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 im almost 20 and was just diagnosed

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sammie0404
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PostSubject: im almost 20 and was just diagnosed   Thu Sep 19, 2013 2:34 am

hello, my name is Sam and i am almost 20 years old. i feel as if im the only young person with this disease... i feel alone. i just want to know why i have this and what the heck caused it. I am only about 20 pounds overweight so was told i have to lose that... no big deal. i have always been very athletic. 

also, yesterday i lost my job as a nanny... their reason being they dont feel comfortable with me being with their kids because they believe i could pass out.. which isnt even a symptom of this disease. i am struggling and have my own apartment with bills and rent to pay! i am so stressed out.  any help or stories appreciated? 

-Sam
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Sophiasmom
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PostSubject: Re: im almost 20 and was just diagnosed   Thu Sep 19, 2013 3:54 am

hi Sam;
I'm so sorry about your job, and about you having this awful condition.  you don't sound very overweight so I am skeptical that has a lot to do with it.  where in Nevada do you live?  I am in Las Vegas.
Deb
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Wylee
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PostSubject: Re: im almost 20 and was just diagnosed   Tue Sep 24, 2013 12:04 am

Hi Sam, and welcome to the forum.
So sorry to hear about you having IIH, and now losing your job too.  Talk about added stress.  I would think that there should be some kind of protection afforded to you so that you cannot be fired for something like this.  Have you checked with the Nevada Dept of Labor?  Are you an Independent Contractor or do you work for a company?  Do what you can to get that part covered.  In fact, does your State cover illnesses for unemployment compensation?

Weight is NOT the only cause for IH.  In fact, it is commonly called IIH because the cause is unknown, it is "Idiopathic." Losing weight is always better for your health, in general, but do not let it stress you.  Have you been on any acne meds?  Some can cause IIH.
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Jasmine-here

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PostSubject: Re: im almost 20 and was just diagnosed   Thu Sep 11, 2014 12:18 pm

Hey Sam,
I was diagnosed after I recently turned 17, I have only been diagnosed for around a month. 
I also feel alone a lot of the time because there is no one around me who has this and I feel like when I explain to people, they don't understand what it is I have, or they just think 'oh she's just got another headache'. Sorry to hear you lost your job, I'm currently in full time education studying my last year of A levels and I'm struggling to cope at school with having this on top. ❓
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Wylee
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PostSubject: Re: im almost 20 and was just diagnosed   Thu Sep 11, 2014 7:15 pm

Hi Jasmine, and welcome to the group.
Being young and having to deal with IIH is especially difficult, just know that you are not alone.
There is data that suggests that being overweight may cause IIH, but so might certain acne meds, narrowed veins and many other things. It is helpful if the docs are able to find out the cause, but don't be too terribly surprised if that doesn't happen. More often than not, they merely treat the symptoms. Are you on Diamox or Topamax? They are often the first drugs tried.

Feel free to tell us more about yourself, or come to the forum to ask questions, rant and rave or just to chat. We are here for you.
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Jasmine-here

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PostSubject: Re: im almost 20 and was just diagnosed   Fri Sep 12, 2014 6:49 pm

Hi, 
thank you Smile
so far they don't have any reason for why I have IIH. I'm taking Diamox but I'm stopping it as they haven't helped with the headache and they make me feel down and alone. Hopefully I will have some medication that will suit me and make me feel better and more myself, at the minute I just feel it's a rough road and I want the old me back, if that makes sense.
I'm really glad I found this page, it's nice to meet other people who have the same condition and read their story about it
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Wylee
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PostSubject: Re: im almost 20 and was just diagnosed   Sat Sep 13, 2014 2:28 am

don't stop taking the Diamox on your own.  contact your doc first.
It is difficult to deal with IIH, especially if you are having headaches.  They can be so disabling.
If you would, please give us a brief narrative on your IIH story.  It might help you as well as us to connect with you better.  You can start your own thread in this teen section.
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BananasMom
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PostSubject: Re: im almost 20 and was just diagnosed   Sat Sep 13, 2014 11:24 am

Hi Sam and welcome to the forum!  So sorry to hear about your diagnosis, and especially about the job loss.  How unfair of your employer to terminate you without even a valid reason.  Like others have suggested, I would definitely look into what your state can do to help you with this based on the law.  As far as why you got the IIH in the first place, weight might be part of the picture, but there may be other triggers as well.  Think about any medications you've been on recently ... including antibiotics, birth control or hormone treatments, etc.  So little is known about IIH, they are still learning what medications may trigger it in some people.  As others have said, many cases are idiopathic, meaning they never really figure out what triggered it.  We're glad to have you with us, and happy to help in any way we can.  Smile
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