Did I Forgot How To Swallow?

[HopeSprings]

Or is my ANS just dumb? I'm having trouble swallowing. I had a few episodes last summer, but now it's happening almost every time I eat. I can chew and push food to back of my tongue fine, but from there the natural next step to swallow isn't happening. I'm suddenly conscious of this effort and have to mentally prepare to get it down. I feel like I'm going to choke. I told the neurologist when I saw him last month and he asked me if I actually choke and I said no, because I'm chewing my food to death, but then we started talking about other things and never got back to this. It's scaring me - and thoughts of other (scarier) diseases are creeping in. I'm hoping it's one of those symptoms that comes for a little while and then goes away. Anyone else have this and is it all the time or does it come and go etc.?

[Katybug]

I have it occasionally but not regularly. But, you should call your neuro if it is progressive. It can also be an indication of Chiari in addition to some diseases.

[diabeticgonewild]

Difficulty swallowing can be a sign of AAG, also.

The rarity of AAG is makes that possibility discouraging, though.

[lieze]

I've had issues with this also where I have actually lost my swallow for a few seconds and this other odd issue with flipping the food right down the back of my throat inadvertently. Scary! I was always afraid it would end up in my lungs and I'd get aspiration pnemonia.

I'd be on high alert for about the next five days expecting fever etc.

It never happened and the swallowing got a bit better not worse.

I've learned to hack things up when this happens.

I also have things sometimes stick in my esophagus where it feels like peristalsis of the food down to the stomach just isn't happening.

It sometimes gravitates up instead of down.

I never have choked yet thank God.

Good luck to you naomi. I hope this improves for you or becomes less of an issue in time.

[E Soskis]

I think that dysautonomia in general causes excessive dryness of mouth, eyes, and throat. My mouth is so very dry that by the evening, my tongue actually curls up. I keep bottles of water and mints around but, it is terribly uncomfortable. It also interferes with swallowing. I too have food stick in my throat just from dryness. Lately, I have wondered if I am aspirating some of my food - especially liquids. I get short of breath when I eat and cough excessively after eating. I do choke on food pretty regularly and have episodes where I simply cannot swallow well - like during flares of the AAG. The neurologist says that if all of this keeps up, I'll end up with a feeding tube of some sort. I don't look forward to making that decision - I'm not sure I will go down that route.

Naomi, I think I would act like a raccoon and be sure you have enough moisture in your mouth before attempting to eat - raccoons dunk all their food in water before eating because they don't normally have enough saliva to swallow (unless they are rabid!)

[HopeSprings]

I tested negative for the antibodies (forget the test name) for AAG so I don't think it's that. I considered the possibility of dry mouth because my eyes are so dry it would make sense, but it feels more like the muscles don't know what to do. I'm just not sure? Sorry this is such an issue for you, Soskis - it's really unsettling to say the least.

[diabeticgonewild]

Naomi,

Even though dry mouth can possibly cause difficulty swallowing, peristalis is an autonomic regulated function, where food is moved down, starting at your throat.

So, if you have autonomic nervous system problems, this is also a possibility. Certainly bring it up to your doctor.

By the way, only 50% of people with AAG (approximately) test positive for the antibody, so that still could be a possibility.

[Foggy01]

Yeah difficulty swallowing seems to be common. This sounds related to what others and I have gone through in regards to loss of sensations such as the impulse to breathe and swallow and such.

[blueskies]

I can't eat without drinking. I feel like the food is sticking in my throat -- it's sort of like I'm washing the food down. I chew my food, swallow and then sip water immediately after each mouthful. Not sure why I do this. I started doing it years ago -- at least 15 or so. I can eat foods like yoghurt without drinking because it just slides down.

Sometimes I will experience moments when I can't even swallow my spit. I'll have to have a few tries before I manage it.

It's a shame your neurologist did not remember to return to this concern of yours at the appointment. Perhaps talking to him about it again might be worthwhile.

blue

[sue1234]

I have found that my esophagus seems "spastic" for a lack of a better word. I swallow the food, but it seems like my esophagus is uncoordinated in its motions. I do occasionally feel like something might get stuck. In regards to medications, I have to have tiny pills or liquids. I absolutely cannot get a larger pill/capsule to go all the way down my throat. It ALWAYS hangs up halfway down and I have to drink a ton of water for 10-15 minutes before I finally feel it has moved.

