Chronic Urticaria - I'm miserable

[DysonSpheres]

So around 3 months ago I started experiencing sudden swelling of my face (lips especially, cheeks and eyelids) and then I became covered in urticaria rash. I am finding it difficult to breathe as it seems to be affecting my lungs. It actually feels like my lung capacity has been reduced. I run out of breath after talking too long or trying to walk or do activity in the house.

Put on a mega dose of antihistamine by my GP but although that helped stopped the urticaria, from appearing, it's done nothing for the facial swelling and my breathing is still hard.

I have an allergy appointment on the 18th November but the NHS must be struggling because its only a telephone appointment. I don't know how I'm going to manage till then. Trying to sleep is a nightmare and despite antihistamine before bed I wake up with swollen lips and tight throat.

I was alright, but it's really starting to get me down now. It's facially disfiguring and I don't like to go out, if I can avoid it. I've received no other help. Anyone gone through this or has any advice I would really appreciate it.

Thanks for the suggestions! @TheNosehasit It's frustrating because I already take Vit D and B complex although I'm rubbish at taking omegas.

Is the book by someone called Jack Challem? The link doesn't work but I'm looking on Amazon!

There's lots of tumeric options on Amazon to choose from.

Yes, it's the one by Jack Challem.

You need the turmeric with Black Pepper (apparently piperine aids the absorption of the turmeric).

Thanks!@Yarnosaur Honestly as I'm not have a straight case of acute anaphylaxis I can't get anyone to take it seriously. I think my G.P would like to help more but it seems she's at the end of what she can do.

Does this link work?

www.amazon.com/Inflammation-Syndrome-Nutrition-Health-Pain-Free/dp/0470440856/ref=sr_1_1?crid=298DXANENE4VM&keywords=the+inflammation+syndrome+by+jack+challem&qid=1666876763&qu=eyJxc2MiOiIxLjQxIiwicXNhIjoiMS4yOCIsInFzcCI6IjEuNDAifQ%3D%3D&sprefix=the+inflammation+synd%2Caps%2C193&sr=8-1

Inflammation is what happens when our body's own defenses turn on us - and it is a huge and growing problem. Written by the author of the groundbreaking Syndrome X, this essential updated edition of The Inflammation Syndrome draws on cutting-edge research conducted around the world to provide a revolutionary approach to healing inflammation-related problems through an easy-to-follow nutrition and supplement program.
Includes new recommendations for individualized diet and supplement plans
Presents 14 steps for restoring dietary balance, plus recipes and menu plans
Reveals the powerful role inflammation plays in a wide variety of common health conditions - from simple aches and pains to heart disease, obesity, diabetes, arthritis, asthma, and athletic injuries
Features dramatic case histories and the latest information on dosage recommendations for anti-inflammation supplements such as fish oils, vitamins, and herbs
Listen to The Inflammation Syndrome and learn just how easy it can be to take charge of your diet and health.
PLEASE NOTE: When you purchase this title, the accompanying reference material will be available in your Library section along with the audio.
Read less
©2010 Jack Challem (P)2017 Tantor

I can't remember the qualifications of the authors (and as it's an audiobook version I have, I can't have a look - but I'll try to have a listen). There a couple of contributors to the book I think.

@TheNosehasit I've purchased the kindle version, the opening chapter is interesting indeed, thanks, I'm going to do some serious reading. It's not like I'm sleeping much (bitter 😂)

He goes into a lot of molecular level of explanation, so you'll easily sniff out a fraud.

If it makes sense, and particularly if you're not buying it, I'd really love to bloody know because, as I've mentioned, I've a lot of medical people in my family who are massive sceptics so I don't mention it (I'm the idiot of the family).

48 hours after starting on high doses of everything and everything fucking vanished. I'm still not convinced it wasn't a placebo effect!

@LemonLimeWater Omg 17 years!!!!😧. Horrible. Were you on Prednisone everyday how awful. Happy to hear you're off it now (and that you could get off it). What did they do for you in A&E?

I went on Monday hopeful I would get some help and the consultant basically said, 'sorry it's specialist' and just prescribed yet more steroids. This is the third round😩. They are absolutely awful, make me jittery and snappy and make what little sleep I can get impossible. I really don't want to end up on them permenantly.

I'm currently taking 4 x Fexofendine a day and I top up with cetirizine and piriton on top mostly around evening/bedtime. It's all just about keeping 'it' whatever it is, from shutting down my breathing completely, but that is all

I really hope you find a solution. They are serious levels of meds.

