Hello from Sweden

[Fenix]

How much does lipiview cost? Here only two or three doctors have lipiview and lipiflow, and the lipiflow costs like 1500/2000 euro.
Blephasteam + eyelid massages twice a day are comparable to a single lipiflow session?

I'm doing nasal rinses because it helps to have nose clean and free from bacteria, especially in winter.

[Alix]

Hi Marcus I am not sure what an earpicker looks like but to me what they did to you after IPL does not sound like manual expression. Manual expression is when they use mini forceps to grip the eyelids and go along them squeezing out the oil. They do this for both the upper and lower eylids. If you google this or look it up on YouTube you can see videos of doctors doing this.

As for warm eye compress, at Moorfields they tell patients that after doing this they should take a cotton bud and gently roll it over the eyelids, pushing down over the top of the uppers and pushing up over the lowers but not too hard as this will cause inflammation.

Finding out what the state of your glands are is important. If they are all there but are just blocked then IPL and warm eye compress are going to work eventually. However if they are all atrophied then these are not going to work as oil is not going to come out of atrophied glands.

Lipiview is useful as you would find out if you are a partial blinker. If you are, then blinking exercises will become important.

[Hajen13]

Fenix Yes i have also read and heard similar, this was my third IPL treatment though and no improvement at all so far. Thank you for going through your routine i think it is very similar to mine except the nasal rinse (how come you are doing this?) and the flax seed oil (intend to buy it today and give it a try). Soon i will also take these test i talked about earlier, as you are saying the problem might be due to something else.

I have had a lot of problems with my stomach the last years and have the diagnosis "IBS". But after starting eating healthier since a couple of weeks ago in order to help the eyes i am starting to experience a stomach that works a lot better than before and hopefully the eyes will follow.

Interesting that you think that probiotics have helped you, i have not been adding this to my diet until recently. Will continue then

farmgirl Thank you for the link, just finished reading it through. Extremely well written, think i learned a lot. Anyone who knows if he is doing better since quitting stare in to a screen all day long? Or are there other stories were people have improved a lot since giving up a work which is in front of a screen? As i mentioned before, 1 month vacations doesn't really do anything for my eyes therefore i am a bit ambivalent.

I am starting to think that after all the eyedoctor might have done expression after the IPL. He pushed against my eyelid margin with an ear picker afterwards, is that it? And is that something i should do myself after using warm compresses?


Also two new questions:

1: If Lipiflow didn't work is it really worth continuing with warm compresses? As i understand it Lipiflow is the ultimate warm compress which can reach the meiboumian glands in a totally different way than warm compresses ever will.

2: Why is meibography so important to do? I mean how can i for example use the information that 4 out of lets say 12 glands in my left lower eyelid are not working as they should?

[farmgirl]

Sorry Marcus, I forgot to post the link to pythonidlers post...

http://forum.dryeyezone.com/forum/dr...nduced-dry-eye

I just noted that you said they don't express your glands after the IPL little wonder it is not working for you. Expression is key to getting the old oils out that are probably clogging your glands.

As regards oils those are fairly standard to take so yes, add them to your regime.

[Fenix]

Hajenthirteen I read that there are cases where IPL started giving improvement after three treatments. Maybe it is your case? The usual protocol is not at least 4 treatments of IPL?

My situation maybe is not severe as your (merging the diagnosis of my 5 opthamologists I have MGD / evaporative dry eye / blepharitis), but this routine is helping me a bit:
- Hot compresses
- Nasal rinse
- Fish Oil + Flaxseed Oil + Strong probiotics
- Healthy diet
- 2 litres of water a day
- Eyelid wipes (if blephaclean doesn't work, try other wipes. They are not all equals)

And you know what? probiotics is the thing that helped me more, but I have to be sure and investigate more.

