Hello Everyone
Sorry if this is in the wrong place.

I try'll not to bore you with my story I will be here forever. I was diagnosed in Feb 2006, I had severe headache, was falling over, vomiting, they found papilloedema, enlarged blind spots normal scan etc but failed with LP. Nonetheless, the Dr started me on Diamox and and then the 1st Lp showed only 23. Dr would have preferred it to be higher but he said it was probably due to the diamox.

The diamox got rid of the papilloedema. The papilloedema was not constant it would come and go. 30+ LPs.

Ever since I have had one big battle to get seen by my Consultant Neuro team and treated. I was sent eventually for a shunt but the neurosurgeon said I couldn't possibly have IH because I didn't have papilloedema and I had a normal scan.

May 2009 I had ICP monitoring.

2 doctors and ward manager said it was not in place as it should be as it was not recording properly. Result--- Consultant Neurosurgeon said I didn't have IH as pressures didn't warrant it.. (They actually disagreed with him and told me get referred to another hospital).

Sept 2009 seen by neurologist actually felt ok best I had felt in long while, slight headache but nothing like before. Eyes not too bad. I am sure it was because of hole in my skull and told doc this. He laughed.

Dec 2009 feeling really unwell went to GP asked to contact Neuro for me to get seen. Would not give me any meds. Major problems with my eyes hurting, headache, left arm feels strange.

March 2010 Neurosurgeon-follow up- discharged me back to Neurologist.

March 2010 asked GP about 2nd opinion he told me he would have to apply to the Welsh Office for funding from the Government for me as a special case and would have to prove that I need it. The postcode lottery situation. Which he would have difficulty proving. He advised me to ask Consultant Neuro because I want to go to another Health Authority.

April 2010- I finally get to see Consultant Neurologist since my GP asked in December.
He tells me I have migraine. Codeine induced from Tramadol. I need to get codeine out of my system. This was the same man who diagnosed me. I have managed this without pain relief as he would not give me pain relief as he does not believe in painkillers. I have been prescribed tramodol twice by my gp since 2006. I tried telling him I DO NOT take them and did not have migraine. I was unwell, my head was pounding, I had vomited before I left for the hospital, i had double vision, blurred vision, he didn't even look at me.

I asked for a 2nd opinion and got discharged, I am not joking. I am serious.

Anyway I couldn't see my GP until 23rd so last week I felt so unwell my husband drove to another health authority and asked them to see me.

Finally people took me serious and are listening to me.

I have papilloedema again. My LP 50. The hospital have agreed to take over my care and was referred straight to neurosurgeons. They sent for my notes from my old hospital. The difference in care was unbelieveable.

hooray 4 years of fighting over with.

Tina

Welcome Tina , thank goodness you've finally managed to get the treatment and doctors who can help you. It always amazes me that there are still doctors out there who think there has to be papilloedema present, when it doesn't have to be for you to have IIH. Their lack of knowledge in this day and age, and especially when they have access to medical sites, and information by other doctors and research papers, never fails to astound me.

I have the utmost admiration for you managing your pain yourself, which is no mean feat. So well done for that.

I'm so happy you joined our group, and now with your treatment underway, I'm sure you can get back to having a better life. We're here whenever you need us, to support you and encourage you, and most of all to listen to you.