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 Why don't they understand this condition?

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IdaSerafiina
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PostSubject: Why don't they understand this condition?   Sat Jan 15, 2011 2:44 pm

I'm having a hard time in getting a diagnos (or to even be examined) - and for what I have read, so has many others too. Especially if you don't show high pressure signs from your eyes (I don't).

It is not normal, that a young (otherwise) healthy woman starts getting constant pulse-synchronous tinnitus, vibrating eye sight, shaking seizures, twitching joints (face and neck - pretty much anywhere really); I got all these new symptoms from a blood patch (3rd one), and I litterally felt the pressure raised in my head. This is in theory a known side-effect from a blood patch, but as it only happens so rarely (even world-wide), the doctor's can't believe it.

I'm still fighting for getting an LP, maybe within two months I will get one. Although I'm not looking forward to another low pressure headache, I can't live like this anymore.

I hope you are all well xx fingers crossed

Tanja


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Heidi
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PostSubject: Re: Why don't they understand this condition?   Sat Jan 15, 2011 3:02 pm

It has been well documented that IIH can still be present even if there is no pressure visible in your eyes. Unfortunately the only sure fire way for them to make a diagnosis is through doing a Lumbar Puncture. You are right to continue to fight for the right for an LP to confirm high pressure. Is there anything like a Patient Representative at your hospital who could mediate for you? If there is they could be very helpful in pushing things forward for you.

I will try to find some information about this being a side effect from blood patches that maybe you could print off an present to your doctor to prove that this does happen.
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PostSubject: Re: Why don't they understand this condition?   Sat Jan 15, 2011 3:35 pm

headaches after blood patches


I have managed top find several medical articles that you might find of interest about headaches after blood patches etc. I hope they are helpful fingers crossed

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Last edited by Heidi on Fri Feb 10, 2012 3:32 pm; edited 1 time in total
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IdaSerafiina
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PostSubject: Re: Why don't they understand this condition?   Sat Jan 15, 2011 4:05 pm

Thanks so much, Heidi!! bhug

Tanja
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