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 Ally - diagnosed March 2011

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PostSubject: Ally - diagnosed March 2011   Tue Jan 03, 2012 10:04 pm

Hi my name is Ally. I was diagnosed with IIH in March 2011. I have always suffered with headaches since my early teens. In mid February I started to have pain in my eyes and the top of my head. Within a few days I had a rushing sound in my ears. Went into the emergency and was told it was a migraine and sent home. About a week later I developed double vision and was vomiting constantly. Back into emergency and again was told it was a migraine, given medication and sent home. This continued for another week with almost daily trips to the ER only to be told it was a migraine. Finally another trip to the ER and a doctor decided to listen to me when I told him it was not a migraine as I have had migraines for years and this was different. Did a CT and MRI/MRV which was normal. Then a LP which showed an elevated pressure. Since this time I have been on Diamox 250mg 4X per day and numerous headache medications. My double vision has cleared up and my optical nerves are back to normal.

I still suffer from almost daily headaches and whooshing/ringing sound in my ears. My eyes always feel like there is pressure behind them.

My short term memory is almost non-existent now and that is making it extremely difficult as I am a university student. I have very little energy and feel exhausted all the time.

This is difficult disease and I have a hard time finding a doctor who will listen to me. My neurologist is almost three hours away and I cannot seem to be able to talk to him on the phone.

Anyway, I just wanted to say Hi and let you know a bit about myself.
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PostSubject: Re: Ally - diagnosed March 2011   Wed Jan 04, 2012 12:47 am

Hi Ally, and welcome. I am glad that you have found us. We will do whatever we can to help you, with loads of moral support and encouragement, and the benefit of our experiences. Unfortunately, this disease seems to be a very much "been there done that and didn't even get a T-shirt!!"
It does seem to be difficult to find doctors who know (and/or care) about IIH. You are not alone in that department. I highly suggest that you go through your health plan directory of approved providers, and phone each one, one by one, startung with Neuro-Ophthalmologists, than Neurologists, than Neuro-Radiologists, Ophthalmologists, and GP's. Ask to speak to the doctor's nurse. Tell the "gate keeper" (Person who answers the phone) that you have a complex medical condition and only the Doctor, PA or Nurse would understand. Then ask if they have experience in dealing with IIH, and if they do, what is there usual plan of action? You should be able to weed through the list rather quickly (assuming you can get past those darn gate keepers!) and find some help closer to you.

Have you looked at the side effects of Diamox? Sounds like you may be feeling some. The med is very useful, and it does take what seems like forever to get used to them, but the side effects can be troublesome.
The other symptoms, the pulsatile tinnitus, the daily headaches may indicate that your pressure is still too high. Sometimes another lp with a greater reduction in fluid followed immediately with the Diamox routine is helpful. One of those things to discuss with your doc.

Again, welcome to you Ally. Feel free to ask any questions. We'll do our best to answer them.
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PostSubject: Re: Ally - diagnosed March 2011   Sat Jan 07, 2012 12:37 am

Hi Ally, and welcome to the group! I'm sorry you're not finding more relief. Unfortunately, it can take some time to find the right medication or treatment..hang in there.

You said you finally found a doctor that listened to you at the hospital, so that may be a place to start. You can look him up on hospital site & Google him to see if he's taking patients or your insurance. He also may be willing to make a referral to a physician he trusts. Preserving vision is usually main goal, so I would make sure you find a neuro-ophthalmologist. You can use Wylee's method or even see if there's a local support group that can point you in the right direction. You can also go to ihrfoundation.com to find a physician in your area & check them out from there.

I hope that's helpful. Keep your doctor's informed of any changes or discomfort until you can find a replacement..take care & good luck!

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Ally - diagnosed March 2011

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