Rich S. Uk Dry eyes over 40yrs . Saying hi!!

[Rich S.]

Hi All.

Rich S. from Cambridge UK,trawling the net about my massive problem felt i was all alone untill i found this site,wow didnt realise it was such a problem world wide.

This site looks fantastic and although ive had a nosey around ive still got loads on here to look at and already have found one tip about wearing an eye mask at night to stopp my eyes drying out ,it does seem to help a little as i dont know if i have always shut my eyes tight.So within 1/2hr of being here great tip.

Dry eye by UK doctors is unheard off pat on the head and off you go with some drops.

My Story.

Im 52 ,a builder running my own business, always working outside the cold weather makes my life hell with dry eye,otherwise very fit.Have had dry sore red eyes since the age of ten but in the last 20 yrs getting much much worse,i can only describe it as peeling the strongest onion right under your eyes and making them sting all day. From awaking the stinging starts within 20 secs of waking up its then you know that your in for a bad day again, i dont have good days only bad or very bad,this condition does make you feel sorry for your self and i often say why me, it has seriously affected my life,my confidence has gone and i have to make a special effort to go out,trips out in the evening are non existent now as the pain by say mid afternoon has me finished the only releif is a sleep in bed.

Actually have just read an interesting thread on this site regarding the pain of dry eye is like a menthol feeling ,spot on i get that allthe time,cold wind is bad ,summer is bad possible early spring is my best time but not by much ,this is an all year thing, shops i can last only a few minutes in ,driving 20 mins and im done for ,computors terrible 30 mins( typing this post has me done for im afraid)it seems im becomnig a recluse in my own home.

In the last 20 yrs ive been to good old NHS hospital in Cambridge the world wide known Addenbrookes ive must of been 30 to 40 times, bloody useless a quick eye chart test always pass well,go home with some drops expensive at that and a massive dissapointment. Then i tried a private (BUPA) £100 a visit (oh but you can have a nibble at some grapes and a cold cup of tea)but it seems the same doctors are at Addenbrookes anyway so after 7 or 8 visits more drops, creams or pills which just dont work on me at all in fact often making it worse. The only one thing i learned from them in the last visit about 2 years ago is that i have a sympton called " Dry eye " marvelous it took them all 40 years to find that out!

Apart from the useless pills, creams which include oxycetracycline,doxycline, clarymist,liqufilm,theartears,moisture eyes,chloromycetin,fucithalimine,allergran etcetcetcetc blah ,blah,blal.

Ive even had over 10 small meobyian cysts cut out all to no avail, in desperation ivthen done Homeopothy no good, allergy tests, no good, even been told to do a colonic to get rid of all the rubbish drops etc ,done this 6 or 7 times all at big expense all to no avail.

It such a shame because at 52 yrs of age i am very fit ,very active ( well want to be) but this Dry Eye is something else ,definately getting worst as time goes by. in fact ive been typing this post now for 20 mins and my eyes are hanging out of my head now and its only 7.30 am and im about to go out to work in a minute and im therefore know im in for a very bad day because once it starts the condition does not get better that day untill i go to bed.

So thats my story over 40 yrs with dry eye,it really does grind you down,its not a reconised syptom in the UK,im soory if this post has come across as im feeling sorry for myslef but i do ,many a time i think id much rather have something else wrong with me even more seroius rather than dry eye,maybe thats a silly thing to say but im sure most of you with dry eye think the same.Because you use your eyes all the time whilst awake the dry eye condition is made much worse,if you had pains say in your foot yes it will hurt but you can get rest that up a bit ,these eyes well in my case very very poor every waking hour 24/7 the stinging is constant.

Thanks folks for listening and i cant wait to read a lot more posts looks a great site and very informative and by only just reading a few posts i feel so very much with you guys as you seem like people that understand dry eyes.

Thanks again.

Rich. Cambridge UK 29th Feb08

[eva b]

welcome from another UK member

Hi Rich,

I'm sorry to hear the sad tale of your long years of suffering, and I do completely understand your frustration with the treatment we get here in the UK.

My own story has not gone on as long as yours, under 2 years, but is similar in terms of trying just about everything and nothing working. I'm even allergic to the drops they use when they do eye exams. And yes, it's sickening to be sent off with a pat on the head and this "look" as if to say ...what's your problem, you've only got dry eyes.

You'll find a lot of tips and fantastic ideas on this site, I'm quite new myself and have already found lots of helpful advice.

Have you tried protective goggles to keep the moisture around your eyes, when you're working outside specially? I wear prescription glasses, and on the advice of someone here bought some fit-over goggles, which are foam lined so no wind or muck can get in your eye from the side even. They are great.

