The Contemplations, Rants & Reminiscences of DavidB327

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Goodbye to Phenytoin Revisited
Body Painting1
davidbr1
 

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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I hope everything works out for you, sending good vibes your way :)

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)

I have photopsia, too, and have since I was 15 years old. That was way before I was even diagnosed with RP. Mine is predominantly in my left eye (which has worse symptoms and degeneration than my right) where it is always noticeable. I have noticed these last couple of years that it has also mildly started in my right eye. Sometimes it makes me feel dizzy or disoriented... and I can feel my eyes sort of shake when strained.

I didn't even KNOW that there were any drugs or treatments for it... or maybe there aren't in this country. All I have ever been told about treating my RP is that I can take huge amounts of vitamin A that will ultimately be bad for my liver and might not even help at all.

Well... whatever happens, I'm glad to hear that you have support. Good luck.

Thanks.

The use of anti-epileptic drugs to help alleviate the photopsia was suggested to e by a consultant at Moorfields several years ago, though it did come with a warning that the benefit was likely to be limited, and that it was not always successful. I asked about other alternatives, but was told that there was no other alternative on offer at Moorfields, and that they were not aware of any alternative elsewhere. The medical profession do have this annoying habit of only telling you whet they want you to know, and what they think you need to know. What is particularly galling is that I have a PhD in vision research, though not in Optometry of Ophthalmology.

I’ve tried searching on the internet for information. I’ve found loads of reference to RP and photopsia, but absolutely nothing in terms of any serious research regarding the alleviation of the symptom.

You may want to try acupuncture. I did go on a course of acupuncture for a while, but it did not work out. I did find it beneficial in terms of stress relief, and always felt relaxed afterwards.

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