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 Lilleth diagnosed 2011

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lillith98
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PostSubject: Lilleth diagnosed 2011   Sat Dec 24, 2011 7:35 am

Hi all!

I'm 20 years old and have just been confirmed to have IIH two days ago. I was having headaches and blurry vision for around 3 months, then the pulsatile tinnitus and occasional "blacking out" started. I went to my GP who passed it off as a "blocked eustachian tube" and told me to take a nasal spray. I returned a week later with worse symptoms and a nosebleed! I decided to go to the opticians, who saw I had bad papillodema (sp?) and he referred me straight to accident and emergency for a CT scan which came back clear. I was taken to an opthamologist who dialated my pupils and diagnosed IIH but scheduled a Lumbar Puncture 3 1/2 weeks later to confirm.

It is now 4 weeks after that date and I have had my Lumbar Puncture. My opening pressure was 41 and they also took some bloods the same day. A few hours later I was prescrbed 1000mg Diamox a day (4x 250mg tablets). I went home and at 5pm took my first tablet. About 1- 1 1/2 hours later I started feeling nauseous and my post-lumbar headche became unbearable. I was dizzy, drowsy and then started vomiting constantly, at which time I would lose all control of my bladder. My throat started to close up and began burning and it became difficult to breathe. I called an ambulance and was admitted to hospitals accident and emergency where I was given saline and anti-sickness via a canula. They transferred me to the neuro ward at another hosp (where I had my LP earlier that day) and was admitted for 2 nights and given a concoction of pain relief (which did nothing) and anti-sickness med. They tried me on Diamox again and I had the same reaction except I couldn't physically be sick, the wretching was just as bad. They have now decided that I'm intolerant to it and have prescribed Furosemide instead. I know it's not as effective and I'm worried I'll need to go down a surgical route.

Sorry for the long intro! Hope everyone is doing okay and feel free to message me with any questions. P.S, is anyone else on Furosemide? How effective is it at lowering ICP? Did you need a shunt in the end? Thanks!
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Heidi
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PostSubject: Re: Lilleth diagnosed 2011   Sat Dec 24, 2011 8:10 pm

A very warm welcome to the group hug. I know how hard this must be for you as I was around your age when first diagnosed, and I too could not tolerate the Diamox, so was eventually prescribed co-amilofruse which I still take. I was on medication for 12 years before needing surgery and even managed remission, so please don't give up hope. IT was only because of my trigger being hormonal and PCO's that brought my IIH back and I ended up being shunted. It is possible for medication alone to control the IIH, with the occasional LP's, and as I said, remission is possible especially if your trigger is weight related.

Shunting is only done when there is a risk to your sight, and they will regularly monitor you to make sure this is kept under control. The main thing now is to adjust to having this condition and to recognise the symptoms, and what your body can tolerate in terms of everyday life.

We have lots of helpful booklets in our Useful Guides and Printouts from ourselves and our Partner Organisation the Brain and Spine Foundation, There are also handy log sheets that will help you keep track of your symptoms and medication, so that you can provide your Doctors with as much information as you can when you see them.

There are lots of members here that know what you are going through, and will be able to offer you lots of advice and support, so don't hesitate to ask as many questions as you want and need to. You can PM any of the Moderators or Admin Team anytime for immediate help or advice.

I hope that this helps and remember we are always here for you, for whatever you need, you are not alone.

Heidi hug
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