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 Patty - diagnosed 2005

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painoh
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PostSubject: Patty - diagnosed 2005   Mon Jul 19, 2010 9:00 pm

Hi, my name is Patty. I'm a 25-year-old, wife and mother of two. Originally from Pennyslvania, I've been living in Ohio since 2009. I look forward to getting to know you all better.

This is my [abridged] IH story.

In high school, I was a student-athlete. I never knew why when I practiced, got my heart rate really going, my vision would get so blurry. I assumed it happened to everyone. I know now that it didn't.

My "formal" introduction to Intracranial Hypertension came in 2005. During a routine exam, my optometrist noticed the indicative swelling of both of my optic nerves. I was young, in college, newly married, and pregnant. Needless to say, I was pretty naive to what this disorder had in-store for me. Of course, I learned quickly.

My eye doctor had suggested the swelling might be due to my pregnancy, but he referred me to an ophthalmologist anyways. I was about to leave for vacation that year and was busy beyond belief, so I cancelled that appointment and didn't reschedule.

A year later, back at the same eye doctor, he stopped mid-exam and asked, "Um, you're not pregnant again, are you?" I wasn't and wondered why he had asked. It was because my optic nerves were still swollen.

Time to visit that ophthalmologist who later confirmed my eye doctor's suspicion about my papilledema. The next few months brought a spinal tap and a visit to one of those fancy pants neuro-ophthalmologists.

I was on Diamox for nearly a year, although it never really helped my migraines. I hate pills.

In 2007, I became pregnant with my second child, so I made the decision to stop taking my prescription. By the third trimester, I was symptom free. I mostly stayed that way for two years.

Late last year, I decided that, after two kids, it was time to get myself back in shape. I took up running and weight training and an overall more active, healthy lifestyle. That's when it hit me. My symptoms came back!

So here I am, back to the regular migraines, the vision woes, the achy neck, and all that "good" stuff. Lucky me, right?

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Manda
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PostSubject: Re: Patty - diagnosed 2005   Sat Mar 12, 2011 4:47 am

Did the Diamox help with the swelling? It's interesting that the symptoms got worse after all that physical activity. From everything I've heard and read, one would think it would be the opposite! Good luck with everything!
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Heidi
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PostSubject: Re: Patty - diagnosed 2005   Sat Mar 12, 2011 5:12 pm

My experience has been a little similar to yours, I started with IIH in my first trimester although it wasn't diagnosed until 8 months after I had my daughter.I regualrly went to keep fit classes with my Mum, but found the headaches got worse, and it made me feel really off. When I told my Neuro at the time, he told me that I should do lighter exercise, as the kind I was doing was just aggravating the pressure. :shock:

It seems we can't win whatever we do, and I sometimes wonder when some of us are overweight, is it taken into account that physical exercise doesn't do us any favours, even though we want to stay fit and healthy :question:

Wouldn't it be great if the Neuro physio's devised an exercise programme we could follow, which would help us stay fit and healthy, but wouldn't interfere with the IH.

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painoh
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PostSubject: Re: Patty - diagnosed 2005   Thu Mar 17, 2011 2:33 am

Manda-- They never did another lumbar puncture while I was on the Diamox to check pressure, but my symptoms were certainly still there while on it.

As for the exercise, a friend from the IH Foundation told me once that it's pretty common actually for strenuous activity to increase symptoms. Stinks! Walking seems to be less likely to trigger them than running for me...so far. Neutral

Thanks for the thoughts!
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mel_icu
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PostSubject: Re: Patty - diagnosed 2005   Mon Mar 21, 2011 7:24 pm

Hi Patty!
For what it's worth exercise causes my symptoms to get worse too. Anything that gets my heart rate up does it, even stress.
Have you thought about calling the doctor and asking the nurse if they can increase ur diamox dose?

Good luck & welcome to the group!

Take care,
Melissa
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