Hello Everyone!

I have a general question.  My neurologist basically said to me that I should only be on Diamox for about 6 months to a year and that if I lose weight my symptoms will go away, even though I have already lost about 10-15 pounds in the past few months.  I started walking 5Ks last October to start getting some of the weight off, as I could really benefit all around from getting healthier.

I guess my question is this, am I just really crazy and a little skeptical if I don't fully believe him?  My thinking is, they cannot really tell me why I have this to begin with, so how can they know what will ultimately make it go away.  He also told me that he has never known anyone needing to be on medication long term or for the rest of their life, but I have seen on other forums people who have been managing this for years. 


 Thank you to anyone who can shed a little light on this

Hi Jex, I completely get where you're coming from. As it is commonly seen in overweight women, doctors don't take into consideration that there are also other  triggers for it. Remission can happen with weight loss, if weight loss is indeed the cause. Well done for losing 10-15 pounds.

There are some of us here who have other triggers for it, in my case it's hormonal, there are some who have been on antibiotics, had an ear infection, chicken pox, Polycystic Ovary Syndrome. 

Although the medications aren't supposed to be long term, there are some that are managing their IIH on medication and the odd lumbar punctures alone, and have done for quite sometime. I was on Diamox for 12 years with a lumbar punctures before I needed my shunt. It is very naive of him to tell you that no one is on medication long term, especially as he has obviously not done his research. 

We have lots of information on here, and you will no doubt see that the information he has given you, is not entirely the full picture. Unfortunately there are still doctors who have rudimentary knowledge on IIH, and many still call it by its old names of PTC and BIH. It is no wonder why so many people with IIH are confused by the mixed and often wrong information they are given.

I agree with Heidi, and the misconceptions are staggering! We always encourage members to be healthy, but weight loss isn't a guarantee. I actually gained over 100lbs AFTER diagnosis and really struggle with it. I tend to lose weight when feeling better, but pack on the pounds when symptoms come back. Of course activity level decreases and I eat more processed food because it's easier, but it really makes me wonder about cause and effect.

Deborah M Grzybowski and other staff at Ohio State University have been doing research and studies. I think the most interesting and relevant to us is the role of Vitamin A. It's linked to "a critical transport protein for thyroxine, which is important in controlling metabolism and linked to obesity". Dr. Grzybowski hypothesized, among other things, that if we can control our Vitamin A intake/ absorption it can assist with weight loss, which in turn could affect the flow of CSF. I heard her speak and honestly all I can remember was her recommendation to eat more basil and lemon grass..lol. You can Google her to find the research or IHRF has the 2011 IHRF Patient Conference Presentations DVD available in their store ([You must be registered and logged in to see this link.] for anyone that's interested in learning more. It was a 2 day conference, so there's a lot of information. I also want to caution members because my surgeon at the time sat on this panel and he kept telling me there was nothing wrong or any more they could do for me. I suffered with headaches, vision loss, spinal pain, etc for another 3 years before I went to Cleveland Clinic and was told the tests he was using had been irrelevant for several years and they scheduled me for surgery right away. I say this just to remind everyone that even the experts don't know everything. I think the best advice I was ever given by a physician was "you know your body better than anyone, so just keep trying until someone hears you".

Ok, sorry for the tangent. I get very frustrated when physicians make members feel like IIH is their fault or in their control. Weight loss has helped some members, but it's not a cure and doesn't help everyone. That being said, I think we should all strive to be as healthy as we can because it can only help us deal with the symptoms and long term effects of IIH.

Thank you so much for replying!  this is kind of what I figured as I have been doing my own research since February when they suspected it was IIH through different clinical studies I have found online and forums like this one.   My thoughts are, if I am going to talk to anyone and see how this can possibly affect me, it's best to be in contact with those who have it!  I have a feeling that my neurologist knows of this, but has not researched it fully.  I have looked into whether or not there is anyone in my area  who specializes in IIH and found no one as well.  I am not the kind of person who takes a doctor's word as absolute truth and have always been the type to research things, so if I find certain things that work for me as well, I will make sure and let others in this group know.  I have also been going over some of the other posts to get more information as well. Again,  for the replies!  it certainly helps!

I lost 40 lb after my symptoms started and I was still sick as a dog when stick thin.  weight isn't the cause for many.  I know other thin people with IIH.  I know many who gained weight only after becoming ill.  I felt better treating my sleep apnea, and I went into remission after jaw surgery.  make sure you get a brain MRV and neck MRV.  don't let him assume that you are "idiopathic" without ruling out secondary causes.  he doesn't sound like he has much experience with IIH.  maybe you should get a second opinion.

I was thinking about the second opinion thing too, I have been looking around at other neurologists in the area.  I did get an MRI, MRV and MRA done and it was clear of any aneurysm or tumor, so at least that was done properly!  I figured as soon as he brought up my weight that it was probably not the cause for mine, that and at different lower weights I still had the headaches and everything too, except for the papillidema.  I actually looked for anyone who specializes in IIH directly and found no one in my area.  I am amazed at how little doctors know of this.  In my opinion if they have someone who has this as a patient, they should be reading articles, studies, dissertations, you name it on the illness!  I know that is what I have been doing, lol! I think sometimes we have to become our own doctors and study on our own.  One of my friends put it best, sometimes we have to study and read up on our own illness so the doctors we see don't kill us, lol!.  ! Take care!

I agree with you.  I see people all around me with symptoms of IIH who are not diagnosed.  they get better on Topamax for their "migraines".  yeah right.  I think the docs don't even know what they are looking at.  truly the only way to rule out IIH is to do an LP.  but people with "migraines" generally don't get LPs as part of their workups.