Recent decent into dry eye hell, still figuring it all out

[Rebecca Petris]

Hi Edmunder and welcome!
Just picking up on a one note from your original post

I also have a strange medical condition where my eyes and feet are incredibly cold and clamy most of the time.

Do you think "menthol sensation" describes this? It's a term we use to describe a constant 'cold and exposed' type of feeling that some dry eye patients get.

Random thoughts

I can't tell you how many people I know that had their first major-major symptom onset in the wake of a topical antibiotic treatment for something going on. In fact spoke with someone in new york today who had this start a year ago with a massive sty - has been dry with light sensitivity ever since.

Contact lens intolerance is not a predictor for PROSE intolerance as far as I know. Sclerals (true sclerals completely vaulting the cornea) are a completely different ballgame. The reason people can't tolerate contacts is related to having an object draped on the cornea. Sclerals don't touch the cornea, they just keep it bathed.

I understand you've had treatment recommendations. But what are you doing to manage symptoms? For a lot of us, that's the crux of the matter. It doesn't necessarily overlap 100% with treatment. For example when symptoms are acute, moisture chamber glasses are your best friend when it comes to getting comfortable again.

[MGD1701]

Hi edmunder

Sjo test
If you also have dry mouth - good to tell dr -
so (s)he can order the sjo test for sjogren syndrome.

[MGD1701]

Pure HOCL
not sure if you are aware of this,
the beauty of it has no bacteria resistance.

Chalazion
I think it is due to glands are blocked. so warm compress and lid hygiene are critial. However, warm compress is not easy to master. One US eye dr even says most people perform it incorrectly. I have shared some tips in the forum on this before, you can easily it find, if you care to learn more. It took me 3 months to figure them out.

[edmunder]

MGD1701 Thanks for the info, I wish I could buy you lunch!

I found a place not far from me that has this info. It has a doctor at an eye center who only focuses on dry eye.

Dry Eye Consultation

Grand Rapids Eye Care has the Oculus Keratograph 5M. This is a topographer which is used to measure the curvature of the cornea, the front surface of the eye. It also contains software that can assess and help diagnose the many different types of DED. It measures tear film thickness, tear film dynamics, tear film evaporation, conjunctival redness and meibomian gland dysfunction. It provides a summary that is printed for each patient with instructions and recommendations. The Jenvis Dry Eye Report can be seen below. The Keratograph provides a map to dry eye relief and can track progress along the way. Please see our treatment forms for some of Dr. Kresnak’s favorite treatments for Dry Eye Disease. For a dry eye assessment please call our office for an appointment. In most cases this condition can be billed as a medical exam.



As for the above Chalazion photos. Mine were much worse. Twice as big. This is when they first started after a few days. I couldn't believe it. They got much bigger before I got strong antibiotics. I went to the doctor here in China and they just said do warm compress. So I flew to Taiwan and got better medical treatment from western trained doctors. I love China but their medical knowledge is so terrible.

Horrible thing was they kept coming back. I would take antibiotics, then they would go away, I would stop, a week later they would be back. So now Im on daily Doxy 100, for 6 months now. But I want to stop so I can do a week long fast, but Im terrified of getting the chalazion from the extremely dry eyes.

I just tried to add a photo of my Chalazion but Im not allowed yet I guess.

[MGD1701]

Chronic Chalazia
not sure if you refer to this. Well, better not to miss anything.
Found this from Dr Laura Periman twitter - how IPL helped with this.

[MGD1701]

Hi edmunder

Gland images
Keratograph 5M, LipiView, LipiScan or if dr's slit lamp equipped with camera.

Seems Keratograph 5M can perform more tests
(kind of LipiView + MMP-9 + osmolarity & more, if I understand it correctly). There are many videos at YouTube including a lecture from Dr Rolando Toyos.

Ointment: I dont use it anymore - most doctors do recommend it. I think Systance has

LipiFlow
if doctors push it too much - be careful. Dr has LipiFlow does NOT mean they know how to treat. We can only get results in right combintation, order and timing. BlephEx prior to LipiFlow would be more effective (1+1=2), according to some top drs in USA - I think so too, especially if you have inflammation issue.

Some people compain LipiFlow do not help them - it is because doctors fail to detect/treat other issues first.

Heyedrate spray is also pure HOCL - some doctors recommend it too.

HydroEyes vitamins
has omega 3 (& GLA) already not sure if you still need flaxseed oil??

You list looks great. Being proactive is great and important. Good luck!

[edmunder]

Hi edmunder

welcome. Best is to find a real expert in USA. Some tips would be:

1) take gland images and MMP-9 (to detect level of inflammation) to decide how agressively should be treated, such as LipiFlow, IPL, BlephEx, TrueTear etc.

!

