Very depressed it's affecting my life

[epicjinx]

Hi all, I have severe dry eyes wishing I didn't but hey hoo. I live in the Scotland- uk, all I'm getting is drops this gels that, my mucus is OK due to supplements my water is gone, my tbut is 6 in left and 5 in right. I'm so depressed I wake up and cry and cry. I'm so tired of not getting help, I have somewhere in 3 weeks that offer technology but I really need antiflammatory treatment. I know this because I tried powerful antiflammatory medication by theralife which worked then stopped, I dunno why. I'm so depressed I feel like killing myself, and I feel as if I did this to myself by computer use I think or hormones I can't remember started in 2014. I have a few weeks to go seeing an eye doc at a dry eye centre. I dunno what to do for the moment drops do not do anything. I'm using bio tears and fish oil. I don't know what strong antiflammatory stuff to try. I'm soooo desperate for relief, as I write this I'm crying. I know this place will help me, it has new technology. I know in London they supply ikervis which is what I'm after but being at college and money I'm already willing to pay 120 for this appointment because it has up to date technology. I have mgd and ocular allergies I take an antihistamine and do warm compresses and drops even thought they do not help. I'm only 19 had this very end of 2014 when I was 17, I didn't think this would happen to me. It's effecting my college I'm so depressed yet everyone thinks I'm ok I bet. I seriously need help, I know this place will help but I'm scared to know how much? My optremist was no help basically told me I can't get cyclosporine in the uk... Even thought it says it's available from nhs Scotland, and yet dry eye centre on London says it's not available and the only place you can get it is private places like there. I really do not know what to do currently, I'm sleeping all day because of it, I wish those tablets still worked I got some relief. Please help I'm desperate, I woke up in pain the other day only to apply drops I'm using boots A&E vitamins even thought it doesn't work. Warm compresses seem to feel ok but I don't know if it's made my inflammation go out of whack. :/ I want to try ikervis or serum drops or even get salivary gland transplant because I'm soooo desperate for relief. And I'm not waiting 8 months or more for maybe relief from oculeve or lifiegrast if they ever come over here at all. I feel like I have no options even thought every site says I do... :/ sorry I'm quite desperate right now. I'm just worried because they have inflammdry but if it picks it up I do not know what they will do about it. Sorry... Help please? :/

[littlemermaid]

Epicjinx, you are going to this optometrist http://www.peterivins.co.uk/shop_eye...c?next=&id=232 and it's £120? Maybe check whether they are Prescribing Optometrists, otherwise you need an Ophthalmologist for prescriptions. They say they do a standard NHS dry eye exam too. Take a memory stick and ask them to put the images on it, since you have paid for them. Best to keep your own records. And useful to show docs.

Ikervis is definitely available on NHS prescription in Scotland https://www.scottishmedicines.org.uk...sporin_Ikervis Scottish people here are using it. A lady in Wales told me when her NHS hospital pharmacy had trouble ordering it, she got it in Tesco Pharmacy, no problem. Sometimes it depends whether the Pharmacy is tied to certain suppliers. Anyone qualified can prescribe it, either Private or NHS. Optometrists and GPs could easily check this online.

Someone's put you on antihistamines, which can have dry eye side effects - do you actually have allergy? Surprised they suggested baby shampoo as a detergent to clean your eyelid margins. Most people here use a product like Ocusoft or boiled water after their warm compress.

Your eyes must be very sensitive. We use unperfumed sensitive products, especially laundry liquid. Have you got your study bedroom dust and allergy free? Maybe check humidity, especially if you are studying or sleeping in dry heat.

You're noticing it's related to your periods. Do you have any skin trouble? Have you tried a 'clean' diet?

I would ask the Optometrist to recommend an NHS cornea specialist Ophthalmologist at the teaching hospital too. You've been suffering too long now without diagnosis and treatment.

I would keep a diary of symptoms and treatment, to give docs a speedy overview. Also they will realise the impact on your quality of life. Eg we used the format: date, doc, symptoms, observations, prescription, symptoms.

Can you see a Student Counsellor at the University? Important. You really need someone on your side to call in and see whenever things feel bleak. And they can refer if needed. GP is supposed to refer NHS for counselling but service can be patchy.

I would call this 'eye inflammation' rather than 'dry eye'. Then people are more shocked and sympathetic.

Your GP may supply any recommended eyedrops on NHS (search '[your region] NHS formulary eye' for the list - England supplies Hyloforte, for example). If you have eye allergy, you have 'proven sensitivity to preservatives'.

If there are any waiting lists mentioned, get on them! Then it's possible to keep phoning for cancellation appointments. Welcome to PM if you need a chat (my daughter is 19 at Uni with this). We really hope this appointment gives you good treatment and gets your eyes comfortable.

I would go back to A&E Eye Clinic at the teaching hospital with this pain. Go at a quieter time like early morning. They must also refer you to Ophthalmology.

You can also ask this Optometry business for an emergency NHS appointment.

