Most awful NHS appointment ever

[waterbee]

I agree with Liz, it's good to rule out these things. I actually saw one this week and they did blood tests and even an xray to rule out a few things (I've had joint issues around the time my dry eye started, well a few months after) My blood tests came back normal but I was unconvinced it wasn'tt Sjogrens until I saw an a Rheumatologist who told me I can tell you with out doubt it's not that. What was it then?

tests showed it was weakening of my core stomach muscles and back due to a hard pregnancy (back to back baby) and it had been left untreated and was effecting my whole body and My lower side was in a constant cramp and it had even effected my circulation and jaw......i never imagined it wasn't related to my dry eyes. With physical therapy I should be able to improve my life quite a bit in time, I'm so glad I went and I have a chance to reverse the physical effects.

As for my eyes? He was certainly upbeat about them, seemed to think they would fully recover when I stopped my medication which he said made dry eye happened, I all ready stopped it for three weeks when this all started I replied and besides I have been on this medication for four years and it never effected me? And I can't sleep without it so I feel much worse....Oh give it a while he said, it will take time. I'm pretty sure dry eye never goes away..not 100%, maybe 70% with maintains....I said looking at him some what unconvinced...he just nodded calmly and said you must gets lots of sleep and stop taking that medication and be patient.
If he was first medical professionals to have told me that I would be really excited, but I've lost a bit of faith in the medical world regarding dry eye...but it's nice that I left with hope for my eyes too..
Even if it was just a little.

[PeterBelgian]

I totally agree with your doctor Waterbee , i think there is a link between depression and dry eyes , at least when problems began , then the inflammation take all the place. Can you show us those studies?

[waterbee]

Hi all,
I just wanted to give those who are yet to see an nhs optometrist that they are not all bad, I finally saw one last month after nine months waiting (I've sccen several private optometrists since but went hoping I could get my meds on the nhs) and couldn't actually cure me of cause but I knew that , but told me he believes there is a strong link between dry eye and stress and he's scene clients make a 90 percent recovery when they have dealt with there anxiety and depression and given it some time to settle after they've reach this point. He actually said there was a studie out just this year proving a link to stress in the brain and the tear production, gave me some hope and he was a nice guy. It a was just good to meet someone open minded.
Totally agree about useless health care and testing here though, some times I think about moving to America just so I can try the medicine and professionals they have there, which is so advanced compared to this backward country! . Ironically its actually a place In northern island I believe in the that makes the resis! Yet-----we can't get it, in the UK.

[savino]

All I can suggest to anyone is do your own research, and don't take no for an answer. When I go back I'm going to also try pushing for something new. I want to cure this, not just live with it..

[Luna222]

Now I'm back in the UK and ugh...I had to wait 2 months for an optho appointment. Back to the crappy equipment and zero tests. I had run out the the Restasis I was on in Korea, as well as an eyedrop that increases mucus production. Apparently neither of these are available here. The doctor hadn't even heard of restasis and refused to believe I'd had cyclosporine eyedrops. She kept tying to fob me off with lubricants. I lost it (didn't help they were running 45 mins late first thing in the morning) and demanded to see someone else, so she brought in someone else, i assume he was in charge. He, thankfully, seemed to be aware of Restasis but said it's not in the UK, and that something similar will be on the market soon. He's put me on FML steroids once a day for 2 months until i go back, when he says i can get some cyclosporine drops...here's hoping. Neither of them bothered to look into the mucus drops no matter how much i kept asking about it.

Honestly though, when this first started I paid £250 to go to a fancy London hospital and it was just as bad. Same crappy equipment, no tests...all the want to do is give you lubricants.

All I can suggest to anyone is do your own research, and don't take no for an answer. When I go back I'm going to also try pushing for something new. I want to cure this, not just live with it.

Slightly off topic but my experience of healthcare abroad has made me really resent the NHS. My eyes are not the only problem I have had, and every experience has always been the same. Wait ages to see anyone and then they basically can't be arsed to ever find out a cause or a cure. Sure it's nice to not have to think about the costs of healthcare, but it seems like unless you have urgent, life-threatening problems then the NHS can be a huge waste of time.

