[UK] In agonising pain, NHS doctors solution: painkillers & sleeping tablets

[irish eyes]

Octoberends

I was back & forward for a lot longer than 4 months so try not to worry about damage being done.

From the sounds of things, the hospital tried to rule out possible conditions at the back of your eyes - and it's good that they found nothing sinister.

Have you been to see anyone at Moorfields yet?

[Guest]

xxxxxxxxxx

[irish eyes]

It's not that easy to say because my case was on the severe end of the spectrum. I still have some bad days; of late my eyelashes have been extremely inflamed and sore so I've had to increase use of steroids.

Doctors have never (ever) quibbled with me regarding use of antibiotics. Without exception, all said I should use them. I started out on a high dose and now I'm on what is referred to as maintenance dose. It's minocycline rather than doxycycline but I took doxy for years.

I don't think my case was like yours in the sense you might mean; I was suffering from episodes of iritis (inflammation of the iris - back of the eye) and the doctors were more attentive to that. They had to be because it can threaten sight. I had a few very bad attacks of iritis when the sight in my right eye was at risk so doctors concentrated on that rather than the symptoms of dry eye. I assumed that there must be some connection between the two conditions but I don't think there is; I've just been unlucky. But again, I'm lucky that I didn't lose the sight in my right eye with the iritis episodes.

Good luck at Morfileds tomorrow. I've no experience of any of the doctors there.

[Guest]

xxxxxxxxxx

[irish eyes]

No, it isn't rosacea - I've seen dermatologists as well as `eye lid' experts and put this question to them.

The cause of iritis is often not known and some people have it as a one off occurrence. (Sadly, I didn't). Iritis (or uveitis) happens behind the eye rather than the surface. In some cases, medical conditions contribute to the inflammation - ankylosing spondylitis, reheumatoid arthritis and TB can be factors.

[Guest]

xxxxxxxxxx

[Michael2]

octoberends, I wanted to add something although I didnt read the other posts after your initial post...

I was kinda like you I imagine, totally awesome life and then bam. Life didnt seem to exist anymore, there was no day, no night, just pain. I had never ever personally seen anyone in a situation like this. it was unreal

I want to let you know if you have dry eyes/ meibomitis it is possible to get back to normal. If you DO have this and your symptoms are so severe, I recommend IPL, check it out in different posts...it saved my life. I am not back to normal yet, I still have some ways to go.

Last november, I went to the top opthal. in LA, and he put in the strongest numbest drops and it did nothing. At that point, I couldnt imagine what a real eye even felt like, I had forgotten. A year later, I type now with my eyes only mildy uncomfortable. To put it in perspective, Im still severely depressed (alot from post traumatic stress), and thats with just kinda painful eyes, because your eyes are your whole world and painful eyes perverts your gift of vision. This condition is the essence of evil. Im still determined to live with normal eyes and I hope you will achieve the same!

[irish eyes]

Octoberends

Pleased to see that you had a sympathetic response from the ophthalmologist. I agree with her on the issue of eyelid massage; I can't really see what good it does just to move finger across the lid as outlined on the Ageing Eye website.

Presumably you will have a follow up appointment with her in 3 months because you are using FML?

Michael

Re; your comment "..........because your eyes are your whole world......"

When my children were young, I could tell more about them from the look in their eyes than anything they said.

Take care.

[Michael2]

one more thing...

when I was in that much pain, I was told by every doctor that there was no way dry eyes and meibomitis could cause that much pain. i was even told there was something wrong in my head, i.e. a psychosomatic disorder because I had some trauma as a teenager. knowing that was not true, i pushed on. and it turns out that MGD/ dry eyes can cause that much pain. i wonder with my family every day why such a severe thing can be so poo-poo-ed

[irish eyes]

Wrong in the head?

Michael

That's certainly been my experience. It baffles me that this kind of thing is still said as it ultimately leads to distrust of professionals and contributes to a sense of personal hopelessness.

Would you believe that one consultant suggested that my complaints were more to do with wanting attention - and he asked if everything was OK between me and `hubby' (husband). I didn't ask him what he had in mind because I'm too polite.

When I sought help from a homoeopath, I was accused of holding something back from the past and I really should get it off `my chest' once and for all. A good cry would be a start. She thought that this was at the root of all my eye problems. (I paid good money for this `advice).

I could go on but I won't......

[josephine08753]

Good as gets

I am a 23 year old female ex-student in London. I decided to post my story here as I am in desperate need of advice. Shouldn't even be on a computer right now but I just don't know where else to turn.

11 weeks ago I came off the birth control pill (Yasmin) because I was experiencing pain and blurry vision in one eye. Once I stopped taking it the pain got significantly worse.

Opthamologists insisted that the pain was caused by headaches and prescribed me all sorts of strong painkillers and sleeping tablets (which I've been taking continuously for 9 weeks, plus medication to prevent stomach ulcers).

I was forced to drop out of uni, quit my job and lost my social life. I moved back in with my parents. I am unable to do anything the pain is so excruciating.

Anesthetic drops numbed the pain so the Dr then decided it must be blepharitis. I didn't think I had bleph (my eyelids looked fine) but as soon as I started the warm compresses and eyedrops some of the pain was relieved, and my eyelid began to swell and redden. Then I developed many little cysts on my lid margin.

