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Lattana
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PostSubject: Question in need of an answer   Fri Nov 22, 2013 2:42 am

I am becoming more and more curious about what I am being told concerning the concept of weight loss and IIH.  Every doctor I have met with since I finally received help for my problem has told me that I won't get better until I lose the weight (we shall just forget the point about how I wasn't over weight until I took Prednisone for the IIH in the first place).  This will require a great deal of effort for me due to about 7 major eating related illnesses and concerns, so I am curious as to whether or not this is indeed and effective method for treating IIH.  I have read all the research journals on the topic that I can find, I have been told over and over that it is my fault I am sick because of my weight and I am reaching a point of pure break down.
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Wylee
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PostSubject: Re: Question in need of an answer   Fri Nov 22, 2013 4:08 am

There are studies that show there are connections between IIH and:  being female, of child bearing age and being overweight.  But, we have members who are/were thin when they first showed symptoms of IIH, we also have men in our forum, and there are some who are post menopausal (some are even children).  So yes, the docs like to think that losing weight is a magic cure, of course, it is NOT.  Being of an ideal weight is always a healthier alternative, so it is a goal we should all try for, but no, having IIH is NOT your fault.
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medmisfit
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PostSubject: Re: Question in need of an answer   Fri Nov 22, 2013 3:58 pm

Agreed. Weight definitely affects pressure, but some gain before and some gain after. It seems like research is clearing up the weight myth, but doctors and schools haven't caught up. I think they focus on weight loss because it's easier for them and it's the least intrusive. I also gained a lot of weight AFTER diagnosis, so I understand your frustration.

There are members that have found certain foods aggravate symptoms, so a food log wouldn't hurt. Scale back to fruits, vegs, lean meats and slowly add in other groups to see if you notice any changes or affects. For me it's meat, dairy, and processed foods.. part of it is metabolism, but there's also something about the way our bodies process Vitamin A. Ohio State University has been working on a study and illustrate how that affects weight in patients with IIH..may be worth a Google if you're interested.
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Sophiasmom
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PostSubject: Re: Question in need of an answer   Fri Nov 22, 2013 9:23 pm

look up the modified Dandy criteria; the criteria used to make a diagnosis of IIH.  OBESITY IS NOT A CRITERIA.  if you were not overweight at diagnosis, then overweight is not a cause of your IIH.  I also was still very ill after losing weight to the point I was stick thin.  at the point I can trace my first symptoms back to, I was normal BMI and very active.  there are MANY of us that are normal weight or very thin and still have IIH.  for you to be drilled about this is abusive in my opinion, especially since you know you had it when thin.  I don't think that weight loss is a cure for you.  it might, at this point improve your situation, however.  so it is definitely a goal, but probably not an end point, and not something you should be made to feel so badly about.  I also was on prednisone last year just to be able to function, and I got very fat and cushingoid.  since that time however, I had major jaw surgery to treat my sleep apnea, and moving my mandible forwards eradicated the valsalva trigger for my ICP elevations.   I'm way way better and lost 26 pounds spontaneously in the last year, just with being able to exercise (oh, OK I gave up chocolate too, lol) now while I could not before.  my complete story is in the IIH successes section.  I should probably post a brief update soon to what I said at that point.
Deb
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