Puffy lids revisited

[Mawsky]

Ok, would love to know I'm not entirely alone with this, I had a procedure and was given a med. That causes dryness, of mouth, sweating, and tho it was not mentioned apparently my eyes. I was doing so good, now had a bout of real dryness, followed by corneal abrasions. So needless to say lots of saturating drops later, my lids look like hotdog buns, and eyes so irritated and dry. (no longer on med.) so who has a thought? Is it the dryness that caused the puffiness or the drops? It's like they are fluid filled, so thought maybe the amount of drops was the problem, like soaking too long in a bath. Any suggestions? I tried cold compresses, warm seems to make it worse. Thank you for any input, cause it seems that when my eyes are bad the lids are always puffed up.

[lulu]

Hi mawsky
What a nuisance, I know how you feel when you have been doing well, its actually as depressing as having the blasted condition! I suffer from really horrible dry eyes and have recently developed a nasty sharp grittiness. But what interests me is (if you dont mind me asking), what drug did you take? was it a painkiller by any chance? Prior to having this "latest" problem I had been doing not too bad and had been coping but in the 2 weeks prior to this kicking off again, i had taken co codamol 30g tablets on 3 consecutive nights of one week and on 1 night the week I noticed it again. I might be barking up the wrong tree but I am racking my brain to see if it was anything different I had done, and this is my only thought. Do supposedly(diag via a lip biopsy,but still sceptical) have sjogrens but whatever it is, I am clearly suseptible to triggers due to underlying problem. I dont find any relief with either hot or cold compresses either. I hope that it soon settles down, my thing is now in its 3rd month!
Lulu

[Mawsky]

Hi lulu, the med I took was hyoscyamine, one of the common side effects is dry mouth, so I'm sure it was this med that got the ball rolling. Do your lids get all puffed up too? I'm sorry your having a bad spell right now too. My blood work for sjogrens was neg, I don't have dry mouth, or anything else going on. What drops are you using? I found that I am allergic to theratears as my eyes were so itchy, I switched to similasan allergy eyes and that's when they cleared up, the best they had done ever. I did get some systane ultra because the "grittiness" was unbearable. don't know what to do right now, hard to know if your making things worse or better??

[lulu]

Hi Mawsky
I looked up the medication that you took and was concerned to see that it is also used to DRY up the slcretions in illnesses like Parkinson’s so I would not hesitate to suggest that that might well have kicked off your nasty spell of dryness.
I do not get a lot of big puffiness but I will occasionally notice that after using the cyclosporine ointment which is our version of restasis, I will get a little puffiness. I was never able to use Lacrilube ointment because I suspected that either the petroleum or lanolin or both was causing my eyes to redden and although it seemed to protect my eyes at night back in 2007, it did cause them to feel a little uncombtable. I have no choice to use this ointment once a day at nightime as its the only way of getting the cyclosporine into the eyes. It had maize oil in it as well. My eyes are so awful at the mo that even the ointment is drying my eyes like hard balls whereas it was more soothing when I was first prescribed it 20 months ago. I had a good spell from last May 2010 so I attributed it to the cyclosporine?
I too use Systane but not the ultra, have you found that the ultra has helped the grittiness at all? I recently changed to Clinitinas soothe and alternate it with Blink which is also Sodium Hyluaronate based as the grittiness started when I was still using the systane. But its still here, so lord knows what to use.
Is your grittiness or foreign body sensation a usual feature of your dry eye? It sound as though it has escalated at the moment though? Is it worse at different times of the day for you.? Is there anything you do that helps it at all, even if only a small amount? I feel as though there is something under different parts of my eyelids, not always in the same place. I try not to rub it as it just seems to come back and I am trying to get used to the feeling as I am frightened it will be here for a long time. Sometimes I admit to rubbing it just for a rest. Heat and Cold really aggravate it but I always have a humidifier on and have now worn wrap arounds for 4 years, even when feeling a bit better during good months.
To be honest I did not drop but once or twice a day during this last remission as I am always concerned that if one drops too much, you can potentially shut down the natural tear mechanism. Maybe I should have dropped more, who knows?
During my first real attack in 2007 my worst sensation was dryness which mutated into pain and that lasted 5 months or so, the last attack in 2009 was a bone dry sensation which lasted over 7 months and now I have this grittiness that I know is a descriptor of dry eye but so far it had not been that much of a problem until now. I hate it, just hate it. Compresses do not work for me either. Actually the sensation has succeeded in putting me off my food and when I checked on my Mums scales last week (i often jump on them when i use her bathroom) I have lost 20 pounds in only a few weeks, so although I look better, I feel awful.
I hope that you can start to feel better, I have not to give up hope that I will either. Its not that I am a wimp, I have other chronic conditions to accommodate which are pretty much troublesome most of the time, but somehow I can manage them better than this one.
Sorry about long ramble, clearly a lot on my mind. You are always welcome to PM me if you want or I can offer any help. Lulu

[PotatoCakes]

For the puffiness, have you tried cold, green tea bags over your eyes? An MD suggested it to me and while I don't do it a lot, I've found it really does help if I've been "crying". I know the cause of your puffiness is different but it might help some?

