Loss of appetite

Thanks Tumtum, how do you keep from losing too much weight. For me since I had septoplasty I feel nasal dryness and throat dryness. Have you developed food allegies. Does your throat feel unresponsive?

Thanks Megheart. Not always but sometimes especially when I use saline solution. Can anything be done or given for dyamotility?

Hi Megheart,

Who should I be seeing for this a neurologist or a GI?

Hi Aitarg. I have a few questions for about what you're explaining. Approximately what age would the age related swallowing issue start showing can you tell me?

Also, if I say that cold foods have become very difficult for me to digest now - they often seem to cause a horrible shock pain in my throat oesophogus - where dry things can be quite manageable for me as long as I can nibble at them while sipping on a large mug of warm or hot liquid. Does this suggest neuro problem, dryness or ageing (I'm 54) do you think? I do get really hoarse when I'm tired and the neuropathy is flaring around my face - and yet my oral consultant says my mouth really isn't very dry as I'd been assuming it must be? And last question - does it make a difference to treatments which type we have? To be honest my relationship with food seems to be permanently tarnished because of this - I can't bear slop, cold yoghourt with fruit - all I crave is toast with marmalade or marmite and endless cups of tea! 

I had a barium swallow test done. The GI said it was fine while the speech and swallow specialist found small amount of food in the lower esophagus getting left behind. My Rheumy can't believe the test came back normal. He has ordered a monametry test and thats where I am now. My fear is that the ENT recently put a tube down my throat and I had a bad reaction to the novacaine. Im scared, has anyone else had this issue and is this the only way this could be done?

A manometry test is the way to go if you want to eliminate oesophageal paralysis. So your Rheumatologist is on the right track.

I don't want to put you off but of all the tests I've ever had in all my life I felt at the time this manometry one was the worst, however mental stubborness got me through.

My Barium swallow test didn't show anything but my oesophageal manometry was quite abnormal. At that time 2008 'til 2013 when my GI paralysis was at it's worst, I was on a liquid only diet. Pureed soups, sauces, sustagen, ensure, custards, yoghurts etc. I was also prescribed a prokinetic Domperidone (Motilium) which I am still taking.

Of course as others have said your problems may be due to dryness etc but best to eliminate the dysmotility first.

First:  unless You're American like me & call herbals/tissues "tea", just know that real tea is an astringent ,,, until sugar is added, lol. Don't ask me about the chemical change that comes from adding lemon to real tea because IDK!

I only know that I ended up having a barium swallow at about your age.  It showed only age related changes.  My ex didn't have trouble til he was about 65.  Another woman I know had no trouble til she was 90!  But she is generally much healthier than my ex and i are.

After the test, I started practicing swallowing with force, without anything in my mouth.  No one told me to do this & some might well laugh, but It's a mechanical function of voluntary muscles so I "exercise" them this way & it helps me.  I did have to start seeking other configurations of my sleeping pill as the most common generic pill idiotically has 8 viciously sharp corners.  I will never be able to swallow that again. 

I understand about wanting your toast.  It's one of the most consoling foods on earth, IMHO.  I so feel for our friends here who can't eat it, nor chips, crackers, etc.  I consider us to be very fortunate.

The issue with cold things sounds like a spasm, perhaps, happening below the swallow?  For many with us here it seems that cold things choke them, which sounds different as it either prevents the swallow completely or forces some into the airway in a complete choke mechanism.

I'm talking as if I know something, Tumtum.  Really i'm guessing based on what people describe.  All of this could have neuro factors except possibly the "It's only age related changes."  BTW, it took me decades to come to love yogurt.  It was sheer desperation with dry mouth one morning that drove me to try the applesauce in my mouth that was so dry I couldn't speak.  If it Didn't help me, believe that I wouldn't touch that slop!

Facepalm:  of course you're not an American!  Tea, toast and marmite!  Must've had a but of hurricane brain, lol.  Hope thus made sense 😁

Thanks so much Megheart -I'll wait on the gastro appointment with realistic apprehension! 

Sorry I never replied to your earlier hurricane tale Aitarg. From my perspective, as someone who has lived in the windiest islands off the Scottish coast for 28 years- huge winds have battered my life so often.  The landscape caters for them, houses have been built for them. But they really aren't great for an anxious Sjogi like me so we left to live on the mainland quite recently and it does make a difference.

