Well after I went through menopause, gained 20 pounds, went to medifast and lost 40, quit medifast and gained 35 back very fast.....my symptoms became difficult to deal with. I now cant seem to lose a pound no matter what I eat !! I just read about the Kempner rice diet. Wondering if anyone has heard of it or tried it for a short time???

I would not eat rice and expect to lose weight. you need to minimize carbohydrates.

it could be, Pip. if it is dependent on the amount of fat in your neck, compressing your airway or jugular veins, it could be very sensitive to volume/diameter. the resistance of flow through a tube is proportional to the inverse of the fourth power of the radius. that means that a very small change in radius can produce a big change in flow. sounds like you need to lose ten pounds. I know someone who was thin, but then got even thinner, and noticed a difference in how he felt.

Thank you for the responses! I will try to lose the last ten. Heck I will lose 20 if it will get rid of this dreadful disease!

Yes, I wouldn't eat rice either. I would do Atkins or the Ketogenic (not sure I spelled that right). Something that just focus's on low carb foods that are not processed. But, this is just my opinion and what works for me. Also intermentent fasting works for me as well.

the only problem with Atkins is that too much protein increased my ICP. I think it was the metabolism to ammonia that I couldn't handle. eggs are still completely out.

Really? You need to write a book on this disease because I'm probably doing all this stuff to make my condition worse without even knowing it.

oh well, maybe someday. I've written 4 papers, two of them published.

I'm sure I have a weird metabolism that isn't necessarily the same for others. I know of others with IIH who can eat eggs. but it's something to be cautious about. there is a concept in Multiple Chemical Sensitivity that I think applies also to IIH (well because I think they are one and the same) called "masking". the idea is that if you have multiple exposures all the time, then you can't tell what is making you sick, because you are always sick. if you have the discipline to start eliminating exposures and triggers, then you can start to see what each individual trigger is capable of doing. then you know better what to avoid. with MCS you have to spend a lot of time alone, in a safe house. it's really not possible to work. I think that people with IIH who work are pretty much incapable of eliminating all of their ICP triggers. work makes IIH worse, on multiple levels, unless one could work from home.
FYI every person with IIH who I have convinced to take the QEESI test for MCS, is positive.

another way of thinking of masking is that with multiple exposures your ICP baseline is plateaued at a higher level. once you start eliminating triggers, you can reduce your ICP baseline to a lower level. then you start to perceive the ICP spikes caused by triggers. if you drop to 20, you know when you hit 27. if you are always at 27, then you can't tell the difference as much when you spike to 32.

Hi Sophiasmom!
You seem to know a ton about this stuff, so I have a question. Where did you find the relation between fat in the neck and the severity of IIH? I have always had the feeling, like from day one, that this was a direct result of something going on in my nick, or rather in that general area. I don't think that the doctors that I've seen for my IIH understand it. They treat it like any other idiopathic process,give me drugs return visit in 3 months.
My back story is I was always 120-130lbs. Then I quit smoking 2013 and gained 90+lbs in about 8 months. Sx started then, and I ignored for about 6 months until I couldn't take the migraines with auras happening so often. Almost daily. I went from 224 to 175 and that's where I am now. Still with sx. Still hating Diamox.

hi Hopeful. I have thought a great deal about the relationship of structures in the neck and the effect on the airway and on the jugular veins. this is a hypothesis of mine, which I have published. if being obese and having fat in the neck compresses the airway and causes sleep apnea, why wouldn't it also compress the jugular veins and cause PTC? they are right next to each other in the neck, and veins are compressible. the venous system is so low pressure that an increase in resistance here will change the pressure differential between the ventricles and the venous system and could effect cerebrospinal fluid drainage. given your story, I would say you should do anything to lose weight. even if you have to do gastric bypass. for some people weight loss doesn't help, but it sounds like the weight is definitely involved in the pathogenesis for you.

I was having trouble sleeping flat, and my Dr wanted to put me on meds (I'm currently doing fine with just the lumbar shunt). I did lots of research about foods that are good for inflammation (anything green mostly it seemed) and for 3 weeks I was super good about only putting that stuff in my body along with an over the counter diuretic (because what he wanted to put me on what a really powerful one, that I wanted no part of it because of side effects, didn't seem worth it for the issues I'm having). That helped tremendously. I've since stopped doing that (I know I know, if it works, stop, right? LOL) and I'm feeling every bit of not doing it. So, for me food is potentially huge in what helps and doesn't help and I'm sure the diurex had a part too, and because of that I drank a ton of water too. Just my experience.

Just saw your posts Sophia's Mom! You should write a book! YOU ARE AWESOME FOR INFORMATION! I would like to see your opinion on the neck posting for neck fat.

I am now 152. From all the weight loss I have about 12 pounds skin so that puts me at 140 because obviously I can't lose that. I am going to lose 5 more pounds.

Symptom wise my attacks are now are 2 days instead of 9. But day to day my nightmare continues. I have the constant headache, sometimes ice picks, eye pressure, I get dizzy and sometimes just want to vomit. The fatigue is so difficult. Most times I work from home. Waiting for my job to get fed up.

Praying that I will go into remission. I will not give up or give in to this disease!