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i have been having trouble swallowing before and it has usually passed on after a few weeks, now it isn't. should i dig to see what is up. my new doc would like me to have a swallowing study done. is it really going to make any difference? is there anything i can do about it?

does anyone have experence with this? please, let me know.

my trouble seems to be that anything heavy just seems to sit there in my throat(meats, breads), sometimes even making me through up (sorry). it sometimes even happen after several swallows of liquids., i just feel like i'm choking.

any ideas?

thanks,

blackwolf

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hi

in my humble opinion, i think you should definitely check it out, Do you have other muscle weakness symptoms? Never heard of a swallowing study.

I also have trouble swallowing, (but have other muscle weakness as well) they're doing a workup now for myasthenia (i also have weak breathing and muscles weaken with repetivive movement) I'm not saying you have this, but there is some research connecting autonomic dysfunction to myasthenia, and it may be a good idea to rule it out.

Ariella

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Blackwolf, I have a great deal of trouble with swallowing and choking. I have esophageal motility problems and I also get a recurrent stenosis high up in my esophagus. I have it dilated every 2 to 3 months on a regular basis. It's a short procedure, and I've had so many gastros, I don't even go to sleep for it anymore. It drives my doctor crazy, because it's painful to get it dilated and I cry but can't make any noise, but it only takes about 30 seconds to stretch it, so no big deal for me.

They have several different kinds of motility studies. The best one is probably manometry. That is done out patient. They put a tiny tube down your throat after they deaden it a little and then you swallow sips of water and they watch how your esophagus moves. Mine is very disorganized. It just squeezes where ever it wants to.

But The choking is very scary, i know I've thought I was going to have to do a self heimlich a few times. It is rare to have strictures high, but then we are rare birds aren't we? He was trying to get me to go six months. I just had it done after 3 and he says never wait that long again! So I just call when I feel it starting to get tight and they give it a fast dilation. Barium swallows can also show problems, I just think there are a lot better tests out there now. good luck. And definitely check with your doc and if you don't have a gastro doc, get yourself one ! morgan

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dear ariella and morgan,

as much as i don't want to go i think i have to. i will call my new internat med doc to get a referal. i trust her more than anyone else anymore.

i am a little shy when it comes to working with my throat, i gag super easy and through up fast. i even have to be careful brushing my teeth, and boy look out if i have a doc who wants to see deep into my throuat. more than one has gotten a little more than they planned for. :o:angry:

ariella-as to other muscle weakness, i have chronic left side weakness- mostly effecting my legs, however, i do have times where i just can't hold onto anything and play "dropsy" most of the day. i also have periods of being easily fatigued with lots of tremors. again, not really sure why.

my new doc has a list of things she wants to check, as i do,i'll let you all know what comes up, or is often my case, doesn't :)

morgan-could i get some more info on what your problem is. web sit or jsut write back, here or email

thanks so much,

blackwolf

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blackwolf,

I have the same problem. My cardio is sending me for a neuro workup to make sure that nothing else is going on other than the POTS. He is suspicious of something I think. It'slike I forget how to swallow when I get something in my mouth -then when I remember I get choked very easily :)

Does anyone know if this is just part of POTS?

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There are voluntary and involuntary aspects to the entire swallowing process. Any autonomic disturbance can certainly cause problems. Certain medications can also contribute.

I've had terrible swallowing and gut motility problems and have been on and off a feeding tube. I'm tapering off some medications now that aren't helping, and while I still cannot eat solid foods I can swallow liquids most of the time, though it is still very labored.

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Hi,

I have trouble swallowing and had eosopagus paiin and spasms. My general doctor gave me a heartburn medication and it does wonders on me. I never knew that heartburn could cause so much problems.

Ernie

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Blackwolf, I have had a lot of gut and esophageal problems all my life. When All this got really bad, I started having chest pains that radiated to my back, like someone was trying to pull my front chest through my back. Yikes, it was awful.

Then everything I ate just got stuck half way down or I choked. Sometimes I couldn't get the swallow action even going. I have had to sit with something in my mouth till the swallow reflex kicked in, only to have it stick in my throat or halfway down.

I started with only periodic dilations, because they seemed to last longer back then. But I lost 50 pounds in the mean time. It would also help the spasms a little too.

Now I have to get dilated all the time on a fairly regular basis. I use nuLev occasionally for the spasms, but it has a side effect of giving me the trots. It loosens up everything!

My gastro says he doesn't really know why I get such bad spasms, but is pretty sure it goes along with OI. And the strictures are probably from 50 years of reflux. I do have a history of Barrett's esophagus, which is when the stomach lining starts to grow up into the esophagus, trying to protect it. That may be a part of it too. The problem is it's abnormal and puts you at a little higher risk of getting cancer of the esophagus. That's why I always say, never mess around with reflux, especially if you have it a lot.

So I think it's a combo of things. OI and years of untreated GERD. He says it's highly unusual for those high strictures, he seldom sees them and they bug him a lot, because he knows they make people choke a lot. I think I have a pretty weak esophagus, the waves that are supposed to go through it are pretty weak, unless it spasms.

I find very hot or very cold things make it worse. I think the swallowing problems have to do with the tightness being so high up, it just closes off and so I can't swallow well. Not looking at any other muscle stuff, although I don't believe I have ANY muscles anywhere any more to speak of, lol.

