While generally scouring the internet I came across some articles that talk about avoiding certain foods and vitamins because of IIH.
So far I have found that things high in vitamin A and vitamin D should be avoided.
Was anyone warned about this on diagnosis?

Hi Krystyn, I have read a lot about how certain things have to be avoided when you have IIH such as the things you mention, but never in all the years of having IIH was I told to avoid anything, only that I was fluid restricted.

It horrifies me that we are not advised about sodium and magnesium levels, which are reduced when taking IIH medication, nor are we told to cover up in the sun because Diamox affects the pigmentation in your skin, or to make sure that you keep hydrated in extreme heat when taking the medication. They don't advise about alcohol either, instead they rely on you reading the information that usually comes in a leaflet with the medication, which they shouldn't!

While we know they are treating the symptoms and effects with the medications they prescribe, they do fail to give us full information about do's and don't. Without knowledge on the do's and don't it can adversly affect our health as well.

Very well said, Heidi, and I could not agree with you more!
I was never told to restrict or avoid anything (even the fluid intake was never mentioned).
My doc did tell me about checking the elctrolytes and taking potassium supplements, that was the radiologist!
Let's not forget all the meds that can have IIH reactions, like Tramadol that so many of us were prescribed!
It is so important that we can share what we learn here because for many this is the ONLY source of info.

When I was put on Diamox I was told nothing at all, now I am still on Diamox as well as Topamax and Urex yuk is all I can say, All I was told was to reduce my salt intake and with the tablets to start with it was just Diamox all should be fine hahahaha, yeah right, now I have the other 2 added as well not sure how long I will have to be on them for now but not liking it very much at all,
As for a food list I have cut most packet stuff out and take away food as well and pretty much only eat what I make at home so no sauces and no sauces mixes I use herbs and spices and lots of veggies, I have been rewarded though as in the last 100 days I have lost 9.3 kgs and for me that is great,
But No The doctors never told me about anything just gave me the tablets and said take them, I have gone to them with my side effects and still nothing I am still on them it gets brushed off, I am off to see the neuro again on the 10th of July so we will see what happens this time, I am interestered IN finding out more about what we really should avoid and I guess we are all different so yeah maybe we should take up our own study and beat them at there own game go us

what is the problem with Tramadol for IIH?

Tramadol increases cranial pressure.


Someone on here once brought up a good point, if IIh is caused by obesity and 70% of America is obese then 70% of America would have IIH. It wouldn't be rare. I think it is strange that there is conflicting information about IIh because it has had a name for the last 100 years. The reason IIhers are suppose to stay away from vitamin a is because for some reason it is metabolised incorrectly in our bodies. I think it is reasonable to say that if the IIH body can't metabolise vitamins correctly then it isn't strange that it has general metabolism problems.


Foods I have read are bad for IIH are carrots and green leafy veggies (vitamin a), vitamin d, chocolate (caffine; let it be known my neuro suggests caffine during a headache, and tyramine which is in meat. so what are we suppose to eat? We are also suppose to excercise without the use of our abs!? Not to mention IIHers who aren't over weight... At this rate I don't think it is us with the problem, its a lack of interest from the medical community.

I wasn't really told anything when I got put on Diamox or topamax. I was told there might be some side effects the tingly hands/feet and taste changes but that was about it!

I only found out more information through my own research, like how topamax is sometimes used to help alcoholics stop drinking!! No one ever told me to not drink alcohol.

For the past year or so, I've tried really hard to mostly eat whole foods - I try not to eat many prepackaged or pre-made foods (including breads and pasta) and rarely eat any sugar (sometimes you do just want cake though!) and I find now that I just don't like the taste of pre-packaged and made foods/sauces etc these days, they just taste artificial. It has helped me feel better in general and I don't really get colds or the flu etc so I must be 'healthy' enough, I don't think it has helped so much with my IIH though but not feeling as lethargic and weighed down etc is nice especially when dealing with daily headaches and ear pain

i was only told to stop smoking or drinking alcahol and that i could only drink fizzy drinks after an LP

it was only when i read up that i stoped drinking anything with caffieen

Why no caffeine?? I know that it helps with low pressure headaches but is it bad for high pressure?

Is there a list somewhere? Even though I've been diagnosed for 6 months I've kind of had my head in the sand about it all hoping it would just go away. I really need to learn more

I have been wondering about caffeine for awhile because it seemed to me that it's a diuretic and a vasoconstrictor and it would only help, but a little research on pubmed reveals that caffeine increases production of CSF. major bummer!