These gland images can be done by doctors who do Lipiflow? I see a few doctors in Grand Rapids, MI which is a couple hour from my home that have Lipiflow, they seem to push this procedure, since it costs a lot for 12 minutes of work! =)

I will call them tomorrow and look around for what MMP-9 means and how to get gland images done.

[edmunder]

Hi Edmund. So sorry to hear all that you've been going through. I went through several years of my own dry eye hell to the point I was homebound and in constant pain for several years, likely due to Sjögren's syndrome (autoimmune), worsened by reduced blinking from excessive computer use on the job and a long drive to/from work. I also had all kinds of other symptoms like dry mouth, very dry skin all over my body, joint and muscle aches, etc. But I am better now after doing probing to unblock my glands, finding the right diet changes to keep oils flowing/not have my glands get blocked up again and help immune system, and wearing sclerals to manage remaining dryness due to lost glands.

Im not sure if I have an autoimmune or I am suffering long term from acutane use. I am very interested in probing. I want to get my oil going as good as possible.

So I think you and WellEyes are right to suspect autoimmune or something else going on, besides past Accutane use. When you get back to the U.S., would recommend getting a comprehensive physical and blood panel that includes tests for autoimmune disease, hormone levels, thyroid, vitamin deficiencies, etc., AND also see a good dry eye specialist. Perhaps try going to University of Michigan (might not be real close to you but at least in your state, plus they have satellite locations), where they have the Kellogg Eye Center and likely many medical specialists like rheumatologists who can do a comprehensive exam. Often at these big medical universities, the eye doctors work with and refer patients to rheumatology and other doctors to help find the underlying cause of dry eyes. Plus these universities often have the best equipment and resources to help diagnose and treat the problem. University of Michigan is also a provider of PROSE scleral lenses, which are the ones I wear, so that could be available to you as an option down the road.

https://www.umkelloggeye.org/

Thank you again for this Univ of MI information. Im not sure how often I will want to drive 3.5 hours one way to get there but I could probably go and get a hotel room, hang out in Ann Arbor for the day and drive back the next. Luckily my mother is retired and perhaps could make the trip with me and drive some of the time.

I have to go to an appointment right now, but can write more later. Am glad you joined our forum...it can help you get up to speed a lot faster on resources and treatments, as well as we're all friends here wanting to support each other.

I have been unable to wear contacts for most of my life and only have ever tried to wear dailys for things like basketball or some special event where I didn't want to wear glasses. And then I would only wear them for a few hours, then go to the bathroom and remove them. I have 2.5 prescription so its not the end of the world if I don't wear my glasses. Im not sure I could wear those PROSE lenses.

[edmunder]

Hi edmunder

welcome. Best is to find a real expert in USA. Some tips would be:

1) take gland images and MMP-9 (to detect level of inflammation) to decide how agressively should be treated, such as LipiFlow, IPL, BlephEx, TrueTear etc.


Yes thank you I will make sure to have this done ASAP once I get back. I don't think my eye doctor can do this but I will find a place a that can.

2) lid hygiene is very important. Many top doctors/professor commend pure HOCL, like Avenova to control bacteria overgrow.


I have purchased some Heyedrate spray since the Avenova spray seemed wildly over priced. I will try that starting day one. My problem isn't much itchiness and I haven't lost my eyelashes yet.

Demodex, if you also have itchy eyes when wake up, apart from redness you mentioned & lash loss, good to add tea tree oil product (soap free).

3) warm compress is important but not easy to master. If you dont feel great afterwards and dont feel oil flowing, something wrong. Many docs recommend Bruders. Tricks are 45C and reheat for the best results. But if eyes are too inflammed, often doctors recommend cold.

4) ointment before bedtime plus swimming google might be even better.
make sure you clean lids/lashes in the morning

Do you have any recommendations for night time ointment? I have been putting coconut oil in my eyes at night to get through the night for now but will try to buy something especially made for that once I return to the USA.

5) ask your family members to check if you close eyes 100% when sleep.

6) blood tests for heavy metals, Vit. D, Zinc, etc.

I had a comprehensive blood test done a few years ago because of the medical condition I have, which the doctor didn't really know what it was, where I have very cold hands and feet, think ice cold even in the summer, plus profuse sweating. So I take many vitamins such as Vit D, Zinc, Magnesium, Turmeric, Fish Oil, multi-vitamin. The only thing was my vitamin D level was very, very high and I think that is from excessive vit d supplements such as 15k a day plus vit K.

7) accupture & chinese medicine: have you tried these?

I had terrible joint issues before which makes me now think more about that autoimmune issue, and I went to an accupturist here in China but it didn't help much. What helped the most was changing my diet to a very low carb diet, foam rolling, stretching, yoga.

8) wear Moisture chamber glasses, avoid smoke, sugar.

Lastly, keep learning/exploring new things. That is how I get it under control - pretty well now. Good luck!

