I had headaches 2 years ago and a neuro I saw gave me Topomax. He told me if I feel better, that's good and if I don't come back and see him. In January this year I had a sudden onset of excruciating headaches and found a new headache specialist neuro. This one diagnosed me with cluster headaches, but he told me he suspected pseudo-tumor. He said, that's all I'm saying except, "if you go blind get to the ER immediately and give them my soap notes."  Being the educator I am, I started educating myself on both conditions and joined a cluster headache facebook support group. After 2 months of posting my symptoms a young lady told me you don't have CH you have IIH and told me to go to an Ophthalmologist ASAP. I made an appt and within 30 seconds of looking into my eyes he diagnosed me with IIH. This was one week ago today. I am waiting for approval to the PTC clinic in Phoenix, AZ and hopefully will be accepted there by the end of the week. I have an appt for a field vision test Monday.  

I feel as though my life has gone downhill so quickly. I don't like to leave my house. I have to force myself to go out and do things with my friends and mostly I wonder why didn't that neuro in January just send me for an LP or to the eye doctor?

Hi Mary and welcome to the forum.  I am sorry for the delay.  Seems our membership is getting thinner and thinner.
Your story is very typical, I'm afraid.  I don't know what the deal is with neurologists, but they are much more frequently NOT patient friendly or useful.  I hope you do have better luck at the clinic in Phoenix.

DO NOT WAIT FOR BLINDNESS TO OCCUR!  In the early stages, vision issues are generally reversible.  If all else fails and you cannot get in to be seen at the clinic, a trip to the ER for a lumbar puncture Spinal tap) to relieve the pressure is warranted.  Keep in close contact with your Ophthalmologist until you have another doc you feel very comfortable and confident with.  Many of us have had to do quite a bit of searching to find a good doc, but once you do it is so with it.  Be assertive.  Don't let anyone try to pooh pooh you away.  And hopefully someone will be around on the site here to help you if/when you need us.

Welcome to the group Mary! I also apologize for the delay. We do try to respond quickly, but it varies since all of us also suffer from IIH and other disorders.

I agree with Linda. It's difficult to find anyone that knows about IIH, but the ophthalmologist can monitor your vision until you're able to get to Phoenix. They do use Topamax to treat IIH, so wonder if the original neurologist suspected it. It all seems a little odd, so hopefully Phoenix will be able to help.

Check out the site and let us know if you have any questions or concerns.

Take care,
Julie

Hi Mary and a very warm welcome, i took am sorry for the late reply, but as Julie said we all have IIH and other health issues, and we are a small team. We do strive to answer as promptly as we can, but inevitable health can get in the way. Please don't let it deter you from posting.

 You may see when you read other members stories that they are all similar to yours unfortunately. I hope that in Phoenix you get the right treatment and a doctor you can be confident in. We have an IIH Registry on our website, in the hopes that members will join and add their IIH specialists to it, so that other members can search for and find a specialist in their area. 

We have lots of information but if you can't find anything please ask.