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 Empty Sella Syndrome

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lisap

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PostSubject: Empty Sella Syndrome   Fri Mar 21, 2014 11:44 am

Does anyone know much about Empty Sella Syndrome associated with IIH?
Empty Sella Syndrome
Empty Sella

I seem to be hogging this site sorry, does anyone know much about empty sella syndrome associated with iih. Trying to research it on the net not getting very far.
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Heidi
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PostSubject: Re: Empty Sella Syndrome   Fri Mar 21, 2014 4:09 pm

Lisa hog a way that's what it's here for! This is for you to come and find answers. have a rant or just connect to other members. This is your place hug

I thought you might find this empty sella syndrome and IIH interesting. What you need to know if you have chronic IH - What Exactly Is An Empty Sella?

Reversible Empty Sella in Idiopathic Intracranial Hypertension

Empty sella

Hope they give you the information you want.
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Sophiasmom
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PostSubject: Re: Empty Sella Syndrome   Sat Mar 22, 2014 2:33 am

you're welcome Lisa.  there is no end to the frustration with this illness.
your description of the weight thing reminds me of someone on the dailystrength PTC forum, armywife96.  you could search for her posts, message her.  I know there are others too.  I have a friend also who is obese and anorexic at the same time.  she has to force herself to eat to stay out of ketosis, but never loses weight.  her family is abusive to her over her weight, when it is completely outside of her control.
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medmisfit
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PostSubject: Empty Sella Syndrome   Tue Mar 25, 2014 5:13 pm

It is so disheartening, and I completely understand! I gained over 100lbs after diagnosis. I did my best with 51% raw (fruits, veggies, nuts, seeds, grains, etc.) 80% clean (no processed food) vegetarian diet, but it's been hard for me to maintain over the winter. I think I've been hibernating, so craving more carbs and warm food..lol. I also have the exercise limitations because I get instant headaches if I press too hard, so it's very frustrating.

A neurosurgeon once told me to walk as far as I could tolerate without bringing on symptoms, then add a step a day. It works until I get frustrated because the progress is so small. I take a break and regroup, once I remember that any step forward is still progress. It can be a struggle and my body doesn't always cooperate, but I do feel better and at least able to tolerate symptoms. I would recommend starting with a food/symptom log. That's how I realized processed food brings on symptoms. I know other members have struggled with caffeine, dairy, and other food products, so it's at least a good place to start.

I hope the new GP is able to advocate and get you more information..good luck, and keep us posted!
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Julie
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