The funny thing is, or ironic maybe, that I am incredibly healthy otherwise. I lift weights 3 times a week, I go to the sauna at my gym, I eat incredibly healthy foods rich in nutrients, I don't smoke, drink and marijuana use was 20 years ago. I drink lemon juice, green tea, apple cider vinegar everyday so my body is not too acidic. other than my horrible looking eyes and the huge black bags underneath my body looks 10 years younger than my 37 years old. I feel like I did everything right and still have a horrible health problem.

[edmunder]

Thank you for your replies and I will be thinking about all of them when I go to see my doctor.

Hokucat Thanks for the Univ of MI recommendation. It will be a 3+ hour drive to get there but I will try and see someone at some point. I have a 3 month vacation this summer so I will use every day as an opportunity to see if I can get my eyes somewhat better.

I have bought an enormous amount of products that will be waiting for me in 10 days when I arrive in the USA.

Thermalon Dry eye Compess
Laser thermometer
Hydroeyes vitamins
BioAstin higest potency
Q-gel double potency 200mg
Heyedrate spray
Lid Scrubs
Lutein
Nordic Naturals liquid oil Omega 3
Castor Oil
Tumeric
Flaxseed Oil


As you can see Im trying to see what everyone does and just try it all. At this point money spent doesn't matter at all if I can get my eyes to a somewhat decent level of just a bit painful and dry. Today is an OK day. I did a very thorough warm compress and then really expressed each gland using a magnifying glass and a very hard q-tip, it has a wooden stick not a plastic one. It really seemed to help express some oil so its not so sticky in my eyes.

I have a dry spot inside my top eyelid on my left eye that is worrisome.

diydry I also use the insight timer App for guided meditations and I find it really helps bring me back from despair which I find myself occasionally.


Has anyone purchased the titanium tools on Ebay that doctors use to express the glands and tried doing it themselves after each warm compress? The tool is less than $100 and that seems a steal, though Im not sure how well I could do it to myself.

[diydry]

Hi Edmund, welcome to the forum. I'm fairly new myself. We're all here to support you!

You should definitely seek out the expertise of a specialist. I doubt a small town doctor will know how to handle your symptoms. Search the web for dry eye and corneal specialists in big cities. MGD is a mysterious illness and there is so much we don't know. There could be some underlying hormonal and inflammatory imbalance as others have said. I would definitely look into Lipiflow and IPL. I did Lipiflow and I believe it helped to open up my blocked oil glands, took my symptoms from severe to moderate. Blinking exercises have helped a lot. Warm compresses aren't doing much for me yet but I plan to experiment with different techniques. There are lots of options out there, so don't lose hope.

The mental game is half the battle (probably more than half). Feeling down is expected. I'm also trying meditation focused on healing using an app called Insight Timer. Also music, poetry, and walking in the botanical gardens. Take it one day at a time.

[MGD1701]

Hi edmunder

welcome. Best is to find a real expert in USA. Some tips would be:

1) take gland images and MMP-9 (to detect level of inflammation) to decide how agressively should be treated, such as LipiFlow, IPL, BlephEx, TrueTear etc.

2) lid hygiene is very important. Many top doctors/professor commend pure HOCL, like Avenova to control bacteria overgrow.

Demodex, if you also have itchy eyes when wake up, apart from redness you mentioned & lash loss, good to add tea tree oil product (soap free).

3) warm compress is important but not easy to master. If you dont feel great afterwards and dont feel oil flowing, something wrong. Many docs recommend Bruders. Tricks are 45C and reheat for the best results. But if eyes are too inflammed, often doctors recommend cold.

4) ointment before bedtime plus swimming google might be even better.
make sure you clean lids/lashes in the morning

5) ask your family members to check if you close eyes 100% when sleep.

6) blood tests for heavy metals, Vit. D, Zinc, etc.

7) accupture & chinese medicine: have you tried these?

8) wear Moisture chamber glasses, avoid smoke, sugar.

Lastly, keep learning/exploring new things. That is how I get it under control - pretty well now. Good luck!

[Hokucat]

Hi Edmund. So sorry to hear all that you've been going through. I went through several years of my own dry eye hell to the point I was homebound and in constant pain for several years, likely due to Sjögren's syndrome (autoimmune), worsened by reduced blinking from excessive computer use on the job and a long drive to/from work. I also had all kinds of other symptoms like dry mouth, very dry skin all over my body, joint and muscle aches, etc. But I am better now after doing probing to unblock my glands, finding the right diet changes to keep oils flowing/not have my glands get blocked up again and help immune system, and wearing sclerals to manage remaining dryness due to lost glands.

