I feel depressed that nothing works.

[benja5290]

I have done my best to condense a number of years of frustration and lack of progress. I'm likely to have missed some details in order to get my main ideas across.

Since childhood I have suffered from pain, irritated eyes, and repetitive blinking. I struggled through childhood and would find it difficult to do presentations, read books aloud and maintain comfortable eye contact with peers in class. In my own personal time at home, I would struggle to read books without blinking repetitively in a way that would allow me to read. At the time doctors would dismiss it as 'dry eye' and give me eye drops; each time a different type. To my disappointment, the eye drops would do nothing and the doctors would shrug and hope for me not to return.

30 years on and the problem remains the same, except this time the GPs now refer me to opthamologists and opthamneurologists (maybe over 20 so far, some privately). The progress made has been limited and my eyes feel uncomfortable most of the day.

I have lost hope and will only summarise some of the most recent medications I've taken - regrettably I cannot remember every single eye drop I have tried (currently use: hyloforte), but my cupboard upstairs is a pharmacy of natural and commercial, prescribed and non-prescribed products. I've looked a lot online, performed loads of online symptomatic tests, seen specialists and heard of other people's stories. Because I suffer from allergies as well, I've put a lot of effort into anti-histamine treatment, mast cell stablising eye drops (sodium cromogycate, lodoxamide, etc), as well as cyclosporine (immunosuppressant), and steroid eye drops to reduce irritation. In terms of bacterial infections and blepharitis, I've used a whole array of eye wipes, some which are tee tree based (demodex), blephasol, various occusoft wipes, and doxcycline (tablets to help with oil thinning and antibacteria). Of course I have also tried blephasteam goggles, heated flaxseed bags, massaging techniques. I've also removed a lot of allergic type substances from my diet in case these have caused bacteria growths that interfere with the biofilm around the eyes. I also use a face wash that works against this and don't use anything which is perfume based, or could have an irritant - everything has to be hypo-allegenic. In case of any links to histamine, I've also taken DAO tablets in the past. I've studied my genome for clues too, but no luck. I've also got an air purifier at home.

In truth, I find very little helps. In the past, the doctor had diagnosed blepharospasm and gave me botox injections that did nothing helpful. They hate me saying that, but how can I lie?
The most recent specialist I visited said that my condition was to do with meibum gland disorder (MGD), allergic eye disease (but was not specific), and that tear film insufficiency.

I have taken every single supplement under the sun to help with helping the meibum, including flaxseed, omega 3, but acknowledge in many cases these take many months to see signs of progress.

I take many anti-histamines daily (which they themselves can dry the eye), and do the usual treatments for dry eye, but very little helps. To be honest, most opthamologists have said that my dry-eye is marginal. Just having the window opens and medium bright light from outside causes immediate eye discomfort.

At the moment, the doctor and opthamologist have given up on me and hope I go away, but it's so difficult in my current position to work and interview for jobs.
Please see link where i recorded a short video to show difficulty my eyes face.
My final thought is whether scleral lens would be something that might help. After extensive reading, my feeling is that perhaps I suffer from mild corneal neuropathy where the eye is very sensitive to light wind and toxins? I know scleral lens are commonly used for ketaconous but I believe they may also be able to help protect the eye as it seems hypersensitive (generating allodynia/hyperalgesia response) to things which should not prompt such a response.

I'd appreciate people to write back with ideas. Many thanks, Ben

[gilles]

Have you been tested for partial blinking (I think this is being tested via a Lipiview machine)?
In the meanwhile you could try blinking exercises in order to train the blinking pattern.

[KittyCat]

Have you thought about IPL if you have MGD? There seems to be some really positive success stories having the procedure! I myself am having it done for the first time on Wednesday for MGD.
Are you blinking quickly because of the stinging/burning, or is it more to do with an eye spasm? I have a TBUT of 3 seconds in my worst eye (left), and I do now blink a lot because of that.
I'm hoping that the IPL treatment increases my TBUT so that I don't have to blink/squint/squeeze my eyes as much as I currently do!

[Hokucat]

Ben, I feel for you with your entire life dealing with these eye issues and watching your video. During my worse years, I blinked like that all the time. I had zero tear film so any exposure to any slight air, light, etc. made me constantly blink just like you...my eye doctor said it was an automated response for me to keep closing my eyelids to protect my eyes that had no natural protection from lack of tears.

Given you say you’ve had problems all your life, am wondering if you were born with eyelids that do not properly close and press together. This could cause the oil in your meibomian glands not to be fully excreted from the start, causing MGD and usually also aqueous deficiency because the tear glands are overworked trying to compensate for the MGD. Have you ever seen an oculoplastic surgeon who might be able to evaluate this? Sounds like you’ve seen every type of doctor, but just wanted to mention it in case you have not.