[Gemma90]

Everything seems to take a while with doctors these days! Ugh. And aww. I totally understand. I have no quality of life anymore either, I just plod along day to day... I have two jobs and I sometimes wonder how I manage to keep them because if im having a bad eye day, oh the amount of mistakes I make is not unnoticed! I've had blood tests, the one result which always interested me but the doctors said were 'normal' was my testosterone level. It came out 0.6 nmol/L I think, which after some research I found was on the low side. (Oddly, since I was suffering awful acne and oily skin at the time of the testing!) I think hormones are difficult to test, esp on the NHS they just won't look into them deeply enough... and of course they are always changing with our cycle.

https://en.wikipedia.org/wiki/Refere...or_blood_tests

Well the Citalopram was initially a really positive thing for me, things were getting easier and people would tell me I was smiling alot more! No change on my eyes though, nothing atall. Sadly the good effects of Citalopram wore off after a few months and I found myself back in the same position as before... That said, I don't want to come off them right now cause I think I deal with situations better ON them, but the flat feeling is back. I have tried to up my dose to 20mg a few times and that DID affect my eyes to the point where I could only manage a few days on them before I went back to my 10mg. Im not sure if thats a coincidence or not, but I do remember walking round a shopping centre feeling horrendous because my eyes felt so dry and clogged.

[SharonS]

Ahhhh I think so too! It's a horrible thing for anyone to suffer from as the pain is truly overwhelming, but it is a lot to deal with at 24 I agree. I just feel like I have ruined my life and can't imagine what I will be like in 10 years at 34. I don't even want to think about it...being on medication for the rest of my life with various side effects. What will I be like at 60! Ahhh I can't bear it! not had hormonal blood tests yet but my doctor is writing to my GP about this he told me. It could take a while. I've also read that hormonal blood tests sometimes aren't that effective in picking up imbalances, and that imbalances are really difficult to correct. Has the citalopram affected your eyes in anyway? My friend recommended this one to me xx

[Gemma90]

I think your 'trigger' sounds like a hormone thing also. Im just still finding it difficult to come to terms with at my young age. I keep reading how people most likely affected are menopausal women and older people... and when i've been to the Eye Infirm im always the youngest in that waiting room. I think if I was say 20/30 years older then I may have been able to deal with it better and probably would think it was indeed 'just one of those things'. I take Citalopram (low dose anti depressant) but I wasn't taking this when I developed dry eye, I started taking it July 2014 so two years after the onset. Have you had any blood tests? Hormonal ones?

[SharonS]

Hi Gemma,

I am sorry to hear you have been suffering through all this. I think we are very similar! I had a progesterone implant in July 2012 and in January 2013 I believe I got blepharitis (no symptoms other than eyes harder to open in the morning). I had my implant removed in October 2014. My eye problems worsened considerably then. My eye doctor suspects it is a hormonal imbalance that caused it. In January this year I developed severe dry eye. I am so annoyed at myself for getting that stupid implant. I also am only 24. I feel like I have ruined my life! I know exactly how you feel. The worst bit for me is waking up in the morning and realising that this is something I have to deal with for life. Do you use any medication?xx

[Gemma90]

I've had a few different diagnosis' over the past three years. The first one was Meibomian Gland Dysfunction, this is what I believe is the problem, because I can feel blocked glands and can also see one of the bad ones myself in a magnifying mirror. But I have also been told its Ocular Rosacea, based only on the fact I was suffering from a little bit of acne the once when I was at the Eye Infirm, the doctor said spots are a sign of it... I don't really have redness though so not sure... and *touch wood* my acne cleared up by a year later. I actually visited an optician today, he said that based on the look of my eyelids (puffy and a little red) he thinks theres some bleph going on aswell. What he didn't know... was that a few hours before i'd been crying my eyes out, haha, so thats probably why my eyelids were all puffy!!

I think that I have Meibomian Gland Dysfunction. That I think was triggered after a stressful time in 2012 after which I also put on weight for no reason, had acne for the first time in my life at 21 and my periods became very light. It all happened at the same time. Luckily, things are better for me now, my periods are heavier again, I suffer a little acne only at that time of the month and don't break out in the angry big red lumps that I did. And I did loose weight with no trying (putting a little on again though now I think. ) The Dry Eye stayed of course, I was told today this is a life long thing that will always need managing... I was trying my best not to burst out crying in front of him again! I told him 'Im only 24' and he said its just one of those things, people get diseases at any age. I def think my eye problems were caused by a hormonal imbalance.

[fourchimneys]

[QUOTE=paalnoma;97677]Hi SharonS

I live in England and I experienced nearly the same thing. My GP also "dismissed" me. I understand your pain.

