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 Susan - diagnosed 2009

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skgregory
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PostSubject: Susan - diagnosed 2009   Sat Mar 19, 2011 5:50 am

I was diagnosed with IH about 2 years ago after suffering for a year with these headaches. I first thought it was sinus. I have been to 3 neurologist before I found one that treated me like a knowledgeable human being and offered something besides "loose weight". I am now taking Diamox 5 X a day. I have had several spinal taps and one intercranial pressure test done. Someday's I feel like I am just in denial that I have this disease because there is nothing that will make it better and other days I curse how I feel.
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Heidi
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PostSubject: Re: Susan - diagnosed 2009   Sat Mar 19, 2011 2:37 pm

A big welcome Susan, I understand how you feel. this is a very hard disease to live with, especially as no day can be the same, and there aren't any definitive answers to explain why you have it. What makes it more frustrating is when it's hard to make people understand, because they tend to think you don't look ill at all.

I don't suppose the side effects from the Diamox help either, so it's completely understandable that you feel the way you do. We understand that here because we all have felt and are feeling the same, which is why we try to help our members to find ways to make life better, using methods that have helped us.

Hopefully we can find ways to help you too, and please don't be a stranger hug
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Krissy08
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PostSubject: Re: Susan - diagnosed 2009   Sun Mar 20, 2011 12:22 am

Hey Susan,
I hope you are feeling good today. If you ever need an ear don't hesitate to email me.
Take care
Krissy
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mel_icu
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PostSubject: Re: Susan - diagnosed 2009   Mon Mar 21, 2011 6:49 pm

Susan,
I just wanted you to know that a lot of us have felt like that too! It's often hard to find a doctor that will take the time and listen to how ur feeling and really look for what is wrong. I know I felt like doctors thought I was drug seeking or just depressed. Infact I had one doctor tell me i needed to see a therapist because it was "all in my head"! It seemed like it took forever for a doctor to find what was wrong with me & still seems like a never ending nightmare of pain and doctor visits.
So just know that ur not alone!

Take Care,
Melissa
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