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I haven't been on here for a while, and the good news is that my dry eye pain has finally disappeared; for the last month my eyes have felt completely normal, and pain-free through day and night for the first time in the last 18 months, if not several years.
There has been a definite correlation between the severe eye pain/redness and facial flushing developing over the last year (independently of eye dryness issues), so the pain seems entirely due to neural excitement that precipitates flushing/eye redness. The intervention that seems to have made the difference to this is HRT. This seems to have had a very positive effect on flushing symptoms in the first half of the cycle (two weeks of 99%-normal bliss), but absolutely no effect in the second, when the scalding pain, redness and swelling are still horrific. I tried mepacrine for 3 months, which initially seemed to be helping, but hasn't had any effect on the severity or duration of severest flares over that time.
My dilemma is that my dermatologist now wants to try the anti-androgen cyporterone, and beta blocker labetolol. These are both very heavy-duty medications with serious side effects particularly for those with existing connective tissue disease, or those with susceptibility to thrombosis/circulatory problems (for which there is some family history). Both are known to cause severe dry eye problems, even in those without existing problems. Having finally achieved eye relief, and the ability to work or read normally for the first time in years, I don't want to risk making it worse again.
I have a hunch that my problems are fundamentally thermoregulatory/vasomoter (something supported by my mother finally owned up to the fact she had the same problem which responded well to HRT; my GP agrees it may be likely). However, my derm. won't accept that this severity of flushing/burning is primarily vasomotor, and that the improvements are largely down to androgen-suppressing effects of the oestradiol. I guess I have the choice of just seeing if the hormone approach works on its own over time before resorting to stronger medications, but I honestly don't know what to do if it doesn't; the intense burning pain and the facial disfigurement of the flushing flares are unbearable, I need to do something to preserve my sanity during these flares. I don't want to fall out with my dermatologist by refusing to take these drugs (he was quite annoyed I started HRT without consulting him).
There has been a definite correlation between the severe eye pain/redness and facial flushing developing over the last year (independently of eye dryness issues), so the pain seems entirely due to neural excitement that precipitates flushing/eye redness. The intervention that seems to have made the difference to this is HRT. This seems to have had a very positive effect on flushing symptoms in the first half of the cycle (two weeks of 99%-normal bliss), but absolutely no effect in the second, when the scalding pain, redness and swelling are still horrific. I tried mepacrine for 3 months, which initially seemed to be helping, but hasn't had any effect on the severity or duration of severest flares over that time.
My dilemma is that my dermatologist now wants to try the anti-androgen cyporterone, and beta blocker labetolol. These are both very heavy-duty medications with serious side effects particularly for those with existing connective tissue disease, or those with susceptibility to thrombosis/circulatory problems (for which there is some family history). Both are known to cause severe dry eye problems, even in those without existing problems. Having finally achieved eye relief, and the ability to work or read normally for the first time in years, I don't want to risk making it worse again.
I have a hunch that my problems are fundamentally thermoregulatory/vasomoter (something supported by my mother finally owned up to the fact she had the same problem which responded well to HRT; my GP agrees it may be likely). However, my derm. won't accept that this severity of flushing/burning is primarily vasomotor, and that the improvements are largely down to androgen-suppressing effects of the oestradiol. I guess I have the choice of just seeing if the hormone approach works on its own over time before resorting to stronger medications, but I honestly don't know what to do if it doesn't; the intense burning pain and the facial disfigurement of the flushing flares are unbearable, I need to do something to preserve my sanity during these flares. I don't want to fall out with my dermatologist by refusing to take these drugs (he was quite annoyed I started HRT without consulting him).