able to function much better. I want to reassure you that you can work with this condition, especially if you keep your employers informed every step of the way, and adapt to doing things a little differently. I know it may sound easier said than done, and I wouldn't be saying this if I hadn't done it myself. I was diagnosed at 20 after a year of having it, was put on Diamox and went back to work 2 weeks after coming out of hospital. I also went back to college for 2 years, and then went on to have a good career with our Health Authority in the UK until retirement when I was 39.

I am no super woman I'm just like all of you, but I was determined that the condition wasn't going to keep me down and I somehow managed to find ways to adapt to feel like I had control of it. This is why I started this group, to help our members find ways to be able to cope and manage doing things that will enable a better life with IIH.

You have a wonderful attitude and I'm sure you're very stubborn which is a must with this, as well as a good sense of humour. I'm so glad that you joined us and I do hope you make a home with us here, our members are fantastic and inspirational people, who will have some wonderful and helpful advice and information.

Hi Kristine, so glad you came over for a visit.

Looking forward to keeping up on our chats. Just here you will find many more friends. And ideas, and support.
Please do keep a watchful eye (pun intended) on your vision. Need to get that pressure off your optic nerve! But, I am so glad you were able to find someone through the ER that has a bit of knowledge about IIH. I agree with the Diamox first, Topamax can come later (they are using a lower dose form of that now in combo with phen-fen as a diet pill.

Feel better soon!

Thank You everyone for the warm Welcomes I think I'm going to like this forum and the members allot...

sorry I have been out yesterday was not such a good day but happy to say today I have bounced back and I'm happy to be here.

Thank you for the encouraging words about being able to work I am a preschool teacher assistant and was working on becoming a Teacher (have my schooling done for it now) but don't know if that is a good move for the kids, they need a stable teacher that will be there pretty much everyday and not knowing when this will hit Im not sure I want to be in that lead position, besides I love being the assistant I get to be hands on with the kids more without all the paper work lol I was also finishing with my ECE (early childhood education), but working on becoming a vet Tech as well so I could graduate with two majors, and have a choice in careers. I think I will continue with that and excited to do so. Im very happy to know that I can still work with this condition, and am hoping by working it will help me with feeling better. Looking forward to getting to know you all

My goodness Kristine, that is quite a busy schedule that you have. Probably at this point remaining flexible is a good option. Assuming that your docs are willing to work with you, it should be a case of trial and error getting your symptoms under control, either through meds, weight loss (here we go again with that one :roll: )
or surgery or even a combo of them. "They" say that even a 10% loss in weight can make big differences. Worth a try, again.

You are so lucky to be working with the little ones. They are so eager to learn. I do hope it all works out for!

And, I am so glad you are here, too!

Hi Kristine! Welcome to the group! I'm so glad that you have joined us.

I can imagine how frustrating it must have been for you to have IIH come back to you after such a long remission ... I think your positive attitude and determination are wonderful, and I think it really does make a difference.

I'm hoping that the Diamox will get you back into a good place again where you are able to work and do all the awesome things you are planning, and be relatively pain free in the process. What dose do they have you on? I'm at 1000mg, but was on 1500mg for quite a long time. Was able to reduce the dose after some weight loss. I'm not in remission, but my symptoms are managed and I live a good life. *hugs*

Hi Wylee its great to hear from you again

Im on board with the meds and even the weight loss, I've changed some of the things I eat to better options, like no sodium or minimal, as it seems to be in everything we eat even milk ... all breads are whole grain wheat (not enriched flour) and instead of baked potatoes I make a yam, as I have found Carbs and salt trigger headaches for me, also everything in portion, and if Im hungry between meals I dont eat anything other than some kind of melon (watermelon, cantaloupe, honey due) or strawberries, blueberries, kiwi, banana. and other than a cup of coffee in the morning, I stick to water all day I TRY to drink like Im suppose to but for some reason I just dont think to drink during the day tell Im really thirsty or eating a meal, so I am trying to keep a glass of water by me at all times to try and help me drink more.

I am 4'10" and weigh 185lbs (I know way too much) when I was diagnosed in 2008 I was at 220lbs..... my goal is to get to 120-130 where I should be for my height.

I really don't want to have any surgery if I can help it I have read so many horror stories about shunts and how some of our fellow IHers have to keep having them replaced, it scares me. :(

Hi Banana's mom

for right now they have me on Diamox a 1,000mg does a day or 500mg pill every 12 hours, it seems to be helping but Im sure once I can get some weight off that will help...keeping my fingers crossed.....


Thank You both for your kind thoughts and words... hope you are both doing well also

I do have a question... maybe I'll post it in the question sight of the forum as well... but I have 2 daughters 7 years old and 10 years old... I have been pretty hands on with them, and now with this I have had days where it is hard to get up.

How do you explain or talk to your kids about this, with out scaring them.
My little one stresses over everything and we don't know why but since preschool will actually loose her hair in places the Dr. says from stress ( she does fine all summer here at home and it all grows back and within a month of starting school she starts loosing it again) Dr. says there is good stress and maybe she stresses on her work to much....

anyways sorry but that gives you some background.
How would you explain IIH to a 7 year old and a 10 year old?

Kristine, IIH is such a difficult adjustment for everyone I'm glad you've talked to dr about your concerns. I honestly would consider short-term therapy, especially for your little one. There are also a few books out there you can review-

When Pete's Dad Got Sick: A Book About Chronic Illness (Helping Kids Heal) by Kathleen Long Bostrom. Talks about Pete's anger and adjustment to having a Dad that was able to run and play to one that can barely walk. If I remember correctly, it has tips and suggestions for how to recognize problems and where to get help;

Mommy Has to Stay in Bed by Annette Rivlin-Gutman.Talks about bed rest, but can be used for short or long term issues. Basically addresses anger, fear, and boredom of the child;

Raising an Emotionally Healthy Child When a Parent is Sick by Paula Rauch and Anna Muriel. It's a book for parents that gives all kinds of advice, signs to look for, where to get help, etc. They used to use it for Harvard med students, so I'm not sure how clinical it is.

I think most importantly you have to be honest. Kids are very perceptive and usually become more angry or scared if they think you're hiding something. They also feed off of your anxiety or concern, so best to be honest and remove that additional tension. You don't have to give them details, but it's ok to let them know you're not feeling well. I really think a family counselor or therapist would be the best resource..they'd be support for you and your children. Most counties have a family counseling center of some sort that accepts Medicaid or works on a sliding fee scale..there are also private pay resources that do the same, so you may want to shop around and check for reviews. Your pediatrician may also have someone they use. I hope that helps!

Take care,
Julie

Medmisfit, Thank You for the wonderful suggestions, I will see what I can do today about getting these books. And I will also consider councilling, I know of a few around here who have wonderful reviews and may see about her getting into one of them. Again Thank You for Your Support Hope you are having a Wonderful day

Good info Julie.
Heidi, can we get a section where this type of info can be readily found? Nice to know that there are such books available. Sounds like the ideal answer to Keistine's situation, and maybe others with little ones too!

I hope they help. Kids seem to respond well to books and hands on activities, so fingers crossed it will help! And thanks Linda, I used to work in kids mental health so I have all kinds of nuggets..lol.