Hope that helps a little. If you want more info, feel free to email me. morgan

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thanks everyone,

ernie-i tried some heartburn type drugs and actually found out after i had my throat scoped a few years ago that was the worst thing to do. i only needed to eat smaller meals and "lighter" foods(ie. no beef or pork, certain kinds of leafy greens and large amounts of bread). i found out then that my stomache emptied slowly and that my "heartburn" was just a full tummy that wasn't emptied yet.

just a side note, i almost never fill full or hungry though i make a point to eat somethig when my tummy rumbles alot.

morgan-thanks for explaining it for me more, i have had this off and on for awhile, but now it seems to be so much more often. i know i need to lose some weight but not eating isn't the right way either.

i will go ahead with the follow up from my new internal med doc and see where it leads, but i will be back if anything does come up.

thank you again everyone,

blackwolf

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Hi Blackwolf..sorry I didn't respond earlier..but I just wanted to chime in here..I am/was a Speech Pathologist and the majority of my case load was dx and tx dysphagia (swallowing problems). You may want to ask your doc. to order a Modified Barium Swallow Study (if they haven't already). It's a non-invasive test done with video flouroscopy. A Speech Path. usually administers the test with the radiologist. You'd be given different consistancies of liquids/solids laced with barium..it show everything that's going on from your mouth to the head of your esophagus..it usually takes less that 10 minutes.

If the test indicates an esophageal issue..ie. strictures, ruflux..then you may be referred to a GI doc. to do a Barium Swallow Study..this one you drink some barium and they watch it go all the way down..it takes a bit longer but shows more with the esophagus..again it's non-invasive.

It gets confusing to some docs. because the names of the tests are very simular..but they really look at different things. Anyway..I hope this helps :unsure: ! Feel free to contact me if you have any questions..it's been so long since I've been able to work it'd be nice to "talk shop" again!

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wareagle

we have discussed this, but are waiting to see if it resolves itself in a few weeks, i'm giving it till the middle of July. i'm still having trouble, but...

i'm a little nervous about the barium studies, the last time i had it done, i got the worst stomach cramps and diarrhea. was it a fluke, is this a common reaction. i wasn't on any diet restrictions, just told not to eat any solids for about 4 hours.

everything seems to have flared up again, hard to walk, stiff, painful, tachy and brady, funny arrithmia, ringing in my ears, visual trouble(double vision and "floaters" and flashing lights), bladder and bowel trouble.

my hubby wants me to try and get one of those walkers that have the seats, but the price... OUCH!! :P and i don't know if we can get any of it payed for. i do ok, but if i push just a little, BOOM, i'm down.

ok, ok, i'm done whineing, but i wish i could just get a break.

blackwolf

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Guest tearose

Hi again!

I hate to be the voice of the opposite side...but...

could you wait it out a little?

is it possible you could manage liquids and soft foods for a bit?

I really understand how frustrating it is when we have symptoms and then they go away OR by the time they give you the test, the symptoms are not as bad OR the test does not show the problem.

If you are not gagging and can still breathe and take in nourishment, maybe it will pass. I am not the medical professional, you know, but I have some serious and horrible symptoms that as oddly as they come...they oddly go away!

I get this difficulty swallowing for a bit, like maybe 2-3 weeks and then it goes away! I know you have a lot going on but only you know if you can wait it out a little.

as always, best regards, tearose

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thanks tearose,

i already decided that the blader troulbe has to come first

thanks so much, i'm doing ok on liquids and soft foods, sometimes bread, but i'm keeping it simple with the meats, fish, chicken and turkey. still fill choked up, having trouble with some of my pills, only down side is that i can't cut or crush the 2 i really need to, i can get the rest down cut up more or, like the neurontin, open the capsul and poor it into applesauce, but... i'll make it

thanks so much for thinking of me,

blackwolf

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  • 1 month later...
thanks tearose,

i already decided that the blader troulbe has to come first

thanks so much, i'm doing ok on liquids and soft foods, sometimes bread, but i'm keeping it simple with the meats, fish, chicken and turkey. still fill choked up, having trouble with some of my pills, only down side is that i can't cut or crush the 2 i really need to, i can get the rest down cut up more or, like the neurontin, open the capsul and poor it into applesauce, but... i'll make it

thanks so much for thinking of me,

blackwolf

Lo and behold, today I suddenly developed trouble swallowing. Needless to say it was quite disturbing, and at the prodding of one of my parents I wound up going to the ER.

While the ER was not SUPER versed on autonomic problems, he DID say that it could be related to my POTS, and that I should have it checked out.

Question for the group: how many of you here have an exclusive dx of POTS, and have had trouble swallowing? I want to exclude the people here that may have PAF/or MSA as at this time I do not think I have either of those conditions. I am however concerned. Its my understanding that it would be very rare for someone my age to have MSA, as I am only 35, but you never know.

Thanks!

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  • 2 weeks later...

Hi guys,

I was wondering if any of you suffer from a gagging feeling in your throat?

I use to have it constantly (for aprox 2 years) and it always felt like i was just about to throw up yet it was very rare that i did.

You are mentioning trouble swallowing so i was wondering if it felt anything like what i described?

I have never been able to explain the feeling very well as i am able to eat and although my glands use to be swollen most of the time even when they went down i still occasionally got this feeling.

It seems like POTS may explain alot of my really random symptoms so was just wondering if it explained this one too :)

I hope your swallowing problems have subsided blackwolf!

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dear evie,

welcome.

i'm afraid that i still have trouble swallowing, but i am working on the bladder trouble before more follow up on the swallowing. and yes, i often have that "i'm goin' to throw up, but it hasn't happened yet" feeling, even gagging while trying to get meds down. i use milk to help get pills down that are more stubbron than others. i use compazine, 10 mgs, as needed to help with that feeling, most of the the time it works, but every once in awhile, i do get sick, and the only option then, is a trip to the er ;) ivs and iv meds, stop the gagging and vomiting and "break the cycle" and let me rest and recover. then i'm usually "fine" for a 4-8 weeks.

best of luck,

blackwolf

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