To beg for advice on recurrent sinusitis

[FireplaceChair]

Absolutely desperate and hoping there is someone on here with some expertise. Have had recurrent sinusitis for the past few years and it's completely debilitating. All the classic symptoms; fever, exhaustion, terrible pain, masses of technicolor mucus, aches, chills....always starts after a cold, and lasts about six weeks. I am sick ALL the time. Even when I don't have an active infection, my left sinus feels tight and narrow, like I'm not getting enough oxygen and I'm getting terrible sleep disturbance and brain fog because I can't breathe properly at night. I have children with disabilities, and cannot care for them because every cold becomes a full-on bed-ridden infection. My partner is looking after me plus our kids. I think he's going to lose his job if we carry on like this. My life - our life - is in tatters.

Sought a referral two years ago, after trying to manage with saline rinse and nasal steroids. I'd read about something called balloon sinuplasty which sounded like exactly what I needed. After seven months was seen by an ENT who did an endoscopy and said one sinus was blocked and that I would need surgery (yay). I was sent for a CT scan (which took place between infections) but then discovered that I'd been discharged because the scan was "clear". The instruction sent to my GP was to carry on with steroids, which I'd already explained did not work for me. I started the referral process again and finally got seen by another ENT Dr last week, where I was again told that because my scan was clear there was basically nothing they would do and once again told to try steroids, which I know will not help.

So is that it? Is this my life now? In addition to being desperate I'm also just a bit confused. My understanding was that the CT scan was just being done to check if I had a deviated septum or any other abnormality that would prohibit balloon sinuplasty and necessitate full surgery. Not to verify that I needed treatment at all. And sources on the web indeed seem to suggest that you can have balloon sinuplasty on the basis of symptoms and without an abnormal CT scan.

Are these Drs following some guidelines that I can't find? Are they rationing care? Has anyone here had balloon sinuplasty without demonstrating any abnormality on a scan? Or otherwise resolved their sinusitis without using steroids? Please help, I'm completely desperate here and feel like my life is basically over.

YANBU - There is probably a solution

YABU - This is your life now, suck it up

Can't help hope someone more knowledgeable will come along

I apologise if this is entirely off the mark but I feel your pain and so wanted to make a suggestion in case it’s something that has never been considered.

I have had problems with my sinuses and Eustachian tubes all my life, to the point of having recurrent ear infections as a child that have affected my hearing. My parents were told to get my adenoids removed but then were turned down by ENT because ‘it would fix itself as I got older’. Safe to say it never did and I had all the symptoms you are reporting, every single time I had a cold. It took so long to recover from the after effects of a cold that I’d be on the next cold before the first one had even resolved!

Anyway, around 5 years ago I decided enough was enough, got referred to ENT again, saw 4 different consultants over the course of a year, all of them prescribing steroid sprays and saline, none of which ever helped. CT scan showed nothing.
Then just as I was about to give up and probably get discharged, one absolute angel of a junior doctor said ‘let’s just check your tonsils and adenoids’ and lo and behold, still as huge as they were as a child. I had suffered for 28 years for no reason.
He booked me in for an adenotonsillectomy and now I get a cold and it’s gone within the recommended 5-7 days. It’s a total revelation. Never had a problem in 5 years.

Just something to consider maybe. I hope you manage to get sorted, it’s hell on Earth.

I suffer and have had a ventilation 95, after which I was clear until pregnant.

At the first sign of air pressure changes I buy acetyl cysteine in 600mg capsules and take 2 every morning. It's mucolytic, thins the mucus enabling it to drain. It's available on prescription and the standard dose is 1-2 200mg sachets.

I've managed to stay antibiotic free for 2 years.

If you're near Crewe, I can highly recommend Elgin Davies.

have you been to the dentist?

@Probablygreen
Thank you. Funnily enough I did have lots of ear infections as a child but in my case they did do a tonsillectomy so unfortunately that option has already been exhausted (the second Dr did say that my sinuses were "very small" but I'm not sure of the significance of that). I'm very glad you found a solution though.

Thanks for this! I will definitely check out the capsules, that sounds promising. What is a ventilation 95?

Have you ever had an allergy test? I suffered for years with my sinuses, saw an ENT who couldn't identify any issues and sent me on my merry way. Years of GPs prescribing antibiotics; not once did anyone suggest allergies but as it turns out I have a moderate (level 2 of 3) allergy to dust mites. I saw my sinuses on a camera and the nasal passage was tiny and the walls were almost white from lack of blood supply; the doctor was so sympathetic so I finally felt heard! Apparently the ENT's camera wouldn't have gone far enough to see the damage the allergy had done. I'm now much more careful about dust and take antihistamines regularly and my sinus issues have subsided significantly.

Does your GP ever prescribe doxycycline?