If you need help accessing hospital treatment, try Patient Services (Patient & Liaison Service) on the large teaching hospital website and tell them what's happening. Pain, red eye, or vision disturbance are the criteria to be seen urgently.

[epicjinx]

Hi littlemermaid I'm apprentice seeing an opthmologist apparently for dry eyes for about an hour, my optremist at spec savers shot me down on that even thought I know it's avalible, the cost is because it isn't covered on nhs the dry eye centre, I'm waiting for an appointment at nhs which will take months. I didn't know tesco could do that? My optremist just told me cyclosporine isn't here and I know it is. I'm struggling to get my hands on it. I was hoping at that dry eye centre that they might prescribe me it. I really need it, my eyes are getting Redder and drier each day and it's knocking my confidence down I'm so glad you told me that! I thought only through the nhs, I'm not sure how I will go about getting it. I asked santen uk if it was for dry eyes but couldn't offer me much. Yes my oil glands have bumps on them when she checked them. My bedroom is okay Windows usually open the house is quite dusty, a dog and several degus and a Hampster. I did write down things ages ago what helped and what didn't. I think I'll ask at my college because I'm really needing it. I've already been to places like that before this started due to already having depression due to different stuff. My optremist doesn't give me any of that, no options I checked on the spec savers website for dry eye. I laughed nearly. They think the lacrimal gland just shuts down and that's it. Grrr, feeling like I know more than them! I got allergy eye drops but they contain BAK so I can't use them. I just I know what's causing it but I need to try ikervis to know if it's right for me or not. Thank you so much for your advice, I've seen you comment on here, my mum thinks this is eye strain, it's annoying lol I wish she understood like you do. I wonder if you could answer me if that person you speak of had a prescription as to how she got it? Or did she just ask about it. I'm so relieved to know there are other suppliers. Your comment helps a lot!

[epicjinx]

Oh sorry forgot the diet bit, I try my best to choose healthy things but still eat crisps and chocolate. I found an alternative to coffee thought, mind you I do drink herbal teas and such just to keep me calm. This has really flipped my life up side down! I dunno why my eyes feel drier I know hormones is a problem but I can't remember if hormones caused or too much computer use. All I know is: I want relief of this before I get any corneal abrasions/scratches. I really hate drops they do nothing for me. Also images are you referring to anything that refers to my eyes sorry a little confused at that. Apparently optremist aren't allowed to prescribe is because they are not qualified? I forget where I read that, but I did see it on some website. If they can then I'm so annoyed I'm suffering because a lack of help! But I just hope this place will be good im counting days like Christmas lol

[littlemermaid]

Hi, I can reply more later, but investigate what the Optometrist actually provides.

Keep a personal file with copies of all your medical treatments. This helps the hospital Eye Clinic doctors to review your case and treat you better (they won't have your GP records). You can ask your GP for a print-out of any prescriptions you've had through the teenage years for anxiety and depression, or hormones like a mini-pill for difficult periods, or example. Some of those might have dry eye side effects. Has your GP done standard tests for eg thyroid etc? GPs are asked to manage eyes for 3m only, after that, it has to be hospital Ophthalmology.

You could ask the GP for referral to the teaching hospital Eye Clinic Optometry department for monitoring while you are waiting for Ophthalmology consultant appointment.

Maybe do a search here 'Scotland' to find people from your region, then PM to ask which Ophthalmologist has helped them. Then GP can refer direct.

You are a 'vulnerable adult' and it's important you get student support help from your College/Uni.

[epicjinx]

I'm hoping his advice will be more helpful than what I got, I know from research that optremist can only advise about things where as opthmologist can prescribe more useful stuff, gps don't seem useful I went to one in Jan of last year no help. It was only my optremist that referred me I wish I got refered earlier than later! Hm, never thought of that. I have seen places like Glasgow uni and others. Thank you again for your reply, I will need to do that. But I'm sure I got told it was an hour with an opthmologist, if not I'm Gonna be annoyed. When I was on the tablets I never got dry eyes not once until 2014 I was off all meds aswell. Gp did that test perfectly fine apparently. Although my white blood cells count was high.

[littlemermaid]

Good point about trying University Eye Clinics https://www.gcu.ac.uk/eyeclinic/specialists/ although I guess they would have to refer to hospital Ophthalmology for treatment. This link explains the difference in UK between Dispensing Optician, Optometrist, Orthoptist, and Ophthalmologist (doctor of medicine, normally surgeon). There is a new further qualification Prescribing Optometrist (but not qualified in medical science). We also saw a Specialist Ophthalmology doctor (general medicine, further qualified in eyes) in a hospital clinic. There are specialist GPs with further qualifications in eyes too but those are very hard to find.

Unfortunately there is no regulation yet on treatment standards for high street Optometrists. The best place for us is a large regional teaching hospital Eye Clinic with up-to-date cornea and anterior segment specialist Ophthalmology consultants. Once we are with a consultant, we are 'their patient', got ongoing medical record, and can go back to their team for more help. High street Optometrists are finding co-care very difficult because hospital consultants are not communicating with them. Still good to have a nice Optometrist to talk to.