I know this is sudden and on a different scale and much worse.    But viewed from a land where the geological consequences of the Big Bang, which brought dinosaurs to an end, is still very visible - the human race will keep paying a price for global warming. 

Your description of ageing reminded me of one of my favourite books by a favourite writer - Atul Gawande's Being Mortal. Have you read it? It is a brilliant book! 

My relationship with food is unhealthy anyway as is my high weight  -but the constant rancid taste and facial pain, swallowing issues and IBS-c or dysmotility have just about polished it off! If this is being mortal i.e ageing - I'm really dreading the rest! 

I found your post very interesting aitarg. I'm 73 and started having minor difficulties swallowing a few years back. Dry mouth was my first SS symptom 22 years ago, but seemed to clear up in under a year. Since then I'm rarely aware of dry mouth symptoms during the day, and seem if anything to have too much saliva. (Sorry - not trying to make you jealous!) I get an occasional episode of lips/cheeks sticking to my gums, but it never lasts more than a day or so, and my teeth are in good order. Nights are a problem, so I'm going to see if biotene gel (recommended by you in an earlier post) is available here.

So... no sicca-related explanation as to why I sometimes have swallowing problems. Bread has always been a problem, even since childhood. I can swallow it OK, but it can get stuck halfway down my oesophagus. I can feel it there. This has now started happening with sticky foods like potato. Bread isn't too much of a problem - my stomach hasn't coped with it since the menopause, so I eat very little these days. I do, however, love potatoes so have to be careful when eating them.

Strangely, my most recent problem is with swallowing tablets. If I can swallow most foods with no problem, why the heck can I suddenly not swallow tablets? I even have to chew my tiny L-thyroxine pills these days. This means I can only take uncoated tablets (as opposed to pills or capsules) if I can chew them, with the result I've had to abandon glucosamine. Have you ever tried chewing one of these? They're made from the shells of crustaceans and taste like it! (Sorry aitarg - I know you don't like seafood!)

Coated pills and capsules were OK till a few months ago, but now I can't seem to get my daily fish oil capsule down. I don't know what happens, I actually swallow it, but can still feel it in my throat. I know this isn't my imagination as when this happens I get very strong wafts of fish taste coming up into my mouth until it's dissolved. (Sorry again, aitarg - I suspect I've got you gagging now!)

I clearly don't have a problem with my oesophagus, as I can swallow most things in the way of food. So what is it with these innocuous little fish oil capsules? They're the famous 7 Seas brand (which the Brits on here will know) made of hard gelatine, egg-shaped and 15mm long, 7.5mm wide - that's about 6/10 x 3/10 of an inch. Obviously another of life's great mysteries that I'll just have to learn to cope with... (sigh).

Doesn't everyone have a problem swallowing hot liquids? I can't swallow them and always thought it was a normal protective mechanism. Then again, I've just remembered that appalling case in the US quite recently, where the little girl drank boiling water for a dare.

I hope you haven't been washed away. I just checked the American Statesman site, and see that the rain forecast for your city has been downgraded a bit, but still heavy.

Thanks, Tumtum.  The only time the wind EVER stops at home on the coast is ,,, after a hurricane, when the power is out, it's 100% humidity & usually quite hot b/c it's summer n Texas.  You need that AC so bad but could almost make do with normal 12-15mph steady ( often 20-25mph steady) but ,,, dead calm.   This one is different, it's brought the temp way down, maybe 68°F last night.  I'm wearing a sweater!

Totally freaky.

 I haven't read that book but have heard of it.  

My house is under the flight path for commercial flights when they're so low & slow that it's quite easy to pick out my house.  Am thinking of inviting environmental groups to put a sign on the roof:  Climate Change is Real, y'all!  It's the state capital so lots of politicos will see it. 

Thank you one and all who have been concerned about me & Harvey.  I'm an educated intelligent climate-change believing woman with many fierce hurricanes under my belt, yet I simply did not believe last week's predictions of 20-40" of rain over my neighborhood, east of Interstate 35, in Austin, far from the coast.  Did not think that was possible.  I didn't pack up & head farther west.