I used to get awful sinus infections that went on for months. I became so addicted to sudafed/otravine as otherwise I just couldn't breathe at night and it because stressful. I was utterly exhausted, tired all the time. Dizzy.

If one more person suggested a steam thing I wanted to punch them!

Mine turned out to be more allergy related.

I still get them, but I now use mometasone spray when I need it which clears them reasonably quickly.

Sinus acupressure helps too.

People used to think I was crazy when I said a sinus infection was making me feel so awful, but when it goes on for so long it is relentless!

I don;t have personal experience, but just this week a colleague was telling me how her life was changed after seeing an osteopath for sinus problems.

I did mention it to my dentist as I have a wisdom tooth that sometimes causes gum issues on the same side as my worse sinus . However he was insistent that this wasn't relevant. Why do you ask?

I had 30+ years of all the symptoms you describe, OP. About 10 years ago I was absolutely on my knees from yet another bout, when I sought a consultant referral. MRI and endoscopy showed very narrow sinuses. Surgeon operated to widen them (day case, a few uncomfortable days with cotton wool up my nose), and I have had NOT ONE MORE episode since. I urge you to make a nuisance of yourself with your GP if needed. These days you may have to wait endless weeks to get the appointment, and have to fill in lots of forms to prove you qualify. But it will be with it, I promise you!

• worth it 🙄

Yes, and I do have a dust mite allergy. I'm not sure what level - I don't think I was ever told - but I do have it well under control now, mostly via using a dehumidifier to stop the dust mites breeding (extremely effective, in case anyone else is interested). It did take me years of sneezing to find out about the allergy and how to deal with it though. And I suspect that this long wait may have damaged or narrowed my sinuses in some way.

Regarding the camera - are you saying that you were looked at by two types of camera and only one could see the problems? This sounds very relevant! Do you know what types they were.
My sinuses just feel tiny, like someone absolutely needs to widen them. But the second ENT couldn't even see an issue apparently.

No why do you ask?

You poor thing. Sinus issues are horrible.
My thoughts on your post, the dehumidifier for the dust mite allergy could be exacerbating the symptoms. Drying your sinuses out. Your sinuses are a filter for the air you breathe and are obviously reacting to something. Have you thought about getting an air purifier for filtering out dust, pollution, pollen etc inside your home? Apparently our inside air is more polluted today than our outside air.

I also second getting an osteopath to look at you. You’d be amazed at what in the body can be linked to your sinuses/breathing/lungs.

Last thing, you should read the book Sinus Survival by Robert Ivker. It’s quite expensive but I got it secondhand online at a famous store.

I used to suffer very badly with sinus issues-lots of sinus infections and even when I didn’t have an actual infection, they always felt blocked and uncomfortable.
A friend recommended giving up dairy because it can cause inflammation in the body, as can sugar-I gave both of them up for about 2 months and the difference was mad. That was about 15 years ago and I haven’t had a sinus infection since!! I reintroduced sugar and a good bit of dairy (important for calcium etc) but if I get a cold, I’ll limit my intake for a few days.

Also, when I was pregnant, my nose became completely blocked-I tried reducing dairy/ sugar etc but wasn’t having its usual effect so I went to an acupuncturist-2 sessions and they cleared again. It never became an infection but it was just uncomfortable.
Anyway, 2 possible things for you to try. I hope you get some relief.

What type of surgery did you have, was it balloon sinuplasty? Did you have an active infection when you were scanned? I'm just so confused about how my sinuses feel so narrow and yet the scan was apparently normal. The letter that was written to my GP afterwards didn't mention narrowness so I'm not even sure whether they were looking for that. Or how narrow my sinuses would need to be to count as too narrow (he did say they were "small").

I totally believe you about the surgery fixing you, I just don't know how to make it happen for me at this point, now that two ent drs have told me to go away ☹️

@towriteyoumustlive
Sadly I think that's a steroid and therefore won't work for me. Thank you though, I know that they're effective for many people!

Thanks, I can certainly try that next time I have an infection!

Yes I've wondered that about the dehumidifier. Don't want to give it up because it's definitely improved the sneezing, but maybe I now need to moisturise my sinuses somehow? I do have an air purifier already, which I bought as part of an early attempt to tackle the dust mite allergy. Thanks for the book recommendation I'll check it out 🙂

A few years ago I had suffered all the symptoms you describe and was fobbed off with steroids and pain relief for a couple of years. I just kept bugging the GP, actually crying at times during appointments because the pain was so severe. Eventually it was discovered I had several nasal polyps blocking my sinuses. After a long wait I had them removed and after a bit of recovery I have had no further issues at all.

I really feel for you as I remember how miserable
and painful it was. I would ask for another opinion and not take no for an answer. It’s so debilitating.

I had my wisdom tooth removed and my sinuses have improved well I've not had a single headache since actually. You could see on X-rays how close the root of the tooth was to my sinuses. It's worth a second opinion.