Idiopathic Intracranial Hypertension Group

I just left yet another apt. This was my third neurologist. He came right out and told me

To lose more weight, " even as little as 10 lbs can make a different". I am currently 5'7" and 127lbs. If I lost the minimum he requested I'd be underweight, any more I'd probably be considered malnourished. Has anyone else experienced this?

Maryam, I have heard this repeatedly from others. The "lazy" doctor will blame IIH on being female, of child bearing age and overweight. They cannot wrap their pea brains around the fact that this is not always the case. Just plain lazy!!

Sometimes we have to just keep interviewing doctors until we are able to find one that will actually be good for us. I highly recommend that you keep trying. It can be so frustrating to hav e to keep looking, but when you find a good one it makes it so worthwhile. Especially since these folks you have seen are doing all they should be for you, I suggest asking around on the IIH sites for a good doc near where you live. You really need a doc to fight for you not with you!!

Weight can be an issue when it comes to IIH, however, there are many, like you, who are not overweight or who have lost weight and still have IIH. There is medical literature that backs this up. Your doc was just showing their ignorance and laziness.

This was my fourth neurologist. I was trying to get back into MGH, I am not sure where you live but I in Mass there are apparently only 6 neuro-ophthalmologist. One I have already seen, if anyone is in that area please contact me I can message you privately to warn you of what he , or I should say his nurse practitioner did to me.

This guy oversaw multiple clinics and had NPs running each site, none of which knew anything about IIH. He spent maybe 10 min with me and thought I was drug seeking and I didn't even ask for anything for pain. It's just the area I live in. I mean, they did a whole show of Intervention on the city. Now I'm getting off topic....

So he saw that my eyes were dialated a good amount and asked if I was on drugs, from what I have researched I have learned that when there is pressure on your optic nerves that plays a role in pupil dilaton. I'm sorry this took me way too long to write i will have to come back and finish later. But bottom line i went to Boston to MGH with the best doctors and there really wants anything they could do except tell me to continue the diamox which has destroyed my life in 3 short weeks.

I completely agree with wylee. I hesitated to use the word lazy..........but they are. Seems some doctors have no interest at all in this disease. Just wave it off. What hurts is when you do get another opinion, they go by what the last doctor had to say. It's a vicious circle. I know their are doctors out there that care about patients with this disease and want to help. they are hard to find.

My daughter has been shuffled around for 4 yrs. Finally has a vp shunt but not helping.

Keep looking. If you insurance covers out of state, look out of state.

My daugther is not overweight either. Don't give up !!!

why is that? i noticed that the doctors definitely go by what the last doctor said and my first neuro was a wack job

It sounds terrible but I believe they take the others diagnosis so they don't have to deal with someone with IH. So screwed up !!!! You might want to get in touch with Ih research foundation. www.ihrfoundation.org I believe that is the website. My daughter is registered with them. I looked at their site and learned you don't have to always have high pressures to have IH etc. Of course I did show that to a doctor and they said " it's just research". I wish I had the name of a good neurologist for you but we still haven't found one we like.

I was wrong on my previous count, I met four neuros and one neuroopthamologist and am meeting another neuroopt march 12, I'll let you know how it goes but you've probably already met the guy, maybe your daughter should switch to pre med and become our savior

LOL..............she has thought about it. Let me know how your appt goes.

Ughhh it got pushed back four days, what a bummer

Oh sweetie, finding a decent doctor unfortunately is 90% of the battle with this illness. I feel pretty lucky that I'm only on my second neuro. Keep us posted.