You must always get a copy letter from the clinician, and ask for a copy of all tests, for your file. By 'images' I mean any pictures or scans of your eyes they take.

Have you tried 'onion goggles' at home? Might help if it's allergy or computer use. Why is your mum worried about eye strain? Does she think you are gaming/social media without breaks?

Let us know what happens next. We're all worried about you now.

'A Dispensing Optician: a professional involved with the fitting, analysing and dispensing of prescribed spectacles.
An Optometrist: a primary eye specialist who is involved in both prescribing spectacles and making sure the eyes are healthy.
An Orthoptist: a specialist who deals with patients with specific problems with the muscles in their eyes.
An Ophthalmologist: a secondary specialist who is a medical doctor who has chosen to specialise in treating diseases of the eye.'

Just 'cos you mentioned salivary gland transplant (bit drastic for you), here's wonderful recent progress in gene therapy for Sjogrens sufferers, for interest - https://www.aop.org.uk/ot/science-an...form=hootsuite 'Tears of Joy: New treatment offers hope for millions of Sjogren’s syndrome patients worldwide' 03 May 2016 by Olivia Wannan, Optometry Today ('Aquaporin gene therapy corrects Sjögren's syndrome phenotype in mice', Lai, Zhennan; Yin, Hongen; Cabrera-Pérez, Javier; Guimaro, Maria C; Afione, Sandra et al., 2016, Proceedings of the National Academy of Sciences of the United States of America)

[unicorn]

Just want to add quickly, yes it is Peter Ivins epicjinx is seeing. I've been going there for four years and they're brilliant. Peter is able to prescribe meds, they would most likely to want to refer you to consultant though for opinion on Ikervis. I am confident you will be well looked after there, they've been a godsend to me. Good luck. Also there is a dry eye clinic - free - at glasgow Caledonian uni optometry dept, maybe worth a shot although assessment more thorough at Peter Ivins and they can prescribe meds/refer to hospital as needed.

[unicorn]

Epicjinx, if you are a Facebook user, have a look for the group "Blepharatis Advice and Support Centre", a very active UK-based group with lots of younger members too, might be of help to you in finding the right support?

[epicjinx]

Thank you again for your help, yep that's the site I noticed to know the difference, okay, that sounds like a good idea to do. I know it is drastic but I'm considering if nothing works what else can I do? I'm sick of waking up with very dry eyes that produce no tears due to inflammation :/ very interesting to see, I know about many treatments but not this, yep she does probably. I had problems with my ears as a baby and now eyes and she thinks it's connected but I don't. Unicorn- you mention consultant does this mean they aren't able to help me with this? As it is one thing I was desp, to get. If I do get referred I hope it's quick it's annoying mainly with this, I hope they can help as I really need more guidance and help with antiflammatory treatment mainly. I will look into that aswell. It's just in very desperate right now and think I may benefit from ikervis which is why I'm hoping they can prescribe or at least help me with it or something more helpful. I'm guessing this wasn't an option for you unicorn? Or maybe yours isn't as bad as mine I dunno. All I know is I want relief and soon, waiting and using drops is getting me no where. Thank you both for your help.

[epicjinx]

Oh also little mermaid I haven't tried them. I have no idea what they are.

[littlemermaid]

Onion goggles https://www.amazon.co.uk/s/ref=nb_sb...=Onion+goggles
Moisture chamber glasses, sports wraparound sunglasses https://www.eyewear-accessories.co.u...hamber-glasses

[epicjinx]

Ah, okay I get the idea of it. Thanks for that I'll look into it.

[littlemermaid]

When my daughter had inflammation flareups, we had to use short courses of FML (steroid), sometimes from A&E Eye Clinic. It's dangerous that you have eye pain all day.

You need to inform your Academic Tutor at College/University what's happening with your health, especially if you have exams. Also see your Pastoral Tutor. Also see Student Services for counselling. Sounds like you have a Student Loan so don't want to have a problem with Uni regulations, and they will have the solutions. Also get all the help and support available there, so you are not so alone struggling with this.

[epicjinx]

My boyfriend helps alot, today i asked him to phone that place unicorn and yourself mentioned to ask about it. I've never gotten any steriod eye drops or that, ive not been to an A&E clinic either, I wish i got them i know they have risks too. I have it only when waking up, ive found vitamin A and fish oil helps reduce the pain alot i guess... im just sick of red/dry eyes at this age. I hope at this place they will give me something useful im so tired of it, my eyes have been semi ok today. Also, is it okay if i ask about that woman you mentioned did she get a prescription for that or did she just ask about it? Sorry, im hoping i can get it at this place, i havent been offered anything anti-flammtory and have to do my own research about this. It's just i dont want to site around whilst this gets worse and worse already its so bad so i need it to get better soon, or i might end up pulling out of my HND course because i do not think i will be able to cope with it.