  It is merely the vagaries of weather that my dog and I didn't require rescue.  I haven't heard from family & friends in Houston, but I know that it can take 2 or 3 weeks sometimes just to hear that someone is safe.

If you pray, please pray that all American deniers of climate change begin to see the light, including my president.

Amen to that last sentence!

Hi aitarg35939,

I didn't realize you were out in Texas. Glad you are ok. Praying for those affected by the storm. Hope you are able tp reach friends and family in your area and that they are safe.

Hi Lily

There's nothing dripping from the food's edge, no water standing under the pecan, the drainage ditch has no water in it (couldn't call it dry, will need at least 10 days to dry the ground, lol), and we can tell that a sun exists somewhere on the other side of the clouds again!  Stopped raining here sometime after 2 a. m. this morning.  So sweet of you to check the Statesman!  Tears came to my eyes when I read that.

Back to our swallowing/eating issues.  Are you sure you've never had GERD and/or a small hiatal hernia?  I ask because of your lifelong issues with bread & potatoes.  Those are hallmark issues/symptoms.  Of course, avoiding them is the easiest treatment & you already do that.  But GERD & hiatal problems can also affect swallowing other things &/or getting them through that blasted opening into the stomach.  When things get stuck in that herniated area it can feel like a rock in the chest.

There's a product used in good nursing homes to help folks swallow pills, can even be used with many PD patients.  Am sorry to say I have to wait for the name; dear friend whose diabetic,  PD husband received the stuff just passed away.  I want to give her a week before asking her for the name of the product.

I have trouble with the newish vegan capsules which begin dissolving the instant they hit liquid in the mouth, versus the tougher old gelatin capsules.   I'll see you your throat dissolution and raise you the explosion of 2 turmeric caps mid-throat!  The only thing I know to do at that point is to eat food and drink thickish liquid.

I do have a trick for swallowing pills.  For those who don't know, it's counter productive to swallow anything while your head is tilted back.  That position constricts the throat.  But it helps me to tilt my head back after meds & water are in mouth, then bring head down toward normal & swallow.   Meds get floated back to furthest position on the tilt which makes it easier to swallow them.  DO NOT TRY THIS IF YOU HAVE BIG C-SPiNE, GAG REFLEX or DIZZINESS  PROBLEMS.  I am not a doctor.   This is just a motion I developed after I was diagnosed with age related swallow changes.  I take so many pills and suddenly couldn't take them by the handful, so I started my swallowing exercise and "found" this technique.

Other than that, I got nothin'.  As I said to TumTum earlier, she and I are the lucky ones who can still eat things like toast. Sometimes I feel guilty while eating stout crackers or blue corn chips because I know that so many of y'all can't touch deal with them.

Love to all

Aitarg 

Yikes!  Nothing dripping from the roof's edge!

Oh, I've known for years that I have GERD! I used to get acid coming up into my mouth after eating bread even as a small child, and I started getting attacks of severe pain behind the sternum in my mid-30s. Interestingly, I only learned very recently - from my GP - that bread is one of the most highly acidic foods you can consume, worse even than lemon juice or vinegar!

I've never had it formerly diagnosed. I had enough medical knowledge to work out what it was and have treated it ever since by identifying the triggers and avoiding them. Apart from bread, which is a total no-no for me, it seems to be combinations of foods, rather than individual foods, that cause attacks. Timing is also important. A lot of things that are fine at lunchtime are best avoided at dinner.

Lying flat in bed is another obvious cause. I started raising the head of my mattress 20 years ago, when I was getting at least one attack every night. Since then, I've only had a couple of night-time attacks per year. Getting constipated will do it too, as will wearing too-tight pants!

I eat just about everything apart from bread, though I avoid junk foods and refined sugar. Fortunately, I don't have a very sweet tooth, so this is no hardship. (It's not that I think sugar is implicated in GERD, but it seems to be implicated in just about everything else.) I mainly avoid problems these days by managing combinations of foods and the time of day I eat them. I even drink wine every evening! I've long since identified which white wines are too acidic for me, so I avoid them. I get along just fine with reds and all the other whites.