If nothing worked, maybe the problem is not the eyes. In my case I think it is something else, so very soon I will try to check things like:
- Allergies
- Leaky gut
- Gluten Sensitivity/intollerance
- Hormones (thyroid, insulin, estrogens)
- Sjogren Syndrome (for the second time)

If they will be negative, I will try to do a detox/low infiammatory diet (plus the usual routine). Some studies says that bacteria in your gut may trigger an inflammatory eye disorder.

[Hajen13]

Alix

Why have i not thougt of Olso before, i visited the clinics home page and got a really good impression. Thank you for the suggestion, i will write to them and explain my situation what i have done /not done and see if they can have a look at me.

Fenix Im already doing probiotics but thank you anyway


Anyway the last IPL did nothing, i am so very suprised...
Also the bepheaclean tissues for cleaning the eyelids only made things a lot worse since it was to strong for my eyes.

But thanks to this forum i have some new things to look into.

[Fenix]

MGD1701 Thank you for your post. Since a couple of weeks back i am eating as healthy as i possibly could (maybe a bit exaggerated), avoiding added sugar completely together with eating more green and trying to get all the vitamins. If there is a chance that this might help i no longer can afford to cheat in this area since it's not close to being worth it. What is GLA? Moisture Glasses
looks interesting, seen those before and maybe it is time for a buy (if they do shipping)
I will check out the links, thank you again.

You could try to add probiotics as daily supplements. On google there are some research that shows that probiotics helps improving dry eye, maybe reducing a systemic inflammation that starts from the gut.
But ask your doctor first if you can add it to your diet.
See this: http://www.optometry.org.au/blog-new...-help-dry-eye/

[Alix]

Hi Marcus I cannot stress to you enough about getting a second opinion, even a third, fourth until you get a solution. I have lost count of the number of eye doctors I have seen in the past year, and I am still suffering from burning pain.

Lipiview is a completely different machine to Lipiflow. The Dry Eye Centre in London does not in any case offer Lipiflow as they said they believe it is ineffective. They do however offer IPL, and do manual expression afterwards.

If London is too far for you, there is a dry eye clinic in Oslo which may be worth going to.

[Hajen13]

Alix I am thinking more and more about it because as it is right now the "truth" about my problems lies in one persons hands, the person who founded and runs this clinic i am talking about.
I do have trust in him as he seems very well educated in the area but i am not ready to put my life in his hands. London is not far away so it could be something, thank you for the recommendation. Do you know if the Lipiview is usually performed at the same time as (or during) the lipiflow process? I guess if a clinic have the Lipiflow machine they should have access to the lipiview?

MGD1701 Thank you for your post. Since a couple of weeks back i am eating as healthy as i possibly could (maybe a bit exaggerated), avoiding added sugar completely together with eating more green and trying to get all the vitamins. If there is a chance that this might help i no longer can afford to cheat in this area since it's not close to being worth it. What is GLA? Moisture Glasses
looks interesting, seen those before and maybe it is time for a buy (if they do shipping)

I will check out the links, thank you again.

[MGD1701]

Hi Marcus

What important is
1. get accurate diagnose so you can deal with it in an effective/economical fashion and
a right combintation/order also makes a difference, including
gland functions/images, glands could look normal/beautifully but no function, meaning no clear oil comes out.

stop inflammation cycle
if you can find doctor with MMP-9 is the best as it can detect more and more accurate too, I would say.

2. healthy diet, avoid sugar, processed food etc. flaxseed oil helps but combined with GLA works more effective. Combined these with your big meal works better too.

3. moisture glasses is a must to avoid (indoor/outdoor) stress from wind, dry air, blue light - etc. - brand 7Eye is great for such purposes.

4. Vit.D, zinc, Vit. A are important. Most people do not have enough Vit. D. Wise to check first.

Maybe you could find some useful tips from my old posts
http://forum.dryeyezone.com/forum/ar...a-tea-tree-oil

http://forum.dryeyezone.com/forum/ar...ueeze-lids-etc
(make sure to watch the videos I have found - Dr Korb, the inventor of LipiFlow, LipiView, 2016's)

http://forum.dryeyezone.com/forum/dr...dr-mark-milner

Good to educate yourself as there are too many new things to learn - this is how I have managed it and you can make it too.
Be positive, curious. Good luck!