So I think you and WellEyes are right to suspect autoimmune or something else going on, besides past Accutane use. When you get back to the U.S., would recommend getting a comprehensive physical and blood panel that includes tests for autoimmune disease, hormone levels, thyroid, vitamin deficiencies, etc., AND also see a good dry eye specialist. Perhaps try going to University of Michigan (might not be real close to you but at least in your state, plus they have satellite locations), where they have the Kellogg Eye Center and likely many medical specialists like rheumatologists who can do a comprehensive exam. Often at these big medical universities, the eye doctors work with and refer patients to rheumatology and other doctors to help find the underlying cause of dry eyes. Plus these universities often have the best equipment and resources to help diagnose and treat the problem. University of Michigan is also a provider of PROSE scleral lenses, which are the ones I wear, so that could be available to you as an option down the road.

https://www.umkelloggeye.org/

I have to go to an appointment right now, but can write more later. Am glad you joined our forum...it can help you get up to speed a lot faster on resources and treatments, as well as we're all friends here wanting to support each other.

[WellEyes]

Hello Edmund,

Sorry to hear about what you are going through. It is indeed hell. I have been in it for the last 15 months. Though the sources of our dry eyes are most likely different. I had an aggressive blepharoplasty by a butcher-surgeon and started to have the issue most probably as a result of some damaged muscles in the orbital area. Your problem seems more like in the blepharitis domain. We are advised to wash the eyes with gentle soap twice a day...
I believe it is important to address to the root cause of our problem because we have to keep in mind: dry eye is not the disease, it is a nasty symptom of a disease/disorder that we have. In your case, please check auto-immune or thyroid diseases like you said. Or hormones? I agree it is very hard to find knowledgable doctors who are willing to go the extra mile beyond their textbooks in the medical school. Maybe you tried Azyter drops already? Though they are antibiotics as well...

From my personal experience, other than known antibiotics like Doxycycline which I believe can't be used forever, I recommend Lipiflow, warm compresses X2 followed by eyelid massage to help expression, lid hygiene and autologous serum drops to avoid corneal damage.

Depressive thoughts is a part of the game and it sucks. I am trying guided meditation apps from my phone, in particularly related to body's self-healing abilities.

I wish you best of luck. Praying everyday for all of us suffering from dry eyes and hoping for the day where we will have doctors to discover the underlying cause of this "symptom"

Regards

[edmunder]

Hello all, I just want to thank everyone because Ive read so much of the forum.

Me: 37 years old. Teacher. Been living in China for 10+ years.

I have had somewhat dry eyes my whole life, which it seems is related to my Accutane use 20 years ago. I simply never had very moist eyes or mouth for a long, long time. But I never had horrible effects from it. I always woke up with a bunch of stuff in the corner of my eye, eyes cleaned themselves at night. But when I woke up and drank a bunch of water I would get a lot of tears, that was my morning routine.

So about 1 year ago my eyes got really dry and I started to get several huge, abnormally large chalzion in both eyes. Huge things, bigger than even the worst pictures you have seen on the internet. I was in China so the doctor just said, warm water on the eyes, help it heal. I took a bunch of antibiotics and it got better, they went away. But as soon as I stopped taking the antibiotics my eyes would get these huge chalzion.

Then my eyes started getting really dry:

Went to the doctor about 6 months ago when I was in the USA.

He said most of my oil glands were doing ok, some were "frothy", a couple had been destroyed from the enormous chalzion. But I had to go back to China to work.

The doctor 6 month ago protocol: Doxy 100 once a day. Warm compress twice a day. Fish Oil. Eat healthy. So I went on a keto type diet of very low carb, low inflammation diet.

Things stayed relatively the same, which is that it was a bit painful and dry but livable. Good days and some bad days, but not terrible.

In the last few weeks my eyes became incredibly dry, my lids sticking to my eyes, my eyes becoming completely blood shot red and inflammation at 10/10. When I look at the insides of my bottom eyelids they are completely fire truck red.

My school year ends in 10 days or so and I fly back to the USA July 1st. I will meet the doctor July 2nd. If need be I will quit my job for the next year I can do that.

Sadly Im from Northern Michigan and there doesn't seem to be anyone in the Midwest that is an eye expert. I can go to Detroit and will see what is available. The local doctor in my small town is a nice guy but not sure what he will say.

Just starting the journey.

I will ask about help manually expressing the glands, seeing what comes out. Im worried because my eyes have been somewhat dry for a long time I might have damaged my glands, but they only got really bad the last few years. Though Ive never been able to use contacts since my eyes got so dry, so easily.

I also have a strange medical condition where my hands (EDIT before said eyes, but its hands cold) and feet are incredibly cold and clamy most of the time. Even in the summer. Plus I sweat sometimes from my hands, feet, body and armpits to the point where I can literally sweat out liters of water. Im not sure if that is related or if I have some kind of autoimmune problem that is now fully expressing itself.

Anyways, thanks for all the writing here. Its very dark for me now and am trying to meditate to reduce depressive thoughts.

Edmund