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Idiopathic Intracranial Hypertension Anyone???

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#26 muminpain

Posted 16 March 2012 - 01:25 AM

Hello everyone, I have been suffering for about 5 years now, the pain has been getting progressively worse and I am sick of being told by the doctors that they don't know what is wrong with me! I happened upon this by chance after reading an article on ninemsn and decided to look into it more as it sounds exactly like what I am suffering from! I am waiting for another appointment with my neurologist who has not contacted me for over 3 years. My right eyeball pulsates and sometimes the pain pulsates with it. It has been so bad this past week I have taken so many painkillers, which helped slightly but not completely. It was so bad last week I couldn't even hang the washing on the line. Just lifting my head enough to see where I was hanging it was enough to bring on so much pain on my eye and temple that it brought me to tears. I can't cope with the kids when I am in pain. It hits me pretty bad when I am driving and every little bump in the road brings on the sharp pain in my eye. I thought I was alone until I googled the condition and came across this site. CT scans and MRI's have revealed that I have a boney abnormality in the eye that I suffer with, like moth-eaten erosion of my eye socket. Everytime I go to the gym, or run or bend down to pick something up off the floor, just that rise in blood pressure in my head leaves me feeling fatigued and double visioned and the pain hits hard and I feel like I'm gonna have a stroke or like I have an aneurism, but they would have found that if it was. Does this sound like what you all are suffering with? I'm going to ask my neurologist to test me for this condition next time I see her. It is so depressing because I feel like I have just been left to suffer with one GP telling me I need to find a way to live with it! easier said than done I'm afraid. I am only 74kilo's. which is slightly overweight, Ideally I'd like to be only 60 but I am getting there slowly. It has been hard to lose it after having my third child.

#27 Butterfly*77

Posted 23 April 2012 - 04:42 PM

I was diagnosed with IIH last week after a visit to the optometrist for new contact lenses featured an unwelcome surprise. The optometrist found a large amount of swelling on my brain behind my eyes and referred me for an urgent appointment with a neuro opthmalogist at the PA in Brisbane. I also saw a neurologist at the same time.

I ended up having a MRI on Thursday which came up clear for anything nasty and my eye tests did not show any issues, so no damage to either eye which was lucky. However my lumbar puncture gave me a pressure reading of 40 when it should have been under 23!!! ohmy.gif They managed to bring it down to 22 but I was having sharp pains in my tummy (23 weeks pregnant) so they pulled the plug then.

Back tomorrow to the neuros for another look behind my eyes to see what impact the LP had on my swelling. If all good, I will be monitored and have another LP in 3-4 weeks but if it is still heavily present, I will need to go on Diamox (?). I also need to lose weight even though I am pregnant and really get it off after DS2 is born. Most of my weight is fluid (I have put on 10kg so far) but I had a few extra kilos on me before I was pregnant (I was about 75-80kg, 5'9) so they need to go.

The funny thing is, I haven't had really any symptoms apart from a bad migraine earlier this year and a sinus headache a couple of months ago. My headaches have been very mild and occasional and I honestly thought my dizziness and double vision was from pregnancy as I had a bit of it when I was pregnant with DS1. I was ready to change my optometrist appointment as I was too busy at work - luckily I went anyway!!!! unsure.gif

All I can say is that the whole process has been extremely quick and well organised as I think they wanted to move quickly because my IIH is pregnancy related.

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