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PostSubject: Recent diagnosis    Mon May 01, 2017 6:16 am

I've recently been diagnosed with iih. I'm currently on Meds to relieve some pressure from my brain until I have a lp and meet with the specialist. I have never been so scared in my life. Iv been up since 4:30am with severe pains in my legs (side effects from the current Meds). Doctors have made it all sound very simple, I was told to lose some weight & they would put me on some medication to manage the pressure. After reading some of the stories on here I'm not so sure they were just saying that to keep me calm. Can you live a normal life with this illness. I'm a single mum to two young children. I have to be okay
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PostSubject: Re: Recent diagnosis    Tue May 02, 2017 2:28 pm

It can definitely be an adjustment and take some time, but you can live a "normal" life with IIH. I think it's important to remember that most of the members that post here are still struggling, either newly diagnosed or having issues with treatment. There are many people that just have an episode of IIH, it's resolved and never comes back. Unfortunately, IIH and treatments affect everyone differently, so there are no guarantees. It's a lot of trial and error, but you have the diagnosis and seem to at least be on the right track for treatment.

Losing weight has helped some members. I personally don't do well with processed foods or meat, but gained most of my weight after diagnosis no matter how hard I tried to lose it. There's something about how IIH affects the absorption of Vitamin A and can cause weight gain. I also have the exercise intolerance, which doesn't help. Again, it varies by person.

I wasn't able to work for several years in the beginning, but had other health concerns and lived in a rural area where no one was familiar with IIH! It was also 20 years ago and there wasn't as much information or treatments available. Once I was diagnosed and found appropriate treatment, I worked my way back to full time hours and have an active social life..it's been over 12 years now, so fingers crossed! I definitely still have my days because affected by weather and different things, but very happy with my life at this point.

I would recommend starting a symptom log to see if you can identify any triggers or patterns to your symptoms. Follow this link for an example http://www.ihaveiih.com/t59-i-have-iih-symptom-log. I tend to include medications, foods, weather, and activities in my log because I know they can affect me. Look over the forum posts and let us know if you have any questions or concerns. We'll do our best to try and help you through it!

Take care,
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