going to a private clinic, what to ask for?

[orange86]

yes it does sting, but i usually lay down and close my eyes for a few minutes. I still use eye drops throughout the day but as i say reduces the pain and discomfort.

[orange86]

i went to the eye hospital today. i finally finally finally have been presribed ikervis !!! After a bit of a beg story of my pain and soreness she also gave me a months course of steriod drops (prednisolone sodium phosphate)

She told me if she saw my eyes without knowledge of my history she said she would have told me to leave!

Before i saw the consultant the nurse did a schurmers test which they said was within normal ranges (maybe because im using optimel honey gel and its giving me extra moisture).
I asked about punctual plugs and consultant said i would be over watering with tears!

i'm back at the hospital in 3 months so hopefully the ikveris gives me some relief (she said will take 6 weeks to kick in).

[LindaDawn]

Thank you for posting. Think you did really well to get the ikervis prescribed and the steriiods. Hoping they give you lots of relief. Take care.

[orange86]

update: the light sensitivity i had in December had passed by January. I don't think the ikervis is working yet, nearly 3 months in.

couple weeks ago i let my diet slip and was eating sugary foods, i developed really bad dry eyes which lasted for just over a week !! i'm feeling a little better now but realise diet plays a role in my dry eyes. I'd put money on me having auto immune condition, it would tie in with my ibs, dry skin, irritable bladder, etc

i'm now on a aip diet, no sugar, gluten, wheat, dairy or grains. it's tough ! lets see how it goes over the next few weeks.

i'm really hoping ikervis kicks in.

I've ordered NAC tablets and GLA oil (borage),

[LindaDawn]

Hi. Thank you for updating us. Really pleas3d u r feeling a little better. I have heard that ikervis can take up to 6 months to work. I hav3 some at home I have never tried. Too scared! Does the ikervis burn and make your eyes bloodshot? Are you still using the optimal heney eyedrops and do they sting and make your eyes re?

[orange86]

Hi, the ikervis does sting but i man it out and pain subsides after a 5 mins lol

I'm still using optimel honey, i does sting and make eyes red but goes white after 10 mins and eyes have more moisture.

problem i've got is that air con / wind and computer use will make me worse. i'm going to ask for punctual plugs next.

[orange86]

Hi folks, another update.

I've been suffering from acute sharp pain in my eyes, e.g. at times in the early hours of the morning. when sitting down at 8pm watching tv and also developing a mini headache with it.Maybe corneal nerve sensitivity due to strong dry eyes

I went to A&E on Saturday. There was no one there who had the clinical experience or knowledge to help me. I got told come back on Monday morning which is today.
Consultant said to use ikervis 3x a day rather than 1x and use softacourt (steriods) for an extra two months.
The cost of ikervis is probs £72 a box, thats at least £216 a month !

i had to ask her to express my mebiem glands!! she said the middle parts are expressing but outer parts are not : that worried me but she didnt seem bothered.

I'll be going to tks-optometrists in Northampton to get some expert advice and help for dry eyes.

[LindaDawn]

Thanks for updating. When I have had problems I have always gone to an eye hospital A & E rather than a general A &E. I am assuming there isn’t one close to you. Please keep us updated. Hope you get some relief very soon. What a nightmare this dry eye is!!

[orange86]

Last Thursday i was in the office. The air con, overhead lighting and screen time caused the most intense pain in my life - sensation of acid being thrown into the eyes.
i got home and was basically disabled, bed bound with stabbing pain in right eye and headache. This reduced a little the next day but was still there and followed on Saturday.

Think i have cornea nerve damage

I was in A&E eye hospital Saturday (2nd visit in a 8 days). Saw a young ophthalmologist. He looked at my eyes and said he doesn't think I have corneal neuropathy, but I said how can you be sure without confocal microscope? I also said maybe I need to be referred to a neurologist but he said you will just come back to a ophthalmologist.

He offered me punctual plugs and I accepted (It's a double edged sword - i cannot have sugar products as it will cause major eye inflammation,maybe even beer which i've not drank yet out of fear?). He didn't measure my punctua but said they are small and he has generic silicone plugs. It's Sunday now and the right punctual plug is still causing me a bit of pain, left has settled down. Don't think i've noticed much difference yet with the plugs.

I asked him to check my TBUT (before plugs were inserted), he counted to 10 seconds, I'm over 5 months into ikervis and maybe it's kicking in - now that im taking it 3x a day but i haven't got a huge amount of symptom relief yet.

[LindaDawn]

Thank you for updating us. I didn’t realise you could get punctual plugs fitted immediately in A & E. I haven’t tried them as I understand they are for aqueous deficiency.. Do you still have the right eye pain. I have right eye pain that has never been investigated. I get a little relief from Doxycycline. A TBUT of 10; is considered almost if not normal. Hoping you get are getting some relief now. Please keep us updated.

[orange86]

i'll keep this as a diary to track my progress.

