Swallowing problems with eating or drinking?

[Sarahsmom46]

How many of you MSers have swallowing problem?  

I have had problems with choking or gagging on everything from ice chips and food and generally cough during my meals.  I have had this for a few years now, but always thought it was acid reflux.  I finally found out what is causing it and wanted to see if others have this problem too.

I never thought this would be an important issue for people with MS and other neurological problems, but now I take it more seriously.

My problem is in forming a bolus or ball in my mouth before swallowing.  I had a scope put down my through through my nose to see what was going on while I was eating a regular meal.  What we saw was really shocking to me.  Small particles of food were actually going down my wind pipe instead of the food pipe.  The coughing I've become so familiar with with meals was my bodies way of getting the food out of the wrong place and into the right place and not acid reflux at all.  

I learned a lot from the speech therapist on how to eat and drink and although it seems very cumbersome, but right now my problem is mild and mangeable. I want to keep it that way.  

If anyone else is having this problem and hasn't been diagnosed yet, I highly suggest you consider seeing someone about it.  What seems like a minor issue actually can be a big deal.  

Wishing you all a happy weekend and safe eating.  :)

Julie
So,

[jim134]

Hi Meg!

Thanks for the meaningful post with the "swallowing" group on MedHelp!

I also have a hiatal hernia and Gastrict Reflux disease.  Recently I have been having trouble choking on solids/liquids and am temporarily (thank heavens) am able to finally get my breath - breathing slowly to do it.

If the choking gets worse I stand up and bend forward which seems to make the food/liquid go down easier.  I have been to the ER several times in the past two years and they diagnosis the problem as nerves and give me a print out on calming down.

I am 77 years old so I suspect it is simply aging effects on the swallowing muscles etc. that propel the food down and get the windpipe (trachea) closed and out of the way.

Maybe some connection with GERD and hiatal hernia, but have no idea on what the connection might be.

Sarah (on this website) has given me some great tips on care, continuing to drive etc.  This condidition only happens when I am eating/drinking something.

Anyway, thanks again for your helpful post and sorry to ramble on.

Take care,

Jim134

[twopack]

Now listen here Jim, age alone is not sufficient cause for this kind of problem.  It is also NOT a good enough reason to assume you are going to have to try to ignore it or live with it the best you can!  Please stick to your plan to investigate this further.

In the mean time, I can direct you to another old discussion you might find helpful.  The poster describes a condition that is known by many names and causes symptoms similar to yours.  When you get there go to the last entry and see if any of it sounds familiar to you.  Just click on this link.  And good luck.

http://www.medhelp.org/posts/Multiple-Sclerosis/Thought-that-I-was-gonna-die-this-morningreally-scared/show/1420783

[jim134]

Hi twopack!

Thank you for the helpful advice on both posting on the site and consulting a speech therapist etc.

I am going to switch PCPs and get a second neuro opinion if possible (HMO issue).

The breathing/choking problem really concerns me as it just started about six months ago - before then for 77 years no throat/swallowing problem at all.  Of course this can all be connected to the neurological effects of aging, but we still all want to have the best life journey possible - it is just difficult to face the aging process at times.

I went to my present neuro yesterday for a check up and she said all was A-ok!  I have recently had an MRI, EEG and nerve response (?) exam using needles etc. Everything was normal - I just still have the symptomsI I no longer take the med she prescribed as it made no difference when I experienced the problem - just made me sleepy.

Twopack, thanks again for your post and best wishes to you in dealing with the mysterious world of diagnosing/treating the human condition! My malady is probably due to "age-itis" or something similar.

Jim134

[twopack]

Hi Jim.  No one has added to this discussion in almost three years.  Your question might get more attention if you start a new discussion.  
The easiest way is probably to:
Click-to-copy what you already wrote...
Scroll back up the page & click on the orange icon that reads "Post a ?"...
Click-to-paste your copied text in the "Your Question" box...
Add a title - be brief while trying to offer a glimpse into your concern...
Fill in other fields as desired...
Click the green "Post Question" icon and watch it appear.


In case you don't get that done, I'll leave my suggestion here.  You might want to ask one of these doctors about a referral to a speech therapist.  They are remarkable health care professionals who evaluate and treat swallowing problems (and some cognitive issues) as well as speech disorders.  All that stuff is connected in the nervous system.  I'd also suggest a second opinion appointment with a neuro.  You don't sound like you trust this one and I'm not sure I blame you!

You may want to think about consulting an ENT doc as well.  I'll keep thinking about this.  The sequence you describe has a familiar ring to it......

[jim134]

This is a great site for those with swallowing problems!

My symptoms started out with a feeling of fullness behind the right orbit (eye) and spread down into the throat on the right side only.  Now when I eat or drink something I get a "seizure" like problem and can't catch my breath/start choking.  It becomes worse if I try to drink fluids as I bring up saliva and mucus (sp) while trying to breathe while choking.

