I can't cope anymore

[NotADryEye]

I too cannot understand why all the conflicting advise/results from all these professionals, it is so frustrating.

Getting an accurate diagnosis is half the battle. The next half is the treatment.
One MD/naturopath once told me that practicing medicine is like baking a cake. There are a lot of cake recipes. All are different. And you might like some more than others. But you always end up with a cake.
Nevertheless for the patient it is frustrating because we don't know.... are we baking a vanilla cake or a chocolate cake or a vegan cake or maybe even a cupcake.

[littlemermaid]

Yes, a very sensible young GP just shared in a meeting that despite all the science, treating people feels like more of an art. We are lucky if we have good regular docs who know the eyes well and how things respond, to make good decisions.

[Rebecca Petris]

Getting an accurate diagnosis is half the battle. The next half is the treatment.
One MD/naturopath once told me that practicing medicine is like baking a cake. There are a lot of cake recipes. All are different. And you might like some more than others. But you always end up with a cake.
Nevertheless for the patient it is frustrating because we don't know.... are we baking a vanilla cake or a chocolate cake or a vegan cake or maybe even a cupcake.

AHA… at last, my kind of simile .

Carrot cake please.
And not too often, but let's do it right if we're going to do it at all.
Lavish proportions of butter and cream cheese!
Honey, not refined sugar.
ABSOLUTELY NO UNPRONOUNCEABLE ingredients, please.
As few ingredients as possible.
As many organic ingredients as possible.

No overbaking [medicating?]
No underbaking either.
No religious adherence to recipes (no matter how well esteemed by the profession) in defiance of common sense or one's taste buds.
Mind the unique environmental conditions and unique palates of intended consumers.

[lizlou29]

Hmm...I really want a cupcake now.

Had an assessment for pain management counseling today. She said I was the first person she'd seen who needed counseling for dry eyes. I got the usual "do eye drops not help?" I guess I don't blame people for that as a year ago they did help and it was all I needed to stop the irritation. I think she thought I was a bit mad as she didn't understand why I wasn't going out as much as I used to, she thought I may be agoraphobic! I'm definitely not, it's just the pain of air on my eyes is too much at the moment (I guess that sounds a bit crazy to some). She suggested anti-depressants, I said I wasn't depressed and she said "well surely you are if you are in constant pain". I'm not depressed though just completely fed up. She said Gabapentin will be the best thing but I'm not sold on that. My ophth has said to try and steer clear of pain meds as most of them won't help and some of them may make things worse.

Her parting shot was "your eyes don't look too bad, I must of caught you on a good day". Thank goodness she isn't the counselor!

Next step is seeing a counselor for an assessment (that's what I thought I would be doing today) which is a 6-8 week wait then if they agree I need counseling it's another 2-3 month wait after that. NHS is brilliant for some things but it really falls short when it comes to psychological help.

[NotADryEye]

How baffling and frustrating. We all know that pain is not the same as depression. I would stay away from any gabapentin, but that's me.
"Your eyes don't look too bad".... as if what can be seen by the naked eye compares in any way to what we can see in our own magnifying mirrors and what can be seen by slit lamp.

Just nutty.... which is how I prefer my cupcakes and not my doctors.

[littlemermaid]

Lizlou ~ With these people or opticians, we call it chronic eye inflammation, or chronic keratitis, or ocular rosacea, with painful flareups. Avoiding dry eye, blepharitis, because otherwise we get the 'can't you just...'

[farmgirl]

Dear Lizlou: I have taken gabapentin for sleep for 15 years or more. I have had dry eye for 3 1/2 years. They are not related as far as I am concerned. I have the dry eye because I developed Sjogren's not because of the gabapentin. The gabapentin has been a Godsend as without it I would sleep rarely and in fits and starts. I was on Rivotril in the beginning but was developing a tolerance for that and so switched and am so glad that I did. The quality sleep would do way more good for your eyes than any potential harm that might come from the gabapentin. For what it worth that's my opinion based on experience....F/G

[lizlou29]

LM - My GP had referred to it as ocular rosacea in the referral letter but the doctor I saw wasn't clear what the symptoms were. Also, I've only ever once been given a diagnosis of ocular rosacea as other eye docs have said it is not a proper diagnosis and that I have MGD caused by the rosacea....

