Strange smells again 😷🤢

[weathervane]

Well it’s happening again ! About 10-12 months ago kept smelling smoke even though no one in the house smokes or is around anyone that smokes . I asked the doctor about it and she changed the steroid nasal spray i used to a different one , Avamys. This worked and the phantom smell went away . Now for some reason the smell of smoke is back with a vengeance , i can even taste it . Is it time to change the nasal spray again or is it something else causing it ?

[wsjkcj1]

Hi WV, did it take you a long time on the previous spray for that to happen?

[weathervane in reply to wsjkcj1]

I had used the previous spray for several years , maybe 5 years . Changing the steroid spray made a difference very quickly . My sinuses are ok at the moment so I don’t think it can any to do with them . The smell is a bit more intense this time, like a cigar smoke.

[Nurseladybird in reply to weathervane]

I get phantom smells - mine are just a general burning smell, like something burning in the oven. I’ve had this for about 20 years and always assumed it was something to do with migraine pro-drome, as I often get a migraine within a couple of days. My dad used to get it and my brother mentioned a few months ago that he’s started to get this burning smell too. It’s not very pleasant, but it’s something I’ve got used to.

I know that doesn’t help you very much, but you’re not alone.

[wsjkcj1 in reply to weathervane]

you're husband isn't sneaking cigars right? LOL There are other meds known to cause a smell or taste change too. Any new meds?

[weathervane in reply to wsjkcj1]

LOL my hubby doesn’t smoke or drink so definitely no cigars 😀 No new meds other than tramadol for my back .

[weathervane]

Thanks for your response 😀 I don’t have migraines anymore so i know its not that . I did post about this when it happened a year ago and i did get alot of replys so it is common enough. I was wondering if anyone had any ideas why it happens and can it be prevented ?? It is quite weird, i have been going round sniffing furniture and curtains as it is such a strong smell .

[AnnNY]

It could be a problem in the brain, for instance a small seizure or CNS lupus. If you haven't had a brain scan, it might be warranted. I have all sorts of weird neuro symptoms, but so far things that go away either on their own or with lupus treatment.

[weathervane in reply to AnnNY]

Hi Ann , i have Sjögrens which has caused more ENT problems and this is very similar to a previous episode a year ago . I haven’t had any neuro symptoms so i hope its not that as i know that smells can be part of an aura before an epileptic fit . The gp wasn’t that worried about it the last time it happened!

[AnnNY]

I had a bad sinus infection that took a while to figure out, and in that case I smelled sewage.

I hope it is not a neuro symptom, but as you probably know all ready, if it persists or reoccurs, tell your doc.

Hope it goes away. I wouldn't be happy smelling cigar smoke in my residence.

[weathervane in reply to AnnNY]

I will get it checked out if it persists into next week. I don’t know why its a cigar smell , vanilla would be more pleasant 😊

[Hidden in reply to weathervane]

From reading many posts SS forums and a FB community about this I’d say this is pretty common to Sjögren’s - part of the sensory/ autonomic neuropathy side of things.

These links might help. Your problem does actually have a name it seems! X

en.m.wikipedia.org/wiki/Pha...

sjogrensworld.org/forums/in...

[weathervane in reply to Hidden]

Thanks twitchy, i had looked up phantosmia when i had this a year ago . I used to get this when i was pregnant , I would smell bleach or smell something really nasty that no one else could smell . Its quite disconcerting 🤥

[Hidden in reply to weathervane]

It’s quite common with Sjögren’s - dryness and sensory/ small nerve fibre changes etc. I spend my life feeling like a pregnant woman without the greatest excitement/ reward ahead lol! X

[AnnNY]

Definitely. Or cinnamon.

[MrsMouseSJ]

Hi weathervane. I don't know if, in your case, it is the spray but I do know that, at times, I smell things which don't actually appear to be present (as in, no one else can smell what I am smelling). I don't get smoke but a rather bad smell - I keep thinking 'has the cat farted?' when the poor thing isn't even in the vicinity. I go through periods of this and it usually happens at the same times of day - 9pm is a 'hotspot', and then the phenomenon disappears for a while.

[weathervane in reply to MrsMouseSJ]

Have you ever asked your gp about it ? It is a weird thing and a bad smell is unpleasant.

[MrsMouseSJ in reply to weathervane]

No, I haven't. I imagine she will sigh - even if only inwardly - and chalk it up to 'more of the weird symptoms this woman gets'. Thankfully it doesn't last too long - no more than 5-10 mins at a time, so I can live with it. In addition to Lupus, I have a host of things awry, so I don't imagine that there is an easily arrived at answer in my case.

Hope your own unwanted smells resolve!

