Firstly a very Happy New Year to you all! 8)
I wonder if anyone can advise on whether a longstanding problem with a rancid taste plus a poor sense of taste relate to a) Sjögren's dry mouth and poor quality saliva as ENT suggested 4 months ago or b) neuropathy (my main Sjögren's related problem) or c) nasal congestion as my new gastroenterologist believes.
The ENT saw me about recurrent nose bleeds, which he confirmed were due to dryness in my nasal passages. He excluded reflux and CT of sinuses showed nothing untoward apart from a slightly deviated septum, that might explain the horrid rancid taste I've had for 7 years now. My oral consultant feels my mouth isn't that dry.
Treatment suggested by ENT was not having central heating on at night and wiping small amount of Vaseline up my nostrils at night. I explained to him I'm a nose breather and he said to avoid sinus rinses as they would dry me out more.
However the gastro, whom I liked a lot more than ENT surgeon, seemed to think nasal rinses can't hurt and said that almost all problems with poor sense of taste relate to nasal congestion rather than anything untoward in nasal cavity. Out of desperation I've used the nasal rinse he prescribed but, as ENT predicted, it seems to be making my nasal passages even dryer.
I was really hoping to sort out this bad taste and poor sense of taste and smell by tackling my nasal dryness but it hasn't made any difference so far. My strong suspicion is that it's neuropathic.
The tones on this link may help
http://www.chakraforce.com/LEDlist.html#Smell,%20none
This link has the best documented tones:
http://www.chakraforce.com/Tonations.html#1.
"Anosmia" is the name given to the symptom.
The MP3 for each tone is 30 seconds in length. You need to play each tone in sequence for a duration of 3 to 5 minutes (Repeat the tone). You can play the tone by clicking on its frequency (number). Notes suggest that the sequence be played two to three times per day. I will not suggest that they can cure anything but they do not seem to hurt. I have experienced and received reports of positive results.
Oh MAT51, it isn't my husband's cooking? :o
He does most of the cooking now, and he has a lot to learn, but he thinks it all tastes great. So he won't learn to improve. I gave up trying to tell him (from my 60 years of cooking) how to improve. I don't need to eat so much, anyway!
And maybe it is my deteriorated sense of taste, and the constant 'bad taste' in my mouth, that is the problem.
Everything is neuropathic for me. I do use a saline rinse and Nasocort, and Mucinex, so that I can breathe through my nose. If I breathe through my mouth at night, I have the Sahara desert in the morning. Very scary.
I really don't discuss this taste problem with my doctors, come to think of it. It never comes to the top of my list! On the 9th I'm having a 'procedure' to 'open' the sphincter at the bottom of my esophagus, and inject botox into the walls, so that I won't have the swallowing problem to the degree it plagues me now. I guess the treatment doesn't last forever, however. But I'm just taking it a step at a time.
And I am beginning to research knee replacement surgery, as well. So somehow I just struggle with the taste thing. I also sometimes smell things that aren't there...like smoke or wet cardboard. I did have thrush on my tongue for about a year, or maybe less, but now it seems to have cleared up! Amazing to have something improve on its own. I have IVIG every four weeks and I think my strengthened Immune System must have dealt with the thrush. I had never had thrush in my 75 years, until last year.
And of course I have horrible tinnitus. The list is endless, isn't it?
Keep us posted on your quest for better taste!
Hugs, Elaine
Hi Mat,
HNY to you too!
I know you are in Scotland...and available meds are different. I am one of the ones who lost smell and taste....as best I can recall....completely. I know the senses themselves "worked" ...well at least olfactory...because I would sneeze around flowers and in spring time. The taste? Don't think I tasted anything because I remember when I started tasting pudding. I was down to eating only soft foods (to be able to swallow) as well as consuming foods after sialadenitis attacks during which I could consume water alone. Because I didn't know what Sjogren's was nor what was causing the myriad of conditions hitting my body, I could only think of all in relation to my senses.
After dx, no one explained any of the things that I had suffered for about 4 years. (well but for the dry mouth) OH..and to the sialadenitis. NO ONE....not a rheumy, not an ENT, not an internist, nor a dentist could explain "burning tongue". The burning tongue happened for a bit over the last year before dx. The loss of taste and smell occurred about 3 years prior to that. No...that's not right. I lost the smell years before that.
