Friday, February 02, 2018

A new danger...


I shouldn't have been so worried about how my GP was going to receive my request to cease the latest nerve pain medication.  She said she was impressed I stuck with it as long as I did.  She also surprised me with how quickly she believes that I can get off of it, given that duloxetine has a terrible reputation for withdrawal.  Tomorrow, I take one last dose of 60 mg and Sunday switch back down to 30 mg already!  She believes that if I do get withdrawal symptoms, such as the brain zaps, they should not last too long since I have been on the medication for such a short time ... though it has felt like a lifetime to me.

The distressing news is that the neurogenic flushing has now officially caused rosacea.  Fun times.  My main concern is that, on the left side, where it is worse, I am now experiencing ocular rosacea.  My poor, beleaguered eyes do not need any further dryness!  So, I am a bit frantic to find something to help before the ocular rosacea worsens.  Sadly, there is little to be done, although I found a few studies of neurogenic rosacea, a new fifth subset of rosacea, that suggest an off-label use of an OTC drug.  I am interesting in trying that.  Although, tell me, how would one go about applying a nasal spray topically??????

Now that it is not merely my skin, but further danger to one of my eyes?  Well, I have started asking my GP to move this to the top of the agenda instead of languishing at the bottom.  It is one of those thing that just has to be so darned complex and out of the purview of most doctors.  Normally, you would see a dermatologist and work on triggers.  But, with neurogenic rosacea, the triggers are within my faulty autonomic systems.  And, with the skin of the face, you have the sympathetic, parasympathetic, and sensory systems all at play.

I am galvanized about putting my research skills to work to see what I can find.  After an initial search, I have four good articles to start, though one of them is so technical that I can only understand a small fraction of the text.  Once I have a goodly collection, I plant to give an annotated bibliography of them to my GP.  She also has a doctor friend who is currently in India but who might be informed on possible treatment for ocular rosacea.

I have to admit, it crushes me to have what I now consider a clown face.  When I flush on the left side, there is a large letter C on my face, or maybe better put a tilted letter U.  So there is this gap in the center and on one side where my skin is the pale tone that I have had my entire life.  When I am not flushing, I still have redness on both cheeks and on the bottom of the left side of my face.  I very much dislike looking in the mirror these days because I no longer recognize myself.  And I am stunned at just how much my skin has become damaged in the past few months.

SIGH.

No comments: