Debilitating hayfever at the end of my tether

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I don't know where else to turn. I am hoping, praying someone out there has suggestions for what I can do to bring down my hayfever symptoms.
I have tree and grass pollen allergies so suffer all year round with moderate symptoms. Then I have fullblown attacks where I am wheezing ( i don't have asthma) my eyes swell almost closed, headaches from the sinus pressure, my face blisters up, im dizzy and lethargic and I ache all over. I cannot breathe through my nose at all so my mouth is dry, gums are sore and its hard to swallow, my jaw aches. I can't drive, I can't focus on work during these attacks. They happen 6-7 times a year and last around 5 days at a time. Then the rest of the time I still have more moderate hayfever i never get a break.

When i tell you I have tried EVERYTHING. I am prescribed fexofenadine 180mg and this didn't work on its own so I've tried taking more than one a day (doc said this was fine). Bought my own cetirizine, loratadine, clorphenamine etc. Have tried every nasal spray, eye drop etc under the sun, both prescription and OTC, and no combination of any of these things seems to bring my symptoms down or prevent these attacks.

I do all the right things, drying bedding indoors, showering and washing my face when I come in from outside, changing clothes, use the hayfever wipes and sprays and the pollen barrier balm, all of it. I have tried the hayfever injection, two doses of it, and it didnt relieve my symptoms. I get no reprieve whatsoever and I am exhausted.

I literally don't know what else to do. Please please please does anyone have any recommendations of what i can try?

I take antihistamines every day of the year as prescribed and then as symptoms get worse or hayfever season is due I take extras.

My GP is a fellow hayfever sufferer and was happy to refer me on. First to local hospital but consultant was unhelpful and clinic too small, so GP rereferred me to regional hospital. All NHS. Once I was seen at regional hospital, first appointment testing, second appointment to discuss results and implications of desensitisation, third to start 1st course of treatment, fourth for 2nd course and then Covid hit, did do 3rd course but never had follow up to test results etc.
It’s a game of thirds, one third of participants will need no further meds, one third will find symptoms reduced and the final third will not see a difference. I’m grateful to be in the middle third, my symptoms are much more manageable with meds. They also changed my regime. I’m now on Fexofenadine and Dymista but still looking for a really good eye drop.

Thank you for the pollinosan suggestion I'll look into this!

Thank you this is useful! I used to LOVE rapitil eye drops, but they stopped doing them. Gutting

Rapitil, same!!

I was referred to the allergy clinic at the hospital who said i could take up to 4 a day this is what "allowed me" to have it prescribed by the doctor. I had to be pretty adamant and clear to get referred mind. The hospital couldn't see how they could which wasn't helpful but least got me fexo which was helping uk wise. I'll see how it works when I travel abroad in July...
I have a pre paid exemption card due to other meds so I'm fortunate there. I think as you say you feel you have exhausted all options I'd go back to the GP. I even had allergy tests done through a test at home. Was £40 but was enough evidence for the doctors. Must be very frustrating for you.

My DD paid privately for a hayfever vaccine thingy. Says it’s the best thing ever

Montelukast has been a game changer for me. I'm asthmatic and my hayfever triggers it. I take montelukast at night and it dramatically reduces both wheezing and crazy sneezing/ sinus issues. That and a steroid nasal inhaler (prescription).

I take fenofexidine and piriton on top...but I don't think its recommended to mix. I dont find any recommended level of antihistamine is ineffective. I buy piriton in bottles of 500 tablets and it lasts a season.

Extreme hayfever is awful and debilitating. Find a GP who takes it seriously.

I paid for two doses of this last year and unfortunately it didn't even take the edge off :( i seem to get so unlucky that nothing works

https://www.cambridge-news.co.uk/news/uk-world-news/hayfever-stinging-nettles-pollen-bomb-14775804

I've been trying to convince my DP to give this a go (he has hayfever, I don't), but to no avail. There is some interesting science behind it.

Very interesting! I'd honestly give it a go!

If you do, please report back. I guess you could start with the nettle tea and then progress to rolling in fields of the stuff??