I've been able to go out in the worst wind without my eyes getting worse, and I even wear them indoors because of the dry air caused by central heating. They only cost £14.99 from an e-bay shop, I ordered a second pair yesterday and they came this morning! Let me know if you want the details.

The sleep goggles might help you as well, and also Dr Holly's drops. Check it all out.

best of luck, and see you around!

Eva

[stella]

Hi Rich -sorry to here about your frightful DE problems - Well you are now on the right website to get the answers to your individual problem!
You will be able to identify your particular symptoms with others here and try out some of the thigs that have helped them- already you have been introduced to moisture chambers for night time then as Eva saya you could see if they would help for outside - There is lots of info on moisture chambers and types of goggles and glasses on this site
You sound like you have never had the RIGHT ophthalmologist - one interested in dry eye (DE) or a "corneal "specialist interested in the tear film Michel Guillian is one mentioned here in London
Also send for Dr Latkany's "The dry eye remedy "-you get it from this site It tells you everything you need to know about DE
You need a correct diagnosis as to why you have DE - everybody is different ,and you need tested to see if you are diffeicient in tears or oils -the fact that you have had mebomian cysts indicates you have mebomian gland disfunction(MGD) and there are loads of things you can do to help this
You dont mention doing eyelid hygiene - thereis lots here about that too
You have only begun on a personal quest (sort of detective work) to find answers to your problem- We all greatly sympathise -especially those of us from UK - we all have to fight to get the treatment we need anyway -but with DE you have to fight even harder as nobody takes you seriously Ophthalmologists by and large consider it a minor problem since it is not sight-threatening They do not understand the pain and suffering we have
Anyway all the best - keep searching and you will get much more ease It is a crying shame you had to spend 40 years before you could even start to find answers Never mind - its certainly not too late

[Rich S.]

Ladies ,hi ,many thanks for your reply and will look into the things you said might help ,it seems i have a great deal of reading to do this weekend ,im afraid i cant read much tonight as ive just got home from work being outside all day and after a raw bitterly cold day here in the UK my eyes have had it totally,burning very very uncomfortable.

Lid hygiene is always mentioned by uk doctors all the time ,yep i agree very important but you just cant tell them on your appointment that you have metaculously cleaned them a few hours ago ,they just say you must try harder,well it seems the more i clean mine the worst they actually get and look even more raw than before they were cleaned. In the morning after waking they are very guey and sticky with the usual blepharitis type gunge.

About 8 or 9 yrs ago i went to the optician purely to have some tinted glasses made up and a good few pairs since as well i have to wear them all the time ,dont need them for sight at all well i didnt but because ive been wearing them all the time when going out that has made my eyesight worse, wearing glasses is a pain but i have to do it and it does help give me something to hide behind ,but yet again i dont need them ,just purely for my dry eye,aggh!!

I cant wait to read more on this site but it also makes me feel sad to read other peoples problems as i know for sure what they are going through.

Eva, please any details or maybe a link on the ebay shop for those goggles etc would be very gratefull.

Cheers all

Rich.

[eva b]

Rich, see you're on at the moment

where I got those goggles is on ebay - do a search oon "fit over safety glasses". The particular shop is called Custom Biker, www.custombiker.org
lady called Sue, ever so efficient - I ordered yesterday morning and they arrived today!

her ebay shop is called trikersue. I'll try and forward you a link via the personal message system, but can't guarantee results, i'm not that tech savvie!

Do you do warm compresses as well as lid cleaning? I find that the compresses are really soothing and comforting, and seem to loosen the clogged up meibomian fluid, soit can flow into the eye and stablise the tear film.

I'll try sending that link now. Don't hold your breath

[eva b]

trikersue's chopper shop...yes, honestly, that's what it;s called. I don't know how to do one of those fancy links, but I'm sure you'll be able to find it.

It seems many of us end up at Motor Cycle dealers for our goggles...no-one else seems to understand the need for such eye protection!

[Rojzen]

a possible additional direction

Wow, Rich. . .I'm very moved by your ordeal, and by the sheer stamina you've shown in the face of such prolonged suffering. . .I am only 10 years in to dry eye, and there have been many moments when I wanted to give up or just fade away. . .Thrilled you found us!

I second the guidance you've already gotten here about protective eyewear. . .IT is absolutely AMAZING how STEADILY WORN eyewear can improve quality of life. . .I say this as the person who articulated the menthol sensation, here, with which you resonate so strongly, by the way!