I do think it’s a good idea to try scleral lenses. They are used to treat many eye conditions. It might not be THE solution, but if it can give you at least some relief, that will help. Make sure you see a true scleral specialist, as the experience and expertise of the fitter can make a difference in your ability and comfort wearing the lenses. Some people can not tolerate sclerals, but may not have had a good fitter. Others just cannot wear them. Usually if you go for a consult, they will have you try on a trial pair to see if you can tolerate the lenses and if it provides some relief. So worth going for the consult sooner rather than later, especially in your case. I wear mines 10-12 hours a day.

Hope you find some relief real soon.

[benja5290]

Have you thought about IPL if you have MGD? There seems to be some really positive success stories having the procedure! I myself am having it done for the first time on Wednesday for MGD.
Are you blinking quickly because of the stinging/burning, or is it more to do with an eye spasm? I have a TBUT of 3 seconds in my worst eye (left), and I do now blink a lot because of that.
I'm hoping that the IPL treatment increases my TBUT so that I don't have to blink/squint/squeeze my eyes as much as I currently do!

Hi KittyCat,

Thank you for the suggestion regarding IPL. I've done a bit of reading about it and it's definitely something I'm going to look into - I hope you have/had good results on Wednesday.

My eyes are stinging and painful, sometimes even after washing my eyes out with cold water. There are times when it burns but i associate that with allergies. One of the latest opthalmologists suggested there were like cobblestones under the eyelid caused by irritation, which obviously doesn't help when the eye is blinking to remove the irritant in the eye.
I think there is eye spasm involved, but that could be in reaction to tiredness / or it may exist in isolation alone. Quite often when my eye isn't irritated I can see mild muscle movement (like myokimia). One thing noticeable for me is that my eyes feel a lot heavier due to allergies. After eye wipes and previously anti-allergic eye drops, they would feel much lighter.

Even when my eyes feel particularly irritated, it feels like it wouldn't take much to set them off .

[benja5290]

Ben, I feel for you with your entire life dealing with these eye issues and watching your video. During my worse years, I blinked like that all the time. I had zero tear film so any exposure to any slight air, light, etc. made me constantly blink just like you...my eye doctor said it was an automated response for me to keep closing my eyelids to protect my eyes that had no natural protection from lack of tears.

Given you say you’ve had problems all your life, am wondering if you were born with eyelids that do not properly close and press together. This could cause the oil in your meibomian glands not to be fully excreted from the start, causing MGD and usually also aqueous deficiency because the tear glands are overworked trying to compensate for the MGD. Have you ever seen an oculoplastic surgeon who might be able to evaluate this? Sounds like you’ve seen every type of doctor, but just wanted to mention it in case you have not.

I do think it’s a good idea to try scleral lenses. They are used to treat many eye conditions. It might not be THE solution, but if it can give you at least some relief, that will help. Make sure you see a true scleral specialist, as the experience and expertise of the fitter can make a difference in your ability and comfort wearing the lenses. Some people can not tolerate sclerals, but may not have had a good fitter. Others just cannot wear them. Usually if you go for a consult, they will have you try on a trial pair to see if you can tolerate the lenses and if it provides some relief. So worth going for the consult sooner rather than later, especially in your case. I wear mines 10-12 hours a day.

Hope you find some relief real soon.

Hi Hokucat,

Thank you for your kind reply, sharing your experiences and making these suggestions.
I feel far more optimistic knowing there are potential options out there.
I hope I can come back with positive news one day.

Many thanks, Ben

[benja5290]

Just to follow up, that I saw a dry eye specialist and his opinion was that the eye does not have tear film insufficiency in his testing and only minor MGD - that means it was either not there originally as he suspects (or the blephasteam goggles helped). There could be another third reason (like good lid hygiene), but basically he showed me a graphic which allowed you to see the tear film staying unaffected for around 10 seconds at like a gold standard. It was about 90% unaffected over time.

He also looked at the glands and from what he could see there were few glands that appeared to be blocked.

So I feel really confused as I've been told continually I have dry eye by so many specialists. My lower eye lids are always really deep red, like allergy affected. But he thought the lids looked well kept with no signs of demodex, serborrheic dermatitis, or bacteria.

Although his specialism isn't in opthalm-neurology, he thinks it is likely corneal hypersensitivity which I might be able to manage with soft contact lens (which would be ok if dry eye is not an issue). He suggested plugs as well.

As a specialist in dry eye he sees many patients so I asked how I would compare and he said that I would be so far off the scale as he doesn't think it's dry eye. He seemed very professional.

He was honest enough to add that IPL treatments offered there wouldn't most likely make much difference to my circumstances.

[TARYN]

Have you tried Pataday followed with cold compresses for your red lower eyelids

[benja5290]

Have you tried Pataday followed with cold compresses for your red lower eyelids

Hi Taryn,

Many thanks for your suggestions.