Farmgirl - Does the Gabapentin actually help your eyes though? My sleep is getting much better so I don' really need to take anything for it other than occasional melatonin.

[littlemermaid]

My GP had referred to it as ocular rosacea in the referral letter but the doctor I saw wasn't clear what the symptoms were. Also, I've only ever once been given a diagnosis of ocular rosacea as other eye docs have said it is not a proper diagnosis and that I have MGD caused by the rosacea....

After a while we realise a 'diagnosis' is a description of what's observed, and we can call it whatever's helpful.

[lizlou29]

Just had the letter through from my appointment last Friday and it contradicts what i've been told by other ophths I've seen in the last few months. He told me in the appointment my TBUT was 8/9 secs when I'm pretty sure it is 2-3 secs but in the letter it says 12+ secs. Also, he says although I have dry eyes the bleph is minimal. Again this contradicts what I've been told by others. He suggested a Serum Angio Converting Enzyme test and at some stage a biopsy of the conjunctiva to look for changes consistent with Sjogren's. He also told me during the examination that some of the MG's were slightly blocked but oil came out when pressure was applied. In the letter it says MG's are all healthy with no obstruction. When I saw still photos of my MG's a couple of months ago they were all blocked and the oil was a glue-like consistency. My eyes feel worse than they did then but maybe that is because of the AD. Aside from the low Schimmer's (3 in left, 1 in right) the ocular examination was 'unremakable'. It says I don't require eye drops because my tear film is healthy....

I actually don't want my GP to see this letter though they have already sent it to her as I feel it really trivialises the condition. I'm a level 7/8 on the pain scale day after day at the moment but this letter makes it look like a couple of eye drops would work. If I didn't have serious dryness I wouldn't have four punctal plugs in and my eyes wouldn't feel like they are on fire!

[NotADryEye]

Just had the letter through from my appointment last Friday and it contradicts what i've been told by other ophths I've seen in the last few months. He told me in the appointment my TBUT was 8/9 secs when I'm pretty sure it is 2-3 secs but in the letter it says 12+ secs. Also, he says although I have dry eyes the bleph is minimal. Again this contradicts what I've been told by others. He suggested a Serum Angio Converting Enzyme test and at some stage a biopsy of the conjunctiva to look for changes consistent with Sjogren's. He also told me during the examination that some of the MG's were slightly blocked but oil came out when pressure was applied. In the letter it says MG's are all healthy with no obstruction. When I saw still photos of my MG's a couple of months ago they were all blocked and the oil was a glue-like consistency. My eyes feel worse than they did then but maybe that is because of the AD. Aside from the low Schimmer's (3 in left, 1 in right) the ocular examination was 'unremakable'. It says I don't require eye drops because my tear film is healthy....

I actually don't want my GP to see this letter though they have already sent it to her as I feel it really trivialises the condition. I'm a level 7/8 on the pain scale day after day at the moment but this letter makes it look like a couple of eye drops would work. If I didn't have serious dryness I wouldn't have four punctal plugs in and my eyes wouldn't feel like they are on fire!

lizlou, AD is consistent with Schirmer's numbers and why you have the 4 punctual plugs. Delayed tear clearance, which you have since all your puncta are plugged, especially if your eyes are extremely sensitive (as are mine) can make your eyes feel terrible. But I don't think anyone would recommend removing the puncta or giving your tears an easy outflow channel because your Schirmer's are so low. Consequently, the key for you now might be in eliminating, as much as possible, any bacteria, demodex, foreign matter, anything at all, that ends up in your tears pools.

Also, you definitely want to look into Sjogren's as AD is a frequent symptom/co-morbidity.

Maybe your mg's have improved, but there are still other issues causing the extreme discomfort and hence the Azythromycin prescription and the discussion re: demodex.