Concerned about this so went to a local neurologist.  She diagnosed it as a form of epilepsy (?) and prescribed some anti-epilepsy drug.  I believe totally wrong diagnosis!  I have never had epilepsy of any sort.

Unfortunately my PCP (HMO lingo) got the wrong "epilepsy" diagnoses from the neuro and based on the meds I was prescribed wants me to stop driving!  Legally M.D.s can do this in our state for what they believe are "seizure" problems.

I have been driving for 49 years and never had any type of seizure while driving.  The problem occurs only when I am eating or drinking something.  It is more like the food rubs on the right side of my throat and triggers the gagging/choking response - not when I am not eating.

Hope to hear from someone on this site with similar symptom/problem.

Thank you!

Jim

[Lulu54]

This is a good thread with lots of meaty stuff in it - thanks for sharing all these tips, Julie.

- Lulu

[Sarahsmom46]

I used to think that coughing was a bad thing while I was eating or after eating, but actually it is a helpful tool to get the food out of the wrong place.  But, too much coughing while eating is bad and that is why we need to strengthen the muscle at the back of the tongue and change our eating habits.  That is how the therapist explained it to me.  

I agree, it is hard being a living orgnism, but we make do don't we.  :)  

Here's to eating well and safely.  

Julie

[twopack]

Thanks for all the great information you shared here Julie. I really found it helpful.  That exercise with a big forced swallow while my tongue is against my front teeth is a hard one for me.  That must mean it's the one I need most, eh?

As much as I hate to cough and choke, at least my body is still reminding me to be careful and PAY ATTENTION.  Just think, it's possible for small fractions of the stuff we're swallowing to be slipping into the lungs regularly without being noticed until pneumonia announces itself.  Geeze, it's tricky being a living organism.

Mary

[Sarahsmom46]

I was given this article site from another friend with MS.  It is a very good write up on swallowing problems with MS.  I hope you all will read it when you have a chance even if you do not have a problem right now.  :)


Problems with Swallowing in MS.

http: //www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1645&CFID=4208915&CFTOKEN=41684034

[Sarahsmom46]

It is so GREAT to have you back with us.  We all missed you so much.  And, for the record, I knew abut your trach but didn't know you also had swallowing issues.  You can probably share some advice with us too.  

Take good care and glad to see you posting again.  

Love and hugs,

Julie

[ShadowsSister]

Did I miss it or am I the only one who has needed to have a tracheotomy? I have been living with a trachea tube since Dec 86. My throat is always in spasms and it cuts off my air way, plus I some times will have food stick in my throat while eating.

I love  our forum, and MISSED ALL of you so much, but lately My hands tend to jerk and I have double vision a lot of the time. This morning is a bit better so I am catch up with as many of you as I can. Just because I haven't been on line doesn't mean I for forgotten any of you or that I am not Thinking about you and Praying for all of you Daily.

Sometimes life ***** even when there are so many things that you feel happy about. We are able to be sad and happy at the same time. At least that's where I am at ,at this point in my life.

Sending out hugs to all of you...{{{{{{{~!~}}}}}}} Catch them on the winds blowing by
DJ

[Sarahsmom46]

I have the same problem with cake, and I really LOVE cake.  Same with biscuits and other flakey foods.  The speech therapist told me that if you take a piece and ball it up, then you can eat it.  But it is better to not eat is as it can cause choking problems.

I think the situation you were in with being around a group of people and eating is one of the most dangerous environments for people with swallowing problems, at least until you have been trained on how to eat when with a group. How frightening this must have been for you.

Most of my choking experiences happened when I was in a group, talking and not paying attention that food was not going down very well.  The speech therapist encouraged me to eat in a quiet place, no distractions i.e., TV, restruants, friends talking,  Again, at least until you have learned to better control the swallowing issues.  

When I go out with friends, I used to order only soup because I was afraid of the swallowing issue. But, apparently liquids from the soup and the small pieces of veggies or meat were also causing problems. How do we win this?  

Speech therapists are very helpful and I hope you look into getting help from them.  

Take care and thanks for your sharing your experience.  

Julie

[NiCeeGlover]

I have trouble with this too.I thought I was doing better because I don't have as severe numbness in my throat, and mouth as I have had. I choked on a small piece of chicken sitting on a chaise lounge in the middle of my daughters living room a while back. I swallowed and it wouldn't go up or down and I couldn't breathe. I can't move my left leg with out aiding it with my right hand. That day my right hand was numb too. I couldn't get anyone's attention for help as they were visiting and laughing, I don't know how but I scooted myself to the edge of the chair to the point of falling off before a man next to me said are you o.k? I shook my head no, I was in tears by the time they figured out I was choking. I knew I had trouble and was very careful when I ate. I was also care when I drank anything or swallowed pills. It was agreed by all that I not eat if alone, but in reality that is a lot.
I have done better in that area lately until just today. I haven't had cake in a very long time. My future daughter law graduated and brought me some cake in a Tupperware.  I remembered it this afternoon and was delighted to taste that yummy frosting ! LOL  But, I'd forgotten how dry cake can be.... I had a heck of a time, thank God a sip of water made it moist and I was able to work it down with a few more sips. Really scared me, it just stuck... no more cake for me... maybe a taste or two of frosting. NiCee

