Author Topic: recently diagnose and very confused!!!  (Read 3569 times)

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Offline yeli0320

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recently diagnose and very confused!!!
« on: October 11, 2014, 04:57:23 AM »
hello im new in this forum i was diagnose last monday :unsure and my neuro called and tell me that i had iih!!!! i didnt even know this existed... i was losing my eyes vision..i always have headache im on diamox and im not gonna lie sometime i drink tylenol is it posible to live a normal life or it get worst? im always so tired and exausted. any advice will be apreciated  :grumpy2

Offline Keren

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Re: recently diagnose and very confused!!!
« Reply #1 on: October 11, 2014, 07:10:45 AM »

welcome to the group, but sorry that you have to be here. IIH is one of those conditions that very few of us had ever heard of before we got it, and then we had been suffering these horrible symptoms and then find out we have this rare crazy condition and its all such a shock. you wonder if things will ever be the same.

there is hope. iih is hard and there is no denying it can have a massive impact on life but it can be manageable. for some people it clears up entirely, other people find a balance and learn to live with it, but for some though it is a hard path to find their solution because the exact cause of the disease is still unknown. you have to take things one step at a time. but the first step is getting a diagnosis and getting on some medication. for many people that starts to bring the pressure down and things start to improve. however there other things that can be done like life style changes and management tips to get through the day - have a look through the site for ideas, when your head isnt too bad. and later down the line there will also be surgery options if you have to look at further measures, but like i said, one step at a time.

I spent a long time unable to work with my IIH, my opening pressure was 38. I was on diamox and topamax for a long time, but i have just come off diamox. I still have to manage my condition, so i dont think i am 100% in remission, but i am back at work and living an almost normal life. a far cry from those first months when I couldnt move for pain. some people find they are not able to go back to work with their IIH, however there are still ways that you can balance IIH with your life to do what you can with the condition. Some people are able to keep working. I hope that you will be one of the many that responds to the medication and see improvement quickly.

Best of luck to you


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Offline yeli0320

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Re: recently diagnose and very confused!!!
« Reply #2 on: October 11, 2014, 03:10:42 PM »
thank you for the answering my question my neuro just told me i had a disease nothing else and the only thing she said im going to give u diamox.she didnt even explain what was it...l :down. but physicly i feel fine.... i think my nerve is still swallen beacuse my head still hurts.
« Last Edit: October 11, 2014, 03:12:33 PM by yeli0320 »

Offline dabirg

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Re: recently diagnose and very confused!!!
« Reply #3 on: October 12, 2014, 10:02:50 AM »
Hi - if you head still hurts your pressure may be high again - have you had an LP (lumbar puncture).

The pap is a late sign of IIH and may take some time to go, like a bruise hangs around long after you bash yourself .  YOu normally cannot feel pap - it is just a sign that your optic nerve has been squashed and can persist for some weeks / months after the pressure is removed.  Likewise it doesn't necessarily appear with the high pressure but may appear later or not at all.

Here are my tips
1.  if your headache is worse in the mornings try propping up the head end of your bed, the mattress , extra pillows etc.  Intracranial pressure rises when you lie down.
2.  Try to cut down on caffine - slowly
3.  With diamox you should had regular blood tests - if your electrolytes get out of balance that can make you very fatigued
4.  i suggest you get pics done of your pap at an optician - then if you see someone else they have a picture to compare against.

Obviously i am not a dr so this isn't medical advice just based on my experience.