here's my story.....Hope you are sitting comfy this might go on a bit
in september 2009 i was diagnosed with Fibromyalgia (dont know if anyone is aware of this condition but one of its symptoms is headaches) when i was diagnosed with this it turned our lives upside down
we had never heard of it before. Anyways these headaches were getting worse and unbearable so decided to go to my local optician's to get my eyes checked, yes i needed glasses for close work , he also told me that the pressure behind my right eye was slightly raised (which they told me the same 2yrs ago, and sent me of to the eye hospital) so off i go to the eye hospital ( september 2009) expecting to be told the same as before the pressure is fine no problems we will discharge you......
, yes i was told the pressure was fine in my eyes BUT
the optical nerve seem;s to be to small so he was sending me for an MRI scan (the scan date was end of October 2009) .Had my scan ,now waiting for appointment to come through for the results............the 4th of december 2009 i had a telephone call from a neuro's secretary saying that before i go back to see the eye doc i needed to have a MRV scan and a lumber puncture very soon
was the words she used..i asked if they had found anything on the MRI as i needed more tests, she said she didnt know she was just passing a message on.
any months passed no appointment so telephoned to find out what was happenig the appointment was in the post
..............March 2010..... appointment with eye doc ( still not had the tests) was taken for the normal eye tests then in to see the doc... drops in my eyes,taking a long time to view the back of my eyes.then he sits back and tells me my eye's had deteroated since my last visit in september, he then went on to tell me that i had pressure on the brain (bengin intercranial hypertension)
i needed to have more tests and would either be treated by the neuro or my GP......he then said have you got any questions???? ok we will see you in three months....... bye..
...... i left the hospital knowing nothing at all about this condition had to go home and tell my 4 children, my parents and siblings what the doc had said then go to my auntie's funeral
My appointment finally arrived
april 2010 (just over a week ago) went to the QE hospital had my MRV scan waiting for results an then to have my LP after waiting around for 5 hours the doc finally came to see me saying they couldnt do my LP as it would be to dangerous as mine brain had slipped...
they said they were having a meeting the next morning to discuss my scan to see if it would be safe to have an LP.........the following day i had phone call to go in and have my LP... the doc explained that my brain had slightly slipped down but they thought it was safe to do the LP....4 attempts to do the LP my opening pressure was 36, i felt great for a couple of days NO HEADACHE
but it didnt last long the headaches are back wit avengance
so now i am waiting to see the neurologist to have my condition officially confirmed and find out what going to happen now ..........
sorry if i have rambled on and sent you all to
, after joing a few IIH support groups and fourums i have found that all the symptoms i have fit in well with IIH...
things seem to make a lot of sense now
still trying to come to terms with this all the
is greatly appreciated
and a big
for listening well reading my story xx
s to all