Help!

[hannahmaywils]

So its me again!

I am having an absolute nightmare. I have really bad swelling of my eyelids, I also feel a lot of pressure from behind them as if somebodys trying to pop them out my head!

I dont mind this really, but its exacerbated my dryness again and thats whats making me miserable. I haven't been able to work because of this, which is really annoying because I am a contractor and don't get paid for time off.

Does anybody have any recommendations?

My GP gave me doxy for a month but has done nothing. I am now being referred to a specialist in Liverpool. I have been tested for SS and all the other auto-immune tests and they are all negative. People have been saying it was an allergy, so was prescribed Opatanol, not helped in the slightest.

Im desperate now. I am using my eye drops every 20 minutes or so.

Steroid eye drops?

I would be grateful for any advice

Thanks

[farmgirl]

Hi Hannah

It could be that you are allergic to whatever you are putting in your eyes. You are probably only pouring drops in every 20 min to temporarily sooth the burning and stinging (I know because I have done it myself), not because it is dry per say, it only feels dry due to the discomfort. Putting drops in that often is not good either because it disrupts what tear film you do have.

I resorted to non preserved saline and my eyes got about 60% better within days. I had the pharmacist order it in for me in the 5ml nebulizer vials by Mylan Ritepak or AddiPak. Once opened I cap them with a Sustaine non preserved vial cap or Biontears works as well. Once opened I will throw the vial out if I haven't used it up within a week.

I went from drops every 20 min, especially in the evening to maybe one every 2 hours. I can often go a good part of the day, sometimes all day with none since I quit irritating my eye with OTC drops. I still will add one OTC drop every now and again if I find I am using the saline too often but I won't use the same brand twice in a row.

Opatanol is preserved with BAK - stop using it immediately, especially if it is not helping. FROM THIS POINT FORWARD DO NOT PUT ANYTHING INTO YOUR EYES PRESERVED WITH BAK.

I find at times if I get a flair and I am not sure if there is bacteria involved I will use a course of non preserved steroids by Bausche and Lomb with non preserved Vigamox antibiotic which I can tolerate well, this seems to help even if bacteria is not the direct culprit.

[MGD1701]

Could you be a bit specific, do you have
burnning, red, itchy, tearing eye, (yellow, clear?) discharges, pain too?

did you change warm compress, lid hygiene, massage too often, too long, too hard?? Do you feel great after compress?

Did you use new drops, new medication?

Cold compress: cold compress should help. Have you tried?

[hannahmaywils]

Thank you for the feedback guys.

Farmgirl I will have a look at those drops. I am UK based, so not sure if they will have them here, but maybe have the equivalent. Unless you order it online? The drops I am using are Hylo Forte preservative free and phosphate free- they contain sodium hyaluronaye 0.2% if you have any idea what that is ?!

Thanks a lot for you advice. Like i said im going to push for the lip biopsy in my next consultation. My blood work came back negative for ss.

MGD1701- I have red, itchy, stinging swollen eye balls right now. No discharge, not pain, more like a strange pressure feeling, like my eyes are trying to pop out my head. I think it's giving me headaches as well

I do warm compress, lid hygiene. Ive just ordered the blephasteam goggles they dont do much if im honest but maybe thats because my eye lids are inflamed.

So the only thing I can think in terms of an allergy is the castor oil eye drops I bought about 2 months ago. I read a lot about castor oil and i brought them with me for my skiing holiday, which btw was an absolute disaster. So the swelling came on shortly after this, and has pretty much stayed ever since. I haven't used the castor oil eye drops since that holiday two months ago. Possibly this then ?!

I have a cold compress yes, I can give that a go.

ergh its so draining honestly. I felt like my eyes have gone from being 75% good to now 30%. It's really starting to get to me now.

[MGD1701]

sounds like allergy.
Once I used a drop with castor oil, if I remember correctly,
I got headache, right away.
One year later, I tried it again, same thing happened

[hannahmaywils]

Yes it might be, but its gone for two months now? I just dont understand why it's not going away!

Farmgirl- how are your eyes now? If im correctly your eyes were caused by birth control?! How old are you if you dont mind me asking. Have either of you been prescribed steroid eye drops?

[farmgirl]

I am late 60's and have Sjogrens my problem is not due to BC. My eyes are awesome compared to what they were when i was using eye drops. The sensitivities developed slowly over time but anything with oils is out of the question and BAK is immediate. I doubt you are still suffering months later from the castor oil, I suspect your ongoing problem is that you keep putting stuff in them that you are sensitive to which could be almost anything. I do use the hylo forte drops at times if I need a drop other than saline but like I said I switch them up so I don't use the same kind twice in a row.

I just typed addipak and a bunch of sites came up so if the pharmacy can't order them they are easy to access. BTW I have saved a fortune by not using OTC drops. A pack of these will last a year or more.

I use the non preserved steroids and like I said before:

I find at times if I get a flair and I am not sure if there is bacteria involved I will use a course of non preserved steroids by Bausche and Lomb with non preserved Vigamox antibiotic which I can tolerate well, this seems to help even if bacteria is not the direct culprit.

[Rebecca Petris]

I also feel a lot of pressure from behind them as if somebodys trying to pop them out my head!

Have you experienced any changes in vision?

What relieves the pressure?

How did the dr explain the feeling of pressure? How soon are you seeing the specialist?

[hopeful_hiker]

I find at times if I get a flair and I am not sure if there is bacteria involved I will use a course of non preserved steroids by Bausche and Lomb with non preserved Vigamox antibiotic which I can tolerate well, this seems to help even if bacteria is not the direct culprit.

farmgirl, I am curious, what is the name of the steroids? I am also in Canada.

[farmgirl]

Bausch + Lomb Minims
Prednisolone Sodium Phosphate 0.5%

[hopeful_hiker]

Bausch + Lomb Minims
Prednisolone Sodium Phosphate 0.5%

Thank you!