PS I forgot to ask this also.....is there a difference between an MRA and an MRV......I thought I needed an MRV but I ended up getting an MRA...isn't the problem with the tranverse sinus vein? I got my bill today and I had an MRA instead which makes no sense....unless I'm wrong.

Great questions. There is indeed a difference between an MRA and an MRV. An MRI/MRA is most standard and used first in the vast majority of cases. The A part is for angiography and refers to how they do the MRI scan, then inject dye through an IV in order to accomplish the MRA portion, simply meaning an MRI with contrast dye. The MRV is magnetic resonance venography, and focuses more on the veins of the brain. Not everyone with IIH has an MRV done, but absolutely everyone should have an MRI/MRA done as the work up. The MRV would be to look for a structural cause for IIH (rendering it no longer idiopathic), such as a blood clot or narrowing of the vein. A lot of people with IIH will have a normal MRV, and a normal appearing transverse sinus vein, but some do not and sometimes the structural cause can be addressed. They are more likely to order the MRV if the IIH patient is "non-typical," meaning not obese, outside the typical age range, etc.

As for diet...there is a huge variety of recommendations, even amongst experts, which often contradict each other. So it can be quite confusing to find the best thing that works for you. Personally I am not a fan of "diets" in the traditional sense, but more of a lifestyle change away from processed, convenience foods to a whole foods focused diet. Meaning, the majority of foods should not come out of a box or a can, and lots of them should come from plants with an emphasis on including quality protein sources. Healthy fats are important too! I actually avoid anything that is advertised to be fat free or sugar free, it is usually altered in unhealthy ways. In my opinion, eating less salt takes care of itself once you cut out the majority of convenience foods. And a lot of us have had a reduction in headaches by eating gluten free. Here are a couple of resources:

http://drhyman.com/blog/tag/weight-obesity/

http://www.100daysofrealfood.com/start-here/

only got the abstract here for the 1974 study but it seems a little out of date??.....
http://archinte.jamanetwork.com/article.aspx?articleid=582871

Based solely on reading the abstract, I would venture a guess that the reason there isn't a lot on the rice reduction diet beyond the 1974 study is because that particular diet wasn't worth pursuing. Sounds like they put an extremely small sample size (9 people) with PTC (which the author describes as "benign") on a restricted diet and their conditions improved with weight loss. I would surmise that the take away is that in patients with IIH and obesity, weight loss may help. That was probably news back then! I doubt that the particular diet is worth pursuing. Just my two cents guess. :)

I said my bit before about managing expectations although please do be encouraged. you never know how it might go for you :)

I would also like to second RN - natural foods has been a real boost to me (i have poor kidney filtration so i have to look after those too) So i do low salt, gluten free, caffiene free, dairy free. (the dairy free was a strange one i added in, because milk suddenly tasted rancid - i blame the diamox)
non processed is the easiest (and cheapest) way to manage gluten free - cut out sausages, burgers, pies etc and just stick to real meat and veg and rice and jacket potatoes etc. you can buy gluten substitutes in everything but they tend to be expensive and never quite as good - plus pad them out with extra calories to make them taste better so you need to be careful with them.

If you are into baking etc here is a web page for gluten free baking:
http://glutenfreeonashoestring.com/
it is too much hard work for me, and i have to be careful - I have found gluten free stops my headaches and indeed speeds my metabolism, but even too many home made gluten free cakes are not good for my waistline ;)

thank you both :)

the CPT billing code for an MRV is the same as for an MRA. so don't go based on what your bill says. get a copy of the radiology report, and see what it says it was for.