Living with dry eye

[Heather M]

I have been suffering from severe dry eye since 1994, there are days when I can tolerate it and others when I am incapacitated because of the pain. Sleep does not ease it, nor all the different drops and ointments I have tried. I have been to many specialists through the years and none have been able to help, as much as they tried. I couldn't even use Restasis as it made the pain worse, the plugs didn't work either. As any one who suffers from this knows, it impacts your life in so many ways, and it robs you of quality of life. I am reaching out for support from those who are also dealing with this horrible disease.

[lulu]

Heather
I know exactly where you are coming from. I am one of those who find no relief and in fact increasing difficulty with all the otc drops. I am now having problems with the ciclosporin restatis oinment too, where it previously helped. Plugs helped me for about two years and then bam. I still use the ointment but have tried to stop it but due to the friction on my lids, cannot get through the night without it. I am looking into importing a gel from the states as carbomer gels in the UK are a no go for me.
What causes your dry eye? Mine was thought to have been caused by sjogrens, although today I had a horrendous appt with my Rheumatologist(the worst yet really) who said she had decided I did not have it! Nothing had changed, my serology had always been negative, she had just decided that it was prob my age!!!! Umm guess that is what it was when the dry eye started approx 10 years ago then, in my thirties!!!! I have other hallmark auto immune probs which this stupid woman had not taken into account.
Its a difficult pain to tolerate and few understand the sheer misery it can unleash upon one. Your words struck a chord within me as it is all about getting through the day. At the moment I am having to break the day up into 15 minute blocks just to cope, its shocking really. I have had to stop visiting my friends and family and I simply am horrified at the way this had steam rollered through my life. I have lost my natural stoic outlook after so many years of suffering from not only this, but from the other assoc problems. But I have to say that Dry Eye certainly is a strong contender for driving me insane! Gosh I cant believe I sound so negative and generally try to offer more constructive help.
Is there anything at all that helps you in some small way? I am planning to see a nutrionalist next week but will have to skip most of the vits as they inflame my already "shot to bits" bladder, but am going to have to try to stick to the diet.Will keep you informed.
The only thing I have found that calms me down is to get in the car and drive just outside my little town to where I can see a "big sky" and look at the sunsets which are pretty magnificient on the coast. It helps me to feel less trapped by the pain and discomfort. Sitting in the bath over very hot water helps.......for the few minutes I am in the bath! Other than that things have become very limited. I asked my opthomologist if I could try out autologous serum and amazingly he agreed, rare in the uk. Thought he would turn me down again but he did not, his secretary has not organised it yet though. Plugs are a pain really. I find that the one remaining one scratches the bugger out of my eye so I am opting for cauterising on the 14th. Cancelled it last time. The other eye is scarred shut where the plug infected the duct and I cried blood!! There must be some relief around the corner, I have to think like this or else I feel that I might just give up.......
There is some very informative, in fact probably the most comprehensive information you are likely to find ANYWHERE on the net, on this site. PM me if you like.
Lulu

[Heather M]

Hi Lulu,
Many thanks for responding, it is so nice to be in touch with someone who understands the nightmare that is dry eye.
I live in Las Vegas now, but was born in Ipswich, England, I moved to the States years ago. I have been told living in the desert is the worst place to be for this condition, and I am sure that it doesn't help, however, it started when I was living in Northern Illinois, where it is very moist most of the year,it is no worse here than it was there, and since you are in the U.K. you know what I mean. I am glad I didn't get the cauterization done, my opthomologist mentioned it, but didn't recommend it, she also thinks Restasis isn't that good, I have to agree as I tried it twice for several months and had to stop as it felt like I was putting battery acid in my eyes. I also was tested for various diseases and all blood work came back fine, and the plugs were useless. I think the worst thing is getting your hopes up that something is going to work and then it doesn't. I was told that age and being female is a lot to do with it, but there is a lot of new research as it is becoming very widespread. I don't have the kind that makes you gush tears down your face, which a lot of people do, but I have got all the other symptoms, can't stand air con. smoke wind etc. As you said, the effect it has on your life is unbelievable, my husband doesn't understand when I just don't want to go out as they hurt so bad, and my favourite hobby (reading) has become nearly impossible. I expect you find being on the computer is a killer and I too have to limit my time doing things. Sometimes I get severe headaches from it, but no vision problems, my eyes look healthy through the various instruments, how I don't know, although I always fail the dryness test miserably. I'm not familiar with the serum you mentioned, glad to hear that you are going to be able to try it, hope it helps. Yes, I have found steam helps, but only briefly, and if I get a cold it is off the charts as I will feel like death warmed up.
I am so glad to have found this site and thanks again for getting in touch, hope to hear back from you.
Heather.

[jenny2008]

Heather i understand completely. i have sjogrens and severe MGD>. really bad. i am on SSD ... and 37. feel free to PM if you like. i just take it one day at a time... it is all we can do.

