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I have registered with DEZ and am posting below on behalf of my girlfriend, Sarah, who has been suffering from DES for the past 3 yrs. This was originally posted as response to a success story but thought I'd post under this topic too. Sorry new to message board and don't know how to crosspost.
Thanks for your post LRDES. New to the board but not new to the hell that is DES. I will post my entire story at a later date (2.5yrs into the ordeal) but am too exhausted to get into all details right now. Long story short had my DES largely under control after also going through an acute phase. Eyes were only mildly puffy, was left with a pigucuela after acute phase and also had to do warm compresses daily, restasis, lid scrubs, night ointment, etc. At this point I had all of my eyelashes and my eyes were white and clear for the most part and had "sufficient" moisture (schirmers of 5 & 7) on my eyes. The warming compress that I was using (CVS reusable heat therapy pack for first aid - same thing as thermoeyes insert but much bigger and lasts longer - wrapped in thin, moist towel) was working - I could literally feel the MG become unclogged, "the goo" would release very noticeably on my right eye and somewhat on my left eye. Unfortunately, I found a supplement GABA (beware this supplement or others that contain it if you have DES especially MGD) to help with my anxiety (again will post full story later) which worked tremendously well for my anxiety but long story short within three weeks I was super calm, felt great emotionally, didn't even care that my eyes had gotten noticeably more swollen. Both my eyelids and my eyeballs actualy started to swell. Eyes were extremely irritated and sensitive, eyelashes turned white and became limp but i still didn't really care because i was so mellow from GABA (thought i had found a miracle cure for my anxiety) until it went from double vision, to blurry vision, to completely not letting me look at anything at all because it felt like someone was sticking knives in my eyes, it became so painful (shooting pains in my eyeballs) that I could not look at anything - it "stopped my vision". I was also no longer getting any "goo" when using my warming compress. Eyes were so sensitive to everything that my entire routine was shot because anything and everything I did for my eyes was so painful. One upside prior to the actual vision stopping was that my blood pressure had gone down sufficiently that my eyes were white again vs bloodshot red all the time. Stopped taking the GABA at this point due to eye problems but ended up going on and off of it many times over the next year+ as positive benefits for anxiety were so great. I now know that it sent me into withdrawal as well as into klonopin withdrawal from klonopin i was taking, yes there is a hell far worse than DES alone, try DES with klonopin withdrawal (massive panic attacks, anxiety, insomnia and my eyes bulging out of my head). You can see how going this type of med (benzo for anxiety) does not work well with DES. I am now left with very dry (like the sahara), extremely sensitive, irritated eyelids and eyes, thickened eyelid margins, painful vein on my eyes, blurry vision and my skin in general and especially on my eyelids is very thin due to constant anxiety and insomnia over past 2yrs. Host of other horrible side effects that I won't get into.
My only beef with my old system (pre GABA mess) was that it left a mess of spider veins all over my eyelids from doing the hot compresses every day. It's also difficult to implement due to weakened physical condition and poor skin quality. I also have now what I refer to as "stress-eritis," bleparitis caused by severe anxiety attacks throughout the day due to klonopin withdrawal. Anyone reading this, I am not some drug addict or recreational user this was prescribed to me for GAD (generalized anxiety disorder). More on this in my full "story" post.
I have added the tranquileyes (TE) to my routine by wearing them overnight. I do have beef with the tranquileyes Eventhough they do seem to help restore some moisture to my eyes. After reading your post and another persons post in which she described her eyelids swelling after using TE i am wondering if there are others out there having similar experience with eyelid swelling due to warm moist environment around the eyes created by the TE when worn overnight. This seems to make sense since warm moist environment would increase blood flow.
My questions are:
1-has anyone else experienced this swelling when using TE overnight?
2-I would like something positive to come out of all of this and would like an alternative heat source for the mgd as my previous one created veins on my eyelids Even though it worked. I noticed that you specifically were using the thermobeads for mgd expression. How did they work for you? Or anyone else reading this. Specifically, do you use the white pads between your eyes and the beads? How hot do you make water to soak beads in? And how long does it take for them to get warm? And how long do you leave them on your eyes before attempting to express your MG? And has this method of not having heat directly on lids created any veins on your eyelids?
Basically I'm looking for a new warm compress system to use in the morning, in junction with TE, and am concerned about swelling from using TE overnight and applying too much heat to already damaged eyelids. Are the thermobeads, even though they don't directly contact the eyelid effective enough to get the goo out? I don't want to have to revert to my old system due to the fact that TE puff up my eyelids at night and I'm not comfortable with that direct heat on already puffy lids. I will revert to old system if I have to because I know this system will eventually work again but I want to be able to continue using TE at night as they give me more moisture in the morning.