Diabeticgonewild, I believe you when you say that half the AAG people don't have antibodies. But, how does a person like that get a doctor to go ahead and try the treatment for it? How do they assume someone has AAG without the antibodies? I tested negative for them, but fit the profile.

[HopeSprings]

Diabeticgonewild, I believe you when you say that half the AAG people don't have antibodies. But, how does a person like that get a doctor to go ahead and try the treatment for it? How do they assume someone has AAG without the antibodies? I tested negative for them, but fit the profile.

Yup? same question.

[MomtoGiuliana]

I've had this problem in the past when my symptoms were worse than they are these days. I hope you get answers from your neurologist. I know it is scary and uncomfortable.

[Darlene]

i have difficulty too.what is aag?

[HopeSprings]

AAG is Autoimmune autonomic ganglionopathy

http://www.ncbi.nlm.nih.gov/pubmed/19349706

Do those of you who have AAG also have postural tachycardia? Or orthostatic hypotension?

[diabeticgonewild]

I have found that my esophagus seems "spastic" for a lack of a better word. I swallow the food, but it seems like my esophagus is uncoordinated in its motions. I do occasionally feel like something might get stuck. In regards to medications, I have to have tiny pills or liquids. I absolutely cannot get a larger pill/capsule to go all the way down my throat. It ALWAYS hangs up halfway down and I have to drink a ton of water for 10-15 minutes before I finally feel it has moved.

Diabeticgonewild, I believe you when you say that half the AAG people don't have antibodies. But, how does a person like that get a doctor to go ahead and try the treatment for it? How do they assume someone has AAG without the antibodies? I tested negative for them, but fit the profile.

I am working on a Wikipedia page for AAG, along with another member.

Here is a way it is diagnosed when the antibodies are not present. It consists of a variety of tests (blood and cardiac imaging), some of the names I do not know.

Patients with AAG have a unique laboratory profile consistent with impaired ganglionic synaptic transmission. Levels of plasma catecholamines are low while imaging of cardiac sympathetic innervation is normal [see Primer on the Autonomic Nervous System for references]. This pattern of normal cardiac sympathetic innervation with reduced sympathetic activity is unique, and best explained by impairment of neurotransmission at the level of the autonomic ganglia. [Reference Primer on the Autonomic Nervous System-it's a book]

Here is a Wikipedia page about it. We have a lot of work to do on it. http://en.wikipedia.org/wiki/Wikipedia_talk:Articles_for_creation/Autoimmune_Autonomic_Ganglionopathy

[diabeticgonewild]

AAG is Autoimmune autonomic ganglionopathy

http://www.ncbi.nlm.nih.gov/pubmed/19349706

Do those of you who have AAG also have postural tachycardia? Or orthostatic hypotension?

I was initially diagnosed with POTS. About three years later, it progressed to orthostatic hypotension.

But, I was never actually treated for POTS, so who really knows. I just managed to get by.

[E Soskis]

I have profound bradycardia from the AAG - my heart rate dropped to 20-40 beats/minute - so, on the tilt table test, instead of my heart rate increasing, it actually decreased - somehow I remained conscious long enough to hear the physician counting down my heart rate 50, 40, 20...then, I passed out. Needless to say, I ended up with a pacemaker. I remain hypotensive - I take midodrine regularly just to keep my systolic BP above 100. I can stay conscious now with a systolic BP of 60 and have even walked out of the hospital with a 60/40 BP - the body can adapt - not fun but, adaptable......probably shouldn't try to walk or drive with a BP that low - kind of scrambles the old 'noggin!

[HopeSprings]

I was initially diagnosed with POTS. About three years later, it progressed to orthostatic hypotension.

This is what I've wondered.. if POTS is just the beginning sometimes.

[HopeSprings]

So in reading a little about this, sounds like some autonomic testing can give clues if blood tests are negative. There is a sero-negative AAG. I would imagine finding a Dr. to diagnose that would be pretty tough though. Soskis- a heart rate in the 20's? I can't imagine how bad that would feel. Is there treatment like IVIG or something for this?

[diabeticgonewild]

This is what I've wondered.. if POTS is just the beginning sometimes.

The onset of orthostatic hypotension was pretty insidious, but the POTS could have been orthostatic hypotension that kind of improved on its own.

AAG started with bladder problems for me 19 years ago, then to gastroparesis 9 years later, then to POTS/Orthostatic hypotension 4 years later. Each time these things happened, it was always an "acute onset".