My GP told me to go straight to A&E. I saw an opthamologist there who said that I couldn't have blepharitis because the pain I'm describing is too severe. He said my eye looked healthy (apart from 'eyelid irritation'), and that I could visit every opthamologist in the country and they would tell me the same thing. He said I should be happy that I don't have something serious. I tried explaining to him how this is affecting me - he said that I should just take the painkillers and get on with my life. I wish it was that easy.

I just don't know what to do anymore. I'm sat here crying in pain every day. The painkillers don't even do much, they just make me feel drowsy. It's like I'm not 'living' anymore, I'm just suffering, I can't even think straight from the drugs, it's a nightmare. I'm beginning to question whether it's even worth it. Sometimes it becomes so tempting just to OD on the meds and end the suffering for good.

My parents are worried and want to book me in with a private opthamologist . Whilst I'm willing to try anything at this point, I don't want them to spend their money only for me to be told the same thing.

Hi London Dry eye Suffer, You should take pain meds, apply artificial tears - I use Genteal gel this stays on eyes for a while longer than drops, PM refresh at night to reduce eye lids from sticking to eye balls!! Plus wear PROTECTIVE eye glasses that are able to isolate eye from atmosphere I wear Moisture chamber eye glasses & goggles, a US physician has invented them- Dr Hart of Woodbury Optical 1-516-681-3937, these SAVED my life- suicide is a known end result of persons whom suffer like us- without applying all available to survive also put a hot humidifier in your room or anywhere you will be , reduce dust & fumes as much as possible & covered by insurance although it an over the counter RX IF your physician writes an rx for these.

[Guest]

xxxxxxxxxx

[Michael2]

octoberends-

now that you find yourself in this situation, you cant blame yourself or anyone else for the past. in my case, my DE went from nothing to severe severe in about a week, so Im not sure what any doc could have done about it. all you can do is move forward, get the best diagnosis you can, and treat the underlying problem. medical professionals are not perfect and if they cant see something/ havent heard of this type of situation, they may assume theres something wrong with your head--I'll add to that that they dont know you, and they havent seen you as the person you were beforehand, so please dont let it get to you

also, now youve learned your body isnt perfect- in the future, when you see something coming, you may pay attention to more of the signs. i started noticing very low key signs of tinnitus and i immediately went after it aggressively, whereas in the past I might have let it slide with the notion 'that could never happen to me'

irish- before i fell 'ill,' I read about the instances you speak about, in psychology class. we would learn about health professionals telling people they were crazy for bogus reasons, such as that their husbands weren't taking them seriously. or my favorite one is, 'you're so pretty, you should stop looking for so much attention.' of course, we would talk in Discussion class about this, and we would all agree that this didnt happen anymore in the 21st century (the books were written in the 1970s). i discovered firsthand that isnt true.

theres this movie called Changeling that i really like...it shows you, dont let anyone call you crazy, they are not in your shoes

[irish eyes]

I've noticed a lot of the chronic sufferers on forums got a late diagnosis. I am sure if this was diagnosed and treated from day 1 of symptoms, a lot of people would not be in this position.

Hi again Octoberends

I think that doctors are nonchalant because these symptoms can ease off or completely disappear in many cases - so perhaps they can be forgiven for that. It angers me that this attitude persists when a person's symptoms are prolonged and start to impact adversely on routine tasks and activities.

I'd always had problems with dryish eyes - I couldn't wear contact lenses for example - but the discomfort was NOTHING compared to the sudden onset of stinging and burning that didn't abate. Language was inadequate when trying to describe how miserable and disabling it was. This went on for a long time.

To add insult to injury, the head of the eye department eventually wrote to my GP to `sign me off' his register; apparently there was nothing more that could be done that already hadn't been tried - besides which my eyes weren't as bad as others he had seen in the clinic etc etc.... I had already seen several mainstream and complementary medics but his letter made me think that it was a waste of time going round trying to get an answer. It was because I left the `loop' that the problems set in. It baffles me how this same consultant works part time in the private clinic I now attend and he has a reputation for being passionate about dry eye .

Michael

I know that film - and yes it did evoke feelings of shared emotion! I wonder if doctors think that if they say this kind of thing often enough, people will start to believe them.

A work colleague suggested a student came to see me for a chat because she had problems with her eyes and was concerned about how it might affect her career.

Our experiences sounded similar but I was astounded at how little had changed over the years. The top consultant (who I knew very well) had told her that he really couldn't understand why she was making such a fuss. And she had such pretty eyes as well. I wonder if she's still being told that?

[lizibet]

Hi Octoberends

I have been reading your posts with great interest, I am 2 and half years post lasik done at Moorfields and have been back and forth, back and forth too many times to list. Still no further on, my GP is patient but basically she doesn't know what to do. Was last with my consultant beg of Sept and came away no wiser, just same old same old. Wondered who you saw there and whether it would be helpful for me to see them. Also what is FML? I am on doxy, have been for nearly all this time. I sometimes think I could cope with the burning and stinging, but it is days like today when the red hot needle stabbing sensation comes, and I literally don't know what to do with myself. Going to GP Wed to see if she can suggest anything else, feel in despair.

Really glad you seem to getting somewhere, if only I could get a diagnosis it would help, but no-one seems able to commit themselves or agree what the problem is.

thanks in advance for your reply.

Liz PM me if you want to.