[Alix]

@Hajenthirteen Hi have you thought about visiting an eye hospital/dry eye clinic in a neighbouring country to get a second opinion? I really do believe that getting a meibography done is key - you need to know exactly what the state of your glands are. Whether you have them all there and they are just blocked, or whether they are atrophied then would decide what the best treatment is. Personally I saw several different doctors at Moorfields (best eye hospital in the UK), not getting anywhere, before getting Lipiview done at the Dry Eye Centre in London where I found out for the first time that most of my glands are gone and that I am a partial blinker.

Please look into getting Lipiview/meibography done in Sweden. If this is not possible, I would recommend the Dry Eye Centre in London.

As for Blephasteam, I haven't used it yet (waiting for it to arrive in the post) but you can read reviews on this on the forum, and I will post feedback once I've used it.

[Hajen13]

hannahmaywils No i don't think so but i sure would like to test one or both of them one day since i have been seeing these products been mentioned a lot in here. Are they prescription free?

Alix Okay i understand, thank you. I had pretty much the same experience with eyedrops as yourself, a little bit of relief in the beginning (during the first year), then not so much effect and finally i thought that most of the drops i used only made things worse so these last years i have been skipping eyedrops completely. I don't know about neither Serum drops or doxycycline i will write these down for the doctor, even though i don't think Serum drops are available in Sweden yet. Thanks for the advice on Blephasteam, i saw that the clinic has these for sale in there own shop. Are these comparable to warm compresses?

CJ L. Thank you, i will bring this up with the doctor as well.

farmgirl Yes you are probably right but the thing that makes me doubt that a little bit is that even after 1 month of vacation and being away from the work, screens, dry office air etc. i have not noticed any improvement or perhaps maybe just a slight improvement. It sure would be nice to try being away for a longer period, wish i was a millionaire But of course there are other works, unfortunately screen free workingplaces are not in majority here in Sweden 2019. But the breakup from this current job comes closer and closer, i just hope i have a new one the day i can't take it anymore. Regarding the IPL, no they have never done any sort of expressions after these treatments. Thank you for your input, i will work hard to learn exactly what the doctor is seeing when he looks at my eyes.


Dowork123 First of all thank you for sitting down taking your time to write this long message that means more than i can express to you. When you are saying that you know exactly what i am describing that really makes something to me, no one has ever said these words to me before.

In general the problems are definitely the worst in the mornings during the travel with bus + subway to the workplace here in Stockholm and then the first couple of hours at work are usually horrible until it usually gets better (depending on having to be in meeting rooms ore not etc.) and then it usually get worse again during the last working hours when the eyes gets really red.

I don't snore very much, i usually sleep on the side and i don't have mucus in the corner of the eyes. The problem is with the quality of the oil, not the quantity but i don't know a lot more than this unfortunately. It is sure that i need to get at clearer picture on the problem, hopefully i can get it at the clinic otherwise i have to go outside of Sweden.

I will ask the doctor for doxycycline when it being mentioned twice in this thread now It is prescribed however.

I am glad that you are doing better after seeing this doctor i wish i could meet a doctor like that, a person who really knows medication and can ask the right questions.

I will not give up, again thank you so much.



A few questions to the forum:

* Is it worth to try flaxseed oil? I have seen that some people on this forum seems to connect the use of this oil to
there improvement. I guess it can't hurt?

* The only thing that makes me feel normal these days is after drinking some stronger alcohol, the eyes get blank and i can
feel like a normal person for a few hours until the spell is gone. Am i alone experience this or is there anyone who
share this feeling?


/ Marcus

[Hajen13]

I am overwhelmed from all the response, i all of a sudden don't feel as lonely in this as i have been for the past 6 years. I will get back to you during the weekend! So glad i found this forum and realizing that i am fighting the fight with a lot of other persons, hope you all have a good weekend.