Anyway about menopause time I became sound and sight sensitive. EXTREMELY sensitive. It crescendoed that last year w' the advent of burning tongue.
Before I got my SjS tests back, a dentist (friend) asked me about my tongue. I asked how she knew about my tongue. She said it accompanies SjS. I was blown away. She gave me a product's name to use (which calmed but didn't cure).
So there I am taking my saliva med, eye med, all the supplements....and calming the tongue. I go for about 6 or 9 months. I moved...and got a new rheumy...who put me on prednisone (at 5 mg per day). Let me say this up front: I am old. I was old then. I was 71 when I started on the LDP. I took it for close to a year when all of a sudden I smelled something. I thought about it ...and then realized i'd smelled something else...like earlier in the week. It wasn't an overwhelming smell. I went to my spice cabinet. Sure enough: I was smelling. It was likely about 10 years since I had been aware of not smelling.
In the meantime, I was still longing for Mexican food (which is useless to eat if you can't eat or smell) yet I would eat Tortilla soup and eat queso. (I live in Texas...in Texas Mexican food is a staple). So I go ...I am guessing here...but after a year (because after a year prednisone was reduced to 2 to 3 mg per day)...one night I realized I was tasting pudding. (Still eating pudding due to swallowing). I think it was vanilla. Well I know it was. So I got some fruit yogurt...then went straight to a Mexican restaurant and ordered enchiladas. And I had taste back. And...I can't remember if I could taste everything...cause the truth is, I was at the point w' Sjogren's where the food I could swallow is what I would consume.
You want to know how this happened? I do not know. I THINK the prednisone. I have seen Irish say our tongue woes are neurological. I don't understand that...but I can say NO ONE can adequately explain it. So her etiology is as good as anyone else's!! I know the dentist (friend) knew it was common amongst her SjS patients. She couldn't say how it happens. AND...I don't understand why some have burning tongue and others don't. But to the rancid taste DOES tell me something is different with the tongue. That's the link to the two symptoms.
I know you ARE tasting..and mine is a bit different....and I do not recall if I had rancid taste before I had none. I CAN tell you (again living in Texas) EVERYONE where I am has sinus probs. With sinus drainage, infections, whatever to do with sinus woes one has rancid tastes. I remember putting a spoon of ice cream on my tongue to put a cooling, calming, and good taste on my tongue. And it worked till it melted.
Now then: if you are young ...or if England's healthcare doesn't allow, you won't be able to get long term prednisone. I have it as it was Rxed when I was old. They don't think I have enough years left for it to damage my bones. Yet it can. :( Doesn't matter to me...as I have had some quality of life with food alone. So much so I 've actually gained weight. I'm 75 now.
Hope you have a rancid taste free tongue for 2018~
ccc
Had a very long period of time with experiencing strange tastes and smells. This eventually (for me) turned into not being able to do either. Very rarely I get a few seconds of either given to me, but it's so quick, it's over before I enjoy it. I would be interested in knowing if those who experience this, have ever had these senses return to normal. I also had thrush for the first time this year, 30 years after the sjogrens began.
Good luck with your quest for answers
I don't know what kind of nasal rinse you are using, but I have been doing the rinses for 17 years and it helps me a lot. My ENT has me boil distilled water for 5 minutes and then I cool it and store it in refrig in a gallon water jug. I only boil enough for about 5 days. Generally 1 cup or even more is used for each irrigation. I use the neti pot saline/soda powder that comes in the individual packets. I found that a whole packet is drying but 1/2 packet works well.
Vaseline is not the best thing to use to moisten the nose because it is oil based and can melt from body heat and drain back into back of throat and slide down into the lungs. This can result in oil emulsion pneumonia. You can buy a water based nasal gel at a pharmacy...lust ask the clerks.
The loss of sense of smell and taste is very common in Sjogrens and is usually a result of damage to a nerve. I have had this for many years and it comes and goes for me but I never get my old taste and smell back, I have many odd tastes and smells that show up and it affects my ability to enjoy food. I have a lot of appetite aversions. My favorite food is cold cereal and I try to buy the highly fortified kinds. Good luck. irish
P.S.Also try to find a facial sauna. You use distilled water to heat in these and inhale the steam. It really helps and is easy to use.
