Sjogren's croaky voice comes and goes
Posted , 8 users are following.
I've had an annoying dry cough for absolutely ages that was worse at night. However, since starting on Methotrexate I've noticed that has got much better, almost to the extent that it's pretty much vanished now. BUT in March, my asthma went wild and uncontrollable and at this time, my voice began going from being normal to croaky to almost non-existent to high pitched sounds only! It's been ongoing since March albeit my asthma is now back under control thanks to a change to a stronger preventor inhaler, (which keeps giving me oral thrush, no matter how much I rinse and gargle every time I use it, oh joy
).
?But even though my asthma is now under control, I'm going nuts with never knowing what sort of voice, if any, is going to come out of my mouth whenever I speak!!!!!!!
? It's soooooooo frustrating, constantly trying to make myself understood, especially since my husband has hearing loss, (and won't wear his blooming hearing aids), and he has the habit of getting annoyed when he can't understand me. It's got to the stage where I'm reluctant to try and speak to him at all and that's depressing, especially when he's talking to me about something and expecting a reply
.
?I've got an appointment to see the Respiratory Medicine team next Monday about the asthma, but I'm just wondering if any other Sjogren's Syndrome sufferers have anything similar happening with their voice? My dentist seems to think it's all to do with it just because, like all dentists, he's pretty au fait with the condition. The good news though, is that at least my teeth aren't suffering too much.....yet
? Always a bright side eh
0 likes, 19 replies
jennifer09136 hippyginger
Posted
I don't have asthma and have had SS for 34 years. I do have a dry cough, often a sore throat, and my voice will be anywhere from strong to croaky to non-existent anytime without warning. I have put this down to chronic dry airways/passages but would love to know if others also have this or have had medical conversations and explanations about it. When it happens, nothing I do can make my voice stronger, it just has to reverse itself in its own time. Most embarrassing and frustrating.
christine26761 jennifer09136
Posted
Jennifer I had the same issues too but just read my reply to hippyginger I’ve also had SS for over 39 years too...be blessed Jennifer and have a lovely day🙏🙏😍😍
hippyginger jennifer09136
Posted
Oh Jennifer, I'm so pleased to hear that another SS sufferer has virtually the same annoying, frustrating and embarrassing voice problems, but so sorry at the same time that you are also suffering
?Like you, there's nothing I can do to improve my voice when it goes off on one with a mind of its own but I have noticed that it definitely happens more when I'm at home, (there's a very busy and polluted A road just the other side of the trees opposite our house), and also when in the car with the air-con on. But then the air con can also trigger an asthma attack too.
?One REALLY odd thing though is that when my voice is very croaky in a normal talking range, I can still SING, (soprano!), and it sounds perfectly normal????? Go figure
? Mind you, that isn't always the case as I have also been known to sound like Joe Cocker with the gravel voice for other songs
Thanks for your reply Jennifer, it's comforting to know I'm not alone
christine26761 hippyginger
Posted
Hiya hippyginger...I don’t know if yours is from the same or not, but I get asthma so it’s always treated as such..but I developed this horrid cough for what seemed like ages, I went to a lung soecialist full of asthma meds and he said immediately” your over medicated, he stopped all my meds for not asthma, it’s a floppy trachea and you can treat it...so I’m off all asthma medication I got a Bipap machine for sleeping-wonderful,a .floppy trachea is only a floppy windpipe..I’m cough free it’s fabulous, hope you get the answers your looking for..I haven’t read all your blog yet, but as soon as I read the beginning I though I would just share my experience..be blessed and have a lovely day hippyginger.😍😍😍💐💐🙏
hippyginger christine26761
Posted
Thank you so much for taking the time to reply to my post Christine, it's much appreciated.
?I'm seeing a Respiratory specialist next Monday so it'll be interesting to see what they have to say. Have to say though, that my asthma has greatly improved since being put on a stronger preventor inhaler. Apart from my 2 inhalers, (the preventor and reliever), I only take 10mg of Montelukast at night and if I run out of that, I do notice that the annoying night-time cough returns where I feel as though I have to constantly clear my throat. Don't know if your cough was the same as that?