I grew up on a farm and we would immune ourselves to nettle stings early in every season and you definitely get used to them.

I’ve just finished a four year clinical trial of the sublingual grass pollen (grazax). My hayfever has drastically improved although I’m yet to find out if I’m on the placebo or real deal.

I do still need antihistamines on bad days, and I notice it when I don’t take one. Today for example wasn’t great. But back in the day I spent late spring / summer not being able to breath through my nose at all.

@EggbertHeartsTina it was Grazax that I had, 3 courses of 6 months each.

Did you get itchy lips / mouth when you took the tablet? I did, so I’m hoping it was the real deal - I find out in sept if it was placebo or not.

@EggbertHeartsTina it was pre Covid, my apologies, I really can’t remember. But an itchy roof to my mouth and throat are both reactions to pollen for me.

I’m interested to hear why there was a trail so many years after I had the real treatment?

Avamys nasal spray works well for me. It is prescription only, may help along side your anti histamines. Hay fever is awful and this year I've been suffering since Feb

Sorry to hear.
i have found starting the mometasone spray 6 weeks before usual stymptoma, plus the fefoxidine and 2 weeks of prednisone has helped, without the prep would have really struggled.

Ah - well as you know grazax is proven to work, but the trial was to see if it works quicker and for longer when combined with the dupilumab injection. So I’ve also been injecting myself with that (or a placebo) alongside the tablet. Treatment has finished but results not for another few months.

I know it's a bit late for this year, but I find starting my nasal spray early in the spring helps before the full pollen season starts.

Unfortunately avamys was useless for me. Isn't it weird how it's so good for some and not for others! Shows we are al different eh

I feel for you. I've been in floods of tears over my allergies at various points over the years. Like you I get no respite, it's either bad or horrific all year round. This Spring was particularly awful and I ended up housebound at times because I literally couldn't stop sneezing, my nose was running like a tap, I was coughing and I couldn't see properly because of how much my eyes were streaming. I was going through at least a box and a half of tissues per day. I wanted to tear my face off. It's improved now but I'm still blowing my nose a lot, have horrible catarrh (the most distressing symptom for me) and the skin on my nose is raw.

I have Dymista on repeat but I don't think it does much, possibly because I can't keep it in my nostrils long enough for it to do anything. Never found fexofenadine or any of the other antihistamines helpful.

I was sent for skin prick testing but I was reacting to everything so they said I wasn't a good candidate for immunotherapy. I cried.

I was offered montelukast which I'm still considering.

The only thing I find really works is prednisolone but you can't take it for long.

Have you tried NeilMed sinus rinses? That gave me some relief during the most recent flare up. I'd do one first thing in the morning, then as soon as I got home to rinse out pollen, then just before bed. Also a good quality air purifier.

Ah that’s a shame.
its definitely strange how different things work for different people. I find antihistamines that work one year, don’t the next.
Hope you can find something that works for you.

OP, I've always had very severe seasonal allergy symptoms very similar to yours and until recently, never found much relief for them.

I was recently on antibiotics for some dental surgery, and when I finished the antibiotics, I took a high potency probiotic to restore the good bacteria in my GI tract that the ABs always leave in a shambles. To my amazement, I woke up the next morning and my allergy symptoms were 90% gone. Assuming it had to the probiotics, I did a little digging and found that it very likely was them. Your gut microbiome moderates your immune system responses to seasonal allergies. This is peer reviewed, published scientific research:

Treatment of Allergic Rhinitis with Probiotics: An Alternative Approach

This is a bit more accessible to non-medical people.

Can Probiotics Help Your Allergies?

It's been life-changing. I've been taking the probiotic daily for the last three weeks, and I'm very close to being asymptomatic for the allergies.

This is the probiotic I took. My gastroenterologist recommended it years ago for a GI disease I have because there is so much research proving that it survives stomach acids and repopulates the gut.

www.vsl3.co.uk/

It's cold-shipped to maintain potency, and you keep it in the fridge. It's not cheap, but if it works for you like it did for me, it's priceless.

Another vote for Benadryl Acrivastine, I had debilitating hayfever and NOTHING helped except this.