"Life on Hold"

[farmgirl]

I can't go so far as to say the IPL has helped me yet but I will do the 4 treatments and decide if there is any point in doing more. I have another one next week I think so fingers crossed that 4 will make a difference.

I had a biopsy and it left me with a small numb spot on my lip but I don't notice it unless I search for it. I would insist on it and NO the treatment is not the same. Some of it is but things like stem cell injections are not going to help if lacrimal gland dysfunction is not your problem...duh. He does not know that there is so much more out there for dry eye....I hope, for the sake of his patients that he is not the primary treating their dry eye problems!!

[hopeful_hiker]

hannahmaywils I asked to see a rheumatologist who then ordered more blood work. He was not caring at all, saying that does not matter if I have Sjogren’s or non-autoimmune inflammation because treatment is the same: Restasis. Obviously, he does not understand dry eyes or how important certainty is to the patients. Sjogren’s could have other symptoms, too, so I wanted to know as much as I could.

After bloodwork returned negative, I insisted on a lip biopsy even though he said people get ulcers that don’t heal. I read up online and did not see any indication of that being a typical outcome.

Two months later, I have a tiny bump/scar on my inner lip and that’s it.

[diydry]

Have you tried scleral lenses, hannahmaywils ? They may be something to consider, as Hokucat mentioned, if other options are letting you down right now. I guess sclerals are harder to come by in the UK though. I'm not a huge fan of them (it's taken 10+ appointments so far to get the lenses fitted half decently) but I currently wear them about 5-8 hours most days and it provides relief for my eyes. I would prefer to be able to wear them longer but that's not really working for me right now due to discomfort and cloudiness in the lenses. Maybe ask your doctor about this option. If you read Rebecca's recent blog she even recommends that folks who can no longer tolerate soft contacts due to dryness look into sclerals as a possibility. https://www.dryeyezone.com/dryeyeblo...ying-surgeries

[Hokucat]

hannahmaywils , regarding which procedure worked for me, it was probing, because I had many glands with scar tissue that only probing can unblock. That’s likely why for me, LipiFlow did not work. IPL was not an option for me because I was told they do not recommend IPL for olive or darker skin (I’m Asian), because the laser is drawn to darker pigment.

quattroboy , that’s excellent advice about bringing a complete list of all your symptoms and everything you’ve tried which didn’t work, and not down playing your condition. I did the same, especially when I was determined to get probing when nothing else worked. Probing is an invasive procedure, so not a lot of doctors want to do it, but after seeing my extensive timelined list and my condition, I was able to get probing. And it turned out the probing was what was able to unblock my glands, the first major step to helping me get better. So it’s worth it to come prepared and fight for these treatments!

[quattroboy]

Meibum Ian hannahmaywils When I went to my outpatient appointment I took a list 3 A4 pages of notes I gave the consultant. I detailed a timeline from the date I had the LASIK, all the useless appointments and bad advice from the LASIK provider. All my previous poor experiences with the NHS.

My attempts to manage my symptoms on my own without success, which included a Lippiview assessment and Lippiflow, and all my mental health problems caused by my experiences and situation.

I also listed my current daily routine to prove I was attempting to get on top of my dry eye, which covered the number of drops I was using, lid hygiene, eye bag, castor oil at night, Omega 3 supplements, drinking loads of water and given up caffeine.

I listed all the drops, ointments, and other stuff which didn't help, I also said why.

I listed every symptom I was suffering with after LASIK. I also stated the impact on my life and work.

I also provided a full background to myself including wearing glasses, struggling with contacts, even that I suffered from acne as a teen!

I had low expectations given other people's experience of the NHS, in fact, his opening line was it can take 12 months for things to settle after LASIK. But once I handed my list over his attitude changed.

I think the fact he performs LASIK privately means he feels he should help me, he also pointed out I was already on my way to developing dry eye before the LASIK. Now whether he thought I should of therefore be screened out or warned I don't know.

I would advise you go in and do not play down what you are going through, in fact, over-egg it, the problem with the NHS is it wants to be conservative in its approach. Also, my wife came in with me and reinforced everything and reinforced how serious things are.

Don't get me wrong I really wont to try AMT and Pilocarpine so I haven't got everything.