Gardening and midges sets mine off

I have had it since childhood. My epipens are on standby. I have an autoimmune disease and I have had numerous skin tests - all negative.
I take x3 antihistamines daily of one type and then one before bed.
I spend 6 months of each year on steriods and Epipen about 6 times a year.

I know certain triggers but no foods or animals.

stress is a major factor for me - two years ago I went through the worse time in my life stress wise and I used 7 epipens in 10 days.

I know I am allergic to certain cars and the ‘leather’ seats so I have to sit in a car with fabric. I never change my washing powder ever. I wash in the same prescription soap.

for me it comes on suddenly - and within minutes my face swells and eyes shut.

I then need to Epipen.

my consultant I see every 3 months but he says in 90% of cases like mine they never ever find the cause - ever.

I am allergic to penicillin and I once traced a reaction back to someone on penicillin who had made me a cup of tea - and themselves - they had put their penicillin in their hand and clearly transferrred it to the mug

This is going to sound strange but my tween daughter suffered from this for a year last year. We tried everything, allergist, paediatrician, cutting out gluten, dairy, other high histamine foods. In the end, the only thing that worked and actually resolved it was daily, high dose probiotics (they are 60 Dollars a packet) but absolutely worth it for us.

@ThingsIhavelearnt
I developed asthma aged 14. I wonder does stress in the body maybe alter how the histamines work? They can't identify an alien causing the stress in your body so they start attacking everything? A bit like indiscriminate shooting of every perceivable cause of the upset to your body?

Ok.... now I have wandered into batshit territory...

It's ok - I'll just find the nearest psychiatrist lol. It's fine. Nothing to see here!

Tell me about it😟

A friend had this. Went nearly mad with it too. Discovered the link between histamines and food. And for her, nightshades (eg tomatoes, peppers) are triggers, and so are bananas. She now has the urticaria under control but is still v careful to not eat nightshades and limiting herself to half a banana. When her general resilience is low (she is tired or rundown) even a small amount of tomato sauce on pasta will set it off. Previously she was healthy as a horse and deeply sceptical of anything remotely woo (as she thought lots of dietary-relates stuff was 😬)

In my head though, it sort of makes sense.

So, you've your infantry (your histamines).

They're armed and ready to protect you from infections and they work really well - they're well armed.

I guess when your body is under attack physically (from a virus or a bacteria), the brain produces similar reactions to when the body is under threat from a lion or a bear or another stress-inducing threat? (I cannot confirm this).

HOWEVER, when you're under severe stress, your adrenalin increases, and all sorts of weird and wonderful things start happening in your body, designed to protect you from being mauled by lions or bears or bacteria or viruses.

When that immediate threat doesn't go away, and your brain continues to produce stress hormones, the infantry (histamines) are still armed and ready to go and they go a bit renegade to protect you as they know something isn't right.

They are very loyal to you so they start to attack indiscriminately as they're not sure who/what the threat is anymore so they trust nobody.

I like giving things personalities lol. It helps me process thoughts.

Wow that is crazy @ThingsIhavelearnt My heart really goes out to you. Ok, I'm not feeling quite so sorry for myself as before, reading what you're going through. And since childhood too. Oh my goodness! I hope there will some treatment break-throughs. It really sucks!

The penicillin in the cup shows how small a thing it takes to set a reaction off! Goodness. You can't be too careful. Interestingly, that is what I had in March, Penicillin and I reacted to it. I wonder how long antibiotics stay in your system?

They don't stay long in your system. You can look up their active life or whatever it's called online.

They are very loyal to you so they start to attack indiscriminately as they're not sure who/what the threat is anymore so they trust nobody.

Lol I could do with some disloyalty. I need a loyal lover, not a loyal histamine brigade.

We need a doctor or immunologist or something here to explain things (to me!) in terms that we might understand.

I like giving things personalities as it explains things to me in terms my pea-sized brain understands.

Most people prefer the scientific breakdown of what is happening (or at least an explanation of it in terms they understand).

Allergic reactions or inflammation are things that our bodies are doing in response to something (something they perceive as a threat).

Your histamines are on the warpath. I'd suggest he doesn't approach lol

Not at all! Apparently once you have one autoimmune condition, you're ripe pickings to develop another one...and another one ad infinitum. It must be because your immune cells are on hyper-alert 24/7. I want to turn mine off and that's what I'm going to tell the consultant

The swelling is really hard to deal with and I keep plastering my face with antihistamine cream. My lower lip hangs down and sticks out and hangs open all night.

@SiennaSienna Please do tell what brand it is. It doesn't sound crazy at all.

@wetpebbles Goodness how random.