Hi everybody,

Just wanted to say hello and introduce myself. I was diagnosed in December of 2011 with IIH.
My sister was diagnosed with the illness in 2005 and following only one LP and 6 months on Diamox she was given the all clear so to speak and to this day her symptoms have not returned.

Earlier 2011 I was sat at my desk at work, you may want to know that I have form for being bit dizzy anyway so the lack of coordination and getting words mixed up went unnoticed and was put down to me watching too much trash tv! Seriously! I recall sneezing and saying to my friend next to me, 'ow...I think I've just ripped something in my head', again she laughed as did I and I thought nothing of it. I do have a stressful job and as summer 2011 hit I was under extra pressure at work however I began to repeatedly find myself saying, 'I don't feel right, don't ask me what it is, I just don't feel right'. Dr's initially told me it was stress which I argued to the high heavens. I admitted myself to A&E convinced I was having a heart attack which looking back was probably an anxiety attack. That is when my vision deteriorated and I suggested to my Dr the diagnosis of IIH- she disagreed with me but made a referral to the neurologists to be on the safe side.

LP 1 showed an opening pressure of 32.5 , I won't go into all the finer details as I'm sure we all share similar experiences however 12 months Down the line I am 4 LPs in have tried Diamox (eugh) and today have just been taken off topiramate (emotional wreck is an understatement!!). I have yet to see a neuro ophthalmologist and have only had 1 visual field test completed. Just for the record my LP readings have never been below 26!

I'm currently in limbo awaiting an appointment and trying to keep my spirits up! I spoke to some people off the site last night on twitter who were most welcoming and I can't all enough!


Rant over...

Hello Gemma and a very warm to you.

I understand your frustration at this point. IIH is a very challenging disease to deal with, for us and our docs!
I would highly recommend that you keep a symptom and a medication log. Like me, sounds as though you will need to do some experimenting to find a med, or combo of meds, that will work for you. Don't give up, and don't let your docs forget about you either. Make sure you bug your docs to get that appointment with the neuro-ophth so that you can do whatever is needed to keep your vision.

The cognitive issues that we get due to IIH are amazing. I know I feel like I have a good buzz on, but never was able to think straight when I was drinking!! I find now that I have to double check almost everything. Time consuming but worth catching the mistakes early.

Do keep us up to date on your happenings. And feel free to come on board whenever you want, ranting is accepted too. We understand.

Hi Gemma!

Welcome to the group! We talked a little bit on Twitter yesterday, and I look forward to getting to know you better. *hugs* We're glad you found us and hope you find lots of info and support here.

After several emotional outbursts and appointments with my GP I have decided to give Topiramate another try. I've been thinking the emotional outbursts could have been a side effect of the medication or it could have been due to the fact that I had no future neurology appointments lined up therefore I had no focus and felt like I had been forgotten about.

Anyway...after much ranting and a complaint to PALS I've now got an appointment with the neurologist next week. Still no sign of an appointment with neuro-ophthalmologist despite the referral being sent in march, may and September. However, I am now going to be the patient that they groan about when I walk through the door as I'm not going to leave next week without having a back up appointment made if the neuro-ophthalmologist appointment still does not get offered to me.

Hi Gemma and welcome to the group!!! Finding the right treatment can be frustrating and overwhelming, so hang in there! I did ok w/ Diamox initially, but when IIH came back I couldn't take anything. You can check the IIH and Medication section for more info about what's available. Everyone responds differently, so I know it's a challenge. I think the symptom log will help you keep everything straight. Just keep on your doctors and let us know if there's anything we can do to help.

Take care,
Julie

Yes, you really do have to be persistent about getting the right treatment. Good for you, sweetie! Let us know how it goes with the neurologist this week, okay? *hugs*