Although what the letter says may sound inconsistent, it is so terribly important to remember that even when we get one symptom addressed and treated there are so many other conditions that can feel exactly the same but that have a completely different cause. For example, I have had each of these things happen in the upper right eye and eye lid area, in the exact same spot. Each of these is completely different but the sensation and pain were exactly the same. These things are:
1) one or more blocked meibomian glands
2) muscle spasm
3) injury - I poked my thumb nail into my eye
4) the root of an eye lash as it was growing in

If I had the meibomian gland probed and unblocked but the pain persisted, I might think that probing didn't work, but in fact, there was something else very different going on. Do you understand what I'm getting at? It feels the same, but the cause is different. I think that's just because the eyes have the highest concentration of nerves in the body.

So don't despair. You do have to wonder why you were told one thing during the exam but you are reading something different in the letter. Again, I don't know how your health care system works, but if it were me, I would call the doctor and ask why there is a discrepancy.

And when you see your GP, or any other doctor, insist that your pain is still the same. Don't let anyone tell you it is in your mind. It's not. The pain is real and there is a real cause.

[Guest]

Farmgirl - Does the Gabapentin actually help your eyes though? My sleep is getting much better so I don' really need to take anything for it other than occasional melatonin.

Hope you don't mind me butting in hehe

Gabapentin is a drug that can be helpful for many things - one of which happens to be sleep.

However, it is also used for neuropathic pain, therefore in theory, it may be helpful if one's eye pain is in part due to neuropathy.

And yes, it might increase the dry eye.... key word there being MIGHT, not that it for sure WILL. So worth considering as an option, if not now, then maybe down the road if you've tried everything else and your eyes are still not in an acceptable state.

[littlemermaid]

Some docs are using the Ocular Surface Disease Index (OSDI) to record the debilitation, which is not being reported in your assessments. There's a link on Dryeyezone.

Here's a philosophical one on behalf of the docs. http://more-distractible.org/musings...hronic-disease I'm only feeling the sympathy in the overstretched NHS though because the bills hurt my family and children with pre-existing disorders are uninsurable here.

[lizzyk]

Is that what you think, Lizlou? I'm thinking 10 mins is not much for first Private appointment? We get that first with Optometrist doing full Orthoptic clinical exam with lenses etc, and taking history. Then we're in there with Ophth 20 mins+, often well over if there's problems.

Love that. Thank you

Now we are self-managing more effectively and reading up about how people here have had success with different methods, this doesn't bother me any more. Even docs within one team have very different approaches, don't they. It's fascinating to see protocols being developed. And we patients can help medicine a lot with that with our experience.

It's been a huge relief for a very experienced doc to say 'we just don't know yet' and offer a few off-piste thoughts and monitor some new treatments. I absolutely love that if they are offering to work together with us. It leaves the field wide open for future progress and hope, and it shows great honesty and integrity, and includes us in the research.

What I can't stand is when less experienced or knowledgeable people pretend they know what they are doing, fob us off, and obviously Do Not Care if they cause damage. I really don't expect people to have all the answers but not anything less than a good 'consultation' and current treatments.

Hi LM. Over the last few weeks since my bad experience with the horrible consultant i have seen 2 more optometrists. The horrible consultant told me my eyes were not dry, there were no blocked glands, no blep and my eyes looked fine.

The first optometrist i saw told me at least half of my glands were blocked and suggested massage and carry on with the eye drops.

The second optometrist told me i have meibomian blepharitis, some of my glands were blocked and my eyes were so dry that he would not consider me for contact lenses

I am seeing my GP next week and asking for a referral to another consultant, possibly in Taunton, fingers crossed this one will be a bit more understanding!

[farmgirl]

Sorry, back to the gabapentin question. I just revisited this post. I don't know lizlou if the gabapentin helps with the dry eye or not as I had been taking it for many years before I got the dry eye. Maybe it would be worse if I didn't take it, maybe better I don't know and I am not going to experiment. I assumed your Dr. was prescribing it for sleep since in your first post you detailed going off of sleeping pills and as a result of that and your pain not being able to sleep. My son takes it for depression and like SAAG says it is also used for neuropathic pain. Sounds like you have all 3 so it might be worth a shot....cheers...F/G