Anyway, I am a menthol sensation sufferer of the most intense kind, and I have recently found a solution that has completely altered the course of my symptoms and daily functioning. . .I wore airtight, customized moisture chamber glasses for nearly 10 years when, through this incredible web site, I learned about the eyedrops developed by Dr. Frank Holly. I switched to these drops, and within about 2 months, I was able to function without my prosthetic glasses. . .My tears started to stick to my eyes, too, for the first time in 10 years, according to measurements taken by my eye doc. . .

Please, Rich, surf over to the discussions with and by Dr. Frank Holly, here, and see the reviews of his products that appear here. . .We have several people (including me) who have written in detail about these products and how they have made a huge difference in both cornea condition and tear function. . .Some experience a little stinging with these drops, and others are not yet impressed, but some of us who have stuck with the drops are really surprised at how utterly different they are from anything else out there.. .

[Zarla]

hi Rich - good to see someone else from the Uk on the site. Have you tried the antibiotic ointment Cyclosporine? I thought it was prescription only but it's actually available now in Boots near the contact lenses solutions for £5 a bottle. It's the same as Restasis, which a lot of people on this site have found useful.

[Rich S.]

hi Rich - good to see someone else from the Uk on the site. Have you tried the antibiotic ointment Cyclosporine? I thought it was prescription only but it's actually available now in Boots near the contact lenses solutions for £5 a bottle. It's the same as Restasis, which a lot of people on this site have found useful.

Hi Zarla.

Still trawling through this wonderfull website,(little bits at a time cause of dry eye ,you know dont you) Is there somewhere in the UK we can get all this stuff ie Panoptx glasses and Dr Hollys drops etc etc. and all the rest or is it from US only??

Rich

[eva b]

Panoptx glasses

Hi Rich,
saw your question re these...I've asked, and there's nowhere so far as I know, HOWEVER there is an optometrist in Londoon, Dr Michel Guillon, who stocks the range of Wiley moisture chamber glasses, which are very similar. At least you could get to try them on.

Several of our members have been to him and he is said to be very good with dry eye people

[Rebecca Petris]

Some of the products in the shop are unique to the shop e.g. the drops, rice baggy, spa pad.

Tranquileyes you can get at eyeco.co.uk

I'm not sure about Ocusoft scrubs

Panoptx have no UK dealer

There are a few online retailers in the UK focusing on dry eye products now like Matheson's and one other (I forget) - I think there are links posted and if I remember where I'll pop them to the top.

[Rich S.]

Hi All.

So can we order drops ,glasses etc from the US,will they deliver to the UK?

Also these Dwelle drops etc are they called something else here in the UK?

Sorry to be a pain but even after 40 yrs of dry eye i still want things in a hurry,ha ha!!

One thing though because of this site ive started wearing a night time eye mask now for nearly a week now and i must say my eyes are just a tad better in the mornings now which is a real bonus and gets the day of to a much better start although they still go down hill by mid morning but hey its a start,this site is full of great info,wiush i found it years ago.

So any uk shops etc would be welcome or as i said above can i order from US?

Rich.

[eva b]

Rich,
you can order stuff from Rebecca and it's delivered very fast here - within 3-4 days I can highly recommend the service!

[woodart]

40 plus years also

Also 40 plus years dry eye and also in the building trade. Had to make many changes myself to survive. Fine work, forget it. Almost have to do work be feel. Although by a stroke of luck the last few years have seen improvement and less suffering. Finally got some stuff working for me. Flaxseed, restasis, foam lined safety glasses, tinted and untinted. I am about gettng back into some fine finish work again as sight improves. Had to stay with rough work as the eyes were so bad. I did have to hire a driver at one point as I could not even drive to the job. I just have to keep telling myself at least I still have sight. There are plenty of us out there. Just keep trying. There are some good ideas and things here that may or may not help, try them. Good luck.

[SallyP]

I think treatment in the UK is unbelievably bad. I've been going to the consultant for about 18 months now, and to be honest am no further forward. I've rather pathetically been in tears in his office on more than one occasion, but find them rather patronising. I don't blame you for feeling depressed. Luckily (at the moment), my eyes only get bad in the evening, predictably and almost to the minute, at about 7pm?? My biggest fear is that this will get earlier and earlier, because if I felt like I do at that time during the day, I certainly wouldn't be able to drive or work, or just function properly on a daily basis. Fingers crossed this doesn't happen. Like you, I'm still finding my way around the site, and am finding all sorts of interesting things out. I also considered going private, but will just get the same diagnosis, but with a more comfortable chair no doubt.