?Interested to know what treatments are available for a floppy trachea. Mind you, being an ageing old decrepit nurse, my curiosity got the better of me after reading your post so......googled it
? And wouldn't you know that one of the causes can be Auto-immune diseases! Typical eh
?I'm pleased to hear that your Bipap machine is working for you but not sure I'd cope with that at night because in addition to the SS, I also have several other medical conditions one of which is Fibromyalgia and I have enough trouble sleeping as it with that and the pain from it even though I have frequent bouts of chronic fatigue which isn't as great for sleeping as you'd think, just exhaustion with nodding off and on, never a good restorative type of sleep. My sister-in-law used to need a Cpap machine at night for her COPD and the noise from that alone would drive me nuts
?I shall let you know what the specialist says to me on Monday, but at least now I know I'm not alone with this weirdness going on with my voice and that's curiously comforting
amkoffee hippyginger
Posted
I wonder if you're coughing in your sleep. If your husband is hard of hearing I'm sure he wouldn't be able to tell you if you are. You might try getting a pillow wedge that will help to elevate your upper body when you're in bed. I know most people will just use a second pillow but I find it does number on my neck when I do that and it only lifts your head not your chest. Another thing is that it could be from sinus drainage which could be caused from allergies that are causing a post nasal drip. That too will affect your voice. I'm guessing you're not taking prednisone since you didn't mention it, but if you are, prednisone is known for changing your voice. Finally the cough that you were experiencing although you describe it as dry I would think that the pulmonologist needs to take a chest x-ray. He needs to rule out a disease called bronchiectasis. It is a problem for people with SS. It is the overproduction of mucus so the fact that you are describing a dry cough would make a doctor and think it is not bronchiectasis. But I still think it warrants a chest x-ray. And if all else fails my next recommendation would be to see an ear nose and throat doctor. I am on Prednisone for another condition and I do a steroid inhaler daily as well. And, like you, I rinse vigorously. I even brush my teeth and tongue afterwards and yet I am plagued with thrush time and time again. That is until I saw an ear nose and throat doctor. He suggested I take thrush medicine prophylactically on a daily basis. Since then I've been taking one clotrimazole troche a day and my mouth has never felt better.
hippyginger amkoffee
Posted
Thanks for your input amkoffee but I've already had a chest x-ray which showed nothing but healthy lungs
?That was a surprise result in itself since they must be about the only part of me that IS healthy looking
? As an ex-nurse I would have been the first to ask my GP for a chest x-ray if he hadn't suggested it, but thankfully we're lucky with our GP who's always on the ball. Interestingly enough, my peak flow rate is consistently good when I'm not suffering from almost constant asthma attacks that then cause asthmatic bronchitis, which is the only time I get put on a short course of steroids. I can only put that good peak flow rate down to years of swimming having built up my lung capacity.
?I don't cough at night as I've asked other family members when they've been with us in our touring caravan. The only thing I've had complaints about was the snoring but I'm not the only one doing that and when I had my broken nose fixed, they did do a sleep test to see what was causing my snoring so that they could suggest treatment for it, which they did. Unfortunately, (and it's quite ironic when you think of my current situation re the voice), they said it could affect my soprano voice! So, I decided to stick with the snoring albeit I have tried different methods for that over the years with minimal success and since most of the time it's only my hard of hearing husband who has to put up with it, it's not too much of a problem until we have others staying lol I am also unable to sleep with 2 pillows or even a memory foam V pillow because they all cripple my neck pain that I have due to cervical spondylosis. That the TMJ pain is why I take 50mg of Nortriptyline before bed.
?I do like the sound of your daily prophylactic thrush prevention tablet though and will be mentioning that to my GP next time I see him since I'm getting through rather a lot of tubes of oral Daktarin these days, and I've now sooooo gone off of things orange flavoured because of the sickly orange taste from that! Like you, I do the most vigorous gargling and rinsing each time I've used my inhalers and also brushing my teeth and tongue. Nightmare it is, as you well know.