Thanks for your post LRDES. New to the board but not new to the hell that is DES. I will post my entire story at a later date (2.5yrs into the ordeal) but am too exhausted to get into all details right now. Long story short had my DES largely under control after also going through an acute phase. Eyes were only mildly puffy, was left with a pigucuela after acute phase and also had to do warm compresses daily, restasis, lid scrubs, night ointment, etc. At this point I had all of my eyelashes and my eyes were white and clear for the most part and had "sufficient" moisture (schirmers of 5 & 7) on my eyes. The warming compress that I was using (CVS reusable heat therapy pack for first aid - same thing as thermoeyes insert but much bigger and lasts longer - wrapped in thin, moist towel) was working - I could literally feel the MG become unclogged, "the goo" would release very noticeably on my right eye and somewhat on my left eye. Unfortunately, I found a supplement GABA (beware this supplement or others that contain it if you have DES especially MGD) to help with my anxiety (again will post full story later) which worked tremendously well for my anxiety but long story short within three weeks I was super calm, felt great emotionally, didn't even care that my eyes had gotten noticeably more swollen. Both my eyelids and my eyeballs actualy started to swell. Eyes were extremely irritated and sensitive, eyelashes turned white and became limp but i still didn't really care because i was so mellow from GABA (thought i had found a miracle cure for my anxiety) until it went from double vision, to blurry vision, to completely not letting me look at anything at all because it felt like someone was sticking knives in my eyes, it became so painful (shooting pains in my eyeballs) that I could not look at anything - it "stopped my vision". I was also no longer getting any "goo" when using my warming compress. Eyes were so sensitive to everything that my entire routine was shot because anything and everything I did for my eyes was so painful. One upside prior to the actual vision stopping was that my blood pressure had gone down sufficiently that my eyes were white again vs bloodshot red all the time. Stopped taking the GABA at this point due to eye problems but ended up going on and off of it many times over the next year+ as positive benefits for anxiety were so great. I now know that it sent me into withdrawal as well as into klonopin withdrawal from klonopin i was taking, yes there is a hell far worse than DES alone, try DES with klonopin withdrawal (massive panic attacks, anxiety, insomnia and my eyes bulging out of my head). You can see how going this type of med (benzo for anxiety) does not work well with DES. I am now left with very dry (like the sahara), extremely sensitive, irritated eyelids and eyes, thickened eyelid margins, painful vein on my eyes, blurry vision and my skin in general and especially on my eyelids is very thin due to constant anxiety and insomnia over past 2yrs. Host of other horrible side effects that I won't get into.
My only beef with my old system (pre GABA mess) was that it left a mess of spider veins all over my eyelids from doing the hot compresses every day. It's also difficult to implement due to weakened physical condition and poor skin quality. I also have now what I refer to as "stress-eritis," bleparitis caused by severe anxiety attacks throughout the day due to klonopin withdrawal. Anyone reading this, I am not some drug addict or recreational user this was prescribed to me for GAD (generalized anxiety disorder). More on this in my full "story" post.
I have added the tranquileyes (TE) to my routine by wearing them overnight. I do have beef with the tranquileyes Eventhough they do seem to help restore some moisture to my eyes. After reading your post and another persons post in which she described her eyelids swelling after using TE i am wondering if there are others out there having similar experience with eyelid swelling due to warm moist environment around the eyes created by the TE when worn overnight. This seems to make sense since warm moist environment would increase blood flow.
My questions are:
1-has anyone else experienced this swelling when using TE overnight?
2-I would like something positive to come out of all of this and would like an alternative heat source for the mgd as my previous one created veins on my eyelids Even though it worked. I noticed that you specifically were using the thermobeads for mgd expression. How did they work for you? Or anyone else reading this. Specifically, do you use the white pads between your eyes and the beads? How hot do you make water to soak beads in? And how long does it take for them to get warm? And how long do you leave them on your eyes before attempting to express your MG? And has this method of not having heat directly on lids created any veins on your eyelids?
Basically I'm looking for a new warm compress system to use in the morning, in junction with TE, and am concerned about swelling from using TE overnight and applying too much heat to already damaged eyelids. Are the thermobeads, even though they don't directly contact the eyelid effective enough to get the goo out? I don't want to have to revert to my old system due to the fact that TE puff up my eyelids at night and I'm not comfortable with that direct heat on already puffy lids. I will revert to old system if I have to because I know this system will eventually work again but I want to be able to continue using TE at night as they give me more moisture in the morning.
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