Don’t think I can carry on living with dry eye syndrome anymore

[Bethnalgreenbeth]

Been awake since 5am
eyes been running my life

Sea buckthorn capsules are meant to be good (apologies if you've tried them)

What's your diet like? Lots of oily fish is good for this. I have dry eye and was told this by my optician. I eat two lots of oily fish a week and take a daily cod liver capsule and it's helped loads.

OP, I have been there. It was ruining my life. I couldn't sleep, couldn't drive, couldn't have the heating on, it was unbearable.
I was under an ophthalmologist and after about 1-2 years they got it under control. I hate having so many drops but I am no longer in pain and can sleep at night.
I use:
a heated eye mask every morning
Clinitas drops every 30-60 minutes
Hylo night before bed
Ikervis drops 2x per day
I have punctual plugs in
I have steroid eye drops for flare ups when my eyes go red.

If you have to wear a mask for work or if you wear one out and about, they channel warm air (breath) into your eyes. Using tape over the nose bridge helps hugely.
If you have had Covid, it can cause long term inflammation too.
As pp have said it could be Sjogrens.

What you need to do is ask for a referral to the ophthalmology dept at a hospital. You need referral to a corneal specialist, or failing that, oculoplastics. If your GP won't do it, you can ask your optician who can write to the GP requesting a referral.
Dry eye is so common that GPs can be blasé about it but it can be horrendous. Don't take no for an answer, you need that referral.

I really feel for you OP - I went through the same for years and tried everything, medication, eye wash, heated mask, antibiotics you name it, it always came back. I felt so ill and exhausted with it.

Funny enough I went on to develop an autoimmune disease, never had a positive ana test though, not until much later on in my progression. You need to be referred to Rheumatology.

I had a dry eye for about 2 years.. I started on hrt and gradually it got less and less of a problem.. until now when it is absolutely fine.. such a relief.

Beth this might be relevant. I listened to a radio talk by a menopause specialist yesterday.. Every organ of the body is affected by oestrogen and she mentioned eyes.When I was menopausal I got dry eyes when I stopped hrt. I had no idea that lack of oestrogen could be the cause. Now hrt is natural plant based so no issues with safety. Might be relevant for you.

I wouldn't think so. I'm severely neutropenic and no issues

I just googled and it is a lesser known symptom of lack of oestrogen.

HRT - dry eyes was the first sign of peri menopause for me, a year before I had any other complaints. It was 90% improved within a month of starting oestrogen replacement.

Definitely complain about the GP, but also ask your optician to write to the GP for a referral. That's how I got mine (I'm under a consultant opthalmologist).
They should send you to a rheumatologist first to rule out autoimmune things like Sjogren's.
I know you say it's worst at night, but in case you want to try them, in the day I use Hylo Forte drops (preservative free), which do help a bit. They're expensive to buy so ask for them on prescription. My opthalmologist prescribes mine.

Interesting about the hormonal thing. When mine started I immediately thought maybe it was an oestrogen issue – I wasn't perimenopausal, but I am naturally very slim with low body fat, and I understand that slimmer women often have lower oestrogen levels. For some reason, though, both my GP and the opthalmologist just look blank whenever I raise the possibility that it might be hormonal and maybe I could get tested. I'm thinking about going private for some tests, although I don't really know who I'd approach.

Have you ever had eye plugs in your tear ducts? Only thing has helped mine, had to pay private and they typically last anywhere from 6 months to a year for me but I play contact sport. They usually approx 120 a go I get both my lower ducts blocked.

Mine aren't as bad as yours but the optician told me to take eye drops pre-emptively. He said not to use them at the same time each day but that you can't over use eye drops (I guess he meant the standard, non-medicated ones).

I've also started taking HYALURONIC ACID CAPSULES which is meant to help. I've only been taking them a few days so it's too early to comment for me but the evidence seems good so fingers crossed. Apparently you need the high dose. victoriahealth.com/hyaluronic-acid-capsules-high-strength/

I ended up in A&E with badly torn corneas and I got immediately referred to the ophthalmologist who worked wonders.

I got punctal plugs on the NHS through my opthalmologist, who puts them in and checks them. Why did you have to go private? That seems expensive.

I had dry eye when I had to wear a surgical contact lens for a bad corneal abrasion. I found gently taping my eyelid down with micropore tape at night helped because it stopped the eyelid slightly opening in my sleep which was exacerbating the dryness. Much sympathy. It was only temporary for me but so rotten x

I have dry eye .Saw the Eye Surgeon he gave me Hycosan (In the red box) and also Hycosan ointment to apply at night (can get off Amazon) Also told to drink lots and maybe not have the heating too high .Also steamy baths /showers, and a warm cotton wool pad (the sort you remove make up with) in a little warm water and massage eyelid.Maybe see if an Optician can help by referring you on .I find its a game of ping pong between Doc and Specsavers!

So I need to push for an ophthalmologist or rhematolagist referral or both ?

I will fight for this
i need to for my kids

i have read that perimenopause can have an effect on this but that her can make it worse 😰
so I’m so scared of anything that can make it worse

Still having periods
but I do have perimenopause symptoms such as occasionally night sweats

and I don’t sleep well and I’m stressed and not myself but that mainly due to my eyes and the pain

The waiting list was too long and i needed seen asap as couldn’t wear contacts due to the dryness for my sport.

Maybe ask your GP specifically for a rheumatologist referral. Then once/if autoimmune issues are ruled out, ask your optician to request referral to an ophthalmologist?

Came to say this. Heated eye mask therapy changed my life (dramatic but was a revelation)

Oh, that's tough. I guess I waited a while to see the NHS ophthalmologist, but only the 'usual' sort of waiting list time. I appreciate that if you really need to wear contacts you'd find it more urgent.

Been using Hycosan
i just honestly can’t cope any more

Heated eye mask just seems to add to inflammation
it doesn’release tears or oils just feels like my body isn’t making tears
or enough tears

Didn’t know you can buy HYALURONIC ACID CAPSULES
mom already eatting a lot of oily fish and taking omega 3 supplements and multi vitamins

I find omega 7 capsules brilliant. They are great for all mucus membranes