Thanks Irish and everyone else for your responses. I won't reply to each because I've been struggling with numb fingertips and dodgy internet but I'm grateful for your accounts of your versions of this. I do think your point about it being nerve related works for me. I'm sure I don't have a sinus problem and I know I don't find nasal rinses helpful because I've has ten days of trying them to no avail. Saline water is all I've been using but, putting this bluntly - I don't seem to produce much snot anymore!? Nor any earwax come to that and my tinnitus is constant and horribly itchy ears whenever I wear my new tinnitus aids (hyperacusis from hearing loss in both ears)
Joe this is the reason your chimes are impossible for me to listen to let alone find therapeutic - helpful as they may be for others.
I'm absolutely horrified at the idea of inhaling the Vaseline - this hadn't even occurred to me at all but I think it's entirely plausible so will go to a pharmacist tomorrow and ask for a good nasal moisturiser. What was my ENT chap thinking of suggesting this I wonder?!
Regarding the rancid taste - I'm clearly not conveying the severity of this for me! It arrived with my RA and SFN symptoms 7 years ago, when I was 47, and has never let up. It's not the same as loss of sense taste or smell in ones 70s, which is not great I know - although inevitably it means I have lost my sense of taste.
But it's obnoxious far beyond arthritic knees for me. Knee joints can be replaced but nothing can replace a clean tasting palate it seems. My mouth tastes like rotten garbage/ sour milk and that's just the pits for me. I don't have oral thrush or uncontrolled reflux or sinusitis to explain it. The only symptom that Ccourt describes, that to me as as awful, is the burning tongue. I think this is part of the same thing. For me it's my gums, lips and nostrils rather than tongue. But it truly sucks! My poor sister has it too but hers affects her tongue and roof of her mouth painfully. She's a year younger than me and neither of us can eat spicy food anymore. We have discussed this a few times and agreed that the thought of years more of this is pretty intolerable. In fact she has had a bad time in recent years with her hearing loss affecting balance so that many falls have caused broken limbs and much time off work. And yet she says the burning mouth is so much worse but exacts no one's sympathy in the way that her fractures have!
Hi Mat, that sounds like a very unpleasant thing to have to deal with.
I did a quick google search and came across the term dysgeusia which seemed to describe your symptoms. There's a long Wiki article about it, with possible causes, you might like to take a look.
Thanks for this. I will look up dysguesia as you helpfully suggest. It's a truly hateful aspect of life I admit!
MAT51-
I too suffer from majorly dry sinuses. Someone on the board about a year ago turned me onto an emolient called "Polnaris" I buy it on Amazon and use about one bottle every two months. It's an oil developed to keep astronauts sinuses moist in space. I use a Q-tip and put up my nose before bed and will also use during the day if I get really dry. I use Exovac 4 times per day and that helps a lot while I am awake, my dryness is much worse at night.
Neilmed also makes a nasal saline Gel that works really well that I rotate with and also apply with Q-tips, more so during the day.
Hope this helps. The Polnaris did wonders for me and only costs about $10 per bottle.
If you find any other great solutions please post so we all can share in the benefits :-)
One of the reasons for doing the nasal rinses is to cleanse the nasal passageway of bacteria to help prevent infection. I don't have much mucus anymore either but I feel so much better when I irrigate and I feel like it does help to calm the rotten taste in my mouth.
It is possible that some of the cause of the rotten taste in your mouth could come from your gastro intestinal tract. Do you have any acid reflux. This can really cause a rotten taste that is hard to explain and live with. Just a thought. Also, be aware that we normally have many hundreds of normal bacteria that inhabits our mouth. When this gets screwed up we can have a foul taste or unusual taste also. Sjogrens affects the amount of mucus and the kind of mucus we make plus the balance in normal bacteria is upset. Makes a prime candidate for weird mouth taste and odor. Good luck Irish
Thanks Irish. I suppose I already feel sort of awash with salty tears due to eye drops - and salty tasting saliva. But I've carried on rinsing despite noticing no significant difference apart from my nose feeling even more dried out?
No the ENT chap and gastro have excluded reflux because I'm already on maximal reflux treatment and no sign of reflux staining in my mouth or throat and no heartburn these days. Also this would cause bad breath and according to my brutally honest husband my breath isn't at all smelly! No sign at all of oral thrush.
But my lips and gums tingle and burn (like scalding) so I think it's dysguesia caused by neuropathy as suggested earlier in this thread. It never resolves no matter what I've tried - and is my no.1 most hated symptom of Sjögren's for sure!