I have found Pataday (known in UK as Opatanol/Olopatadine) to be really effective in the past but gradually it stopped working, becoming less and less effective in duration of action.
Eventually it would only sting my eye and provide no relief. I tried similar dual action antihistamine/mastcellstablizer types but nothing provided any relief at all.

Cold compressions do help but don't last long.


* I tried posting earlier but it didn't work for some reason*

[Jahcpa]

Have you been tested for Blepharospasm. Oh my goodness, you video looks just like me. I went through 7 doctors before I was finally diagnosed. Have you thought about seeing either a neuro-opthmologist or a movement-specialist neurologist?

[benja5290]

Have you been tested for Blepharospasm. Oh my goodness, you video looks just like me. I went through 7 doctors before I was finally diagnosed. Have you thought about seeing either a neuro-opthmologist or a movement-specialist neurologist?

Hi Jahcpa, how are you? Thank you for your reply. How are you coping since your diagnosis?

In response to your question, I added some notes below:

I have seen 20+ specialists in various ophthalmologist fields and there is a consensus amongst a number regarding a blepharospasm diagnosis - however they are divergent in opinion on type and cause, including symptoms. All the reports say something different - some have commented about extremely dry eye, others have said no dry eye at all. Similarly eyelid blepharitis, some have said significant, others said absolutely no signs. Some make reference to cornea and conjunctiva, and others have avoided any comment. In the UK, if you have any signs of blinking like this they want to inject botox or give dry eye diagnosis. A number of them struggle to see anything 'wrong' in the examinations and very few can correlate the blinking and discomfort with the results of their assessment. By the end of the assessment, they seem annoyed at me for pressing them in saying that I can't do my day job and would like assistance from them in helping manage the symptoms - they just say botox. But I did botox for a year and felt very minimal difference. Some even talk about mental psychogenic responses, but this is not real possibility.

I can say the things that definitely help and what extent in brackets as a percentage: alcohol (80-90%), sunglasses (80-90%), blephasteam (20-30%), magnesium (50% when high dose), quercetin (60%), most effective eye wipes (50-60%), eyes closed (80-90%), chloropheniramine (40-50%), clonazepam (60%), most topical anti-histamine and mast cell stablizers (0%), botox (10-20%), dry eye drops (0-20%), air purifier (10-20%), cool room temperature (50-60%)

Where 60% > means a significant reduction in the intensity and at least in some cases avoidance of discomfort.
Where 30-60% means helpful in frequency of 'episodes', but still mild discomfort.
Where < 30% means some assistance but not a strong enough difference to prevent episodes. Eyes still feel irritated.

I'm re-assessing Fl41 glasses and looking at raising my original score from 20-30% benefit. I'm also looking at transmittance spectrums for various tints to see which one may help. Typically they say blue light is most painful around 480nm for photophobia, but this can vary.

I tried bandage lens and had real difficulty due to the cornea being really sensitive and my eyes clamping shut when trying to fit them. My eyes feel irritated a lot and any peripheral movement makes things worse - putting in contact lens required this peripheral movement. I can't explain the irritation in my eye very well and a number of ophthalmologists look at the eye and eyelids and see 'nothing wrong with them'.

Slightly unrelated, but I obviously stick to hypoallergenic washes, cleansers etc as I find irritants in many fragrances.

Due to the effect of clonazepam, alcohol, and chlorpheniramine, all acting as sedatives then that could suggest pain centralisation (I believe this is pain perception amplified by brain), rather than peripheral pain. Although as anesthetic worked well to numb the cornea, then this implies that it could be managed around the cornea with a bandage lens. My feeling is that the bandage lens worked at a 30-40% level but due to the enormous difficulty getting them into and out of my eyes, it is an unrealistic option.

Obviously, I combine a number of the above to get best results. But I can't get away from the fact that my pain perception is high and more likely to do with nerves. The latest suggestions have been to see a pain management specialist (anesthesiologist).

Best regards, Ben

[Guest]

Have you tried autologous blood serum drops?

[LindaDawn]

Hi Ben. Sorry to hear of your eye problems. Have you thought of contacting the makers of the BBC 2 PROgramme The Diagnosis Dectectives to appear on it. Episode two of 4 is on Monday 7. Presenter is Michael Mosley.

[Jahcpa]

Hi again, Ben. I am doing very well with botox injections. I consider them a miracle that gave me my life back. I, also, saw many doctors before I had a diagnosis. Everyone kept saying dry eye, dry eye. Finally I met a wonderful doctor that correctly diagnosed my blepharospasm (or BEB). With the botox, I am somewhat normal. It is a conundrum. Dry eye can cause BEB or BEB can cause dry eye. Lucky for me it was the latter. Best wishes to you.