hello to all I only ever seem to come on here to vent, sorry. yesterday I spent all day in my local a&e with the worst headpain yet I felt like my head would explode. I spent all night popping pills trying to get on top of the pain nausea and vomiting, by morning I couldn't take any more so my partner steve phoned an ambulance as I couldn't get in the car. ambulance service was amazing but that's where my praise stopped, the nurses attitude was what a fuss for a headache, put a cannula in my arm no gloves I am not sure if she even washed her hands but I was in no fit state to argue, she then would not listen to me trying to explain I am high risk of contracting meningitis due to my csf leak or to what pain relief I had already taken, she came back with small iv bottle and put it up without a word I was at the time vomiting so did not ask what this was, I presumed it was antibiotics steve checked only to find out it was iv paracetamol I had oral paracetamol at home 1 hour prior so turned the iv off myself and steve told a nurse they took it down and told me as they were walking away nothing else could be offered until I was seen by dr .eventually I was seen by multiple drs given morphine syrup and sent for yet another mri which of course was normal. eventually a dr came back and after telling me off for presenting there not kings 3 hours away preceded to tell me my case is to complex for them and they could not help they said my case would be discussed at kings my London neuro base and they would get back to me with kings advice  a few hours passed I was not offered further pain relief no fluids despite temperature outside being in the 30s .eventually the dr came back and said kings advised I be admitted to guys a different London hospital under ent due to csf leak,  the dr told me that they had tried to contact them and no one was answering there bleep a new consultant came to see me one I had put a complaint in about in jan said he would admit me but it would delay my treatment at kings by at least 6 months so he suggested I go home and contact kings myself. so home I came, today I contacted kings hospital and eventually got to speak to someone who informed me my case had not been discussed as I had been told. yet another letter of complaint is going in but I am left with a gp who says he is out of his depth and my local hospital saying they cant help as my case to complex for them  I am so afraid my pain remains bad but I am trying to cope at home kings have promised to call back with answers tomorrow but I wont hold my breath .I am a nurse and I am so disgusted with the health profession in this area as a whole. when I am fit to return to work it wont be back doing the job I once did. I still do not have a formal diagnosis is that normal to take so long my csf leak was found in july last year. I really really don't know how much more I can take, this is destroying me and my life I am off Diamox due to awful side effects but because neuro surgeon doesn't think it is iih as I don't have papilledema !!! nothing else has been offered .  vent over .  

Lisa, so sorry to hear that you are still having so much trouble.  PALS hasn't been of any help?
I am concerned about you taking yourself off the Diamox.  Without it, you are running the risk of your ICP going up, maybe even making your leak worse.  It seems like you haven't made much progress.  Are there any docs where you used to work that can speak on your behalf?

Wylee thanks for responding i didn't take myself off diamox my neuro surgeon did as he does not believe i have iih reason being no papiledema i had severe diarrhea on diamox to the point i was going to loo 10- 12 times a day sometimes more sorry to be so graphic amongst other side effects . the docs i work with all say they know nothing about iih or csf leaks and feel unable to help also working in a&e the drs change all the time but  i also thought of that one. kings my neuro center have got back to me and have left messages with ent consultant but she is on leave so they are trying to help and have told me to present there if i have severe pain again not much help really as 3 hours away and have to be able to get there.want this all to go away.

Ugh, I'm completely disgusted! You don't have to have papilledema to have IIH. It doesn't show up on MRI or CT. They use LP opening pressure to confirm a diagnosis, but that's not even concrete. Everyone's "normal pressure" is different. We have some members that function better around 8, but I do better at 20. Mine used to be much lower, so it even fluctuates for each person. All they need to do is look at your symptoms, CSF leak, and rule out any other possibilities. If your symptoms improve after LP or with diuretics, the most likely diagnosis is IIH. If you had severe side effects with Diamox, there are several others to try. Why is this so hard?!

You may want to try The Brain and Spine Foundation (http://www.brainandspine.org.uk/). If nothing else, maybe they can refer you to an appropriate specialist that would confirm a diagnosis. I definitely wouldn't want to return to the physician that removed Diamox with no other options, but if it's unbearable go to Kings. My hospital is also 3 hours away so I understand your hesitation, but you don't want to end up with another CSF leak! I would try to find a ride for the short term and maybe call the folks at PALS or The Brain and Spine Foundation for some guidance.

We definitely understand, so please don't ever feel like you need to apologize for venting or reaching out for support..that's why we're here!!! I hope you find some relief soon..
  
Julie