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So, today I got another diagnosis to my already detected ocular rosacea: neuropathic corneal pain
I belive this diagnosis to be extremly accurate as I tried everything there is over all these years (having problems since 2011) and I still have burning eyes, sometimes all day long.
An example of the many, many treatments I already did: IPL, doxy, steroid drops, cyclosporine, warm compresses, cod compresses, allergy drops, azithromicyn, hypochlorus acid, ivermectin and tea tree oil against demodex, lid massage, the list goes on and on...
STILL eye trouble and üain. So, I finally believe that this doctor found the right cause.
This is what we did today (on July 25th I will get a confocal microscopy):
He did instill a drop in each eye do deaden the cornea - relief was there but not fully, so he suspects nerve damage in cornea and also in central nervous system.
He recommends pain medication for this and prescribed me the following:
start with Nortriptyline 10 mg and go up to 100 mg a day over a couse of 6 weeks
when I am at 100 mg a day after 6 weeks, I should do the 100 mg a day for another 6 weeks
if after 6 weeks with 100 mg no improvement, then I must add Naltrexone
1,5 mg for two weeks (evening), then 3 mg for 2 weeks, then 4,5 mg for two weeks (eventually reduction of dosis if adverse effects)
If still no relief, stop taking everything
Also we will do confocal on 25th July - couldn't be done today as confocal is at the uni and not in his office
confocal can detect corneal nerve damage
If corneal nerve damage is there, likely I will be getting serum drops to help repair nerves in cornea and maybe sclerals too (but both are VERY expensive he said and insurance will likely NOT cover the costs)
I don't know how I can afford it then.
I am very depressed right now as this disease is realitevly unexplored and not much data about it - also very costly treatments
The drug nortriptylin was not available in any pharmacy right now - so I can't even begin with treatment
I belive this diagnosis to be extremly accurate as I tried everything there is over all these years (having problems since 2011) and I still have burning eyes, sometimes all day long.
An example of the many, many treatments I already did: IPL, doxy, steroid drops, cyclosporine, warm compresses, cod compresses, allergy drops, azithromicyn, hypochlorus acid, ivermectin and tea tree oil against demodex, lid massage, the list goes on and on...
STILL eye trouble and üain. So, I finally believe that this doctor found the right cause.
This is what we did today (on July 25th I will get a confocal microscopy):
He did instill a drop in each eye do deaden the cornea - relief was there but not fully, so he suspects nerve damage in cornea and also in central nervous system.
He recommends pain medication for this and prescribed me the following:
start with Nortriptyline 10 mg and go up to 100 mg a day over a couse of 6 weeks
when I am at 100 mg a day after 6 weeks, I should do the 100 mg a day for another 6 weeks
if after 6 weeks with 100 mg no improvement, then I must add Naltrexone
1,5 mg for two weeks (evening), then 3 mg for 2 weeks, then 4,5 mg for two weeks (eventually reduction of dosis if adverse effects)
If still no relief, stop taking everything
Also we will do confocal on 25th July - couldn't be done today as confocal is at the uni and not in his office
confocal can detect corneal nerve damage
If corneal nerve damage is there, likely I will be getting serum drops to help repair nerves in cornea and maybe sclerals too (but both are VERY expensive he said and insurance will likely NOT cover the costs)
I don't know how I can afford it then.
I am very depressed right now as this disease is realitevly unexplored and not much data about it - also very costly treatments
The drug nortriptylin was not available in any pharmacy right now - so I can't even begin with treatment
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