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The Contemplations, Rants & Reminiscences of DavidB327

Something Sensational To Read On The Train

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Goodbye to Phenytoin Revisited
Body Painting1

Yesterday I had an appointment at Moorfields Eye Hospital.  I arranged the appointment because the photopsia has continued (albeit gradually) to get worse.  In fact it has just got worse ad worse since it first became apparent in June 2000.  I don’t believe I am getting any discernible benefit from taking Phenytoin any more, and I am determined to stop taking this drug.  The lest time I tried to do this 2 years ago I changed my mind after I’d decreased the daily dose down from 300 mg to 100mg, because the photopsia intensified dramatically, and I started to feel like I had slept for several nights on the pavement.  From my discussion with the consultant yesterday, it seems likely that I decreased the dose far too quickly, though I had taken advice from my GP beforehand.  This time I am going to decrease the dose at 1 month intervals.  So I’ve gone down from 300mg to 200mg.  Depending on how this month goes, I will either go down to 100mg or 150mg in 1 month’s time.


I was hoping (though not expecting) that the consultant might offer an alternative to Phenytoin in alleviating the photopsia, but all he could suggest was 2 other anti-epileptic drugs that I have already tried and discounted.  He is going to consult some colleagues to find out if anything else is being offered to patients (ie with RP that suffer badly from phtopsia), but I don’t holdout any hope.


He confirmed that the RP had progressed since my last appointment in August 2005, but of course I did not need to see an Ophthalmologist to find that out.  The only crumb of comfort that he could offer was the possibility of a retinal implant in a few years.  That will be wonderful, but as for the ‘here and now’ -  it’s going to be a grim couple of months or so I think, but I do need to find out what my condition will be like Phentoin free.  Ultimately I may go back on it, but at least I will have assessed the benefit I get from taking it.

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Thanks for your support.

Whatever happens I will be fine. I will have Christie to support me, which is a great comfort.

Edited at 2008-04-13 10:56 pm (UTC)

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