?I daresay that my next referral will be for the ENT mob and am pretty much expecting the respiratory clinic to do that very referral when I see them tomorrow. Watch this space lol
?Thanks again for your post
hippyginger
Posted
Saw the Respiratory medicine mob today and hopefully, this will resolve the coughing at least which in turn could stop the voice business!
?
?Because I also have a hiatus hernia, the specialist thinks that this could be causing acid reflux which in turn is the cause for the cough to clear my throat or it will turn out to the Sjogren's causing it, but I'm prepared to try the new medication regime to eliminate it being caused by the hiatus hernia.
I'm already on Omeprazole for my hiatus hernia so she's suggested doubling the dose to 40mg a day for a month and see if that helps. She's also suggested that I increase my preventor inhaler to 2 puffs twice a day for a month as well to see if that sorts out my tickly cough.
?I thought my lung capacity was quite good since my peak flow rate is usually around 450 but that's not what todays testing said at the hospital lol The specialist said my spirometry results weren't good at all since they were in the low hundreds!
?Anyway, I had more blood tests including some for allergies so I'll see what, if anything, they show up at my next appointment which they'll be sending me.
?So, it looks like any ENT referral isn't imminent and I'll see how the increase in my meds goes. Watch this space lol
lily65668 hippyginger
Posted
Have you tried raising the head of your mattress or bed? Not just extra pillows, as this can make things worse by doubling you up in the middle. (I think someone else has already made this point.) I put a rolled-up blanket under the head of the mattress. Some people raise the head of the entire bed on something suitable.
I've managed my GERD this way without medications for 40 years now. I also find it helps to avoid constipation as far as possible and above all avoid tight trousers!
As well as the above, I've managed my diet over the years so that I avoid eating foods that cause reflux, especially late in the evening. Bread is the worst offender for me. It was only a few years ago, when I got a new GP after a house move, that I learned that bread is highly acidic.
hippyginger
Posted
Hi Lily, thank you for your suggestions and this may sound awful but my reflux really hasn't been a problem since starting on the 20mg of Omeprazole even before my gastroscopy diagnosed the hiatus hernia. In fact, I'd only had one really bad night of awful pain because of it and went to see my GP the following morning and he put me straight on the Omeprazole. I suppose I've been fortunate not to suffer from any constipation but when I tell you that I also have IBS and slight faecal incontinence, (sorry if TMI), some days I'd happily welcome constipation lol
?So far after 2 mornings of taking 40mg of Omeprazole I've yet to notice any benefit re the need to keep clearing my throat so I'm even more convinced that this will prove to be down the blasted Sjogren's.
?I have a painful neck condition called cervical spondylosis for which I take 50mg of Nortriptyline before bed and having my neck at any angle other than in line with my body causes severe pain, (and pins and needles down my arms), so to avoid that I have to sleep fairly flat and to be honest, if it's a choice between neck agony or the annoying cough, I'll take the cough please
?So far, I've not noticed any benefit of using my preventor inhaler for 2 puffs twice a day yet either and in fact I had to use my reliever yesterday too! I'm sticking with the new regime though in the hope things will settle down.
?Thanks again for your advice Lily.
christine26761 hippyginger
Posted
Had SS for over thirty years, after years of having a horrid loud cough that comes from no nowhere, just happaens..was diagnosed with a floppy trachea or windpipe which is trearAble, one cough and the lung specialist new what it awas , I was amazed, hardly ever cough now, after local GP treated me for asthma for years...I still have asthma but this was not it,
be blessed hippyginger and have a lovely dayqq😍😍🙏
christine26761 hippyginger
Posted
PS I forgot, The specialist also gave me a BiPAP machine...a tad different from a CPAP machine just to keep my airways open at night, I dont have to raise my bed but it would be helpful if you don’t have a machine😍
amkoffee hippyginger
Posted
I've had a hiatal hernia for many many years but it's very small or mild whatever you want to call it. I've also had to take PPI for years and my doctor started giving me a script for 40mg of omeprazole just like your doctor's going to do for you. I hope it works for you because that is such a simple fix. Of course there are side effects such as making your bones brittle.