[Meibum Ian]

Meibum Ian

Please keep me updated on the Ikveris drop. Im seeing a consultant tomorrow to try and get it on the NHS. Can I ask do you have it on the NHS? If not I will have to get a prescription from the lady in London.

Yes I have tried a weeks course of steroids. I don't think they did much unfortunately. Maybe reduce swelling marginally.

The Lady I saw in London was called Caroline Hodd, she is based at the Dry Eye Centre ( 7 Devonshire Street, Marylebone). I know that they offer IPL there. I also mentioned to her about the stem cell injections in America by Dr. Cremers. She said two of her patients have had them and have been very happy with the results. I know there are a few other dry eye clinics in London that you could explore also.

I have a private prescription for Ikervis. NHS was terrible for me and wouldn't consider prescribing it. It is probably still worth trying as you'll save money with an NHS prescription - but maybe go without any expectations?

1 week is pretty short for a steroid course so maybe don't read too much into the lack of improvement.

I've seen Caroline and thought she had a very good approach and manner, which is important.

[quattroboy]

quattroboy Hey, im sorry to hear your story. I certainly wouldn't blame yourself. But like you, i do try and retrace my steps and think what the frig did I do so bad to make my eyes turn out like this!
Its good to know that your NHS consultant has given you Ikervis. Can I ask what is AMT and Pilocarpine that you mention?

AMT is annemonic membrane treatment. Oral Pilocarpine is a drug mainly given to those suffering Sjogren's. It stimulates glands to produce moisture, mainly saliva but can help dry eyes. There are some interesting side effects which I'll leave you too research.

The only person in the UK doing AMT privately, that I know of is Andrew Matheson, he's very well thought off. https://www.youtube.com/watch?v=Ttek1y-QdaQ

Still on my wish list but I need to give my current consultant a chance. Progress is measured in months not weeks. Also we need to set ourselves small goals. Have you read Rebecca’s story? If not I recommend it.

[MGD1701]

HI Hanna
in case you have not read my recent post, #30 indicicating different treatment options etc. Perahps you might find some useful info there.

Dont give up, if we search, we will find solutions.
Think positively and think what you have!! Good luck!

http://forum.dryeyezone.com/forum/dr...k-milner/page2

[hannahmaywils]

Hokucat Thank you for your response hokucat! Yes after all these responses I am now definitely going to get a lip biopsy and my hormones tested first.

Yeah i've never been sure on which one to go for- IPL or Lipiflow. Also the thought of spending loads of money and having no improvement makes me so angry. I just think you're not having my money "mate". But that's just how I feel now. I think for me, IPL would be the next step.

Which ones helped for you?

Yes I use a gel called Xailin eye gel- they have a night and day one. I used this in combination with Hylo-Forte eye drops for anyone interested

[hannahmaywils]

farmgirl Hey! Yes it was horrific, bless her she was apologising a lot whereas i've seen a consultant in Liverpool who just ripped it off and pretty much told me to buy different drops. He was great. Oh also, he suggested a mock desk test. I thought what the frig, he said buy some plants, set up a desk in your house and pretend you are at work. I looked at my dad thinking PLEASE GET ME OUT OF HERE RIGHT NOW. He also shouted at my dad for talking during the schimrer test. We were trying so hard not to laugh. A strange one I must say.

I'm glad to hear IPL is working for you, I hope your improvement continues.

Yes you're right. I'm not jumping at the idea of stem cell treatment just yet. But it is very good to know that treatment is out there. Big shout out to Dr. Cremers!!!!

Yeah I think one of the hardest things for me is going to sleep, forgetting about it all a I can sleep through the night no hassle and then waking up and thinking here we go again. I feel sorry for my boyfriend who tries so hard to make me happy and get me out the house. I'm trying my best not to lose him.

How many more IPL sessions are you having ? Do keep me updated

[hannahmaywils]

hopeful_hiker Hey. Thank you for your response. Yes I quite like the idea of it " life on hold", things can only get better. Everyday is a mental challenge, especially when prepping myself to go to to work and sit in that horrendous air conned room. I also travel 45 mins to work there and back so a lot of thinking time unfortunately.

