Rob was diagnosed with ICH in 2003 after his sight was affected and he was in terrible pain. He was in hospital in Cardiff for a week where eventually they did a lumbar puncture and it was 42 and he was diagnosed with ICH. They put him on diamox but it didn't agree with him at first so they told him to stop taking it as it was probably a one–off anyway!
Needless to say within 6 weeks he was showing symptoms again.
It took us a further 3 months before he had a lumbar puncture...When he did have it the pressure was 37 and he was put back on diamox. He was very very poorly after this LP and he only went back to work for 3 weeks (spent time in the sick bay every day!) and eventually he collapsed in work. When he collapsed they brought him home and he went on the sick. To cut a long story short they couldn't afford to hold his job open and because he was still poorly on a daily basis six months later it was decided that they would retire him.
So he was retired through ill health at 39! I had been working from home as a childminder but had to give that up because Rob was now at home 24/7 and he couldn't stand noise on a daily basis (he still struggles with just our two) plus when he was having a bad day he couldn't make himself food...not even a sandwich...he couldn't get out of bed! He was in too much pain.
Since then he hasn't had a further LP. He is on diamox which they reckon is controlling the ICH. But he still isn't well enough to go back to work yet. He is still poorly to varying degrees everyday – still has head pains, eye pains, light sensitivity, noise sensitivity, nausea, memory problems, concentration problems, migraines, pins and needles in face, jaw, arms and hands, mood swings, tinnitus, 'shaking' hands and fatigue. He has learned to cope with it a bit better now though, but still not well enough for me to go back to work yet.
We've been told that the neurologist doesn't understand why Rob is still so ill and that he will probably find that the symptoms go as suddenly as they started (we wish!) I'm hoping the neurologist is right and that he'll come well enough for us both to be able to go back to work, and that the kids can have a "normal" life again.
'Vicki'