If your clinic didn’t image your meibomium glands, that’s slightly worrisome. Any good clinic would image the glands to determine if there’s been atrophy, among other things.

when are your symptoms the worst? In the morning? Or do they feel best in the morning and get worse during the day? Do you have mucus in the corner of your eyes frequently? Do you snore? Do you sleep on your side? Do you produce poor quality oil, grey and turbid? Or do you have good quality and poor quantity?

I think getting the allergy testng and hornone testnjg is a good idea. Make sure to ask for tsh, t4 AND t3. Most doctors will not do t3 but it’s important. Get your other hormones checked too, testosterone free and total, progesterone, estrogen, fsh, lh, etc. that way you can start eliminating possible causes.

Let me say say that for MGD, the best drugs I’ve used are compunded steroids and doxycycline. If your oil is a problem, I think doxy is a go to medication but I haven’t seen you mention that drug. Again, I’m not your doctor, I haven’t seen you, so I can’t make medical decisions for you. However, I would assume they would try that drug with you because it’s a really effective drug for MGD depending on the cause.

Let me also say, I’m sorry you’re dealing with this. If anyone here understands how life can get so bad, it’s me (and I’m not special, we all live our own little hell). When you say, how can you live like that. Makes me sad because I know EXACTLY how you feel. If I didn’t get some relief, I wouldn’t have done so well, let’s jist leave it at that. So I get it..,that’s why, for you especially, you may have to figure this out a bit in your own AND/OR travel to a different country for better care. I would NEVER have figured out my diagnosis on my own. I needed a genius investigative doctor to figure this out, and I found one after almost a year of suffering. Finding good care should be your primary goal and keeping yourself as comfortable as possible in the meantime.

I didnt see a mention of steroids either...so they haven’t tried steroids or doxy on you yet? As for lipiflow, I do t think I’ve seen it help anyone long term. I guess if your MGD is due to old age, that the glands are just sluggish and eventually clog, I coukd see lipiflow possibly helping. People like ourselves, I believe our pain/discomfort probably puts us into another category. I’ll say that if hot compresses don’t work well, or offer relief for very long, lipiflow probably won’t do much long term. Same with ipl. Ipl is indicated for people with ocular rosacea. For those people, it constricts the dilated blood vessels in the lids. If you don’t have inflammation caused by rosacea, ipl probably isn’t the best fit either. Both will help, but most likely only temporarily.

That’s why finding the root cause is key. For example, I have floppy eyelid syndrome. Every doctor was testing me as if I had advanced MGD and ebmd. Which did nothing to really help me. Because it was the back of my eyelids that was the isssue. No doctor flipped my eyelids til I met this guy. Then he said, you have chronic papillary comjunctivitis and stretchy eyelids, do you snore? I said yes I just started this last year. Boom, he nailed it. Told me to stop all the drugs I was on, start doxy and steroids and cover my eyes at night (I rub my face into my pillow, which causes a lot of this). Then I finally started healing. So you must target the therapy. People may say, take this drug or that drug, I just said that to you. But at the end of the day you need a professional to diagnose you and then apply a good drug therapy.

Good luck, we can help, don’t give up and keep searching for answers. If you have a moment, read python finders computer induced dry eye. I know you said you haven’t quit work. He suggests to do so if you work in computers. All that discomfort you feel is causing further damage. I know you don’t want to hear this, but I think you need a new job. I know this is a lot to take in, but I promise you, you can get better. Good luck.

[farmgirl]

Hajenthirteen Can you get hold of Restatis ? Or even better, Xiidra? I am having to travel to the US to get hold of Xiidra to help me with my dry eye

HI Hanna: Just a note to let you know that drugs are VERY expensive in the US, they are much cheaper in Canada. Xiidra in Canada costs about $70 USD ($100 canadian) for a one month supply. It actually does me 2 months because I can get a total of 4 drops out of a container so only use one/day, not 2.