i was just dignosed with iih ,its so hard to live with ,so much pain,they told me to lose weight and it would help,,,did they tell u guys the same??

Hi Tanya!

Welcome to the group! I'm so glad you have found us, and I'm sorry to hear that you are dealing with so much pain right now. *hugs* I was diagnosed in November of 2009, and I remember how overwhelming and scary it was in the beginning. It really is a total shift in your way of living.

For some people, weight loss is helpful in managing IIH symptoms, or even sending it into remission. In my own journey, weight loss has definitely made a big difference in my levels of pain and my ability to function ... but I know others here who have tried weight loss and have not found much relief from it. So it is definitely different for each person. I'm curious, besides weight loss, what else are your doctors doing to help you manage your pain and get your IIH pressure under control?

I hope you find this site to be a good source of information and support. Please don't hesitate to ask any questions you have or to let us know how we can be helpful. You're not alone with IIH anymore!

right now they say i only have a mild case of it,,but they said they dont want to put me back on dimox ,i was on it and omg i got so sick from dimox,,the neuro did a spinal tap ,they said my pressure was ok,but ,and i did get rid of the pressure after the spinal.it stayed away for 3 months,now its comming back,so i am hopeing i can find some pain meds that will help with pain,.i am so scared that now they told me i do have it,they were not sure at frist,,but they say ya now,,,,,,and by the way thanks for talking to me,,yake care for now,

Hello Tanya, and

There is a whole lot of good info available on this site. You will see how others have also been told that losing weight will solve their IIH. Just wish it was that easy. It isn't. And, I am not so sure there is such a thing as "mild" IIH. If you have the symptoms, you have IIH. Like the pain that you are speaking of. Just because your opening pressure was not through the roof, your docs really should be treating your IIh the same as they would someone with high numbers. What is high for one person may not be to another.
You are very lucky that you have been able to find some relief without meds. The benefits from a lp do not last very long, so meds are frequently required. be sure to check out the medication mubles for info on other possible meds to try, if you need them. It is often difficult to find pain meds that can handle IIH headaches. It almost seems easier to try to find a way to keep the pressure down.

Looking forward to hearing more about you and your journey dealing with IIH.