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

Tanja

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.

_{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

Thanks so much, Heidi!!

Tanja