BTW I love the name you picked for this site. I am assuming by hippy you mean long hair and peace signs not like big hips. LOL
hippyginger amkoffee
Posted
Oh amkoffee, if only my username was purely to do with my long hair, (red), and the fact that I was a young hippy back in the day lol Sadly though I am also quite 'hippy' in the hip region too lol
?I'm on Adcal D3 twice a day anyway because I also have Osteopenia, lucky me eh [cry] Hopefully that will help in the brittle bone area.
?Have now been on the 40mg of Omeprazole for 11 days and so far, no difference whatsoever unfortunately. Voice still doing it's weird thing and it's just soooooo frustrating.
Tomorrow we are going to be spending the day with a couple we've never met from Switzerland who are friends of one our nephews and his wife. I'm just hoping I can make myself understood with the voice going from croaky to high pitch to nothing at all! The husband speaks perfect English but the wife struggles so I'm expecting there to be lots of hand signals since my German is a bit iffy these days, (only did it for one year at school), even though my French is pretty ok but she speaks German Swiss. Hoping we at least have a fairly dry day at the National Country Show in Chelmsford tomorrow.
?Toodle pip for now.
amkoffee hippyginger
Posted
Dear hippy, omeprazole works best after about 2 weeks of use and you're not quite there yet. Although I should think that you'd see improvement by now if it's going to work, but you do want to give it at least the full two weeks. You didn't say anything about being on prednisone. Prednisone can cause croaky voice. I wonder if you're on a medication that can be causing this. My voice has been very croaky the last few days and I have to really work at getting the words out so that they can be heard. But in my case I'm on a low dose of prednisone. And for some reason my voice will get better and then worse and then better and then worse even though I'm still taking the prednisone and the omeprazole. I once knew a teacher who taught middle school and had to stop teaching because she completely lost her voice...permanently. She could not even make a sound. She had speech therapy and the last I knew she was really working hard at getting out a word or two now and then. But you really can't teach if you can't talk.
hippyginger amkoffee
Posted
Sadly, amkoffee I've been on Omeprazole for several years since my hiatus hernia was diagnosed, albeit only 20mg a day. But having now been on the 40mg a day for over 3 weeks as prescribed by the respiratory specialist and still no change with the voice problems. I've only got to continue on the 40mg for another 5 days and then it's back to the 20mg a day.
?I've just stopped doing my preventor inhaler at 2 puffs twice a day too because it's made no difference to the voice or the breathing and the constant battle trying to keep the oral thrush at bay from that was doing me in! I've so totally gone off of all things orange because of the amount of Daktarin gel I'm getting through. No matter how much and vigorously I rinse, gargle, spit and brush my teeth and tongue, it STILL persists! Now back on just one puff twice a day, I'm hoping it will disappear for longer between bouts.
?
Thankfully, I'm not on steroids permanently and only have them when I get asthmatic bronchitis, (usually not more than once a year), and the one time the medics thought I had Temporal Arteritis and only had to take them for a month before that condition was ruled out, (heaven be praised lol). My husband is on permanent steroids for Polymyalgia Rheumatica and his voice has been affected by making it less strong than it used to be.
Hope you're doing ok.
Kind regards,
?Hippyginger
amkoffee hippyginger
Posted
I was constantly battling thrush myself and I went to see an ear nose and throat doctor for help in this area. He quickly suggested I take a medication for thrush every single day. Since that time I have not had a case of thrush and I can now enjoy food like I hadn't been able to before. But I don't do the orange stuff, the Nystatin, that stuff is totally gross. You need to ask if you can take something called clotrimazole. This comes in what they called troches or lozenges whichever you want to call them. If you have an active infection you suck on five of these a day. But if you're just using them prophylactically then you just suck on one a day right before you go to bed. And they taste a lot better. Good luck to you and keep us posted please.