OK so back in Dec 2021 I started with a runny nose, sneezing, blocked, and neuralgia - I thought I was getting a cold, so a few days passed and still all the same symptoms but I noticed my smell had started to go, which is strange because I've never really lost my smell, I thought its Covid - I did 3 test over a week period but all negative so I googled it and came up with Sinusitis.
After 4 weeks of trying to get in at my Dr's I eventually spoke to a Dr and he said it wasn't Sinusitis because of the lack of pain and dark green discharge, he referred me to ENT. It took 4 months to get an appointment and they prescribed me Betnesol Drops and Avaymst spray, the drops worked fine and took away all the symptoms but when I started with the spray, all of the symptoms came back.
I have had a CT Scan which showed some inflammation but all else looked OK, and allergy blood tests which all came back negative, I've had another appointment today but have been told that there is very little they can do for me, surgery is unlikely to solve this long term and they can only prescribe the medication for 6 weeks at a time but at my last appointment months after my CT Scan the consultant had said that if treatment didn’t work it would be surgery but now suddenly surgery is off the table so I am pretty much screwed because I wake up early every morning unable to breath because of congestion, neuralgia starts at night, persistent cough from all of the nasal drip and no smell and hardly any taste - I just dont know what to do, surely there must be more the Doctors can do, I cant live like this!!
Thanks,
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Leey2k
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Hello Leey, welcome to this friendly forum. You have had a miserable time. With confusing, contradicting advice. I’m afraid I can’t help but there will be other members who can.
Sorry, I'm not going to be much help either. I rarely have any sense of smell.
Maybe try doing sinus rinses,like Neilmed Sinus Rinse , or a cleaning spray like Neilmed Nasal Mist, I also sometimes use Becocleanse. As it's worse at night and came on suddenly an air purifier running through the night might help. Sorry, these are the main things that have helped me, I have small sinus cavities and a very narrow entrance plus loads of allergies. I can't use any scenty washing powder or fabric conditioner either, no spray deodorant, etc.
Possibly ask for a second opinion from another consultant? Maybe they could try a different nasal spray? Sinus rinsing has helped a lot of people on another forum that I'm on. xx
Thanks for the reply, I am doing sinus rinses but all they do is stop me from getting Sinus infections, back at the start of may I wasn't keeping up to them and I got a sinus infection so I am trying to keep up to them but they have no effect on my other symptoms, very often it just run out the back of my throat because of the blockage, same with the spray they are all useless, you spray them up your nose and they just run out again because of the blockage.
What I don't understand is I've been living with this for 2 years now and never at any other visit was I told Surgery would be unsuitable for me, even on my CT Results letter it states that if treatment is unable to help then Surgery would be needed, yet this appointment the Dr was saying Surgery is useless so I would of thought a consultant would of prescribed me medication that helps with the symptoms?
I've had Betnosol drops twice now and they work, they take away all of the symptoms and they are a localised steroid which I would of thought would be fine to take long term yet he wants me to try Prednisolone for 7 days with no Lansoprazole even though he know I suffer with IBS. I just don't see the point - yes they may take down the swelling but for how long - 1 week, 2 weeks, a year and then what when I cant have anymore?? Why are they not treating the Symptoms! They have already said that there is no cure.
I would ask to see another consultant for a second opinion. They have not confirmed a diagnosis or effective treatment plan. Perhaps ask to be referred to a respiratory consultant as the ENT consultant has not been helpful.
Wishing you all the best as you try to cope with your condition.
I am on my first Avamys spray for post nasal drip and rhinitis. Whilst I do feel that it has made a difference to the morning congestion the explosive sneezing and streaming nose still happens - usually if I forget to spray.
Not totally but I haven't had much sense of taste for a long time now but I thought perhaps I might sometime have had a mild dose of Covid and this was a result of it. One fear is having a dewdrop on the end of my nose but I suspect I'm much older than you.
A sinus operation (FESS) widens the tubes that form your sinuses. It can only reach the ones in the nose area. I was on nasonex long term which is a steroid spray, only available on prescription but maybe worth asking your GP about. Maybe sterimar before you go to bed to clear your sinuses out? Good luck it’s miserable having problems with your sinuses.
I would say get another opinion, I didn't have any pain or green mucus. Mine started with a really bad cold that settled in my sinus's and they got badly infected. It took months of my gp and the hospital consultant delaying which made my bronchiectasis really bad so that i was constantly coughing and blowing my nose all day long, neither of them knew what was wrong. I finally got sent to Ent and the ct scan showed just how bad my sinus's were, nothing worked to clear this, so I had surgery. Sadly the surgeon left me with a hole in my septum but the surgery itself has helped alot, although i do still have to blow my nose most of the day because i make so much mucus. I lost my sense of smell when this started but do have an occasional waft of my perfume, but I figure losing your smell is better than losing your taste. Betnesol works for me if I have any infections but Avymst was a waste of time. If you want a break from the mucus take antihistamine which will dry things up and let you breathe for a day. One thing i will say is dont delay, get this sorted and push the Ent doctor. Terrible that we have to constantly fight our corner. Wish you the best of luck x
Sorry to hear this but at least I know I'm not the only one, its so annoying I see other people have issues, they get to see the Dr and after a few appointments it sorted for me it like trying to get blood out of a stone - everything is so much work and me having to keep complaining and moaning to get anything done.
I've got no smell or taste at the moment (2 years now) and constant blowing my nose and now coughing and wheezing to add to it.
I am so sorry to hear you are having such a miserable time.
Would you like to give one of our Clinical Team of nurses a call? They may be able to suggest treatments or help you in conversations with your health care provider.