How do i go about getting a lip biopsy? I have tried numerous times to get this done by my GP and he assures me that the blood work is all i need. I get angry. If im honest, I am now at a point were id given up slightly. I think it's so hard to articulate all this to a GP and them look at you as if your mad. That's how I feel anyway. I think I just need to speak with my parents and do this all privately. See a hormone specialist and rheumatologist.

I need to just to find my feet again I think. Everybody is so encouraging on this forum. It means a lot

[hannahmaywils]

edmunder Hey! Yes I did attempt to put castor oil in my eyes for about 2 weeks, they felt great in the morning. However, I think I reacted badly to them. Massive swollen eyelids, like nothing ive had before. Maybe I will try coconut oil this time

[hannahmaywils]

quattroboy Hey, im sorry to hear your story. I certainly wouldn't blame yourself. But like you, i do try and retrace my steps and think what the frig did I do so bad to make my eyes turn out like this!
Its good to know that your NHS consultant has given you Ikervis. Can I ask what is AMT and Pilocarpine that you mention?

[hannahmaywils]

Meibum Ian Thank you for your response and kind words. Yes I suppose the good thing is that my oils are flowing. The lady in London, which I will find out her name for you expressed my oil glands and she said they weren't blocked and that the oil was clear/ not much came out.

If i'm completely honest my parents have become pretty good counsellors! I've never really like to show weakness so it feels OK when I cry to my parents! But no, I don't know what I would've done without them through this.

Yes the gym and exercising has always been a massive part of my life. I was an international squash player for 14 years, travelling the world before I had to give it all up. It makes me sad how now I barely make it to the gym down the road. But like you said, exercising is so great for mental health. I would recommend exercising,bike rides, long walks if you are feeling down. It helps.

Please keep me updated on the Ikveris drop. Im seeing a consultant tomorrow to try and get it on the NHS. Can I ask do you have it on the NHS? If not I will have to get a prescription from the lady in London.

Yes I have tried a weeks course of steroids. I don't think they did much unfortunately. Maybe reduce swelling marginally.

The Lady I saw in London was called Caroline Hodd, she is based at the Dry Eye Centre ( 7 Devonshire Street, Marylebone). I know that they offer IPL there. I also mentioned to her about the stem cell injections in America by Dr. Cremers. She said two of her patients have had them and have been very happy with the results. I know there are a few other dry eye clinics in London that you could explore also.

[Hokucat]

At least half of my glands have atrophied or are short, but I have still been able to get better, manage my condition, and get my life back. After several years, I was finally able to address the root cause, which made a world of difference. I honestly think if I were able to find the solution sooner, I would have lost a lot less glands, and would not have any degree of dry eyes anymore, but it’s still very manageable now. So it’s important to keep pushing ahead, you WILL get better, but likely the sooner you find what works for you, the better shape you will be in the long run.

As mentioned by others above, you should get comprehensive testing...check for autoimmune disease, hormones, vitamin deficiencies, thyroid, etc. This may or may not show anything, but if it does, diet, supplements, meds, and other treatment options can be more appropriately targeted to address your condition.

I think Ikervis is worth a try now since you have aqueous deficiency, plus it can take several months before seeing any results from these rx drops.

You might also look into trying a few sessions of LipiFlow or IPL, or some combination of both. If those don’t work, there’s probing which in much more invasive, but if you have scar tissue like I had, only probing can unblock that.

Things that helped or still help me with dryness symptoms are a good gel drop like Genteal Severe Dry Eye Gel, and scleral lenses. The Genteal was the only drop/gel that made my eyes feel moist and soothed when I used to have zero tear film, plus it was longer lasting...that little tube of gel literally kept me sane during the years I had severe dry eyes. Sclerals I wear now 12 hours a day to help with remaining dryness from atrophied glands, and it makes it more comfortable to do daily activities and function. Not everyone can tolerate them, but if you can, it can provide some relief. It’s worth going for a consult to try on a pair.

I know it’s not easy, but hang in there and keep looking for what things can help. Also, wanted to share my Dry Eye Story I recently submitted, in case there’s something there that might help you:

https://www.dryeyestories.com/new-bl...ous-deficiency