I can't cope anymore

[lizlou29]

Thanks all. I may give gabapentin a go. Lyrica made me loopy so hopefully this is better. Awful pain today and I'm going away for my birthday. I'm not driving thank goodness so can keep eyes closed in the car.

Lizzyk wishing you lots of luck. It is very frustrating that we can't get a consensus on the state of our eyes.

LM - SH has me fill out the OSDI and there is another he wants me to do. Will be driving by your neck of the woods later so will give you a wave!

[Roe72]

The 150 mg Lyryca made me feel dopey but I can take the 75 mg and it helps the pain. Also consider scleral lenses. They really help the pain also. Mine cost around $1,000.

[NotADryEye]

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

So far, my bet would be on the second optometrist who seemed to give the most detailed diagnosis. You might want to see a corneal specialist.

[littlemermaid]

Hello Lizzyk ~ Just found these optometrists Earlham and Christopher in Taunton http://earlamandchristopher.co.uk/ 'Our specialist optometrist Sarah Farrant is a national expert and international lecturer in dry eye and she can diagnose and treat the range of ocular conditions that result in your dry eye symptoms'. Haven't seen them, just followed a random link. Good luck with the new doc.

Good demodex video with collarettes at x40 by this optometrist in the Dry Eyes section, for anyone who likes that kind of thing http://earlamandchristopher.co.uk/dr...blepharitis-2/. If anyone's worried, it's treatable with tea tree shampoo solution (see demodex threads here).

[farmgirl]

If you do try the gabapentin lizlou I might add that in the beginning it made me really dopey, I kinda didn't feel really awake until noon. I was taking 300mg at night only. Now I take 600mg at night and feel nothing in the AM. I adapted to it fairly quickly like a week or so as I recall. I have never had to increase my dose beyond 600mg except on the odd night if I am still awake after a couple of hours I will take an extra one. That only happens about once a month on average, if that....F/G

[littlemermaid]

I'm not going back on any kind of sleeping tablet because of the hell I went through getting off them. Any meds that work on GABA are awful for me, I was a nervous wreck, lost a load of weight and had memory loss. The anti-histamine sleep meds dried my eyes out so bad and they haven't recovered from that. I sleep well every other night basically.

This is what Lizlou was saying earlier in the thread. The Ophth was thinking antidepressants and sleep meds might have worsened dry eyes but let's hope they can work it out together.

Love SAAG's suggestion of treating waking hours in the night like sleep and resting with eyes closed to bring about healing. I sometimes get up in between 4-hour blocks, and it's a lovely peaceful time, refreshing like sleep especially if we've already had a 4-hour block of deep sleep. I had baby twins, that's how I know, lol

Lizlou, are you tired during the day? (she's on holiday so let's hope she had a lovely time)

[lizzyk]

Thankyou so much LM i will def give this person a call I cant do much research myself coz i cant look at the screen for long - even with regular blinking!!

[littlemermaid]

Lizzyk ~ blurb seems a bit medically overconfident for some of us, but half the battle is finding sensible support, isn't it. Hopefully she might know who's who in Ophthalmology round your neck of the woods

[André Pereira]

Lizlou, I'll post here the same thing I posted in another thread, because it helped me a lot.

I had a great improvement with vitamin D.
Follow the link to my topic for further information: http://www.dryeyezone.com/talk/showt...-Great-Results

unfortunately it was not a cure, but I say cut 80% of the pain I had. Today I feel just a nuisance, especially at night.

Recalling that must be HIGH DOSES of vitamin D. Low doses will not help anything. I take 80.000ui per day. When the eyes are bad, take 160,000 to stabilize. When the doctor lowered the dose to 40,000, I came to feel pain.

I think it is worth you try. It is an effective treatment, and at least for me it was 10,000 x more efficient than doxy to take the eye inflammation.

If you need, I can send some to you, inclusive.

Improvements,

[lizlou29]

Had a pretty awful weekend away. Eyes are the worst they've been in months and on my birthday I woke up with a stye. Pain so bad I've barely slept last few nights. Home now and called my eye clinic but my normal ophth isn't there tomorrow so it's pot luck. Hoping for some sleep tonight.

When I took 5000iu Vit D for 2 months a blood test showed it had gone from 15 to 100, think the desired was 30-130 so I'd worry about toxicity at that dose but I'm glad it's helping you Andre!

[littlemermaid]

Are you taking the oral azithromycin?

[lizlou29]

Are you taking the oral azithromycin?

I did the 10 day course of it. I'm wondering if it's done more harm than good but I don't know if that's possible. I thought it would either work or do nothing.

[NotADryEye]

He also told me during the examination that some of the MG's were slightly blocked but oil came out when pressure was applied.

lizlou29, I just recalled something that Dr. ****** told me some time ago and that is consistent with exam and results at my last probing. It is something that you might consider as well.

He said something like this. Most doctors seeing the oil expressed during an exam would assume the glands are doing fine and encourage heat, massage or expression, to maintain or improve gland function. But they do not recognize the occult obstruction which may lead to gland damage with these therapies.

During my last probing sessions, the glands of the upper left lid showed a good volume of oil when expressed but were tender when he pressed on them. During probing I could hear and feel the pops and grittiness indicating obstruction. After probing the tenderness and pain was relieved.

I know this is difficult and confusing for you especially since no one can force a doctor to perform a procedure. But I can't help wondering how you might feel if you could get your mg's probed.

[littlemermaid]

Lizlou, what does the Raynauds look like in your other female family members? are they comfortable with the Endo treatment for thyroid? We did well in Rheumatology where they are good at thinking about autoimmune responses, allergies and drug reactions. Sometimes a 'rosacea' flush or sensitivity is more like a metabolic change, whether that is secondary to meds or endo or infection or other.

We have pretty much eliminated flare ups by going wheat, sugar, fruit juice and dairy free. This does mean eating very well and more of the good stuff, including those nice oatcakes and rice cakes, and we use olive oil and more oily fish eg Mediterranean diet. Mild spices don't seem to be a problem for us either, so all good with pulses and veg. Are you still drinking plenty water?

i know this isn't enough to turn things round for you but discovering triggers is part of managing systemic responses.

We use Azyter to clear infected glands.

[lizlou29]

NotADryEye - I think I'm going to put the MG probing to one side at the moment. Mr O'Brart is one of only a few in the country who will do it and if he says I don't need it then I'm not going to push to have it done. Obviously it does concern me that there may be obstructions but there are not many people around that would know better than him for me to ask!

LM - The Raynaud's is similar to other's in the family except it takes less for my hands to go white. For example I'l go into a cold bathroom and they'll start turning white but with my mum it only happens from prolonged exposure to cold outside.

I saw my ophth today and he questioned my diet. Wants me to take a Vit A supplement. I take a good multi-vitamin but it doesn't have Vitamin A.

He is trialling Azithromycin drops on patients at QVH as he wants to see what results they get before they prescribe them as standard so I'm starting a 4 week trial on Monday. He is ordering in the weaker cyclosporin drops from Moorfields but wants me to keep using the 2% only at night as I definitely couldn't use them in the morning. I also have an appointment with the guy there who does the scleral lenses to see if he thinks they would be a good idea for me. My ophth is going to the American Academy next week and he said there are always lots of new drops that are pushed on them so he's going to discuss them with me when I see him next time.

He said that they did trial oral Azithroymcin instead of Doxy but he thinks Doxy is more effective so I'm back on that now....