On Friday 3rd July i went to TK-S opticians in Northampton for dry eye assessment.
They tested tear osmolarity which was 310 / 320 from what i remember.
Also my eyes were tested in a keratograph machine. It showed my TBUT was over 25+ seconds with no break up spots. I found this staggering and could not believe it.
My meibum glands were showing as truncated on the imaging and when the ophthalmologist expressed them he said they were coming out thick. No surprise there.


I told them i suffer eye pain and headaches but didnt get much of a concrete reply on this.
They gave me daily disposable contact lenses to wear which seem to help in the wind outside but not really on the laptop when working.


On Tuesday 14th July, i went to London Moorfields eye hospital for confocal microscopy and see a consultant.
The consultant looked at my eyes through a slit lamp and said TBUT is 5-6 which isnt great. I said this at odds against the keratograph TBUT reading at TK-S. He said those machines dont always give accurate readings. Anyway the 5-6 seconds sounds about right when i saw the A&E ophthalmologist 3 weeks ago who said it was around 6-7 seconds. He did a schirmer's test and kept them in eyes for a minute, apparently there was enough tears being produced which suggests the ikervis is kicking in.

Microscopy results came back fine - no damage to either cornea which was bit of a relief. Discussed results with consultant that signs and symptoms dont exactly correlate and said i probably have sensitive corneal nerves (mainly right eye) that can be reversed. He prescribed me Optimmune cyclosporine 2% ointment which cost me £70 for a month supply !
He mentioned a bandage lens to protect the cornea but will see.

I cant really sit under overhead lighting as it will make my eye pain worse and lead to headaches.


This is the most expensive disease i've had !!

I'm on the hunt for ophthalmologists that can do regular manual gland expressions / IPL at reasonable price in the north and middle England.


Treatment:
Finger prick autologus drops 4x a day since 25th June
Ikervis for just over 5 months and last 3 weeks instill 3x a day. I think this has now kicked in as my eyes are producing more tears.
Softacourt (steriod) 2 months to date x1 a day
Nu lids device each night to debride meibum glands and clean the lid line.
i've ordered the blephasteam goggles as the usb heated eye mask doesnt seem to help.

[deep_dry_eye]

i'll keep this as a diary to track my progress.

On Friday 3rd July i went to TK-S opticians in Northampton for dry eye assessment.
They tested tear osmolarity which was 310 / 320 from what i remember.
Also my eyes were tested in a keratograph machine. It showed my TBUT was over 25+ seconds with no break up spots. I found this staggering and could not believe it.
My meibum glands were showing as truncated on the imaging and when the ophthalmologist expressed them he said they were coming out thick. No surprise there.


I told them i suffer eye pain and headaches but didnt get much of a concrete reply on this.
They gave me daily disposable contact lenses to wear which seem to help in the wind outside but not really on the laptop when working.


On Tuesday 14th July, i went to London Moorfields eye hospital for confocal microscopy and see a consultant.
The consultant looked at my eyes through a slit lamp and said TBUT is 5-6 which isnt great. I said this at odds against the keratograph TBUT reading at TK-S. He said those machines dont always give accurate readings. Anyway the 5-6 seconds sounds about right when i saw the A&E ophthalmologist 3 weeks ago who said it was around 6-7 seconds. He did a schirmer's test and kept them in eyes for a minute, apparently there was enough tears being produced which suggests the ikervis is kicking in.

Microscopy results came back fine - no damage to either cornea which was bit of a relief. Discussed results with consultant that signs and symptoms dont exactly correlate and said i probably have sensitive corneal nerves (mainly right eye) that can be reversed. He prescribed me Optimmune cyclosporine 2% ointment which cost me £70 for a month supply !
He mentioned a bandage lens to protect the cornea but will see.

I cant really sit under overhead lighting as it will make my eye pain worse and lead to headaches.


This is the most expensive disease i've had !!

I'm on the hunt for ophthalmologists that can do regular manual gland expressions / IPL at reasonable price in the north and middle England.


Treatment:
Finger prick autologus drops 4x a day since 25th June
Ikervis for just over 5 months and last 3 weeks instill 3x a day. I think this has now kicked in as my eyes are producing more tears.
Softacourt (steriod) 2 months to date x1 a day
Nu lids device each night to debride meibum glands and clean the lid line.
i've ordered the blephasteam goggles as the usb heated eye mask doesnt seem to help.

schirmer's test is old school, and should not be used in cases of MGD. it tells us nothing (e.g., your problem is your oil production, not water tear production).

thick secretions is classic MGD, suggest you would benefit the most on IPL.

My opinion, nu lids, blephasteam are not very useful. Do daily warm compress, morning and night. This will soften the mebium and encourage flow.

Continue the Ikervis, and add IPL treatment to the mix. I believe you will benefit from IPL. If possible and you have access to Xiidra, add that to the mix as well.

[LindaDawn]

Orange86. Have you thought of Aston University for your IPL? I am trying to get in touch with them for IPL. Not sure if they are closed for simmer as not heard from my e,mails.

[LindaDawn]

Orange86. How are your punctual plugs? Is it helping?

[LindaDawn]

Orange86. Are you sri

using the optimal Honey eyedrops?