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Cheryl M

Senior Member
Messages
115
Location
North-west England
Tl;dr i had a reaction to nasal steroids.

I have nasal obstruction. THis has never been diagnosed or treated; two ENTs stuck a camera up my nose and found nothing. My GP basically told me "You're lucky you were able to breath through your nose for 36 years, because some people don't get to do it for that long," and presrcibed mometasone spray. I've used it before, a few years ago, without incident, and I was not known to be allergic to anythgn. I used the mometasone spray last weekend.

I have long-standingg seborrhoeic dermatitis on my face, and last year it migrated to my eylids. (Apparently this is called seborrhoeic blepharitis.) My GP has not seen me, with her eyes, since the start of the pandemic, since everyting has been done by phone. SHe does not know I have the blepharitis. I forgot she didn;t know.

On Monday I woke up abd discovered my lower eyelids had puffed up massively and were brght red. I looked as if I'd been punched in both eyes. The blepharitis was flakier than usual. I finally looked up seborrhoeic blepharitis on the NICE website (shoud have done this earlier, I realise) and discvered the advice "Do not use topical steroids".

They also said to wash your eyelids and waterline with heavly diluted baby shampoo. I did this. Soon afterwards, started to have shortness of breath. There was a huge lump in my throat. I have an emergencey inhaler (although I'm not asthmatic; long story) so I took it. Went outside for frsh air; coughed so hard I gagged and started to vomit; coughed so hard I sprained my tongue (we get the most ridiculous inujuries with ME, don't we...) Took paracetamol and loratadine, which is an antihistamine. Nauseated for hours, but eventually started to feel better.

The following morning the skin of my lower eyelds peeled off in one piece like a big piece of paper. I started to feel better. Sweling went down and I am now almost back to normal altough my eyes look rather pouchy. I'm still washing lids with the baby shamppoo, applying hypoellergenic face cream to them, and I have obviously not taken the mometasone again.

Talking to the doctor (by phone again) tomorrow. I will make sure to tell her about the blepharitis (though I won't use that word upfront, lol). I think what happened to me is called angioedema but I am definitely not going to use that word on the GP either. Am hoping that what happened is a "normal thing" which she will understand, not an "ME thing" than she definitely won't. Unfortunatly, I suspect my chances of getting anything done about the nasal obsruction are receding even further into the distance...
 

BrightCandle

Senior Member
Messages
1,162
Holy yikes that is just awful.

My personal experience with nasal steroids is they just made my nasal blockage worse and I developed polyops. I get crazy reactions to steroids of any type, oral or spray I become a raging ape and gain weight so fast. I hate steroids.

The steroids are to some extent just a band aid to try and take down the inflammation. Have you tried nasal netti pots? The squeezy bottles work better for clearing out the sinus cavities as the pressure allows the water to get in there better than the pot in my experience.

More aggressively I have found adding iodine mixed in with the salted water seems to be more effective. I have found using 15% iodine as 0.5g for a 240ml netti pot is bearable, it really doesn't require more than 2-4 drops to make quite an impact. You can use quite a bit more iodine safely but frankly I wouldn't its ummm "unpleasant".

As a side on how I found this out I have been doing some pretty horrific things with my nose and throat recently based on the Japanese infection findings of the area at the back of the nasal and throat cavities sustaining infections of the vagus nerve. I am trying to find something I can actually stand, unpleasent really doesn't cut it as a word for this experience so far. This is one of the most horrifically awful set of things I have done to myself and I have not talked about it because I do not yet have something that I think works. Maybe 0.5g in 240ml netti pot does over a period does but I am still in the testing phase. It definitely clears my sinus and nasal passages for a few days (this isn't actually my goal). The people undergoing this Japanese procedure for minutes have to be sedated there is no way they are doing this awake.
 

Cheryl M

Senior Member
Messages
115
Location
North-west England
Thanks for responding, hope the nose things work out for you. I have used nasal saline before and it doesn't really seem to make much diference unfortunately. I'm also terrified of doing anything "weird" (so to speak) in case it makes everything even worse, and then I'll have to admit to the doctor that I causedd the problem...
 
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