[Mawsky]

Hi thanks for the green tea bags treatment, I will give it a try. lulu, I'm so sorry to hear you are having such a rough time, and no real relief from drops. I did try the restasis but found that it caused so much burning and I did not produce one tear during the five months or so I was on it. The sustain ultra helped with the profound irritation I was having in my eyes, it has polyethylene glycol and propylene glycol as it's active ingredients, I was looking for something preservative free that did not contain the same as Theratears. Sometimes Im not sure if I have something actually in my eye, like a small string of fuzz, or just one of those small bumps I get on the lid margins, I will run my clean fingernail along them to pop them, I have found that bring relief sometimes. Do you have any other symptoms of Sjogrens? Did you ever have the bloodwork done for it? Was it neg? I really don't want to have sjogrens, but am wondering if I need a lip biopsy to really know if I have it? I do not produce any tears when I cry, but I do not have dry mouth, or anything else as far as I know. Can you order Similasan allergy relief drops off the Internet? It may be worth a try, but my suggestion would be to try and use one at a time, so you will know if one is helping or not, also I noticed that if I put in some Genteal gel, and follow that with any drop it burns like crazy, the only thing I can figure is that the combination creates a chemical reaction. So it makes sense that it would not be good. Let me know what happens next. Hope you can find the drops, as they have seemed to help me a lot.

[lulu]

Hi mawsky

Hi thanks for the green tea bags treatment, I will give it a try. lulu, I'm so sorry to hear you are having such a rough time, and no real relief from drops. I did try the restasis but found that it caused so much burning and I did not produce one tear during the five months or so I was on it. The sustain ultra helped with the profound irritation I was having in my eyes, it has polyethylene glycol and propylene glycol as it's active ingredients, I was looking for something preservative free that did not contain the same as Theratears. Sometimes Im not sure if I have something actually in my eye, like a small string of fuzz, or just one of those small bumps I get on the lid margins, I will run my clean fingernail along them to pop them, I have found that bring relief sometimes. Do you have any other symptoms of Sjogrens? Did you ever have the bloodwork done for it? Was it neg? I really don't want to have sjogrens, but am wondering if I need a lip biopsy to really know if I have it? I do not produce any tears when I cry, but I do not have dry mouth, or anything else as far as I know. Can you order Similasan allergy relief drops off the Internet? It may be worth a try, but my suggestion would be to try and use one at a time, so you will know if one is helping or not, also I noticed that if I put in some Genteal gel, and follow that with any drop it burns like crazy, the only thing I can figure is that the combination creates a chemical reaction. So it makes sense that it would not be good. Let me know what happens next. Hope you can find the drops, as they have seemed to help me a lot.

thanks for the reply. I did have the bloodwork for sjogrens and it was Negative! My lip biopsy was a bit ambiguous really, "mild inflamation" found on what they could biopsy. The woman who did the biopsy said that my salivary glands did not show that easily and that sometimes that could be an indication of sjogrens but when I spoke to another consultant at another hospital who specialises in auto mimmune problems, she said that she feels that mild non specifice inflamation is not necessarily an indication of sjogrens!! So back to square one. I do have anti phospholipid syndrome which means my blood tends to stick, this is auto immune but is also found in a small number of the healthy population too and one gets older sometimes. However, I do have quite severe interstitial cystitis which was confirmed on a biopsy some years ago, people with sjogrens do tend to have this, but a lot dont. I have dry mouth which I can deal with. I also have a history of miscarriage. Im tired a lot of the time and have aches and pains so who knows.
I am glad that the systane ultra does help with that grittiness, I think we can get it but it is expensive, might try it though. The systane normal I was on which also has the ingredients you mention, has not helped me at the mo, which has lead me to switch to the other ones. The bumps you mention, are they in connection with bleph or MGD? I have insoected my lash line and cannot see the bumps.
Hope you feel better soon.
Lulu

[Mawsky]

Hi, Lulu thanks for the extra info, I'm with you it doesn't seem like your biopsy really confirmed anything, I have known people with pretty severe interstitial cystitis, and no sjogrens, an like you said a lot of people with sjogrens don't have it. Do you have tears when you cry? I hope that the sustane ultra helps you. the bumps on the lids are normal, I think they are from the MB's but don't mean you have a problem, when I was using baby shampoo it seemed to make me have lots of them, they can make you feel like somethings in your eye.

[MaryVa61]

I really thought I had Sjogren's too, had so many symptoms and associated disorders, but lip biopsy only showed minimal inflammation, so it was ruled out. Since identifying more of my chemical skin allergens, and finding more things at home that had those in them (especially formaldehyde) and throwing them out, I no longer have any dry mouth and my eyes are dramatically better. I get custom tests on allergy med/dye ingredients next week to finalize the allergen search.

My lids used to have the "hot dog bun" swelling for years. Never knew exactly why and I rarely get that anymore. Also don't have all those little bumps on edge of lids anymore. Couldn't use baby shampoo for eye scrubs because of the formaldehyde in those. Even the natural brand bothered me though, and I don't know why. I only use saline wound wash and swabs for scrubs now.

Just an FYI, when I do react to something (medication, skin or hair care products...), the onset is somewhat gradual and I never realize at first that it's an allergic reaction. If it's a one-time exposure or I stop the exposure, the peak of trouble is from a couple days after exposure to about a week after, but the dryness and irritation continue (but milder) for a few weeks. I've learned to diligently avoid BAK, and many other eye care products are a problem, even unisol 4 and most preservative-free drops. And most fabrics that touch my face. Have to be careful where I rest my head.

And you can get Similasin Allergy Eye Relief online. It's also at my local Rite-Aid and The Vitamin Shoppe.

Mary in VA