[littlemermaid]

his secretary has not organised it yet though

Lulu, There is absolutely no <bleep> reason why not. Especially while you are suffering like this. Maybe get the Blood Service coordinator number off her, or eg the triage nurse, or Haematology would know, so you/husband can press on? I wonder if you could approach from the other end - phone direct to the Blood Service coordinator asking what they need from the consultant to go ahead (say there's a secretarial backlog). I've even offered to type the bloody letter myself in the past but they just look sheepish and moan about people being off sick due to stress... Another approach might be to phone the Eye Clinic and ask to talk to a registrar for advice. It's difficult but very important to convey just how much in pain you are.

Here's the protocol, may not be current for your region http://www.nhsbt.nhs.uk/tissueservic...21_10_2008.pdf The more control you have and the more you take off admin's hands, the better, I find. We're all happier that way. I am furious for you about this. PM if you think I can help, Lulu.

Heather M, Lulu's going to try autologous serum for severe dry eye. It's spun from our own blood so completely compatible.

'Tears have antimicrobial, nourishing, mechanical, and optical properties. They contain components such as growth factors, fibronectin, and vitamins to support proliferation, migration, and differentiation of the corneal and conjunctival epithelium. A lack of these epitheliotrophic factors—for example, in dry eye, can result in severe ocular surface disorders such as persistent epithelial defects. Recently, the use of autologous serum in the form of eye drops has been reported as a new treatment for severe ocular surface disorders. Serum eye drops may be produced as an unpreserved blood preparation. They are by nature non-allergenic and their biomechanical and biochemical properties are similar to normal tears. In vitro cell culture experiments showed that corneal epithelial cell morphology and function are better maintained by serum than by pharmaceutical tear substitutes. Clinical cohort studies have reported its successful use for severe dry eyes and persistent epithelial defects.' Autologous serum eye drops for ocular surface disorders, Geerling et al. BrJOphth 2004

[Heather M]

I am so sorry to hear that Jenny, you are so young, fortunately for me I tested negative for any autoimmune disease, which I am grateful for. I was also surprised as I suffer from body aches and bone pain too, which seemed to go along with Sjogrens among others. I have tried various pain meds. including RX, but they do nothing for the eye pain, it wakes me up at night so sleep doesn't give me much relief. I was going to check in with the Mayo clinic to see if they have any new treatment, but haven't done so as I was thinking I am stuck with drops and ointment as my only hope. You are right, one day at a time, take care Jenny.

[Heather M]

Dear Little Mermaid,
The serum sounds promising, is it available here in the U.S. do you know ? If so I bet it is very expensive. Maybe I should come home to the U.K. Like everyone else that suffers from this, I would do anything to get relief. Thanks for the information, much appreciated.
Heather,
Las Vegas,
Nevada.

[jenny2008]

thanks Heather.. you are sweet.. keep us posted. and never give up.. I am trying a a radical diet by a naturopath-day 1..wow it will be hard but i am hoping it can bring some of this inflammationdown. who knows.

[lulu]

Little Mermaid
Thanks for the link, more hassle before I even get accepted! Have worried myseld sick about whether or not I will pass the health screen anyway. I hope that I will not have to jump through hoops for this. I contacted opthamology and was told that the day I was seen by the Dr, the secretary went on two weeks leave and is not back until 31st! I rang again and requested I speak to another secretary. A very kind and previously helpfull women who looks after another Dr, checked my notes and said that the letter was probably on the dictation machine but that my notes would likely be the first to be processed next week as they are first in the tray. I asked if she or somebody else could kindly help but unfortunately she said that although she realised I was in pain, it would not go down too well if she dropped the really urgent stuff to intervene with another doctors caseload.
I will wait until Tuesday morning and then we will call her. I have an operation with that hospital next week so if I have not got anywhere I will prob try and find the secretaries office, if someone will tell me where it is, and pay a visit, before I am knocked out for my procedure. I guess the procedure of it being refferred via the BT consultant is a rubber stamping exercise backed up for funding. Thanks for your offer of help by the way.
Lulu x

[irish eyes]

Lulu

It seemed like an eternity when my serum request was being sorted out and I think it was the state of not knowing that caused me the most anxiety.

The discomfort had been severe for quite some time anyway but the stress of worrying and feeling frightened to pick up the phone to ask anyone about the 'progress' of the application made it worse. I made phone calls and would get very emotional if the person had a brusque tone because I didn't have the energy or the appetite for an argument. Knowing that there were layers of bureaucracy to get through made it feel very distant and impersonal.

Stay strong.

[PotatoCakes]

Heather -
Yes, you can get serum drops here in the U.S. They have been a life saver for me.
Here's a thread re: labs: http://www.dryeyezone.com/talk/showt...ighlight=serum
Nothing is listed in NV but that doesn't mean there isn't a source there. Otherwise, it looks like the closest source for you would be CA or CO.

A Google search revealed something called The Apothecary Shops can make them. I think they are in AZ, based on what I'm reading and possibly in NV too.

If you have a university or research hospital in your area, it's worth a phone call to see if they have a source too.

[Heather M]

Thank you so much for the information, I will definitely be checking this out, CA or AZ are close. Thanks again.