My story is that after realising that at least at that stage NHS could not help me, I seeked help through the private sector. I got a pair of scleral lens through private route.[/QUOT


Morning,

Did these lenses work? Do they come in prescription form or just clear lenses..where should i look to get some?

Thanks in advance

[SharonS]

Hi LaDiva, thank you for that very informative post! I absolutely love food, it is my passion but if someone told me my eyes could go back to normal with diet I would be happy to drink only water and eat boiled chicken and carrots for the rest of my life!! No doubt about it!! I will certainly give it a go and try my hardest. Yeah I have been reading Sazy's posts, now doing it with the help of a naturopath as I was lost myself. Thanks again!! Hope you have recovered from the cookies! I am waiting on my supplements to arrive then I will start (!!!)...currently having a cup of tea and a chocolate biscuit with sore eyes lol xx

[LaDiva]

Hi Sharon,
You are very welcome. It sounds like you have a great diet plan, and I hope that it will help you. Histamine rich foods are foods high in histamine, and histamine liberators are foods that encourage the release of histamines stored in the body. Last night I ate those cookies again and this time broke out in hives. Looking at the box today, they contain high gluten wheat and barley flour. Some foods on the list have more impact than others, but generally I must avoid all of it. It took awhile to notice a difference. I don't remember exactly how long, but eliminating foods had a huge impact on inflammation. I was left with the question "what CAN I eat?" Chicken, hamburger (which doesn't bother me as much as a steak), turkey, pork, lamb, yams, broccoli, zucchini, celery, lettuce, cucumber, carrots, gluten free oatmeal, pecans, almonds, unsweetened almond milk, coffee, camomile tea, cinnamon (thank God), garlic, onions, salt, almond butter (like peanut butter), blackberries, green apples, and asian pears. I also buy a bread at the health food store that doesn't cause problems. It is whole grain sprouted spelt bread with no chemicals or preservatives. Since you are in the UK, you probably won't find the brand there, but it is Berlin Bakery out of Berlin, Ohio. Hopefully you will be able to eat a greater variety of foods than I. If you have been reading Sazy's posts about detox, I suspect she is on the right track and that we somehow are having problems digesting and processing what we eat. I am not very scientific, so don't really know the answer, but I feel something is haywire with my digestive system. You might also consider a good probiotic if you are not already taking one. I use Dr. O'hirra's and buy that at the health food store as well. It needs to be refrigerated. Best of luck! I am rooting for you, and suspect things will get much better for you, but it is going to take awhile.

[SharonS]

Hi LaDiva,

Thank you for your kind message and support. I have recently been advised to do a SIBO diet plan for 3 months. It is very basic, mostly vegetables (non starch), meat, eggs, and a little fruit. I believe I am intolerant to dairy and/or gluten as when I avoid eating them for a period of time, my stomach feels so much better (no improvement in eyes though). I didn't consider histamine rich or histamine releasing foods. What is the difference between the two? The majority of foods on those links you posted I have been advised to avoid, some like avocados I can introduce after 3 months to see if there is any response to it. I know food is a major trigger for a lot of people so I am determined to see if I can find out if makes a difference to me. How long did it take to discover your triggers? how are your symptoms at present? I am having a series of bad day after bad day and just want one good day to motivate myself - things can get better hopefully! xx

[LaDiva]

Hi Sharon,
I am sorry you are having so much trouble. I have Ocular Rosacea and diet is a huge factor in controlling inflammation and redness. I can't remember very well these days, so if I've already told you all of this, forgive me. I have Ocular Rosacea, and must follow a strict diet that eliminates Rosacea triggers, foods high in histamines and foods that are histamine liberators. I couldn't figure out why foods not on the Rosacea list were bothering me, like coconut and coconut oil. Both are histamine liberators. Below are food lists if you want to give it a try to see if food makes a difference for you. It takes awhile for your body to clear the other foods out of your system, but it just might help. You will need to experiment. I eliminated everything on these lists, and then added things gradually over a long period. Sugar and all dairy products are also out for me, although I ate cookies yesterday and today and am having some eye problems. Vanilla and wine are killers as are dairy products.

Rosacea triggers: http://www.rosacea.org/patients/materials/triggers.php
Foods high in histamine and histamine liberators: http://www.michiganallergy.com/food_and_histamine.shtml

Best wishes to you. I hope this will help, and that you feel better soon.