[missy72450]

BEEEE CAREFUL>>>> the problem swallowing is scary and when things get "stuck" it drives me crazy. I don't eat meat as a rule because it fills me anyway can not process the protein for some reason but I an not get it down sometimes. And like I said water it hard sometimes but if you are having trouble with everything you need to get into a speech therapist for some therapy.I would be a very rich women if I had a dollar for every aspiration pneumonia I have treated and every food bolus I had to assist on down to the stomach in my career ( I am an RN). This can be serious fella. Agan beeeee careful. I need you guys.

[johnnymutt]

What are you up to here, suggestive symptoming, lol. For the past two days, my problem has gone from saliva going down the wrong tube, to aspirating food every single time I eat. Obviously it's cut me back on the grub, which is probably a good thing :) . I've got a neuo appointment today, so I guess it was "good timing?",  if there is such a thing.

Ok, just thought I'd razz you up a bit Julie, for the odd coincident. :p

[Wind_and_Water]

Julie, thanks a bunch.  :)

[Sailorsong]

I also have COPD and acid reflux.. I had never heard of them being connected..Could you explain that more if you can?

Dennis

[meg321]

I have acid reflux and a l hiatal hernia but I also now have the swallowng proble with my food/drink going into my lungs instead of my stomach.

I do have COPD and somehow it is connected with acid reflux....

this is all so confusing sometimes..

hugs, meg

[missy72450]

what kind of stomach problems do you have.I have the swallowing thing it is almost like I am swallowing what is called a bolus of food and it can be a sip of water and it will not go down. When I am sick I vomit and have diarrhea for the entire time until I start steroids then I have completely the oposite. I actually lose weight the first week of steroids. I am still waiting on diagnosis they are treating it like autoimmune because t acts like autoimmune until they figure his thing out but now they are leaning towards MS and sending me to a new neuro guy who specializes in this. Scared is a mild term for what I am right now. If i could find the peron with the tazor who keeps putting it to my head or the one who turns down my energy when the heat goes up I would have them arrested. All of your posts have been great and helpful. Today after a couple hours in the early morning sunshine I took a cool bath and my day went better. I am already feeling like you all are the best.

[addicted2harleys]

I have has swallowing problems, too.  I am undiagnosed.  Food seems to get stuck in my throat halfway down....and it hurts.  This is even with liquid.  The first time, after several weeks of it, I went to the ER.  They diagnosed it as anxiety.  lol  I tried telling them that it seems to be centralized in my throat...not my chest.  They weren't listening to me though.

This time, I mentioned it to my primary and he has an upper GI scheduled for me for tomorrow morning.

This time, on top of the food feeling stuck and hurting, I seem to "forget" how to swallow.  And, I take in A LOT of air.  I can hear it gurgling in my belly.  lol  Anyone else experience this?

Thanks,
Addi

[Sarahsmom46]

OK, so here are a few exercises I learned from speech ladyI for tongue strengthing or as I like to call it "PT for your tongue".  They are designed to strengthen the muscle at the back of the tongue so we have more control over what is being swallowed.

Take a spoon and put the tip of your tongue against it and push as hard as you can.
Hold for 5 seconds
Do reps of 5-10 at least 10 times throughout the day.  

Bite down on the tip of your tongue and try to swallow. Make is a forced swallow as if you are tyring to swallow something big.  
Do reps of 5-10 at least 10 times throughout the day.  

There are some word lists she gave me using the letters "G" and "K" or "C" if it a hard C like cook, but you can make your own up.  Practice saying words that start/end or both start and end with G, K or C and really emphasize the letter itself.  Here are a few words that will help you get started or you can look up a list on the web.

Grab, Greek, Gang, Good....
Kitchen, Cap, Cook, Kitten, Kept, etc.
Practice at lesat once a day.  

Hope this made sense and better yet is helpful.  At least it would be a good start

Julie

[Wind_and_Water]

Yes, please explain the tongue muscle exercises.  Thanks!  :)

[Sailorsong]

Julie,

   I have tried to take a pill with water with my chin tucked down and it just won't go down. I think it has to do with my dry mouth as the pills stick to my tongue. I have to actuallly shove my head backward to get them off of my tongue even though I have taken a sip of water.

Dennis

[Sarahsmom46]

Try to take the pill with your chin tucked towards your chest next time.  I know it seems easier to toss your head back to get pills down because I used to do the exact same thing.  The therapist told me that this was actually unsafe especially if you have a pill and water in your mouth at the same time.  Next time you take a pill try putting the pill in your mouth and take a sip of water and before swallowing, tuck your chin down a bit.  It may feel ackward at first, but belive me it does work.  Let me know how that goes.

Julie