[weathervane in reply to MrsMouseSJ]

I have been referred to ENT in the past and advised to use the nasal spray but I didn’t have the phantom smell then . I get it more in the evening as well and it can last all evening. If its still as intense next week I will go to the doctor, I will probably get an eye roll as well 🙄

[MrsMouseSJ in reply to weathervane]

Ah well - perhaps we can compare the degree of eye rolls we receive!

[weathervane]

LOL 👍

[Krawlins]

Hi there

I'm sorry I can't offer you an explanation, only empathy I'm afraid, I don't have lupus according to negative blood results nor sjogrens (don't know how they checked that?) but I do get this issue, mine is cigarette smoke. It's happened on and off for years, at first I declared there was never anyone smoking that I could see around, I have smelled it at home and in an office at work. Latterly I've reached my own conclusion that someone must be smoking outside but never sourced the evidence. I ask others can they smell it and they can't, think maybe I'm ultra sensitive. I was using beconase for poss 20 yrs just been changed to Avamys same as you! I have incredibly dry skin, scalp and mucous membranes, get bloody noses or rather dried blood etc. I've been on the new inhaler a month, go back in two but I got the smoke smell earlier this week, it's like I can smell it from miles away and no one else can. I'm following your post in case anyone gives you a good explanation for it.

Kay

[weathervane]

Thanks kay , thats very interesting! When this first happened a year ago i was sniffing everything, curtains, clothes , furniture and even my skin . I just couldn’t work out what was happening. Maybe I need the nasal spray changed again . My nasal passage , mouth snd eyes in particular are very dry and i have to moisturise them regularly . The smell im getting is so strong it feels as if it is burning my nose , it is hard to explain !

[Krawlins in reply to weathervane]

Ah yes weathervane, the dryness up my nose and in my mouth is awful sometimes, I've woken up in middle of night finding it so hard to swallow as there is no saliva. I've been given a gel which I'm going to start using before bed. Can't moisture my nostrils tho. Ears are dry and have to use oestrogen cream for my lady bits. I've thought of Sjogrens but have a letter that says I don't have it but I don't recall having any test to establish this.

I hope it improves for you, years ago a friend had an issue where only she could smell something bad, she ended up with ENT washing her sinuses out, an experience she wouldn't want to repeat, water came out every orifice and she likened it to drowning, don't know if they still do this? I have wondered about those nasal washes though that you self administer?

[weathervane in reply to Krawlins]

I use a sterimar saline nasal spray which does help with dryness and cleaning nose , i get it on prescription from the gp .

[weathervane in reply to Krawlins]

Ps another definitive test for Sjögrens is a lip biopsy.

[RhondaB]

Boy do I have this problem but mines has a range of different smell form roses, chocolate to

rotten trash to a skunkish type of smell. Some times so bad I cannot sleep regardless what I do. I often have to boil some vinegar and walk around the house to clear it. After telling my aunt, who is one of 4 in the family and the one that likes research she found it to be call Ole Phantoms Syndrome like you guys said, They also said it can be related to some type of head injuer, which I had a r/s Cerebral Brain Aneurysm which almost killed me. And prior to that had a miginal tumor in the back center of my head. Have you had any head injuries?

[weathervane]

Hi Rhonda , i had concussion as a teenager when i got hit by a hockey ball during a game !! I have read about this as well , it can also happen in some cases before a epileptic fit . I think the cause of mine might be more ENT related as the last time it happened a change in nasal spray helped . It is settling down again now so i did not go to the doctor about it. Have you ever asked the doctor about it ?

[Ruzuz in reply to weathervane]

Hi weathervane. I know you posted this 3 years ago but I was wondering, did you get a smell in your nose after you got hit?

[weathervane in reply to Ruzuz]

Oh gosh ! I was a teenager when that happened , I don’t think i had phantom smells after the concussion . It has happened a couple of times for a period of weeks at a time in the last couple of years but i ithink its sinus related. Its is very disconcerting when it happens !

[mumzylicious]

No one has commented for a while, but if you do... I don't think it's the nose spray, maybe something in the spray aggravates the issue? I smell strong cig smoke out of the blue (no smokers here or even near, we live in the country), it will last for anywhere from days to months, then disappears for a while. It has happened while living in 3 different houses, thru all different med combinations, over many years. Maybe from an injury, maybe a chemical change from lupus/sjogren's/crohn's/etc.?...maybe in 100_years, a doc will have an answer for future folks dealing with this!

[weathervane in reply to mumzylicious]

Hi there , i have posted again about this , I think it may have been due to a sinus infection?? It was lasted quite a while but is easing off again now . It is quite disturbing sometimes as the smell is quite strong and burns the inside of my nostrils.

Hopefully we will get an answer or a cure at some point. I hope you’re keeping well and staying safe during this time xxx