Onset of anaphylaxis unknown allergen

[Aurorie11]

Looking for advice having spent 5 hours in A&E today.

Background, early 50s F minor allergy issues hay-fever for 40 yrs plus, bit of a reaction to a wasp sting couple of years ago but dealt with at home with antihistamines.

Yesterday woke with puffy face and neck both sides, no issues breathing etc. Went to pharmacy and given alternative antihistamines.

This morning at 5.30 eyes didn't feel right when looked in mirror welts under them took new antihistamine then. Made a cup of tea antihistamine had no impact and rash spread to neck/upper chest and upper back. Phoned 111 for advice who wanted to send an ambulance but I declined and drive myself to A&E.

Had adrenaline and IV antihistamines and hydrocortisone. Bloods taken, no issues there.

Discharged with 5 days of steroids and 3 days of antihistamines.

No idea what triggered this, racking brain to think of anything different to eat or new products used, but struggling to identify anything.

Doc at A&E recommended getting appointment with allergy clinic specialist, phoned GP and got GP appointment in about two weeks to ask for a referral.

Looking for advice/experiences please

These people have lots of helpful info, including what to expect from the NHS: www.anaphylaxis.org.uk/

Any of your normal products got the dreaded 'new improved formula'? Cosmetics, shampoo, soap, laundry products, cleaning products etc

You can just become allergic to things that have never bothered you before unfortunately.

My dad has something similar. Periods of extreme facial swelling (angioedema) with no known/obvious trigger. He carries an epipen and has a diagnosis of ‘acute chemical sensitivity’ which seems to mean things like washing powder, soaps, perfumes

Anaphylaxis U.K. as linked above are really good.

While you can remember, write down everything you ate, drank, used (toiletries, cleaning products, medications etc) for the 24 hours before each episode.

Middle of night/early hours ideopathic (unknown cause) anaphylaxis has fairly recently been linked to an allergy to alpha gal, a meat protein, an allergy which is triggered by a tick bite.

It's unlikely to be a reaction to something new. You can only be allergic to something you've encountered before and they can start at any time.

Can I just check that you've been discharged with 2 epipens?

Could something have bitten you in the night that you reacted to?

@Yarnivore no epi pens just tablets

Interesting - something similar happened to me some months ago. The good news is that it hasn't happened again so far (although it took a couple of days to completely resolve). I'm still waiting for my appointment following a referral though, so don't know the cause.

I was advised to keep a diary of food/products/activities and any symptoms, and to carry antihistamines. As you were given adrenaline (I wasn't) you may also want to ask if an epi-pen is needed. The main issue for me so far has been worrying about it happening again, to be honest. Best wishes, and hope you get some answers soon!

It sounds like idiopathic urticaria. I had it last year almost exactly as you describe (i have existing allergies with anaphylaxis so had epi pens administered) and when I saw the allergy specialist they said as it had no trigger (woke up with it just like you), it was just urticaria and not anaphylaxis. They did run an allergy panel via blood test and nothing new came up and I definitely didn’t consume my allergy. It was just one of those things, it’s happened since but I have a treatment plan now

Could it be LFT/PCRs I’m sure after I did a throat swab my throat felt like it was closing in and my tonsils would swell- has been fine since just nose…!

You need to identify whether this event was actually anaphylaxis or not. I'm not convinced because of the development time, despite the other symptoms you described. Anaphylaxis is characterised by a rapid onset, as well as what you've described. The hospital should have taken a blood test called a "mast cell tryptase" - straight away then repeated the test around 90 minutes later and compared the two. This blood test will definitively tell you whether your reaction was anaphylaxis. I'm a paramedic by the way.

@Yarnivore
allergy which is triggered by a tick bite.

Would you mind saying more about this? I was on antibiotics for an infected tick bite and had a terrible reaction but they said it was to the antibiotics not the tick bite. Thanks

I had a sudden and similar experience, weals all over my body and lips swelling so I could see them. 119 sent an ambulance, hospital cut off rings, treated me, kept me overnight. It has never happened since.

The culprit, according to the Drs at the hospital seemed to be a Boots Lemon Cough Mixture.

After I returned home, I took the bottle to Boots, thinking they would like to know the contents seemed to have been responsible for the anaphylaxis event, and records were kept of this sort of thing.

Pharmacist not remotely interested. She just said "Well you can't have your money back, you opened the bottle".

And to add, it is bloody scary having anaphylaxis

I have wheat dependant exercise induced anaphylaxis which is a crap descriptor as it's not just exercise but alcohol, menstruating, heat/cold, NSAIDs and stress can all be co-factors. It's taken me 25 years to get a definitive diagnosis.

@feltpens25 can I ask please what your treatment plan includes?

Anaphylaxis is not always immediate.

Alpha gal and food dependent exercise induced anaphylaxis are 2 examples where anaphylaxis can be many hours after ingestion of the allergen.

@thingymaboob only one blood test was done

[quote OnceuponaRainbow18]@Yarnivore
allergy which is triggered by a tick bite.

Would you mind saying more about this? I was on antibiotics for an infected tick bite and had a terrible reaction but they said it was to the antibiotics not the tick bite. Thanks[/quote]
www.anaphylaxis.org.uk/knowledgebase/tick-bites-and-allergic-reactions-to-red-meat/

You can find more if you Google it!

[quote OnceuponaRainbow18]@Yarnivore
allergy which is triggered by a tick bite.

Would you mind saying more about this? I was on antibiotics for an infected tick bite and had a terrible reaction but they said it was to the antibiotics not the tick bite. Thanks[/quote]
It isn't an allergy to the tick bite, it's that the tick bite triggers a reaction that later presents after eating meat with the protein.

Useful paper on anaphylaxis myths (it's a paediatric paper but applicable to adults too):

www.ncbi.nlm.nih.gov/pmc/articles/PMC6317446/

What had you eaten the night before OP, out of interest?

Op, my treatment plan is fexadendine antihistamines and then a course of steroids. The stronger anthistamines really seem to nip it in the bud. I was absolutely covered in the rash, it honestly looked like I’d been scalded the welts were so bad. Luckily nothing has been so severe since. I hope you feel better soon and get some answers

@Swirlywoo

Fresh bread (part baked rolls), pate, some spicy chicken bites. Leftover forest berries and apple crumble

Just thinking if it could have been caused by something in your wider environment, rather than something you’d eaten etc. A relative of mine had a very nasty reaction to a Christmas tree, - it is known as Christmas tree syndrome . Quick google indicates that an anaphylactic reaction would be extremely rare but thought I’d mention it just in case - if you’ve been to houses with one over the Christmas period x

Sounds so scary!

I had an anaphyactic type of reaction, which was not one, but it turned out was a reaction to some histamine in some fish. Since then I always carry on me some extra strength antihistamines. (But it doesn't sound like that.)

I have also had a random utartica reaction once from nowhere but not as bad as yours. I think mine was a reaction to some body lotion.

Hope you get some answers.