Hi Everyone,
  My name is Colleen and I was diagnosed in May with IIH. I have had symptoms since I was 17 years old but all of the doctors would say my bloodwork was fine and that it was all in my head. In fact I started seeing a psychiatrist long before I was diagnosed with IIH due to this. I just turned 30 and went to an eye doctor who found my condition after I complained of pressure behind my eyes and everything appearing dim. When the examination showed i had started to lose a fair amount of my peripheral vision and the classic puffiness of the eyes he sent me for the full IIH workup which came up positive. I felt fantastic after the spinal tap for the first time in a very very long time but it didn't last too long.
   Now due to my insurance and how seemingly rare the condition is I cannot find a doctor who will treat me. In fact after going to several neurologists who told me A) that they don't treat this and B) the only symptom I would be having is headaches and not the living hell I go through on a daily basis and than hand me a print out of my condition off of webmd has made me wish I had never been diagnosed at all. They all tell me there is only one doctor in the whole state who takes my insurance and has treated this condition but no one can get in to see him or even contact him because he is that in demand. I am at the point where I am ready to just accept my fate of going blind because it has to be better than being treated like i am insane again. 
  My family and friends are sympathetic up to a point but even my own mother has told me to exercise because she read it will make it better, not realizing how exhausted and in pain I am everyday of my life because of this and having to take care of my two young children. Nobody seems to understand and I can't stand being treated like it is my own fault that I have this because I carry a few extra pounds or that I am lying about how I feel. Sorry to be pessimistic it's just bad enough being told you have a chronic condition that will keep you in pain your whole life only to find that no one will help you to even manage the symptoms you go through. The most help I have had is from the local ER who did the spinal tap gave me a 10 day supply of 500 mg of diamox only to find out no other doctor would continue giving it to me because it has to be monitored closely and none of them want to be the treating dr on this.  :Angry:

Welcome to our support group Colleen hugI am so glad you  found us. I am very sorry but not surprised that you're having this terrible time with doctors and treatment. It seems to be an ongoing story with many of us wherever we live.

Firstly, don't ever let people make you feel that your condition is your own fault, because it could easily be them who could have it. There's a reason why the idiopathic is there, it's because it means no known cause. The reason they say weight is the reason in a lot of cases is because there are more known cases for women who are overweight, but there are also cases that show that a percentage of those women have managed to lose weight, but still have IIH.

Here is a link to resources that are provided by the IH Research Foundation that hopefully will be of help to you, Resources you could also contact them and they may be able to help find you a suitable doctor who can treat you. We're here to help you and that's what we are going to do, so please don't give up hope.

I agree..don't give up! Just hold on to how good you felt following your spinal tap and know that it's possible. I know some members have had good luck with the IIH Research Foundation, so give them a try. You should also be able to contact your insurance carrier for a list of acceptable providers. They may even do the research and find a provider that specializes in IIH. If not, just request the list and make the calls yourself. It's tedious, but worth it. You may not find an IIH specialist, but can usually tell by the office staff whether it's worth a visit. You just need someone that will listen and is willing to treat you. Then, make sure you have someone managing your vision. If meds don't help, they'll refer you to neurosurgeon anyway..he'll become your primary until IIH is managed. I honestly held onto my neuro-ophthalmologist through all my moves and changes because he was the most supportive. He would advocate for me based on symptoms and affects on my vision, so you really just need one good relationship.

Let us know if we can help..just know you're not alone!
  
Julie

Hi Colleen and welcome to the forum.  
You may have better luck finding a Neuro-opthalmologist that has experience treating IIH (sometimes regular opth. too) than a neurologist.  Julie's suggestion to contact IHRF is a good idea.  They may be able to point you in the right direction.

Thank you everyone for your support! It helps to know I'm not alone in this frustration. I will follow your advice and keep trying to find a doctor. In the meantime I will keep seeing my eye doctor and gp on a regular basis and try to find ways to relieve some of my symptoms so I can keep up with my kids. It is hard to always put on a brave face for everyone so it is nice to have somewhere I don't have to.