Seems like sinusitis to me. From my early teens I always had a stuffy nose, and in my 20's, 30's and early 40's my GP was forever prescribing antibiotics for sinusitis. When I was 45, a hospital appointment found that I had a nasal polyp, and I eventually had an op. which removed the polyp, holes made through my nostrils into my cheek sinus cavities and (as near as I can remember) snipie escopens, which was the trimming of tiny bones at the top of the nostrils which increased the size of the airways. I was off work for a fortnight. This helped a lot and reduced the stuffiness and the frequency of sinusitis. Over recent years I think maybe the effects of the operation have regressed, and I was put on nasal sprays. In the last couple of years, I've found that these sprays contained steroid. I also found that diabetes can be induced by steroid, so as I have recently become pre-diabetic, I've stopped using the nasla sprays. I now use Sterimar, which is basically seawater, and that does help a bit. Do not get sinusitis anymore I'm glad to say, but still have a stuffy nose. I do use antihystamine from February when the trees are sending out pollen, through grass and into October athe finish of fungal spore season.
Hi Lutontown, I thought it was sinusitis when I first had it but a very rude Dr at my clinic said it wasn't even though at the time couldn't see me (Telephone Appointment), ive had blood tests for allergies, non found and yet Betnosol drops work and remove all the issues and they are a localised Steroid (0.1% strength) yet they say you can only take them for 6 weeks! He has prescribed me a 7 day course of Prednisolone 30mg which I don't really want to take because of my dodgy IBS ridden stomach yet I don't see what the point of them is - we know they will work because the Betnosol drops do but if it cant be cured why give me a short term treatment when I need something to take long term!
I use the Neil med sinus rinse from amazon which I found to ease the congestion a little and stop me getting any infections. (Its natural salt you add to boiled and cooled down water).
Antihistamines only help stop me from keep sneezing they dont seem to do anything else for the other symptoms, mine is bad all year round.
Do you get issues with smell and taste too or just the congestion, drip and sneezing?
I suffered from sinus problems all my life until I was prescribed Onbreze and Seebri when I was diagnosed with COPD. Last year Seebri wasn’t available and I was given a different medication, after 4 weeks the sinus problem was back but cleared when back on Seebri. This has happened again since but I don’t know why. It may be worth checking your inhaler with your respiratory doctor/nurse. Good luck because it is a horrible condition.
If you can afford it .. treat yourself to a Genuime Himilayan Salt Lamp and keep it on your bedside table right next to where you sleep... It works for me ... and an additional help would be (recommended by my GP for me for severe rhinitis) plus if you can manage a bit more a Hepa Filter Air Purifier... mine was around £39 But believe me it's worth it ....
The Himialayan Salt Lamp seems to clear your nasal passages and those on the way down to your lungs
The Hepa filter Air Purifier clears and cools down the stuffy air in your room and it clamis to collect up any pet dander, pollen and house dust plus other things ...
Ive have chronic rhinosinusitis most of my life,as has my son,and his young one.its hard to treat.i use a steroid nose spray( which need to change periodically),2 different antihistamines,air purifier;sinus rinse and decongestants( otc) as needed+ antibiotics whn required.son had 2 operations on his - helped for a while.its a suck it+ see really.stick with what works+ use consistently.its prob worth trying steroids to reduce inflammation while u get a routine going.some sprays say 2 sprays but i use 1 spray ea nostril twice a day,saves it running out.
Sorry, I can't offer you any help, but since my last viral infection a month ago, I have almost completely lost my sense of taste and smell.My daughter gave me a very highly perfumed hand cream for Christmas which I had to avoid using before eating as the smell was too strong and spoiled the taste of my food. Now, I can't smell it at all.
I can't taste bacon, either and other foods I used to enjoy have little or no flavour.
I've always had the post nasal drip and have been diagnosed with dust mite allergy. I use Beconase spray twice a day and take Fexofenadine once a day.
I was thinking about contacting my GP as the lack of taste and smell is a recent thing. Your experience does not give me much hope, but it's worth a try.
A sense of smell is important for survival! Without it we can't detect gas or food that's gone off. The 'sniff test' is no good to us, is it?
My experience of ENT doctors varies from excellent to useless - mainly the latter.
If you can afford a private appointment you may get more help, but this is not always guaranteed. I saw one who took £120 and graced me with 10 mins of his time at the end of which I gained nothing. I saw a different one who helped me enormously. My problem then was vertigo due to Menieres Disease.
I hope you get help for your problem as its miserable to live with. Xx Moy
Hi Lee , I have nasal and mucus in the back of my throat, I've also lost my sense of smell, not all, but not as much as I used to have. I use a room defuser (water in the bottom and it turns it to vapour, no heat so I can leave it on as I go to sleep. I set it for three hours and it automatically turns off. You can get them for about 20 quid from Amazon) I used colloidal silver (pre mixed in sterile water) and a blend of peppermint, olbas,clove, thyme and lemon oils. 5 drops peppermint, 10 drops olbas, 5drops clove 2drops thyme and 5drops lemon oil. Essential oils NOT fragrance oils. This is a pleasant blend that will not only help your sinuses but your throat and lungs. All the above oils have been chosen for their ability to destroy bacteria in the nose throat and lungs. Especially clove and lemon. So fill the atomiser to the top with mineral or colloidal silver water add the recipe of oils switch it on and relax. Let the steam do it's work, should help with your sense of smell too. It's natural i have COPD and use this blend for my lungs too. You don't have to lean over the steam, as the water vapour fills the room it do its job. I do this three times a week over night. Hope this helps.
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