Submitted by Jill (not verified) on Thu, 08/28/2008 - 9:27am.
Just cruising through these pages and came across your entry. I wondered if you had made any progress yet and thought you might like to hear a more positive story.
In 2004/05 I developed excrutiating head pain. I couldn't travel in the car at all - I would vomit with the pain. When I went to the Doctors surgery, I would have to lay on the floor because I couldn't bear to be upright for any length of time. I developed tinitus. I couldn't move my eyes from left to right. I was constantly checked for tumours and all other more normal problems, sinusitis etc. I became almost completely bedbound.
After six months with no life at all I got so desparate I paid to see a neurologist. He recommended I have an MRI scan and it was only then that I was diagnosed with spontaneous intracranial hypotension. They think I ripped the dura during a heavy bout of coughing.
Anyway, they tried a blood patch, but it didn't work and I felt really worried that they were messing with my spinal cord. My consultant told me that rest used to be the answer for this condition (I was very fortunate that my consultant had seen two patients during his working life with this condition). I decided to follow this course of action - I'd read too many horror stories on line to want to have too many procedures.
I drank lots of coffee - couldn't even go to the toilet with a fix of caffeine; tried amytryptiline (hated that); took diclofenic (think it helped a bit) ; ate loads of avocados (my body just seemed to want them, so I listened) and I stayed as flat as I could.
Since 2006 I have been able to resume a relatively normal life. My nerves at the base of my skull/brain were very bruised by the 'brain sag' that I had and I have been very careful not to over- exert myself - no heavy lifting - no running - no dancing. For perhaps a year afterwards I had dragging sensations in the back of my neck when I stood up and visual disturbances - I wondered if I would ever feel normal again.
Well, I do now.
When I was ill I could never find any positive stories which told of people getting better - I suspected that this was because once they were better they didn't think about putting positive stories out there for people to read. That is why I thought I would log my return to relative normality.
I so hope that you have made some progress. It is a horrid condition and difficult to get any decent information on it - only sad stories. For all you sufferers out there, my thoughts are with you and GOOD LUCK in your recovery.
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CSF leak
Just cruising through these pages and came across your entry. I wondered if you had made any progress yet and thought you might like to hear a more positive story.
In 2004/05 I developed excrutiating head pain. I couldn't travel in the car at all - I would vomit with the pain. When I went to the Doctors surgery, I would have to lay on the floor because I couldn't bear to be upright for any length of time. I developed tinitus. I couldn't move my eyes from left to right. I was constantly checked for tumours and all other more normal problems, sinusitis etc. I became almost completely bedbound.
After six months with no life at all I got so desparate I paid to see a neurologist. He recommended I have an MRI scan and it was only then that I was diagnosed with spontaneous intracranial hypotension. They think I ripped the dura during a heavy bout of coughing.
Anyway, they tried a blood patch, but it didn't work and I felt really worried that they were messing with my spinal cord. My consultant told me that rest used to be the answer for this condition (I was very fortunate that my consultant had seen two patients during his working life with this condition). I decided to follow this course of action - I'd read too many horror stories on line to want to have too many procedures.
I drank lots of coffee - couldn't even go to the toilet with a fix of caffeine; tried amytryptiline (hated that); took diclofenic (think it helped a bit) ; ate loads of avocados (my body just seemed to want them, so I listened) and I stayed as flat as I could.
Since 2006 I have been able to resume a relatively normal life. My nerves at the base of my skull/brain were very bruised by the 'brain sag' that I had and I have been very careful not to over- exert myself - no heavy lifting - no running - no dancing. For perhaps a year afterwards I had dragging sensations in the back of my neck when I stood up and visual disturbances - I wondered if I would ever feel normal again.
Well, I do now.
When I was ill I could never find any positive stories which told of people getting better - I suspected that this was because once they were better they didn't think about putting positive stories out there for people to read. That is why I thought I would log my return to relative normality.
I so hope that you have made some progress. It is a horrid condition and difficult to get any decent information on it - only sad stories. For all you sufferers out there, my thoughts are with you and GOOD LUCK in your recovery.