Thanks for the swallowing tip. Unfortunately I can't tilt my head in any direction at the moment. Much to my annoyance, I've got another attack of BPPV - the second this year, and in the opposite ear to the last one. At least I know the culprit this time - my bluddy dentist! Last week he applied veneers to three of my teeth which had become over-exposed by age-related gum shrinkage. He used the slow-speed drill with a file attachment on it to polish the surface first, so the veneers would stick. The vertigo kicked in the minute he started, but I didn't like to say anything. Should have - by the time I got out of the chair I knew what had happened. I'm booked for a return match next month to have a couple more done, but I'm going to call him and ask whether it's possible to prepare the surface without using low-frequency vibrations (known to cause movement of ear crystals). I had a couple done by a different dentist some years ago, and he didn't use this polishing method.

I look forward to hearing about the swallowing aid product.

Really glad to hear you seem to have avoided the worst of the flooding.

I really don't feel lucky for  being able to eat toast Aitarg! I'd trade eating a liquid-only  diet for getting shot of the rotten taste of sour milk and not have numb, tingling face and burning lips and gums! Although I'd give a lot for not having any of this rubbish to contend with very happily too! 

Thank you!  Got word late Monday that my Bro was okay, his neighborhood hadn't flooded thus far.

I'd have trouble with that taste in my mouth, too, Tumtum.  Sounds awful.  Wish there were magic wands so we could get rid of all of it.

I've always drunk hot drinks hotter than most folks around me, Lily.  My ex won't have taken his first sip when I've already finished my coffee.  My father was almost as bad.  At home I use a demitasse saucer as a lid on all hot drinks, to hold in the heat.  Still, Mc Donald's coffee is too hot for me -- lots of lawsuits on that issue for 30 years.  Straws in hot drinks are also a problem, removing the opportunity for lips & tongue to say, "too hot, too hot, spit it out" before the liquid hits the back of the mouth.  Yes, It's a protective measure but just as subjective as defining sweater-weather, I think.

There are kids all over the country doing the stupid boiling water challenge now.  The stupidity is mind boggling.

After I posted that about how I take pills I realized that I never put pills on my tongue because they can get stuck while I get a glass of liquid up to my mouth.  I throw all pills under my tongue, then do my awkward maneuver to get them swallowed.

I can understand how any grinding or lengthy sanding in the mouth would set off any form of vertigo one might have.  I don't envy you, said the dentist-avoider.

Yep it really is my no.1 most hateful symptom and I have a few!! I love toast with gallons of tea because it's comfort food to compensate briefly for the taste. But we have banned it from my diet on the whole because of my being so overweight and the IBS-c or neurogenic GI issues. How I pine for my toast and tea!! 

So glad your brother is okay. 

Tx

Hi again. I get oralieve gel here in the UK on prescription but it can be had OTC. I keep a tube on the bedside table, as well as the last dregs of bedtime cuppa. During my several waking up moments at night, I reach for one or other. Without needing to turn on the light.

Should I wake with a tickle or actually coughing, I also have a very small screw top plastic container. In that I have Salivix pastille (also on prescription). Along with the chewing gum, I carry a few of those in my Meds pouch in my handbag.

 I often wonder if I should cut back on bread. My rheumatologist said I am not gluten intolerant, & as one of her specialities is SS I have faith in her. In reality, I don't eat a lot of it anyway; at our age one needs a few pleasures! Toast and jam can be so satisfying.

keep well. Xx

Thanks Estelle. I doubt it's available on prescription here but I'll ask at my local pharmacy whether I can get it OTC. I wouldn't need to use huge quantities of it, as I rarely have a problem during the day. It just night-time, when I often wake with my tongue stuck to the roof of my mouth and completely unable to swallow.

I don't think I'm gluten intolerant either. I've always had a bit of a problem swallowing bread, but ever since the menopause I seem to have problems digesting it too. Hard to describe, but once it clears my oesophagus, I get a sore, nagging sensation in my actual stomach, which lasts an hour or so. Sadly, porridge - which I used to love and is very good for you - now has exactly the same effect on my stomach, though not my oesophagus. Other foods that started giving me a sore stomach after menopause were raw apples and stone fruits - especially cherries and greengages, which cause really severe stomach pain even though they go down OK.

Oh, the joys of ageing...