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Old 04-08-2013, 03:16 PM   #1
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rockotaco HB User
Anyone know where one can get help eating?

I am hoping there is someone out there who understands this. I have had problems swallowing for about a year now due to what seems to be an inflammed esophagus with spasms (of the upper esophageal sphincter). The symptoms of this have had me eating (and drinking) in total uncertainty, having to guess and calculate based on what I am feeling in my throat if the food or drink is going to make it down my throat, and what it is going to happen if it dosen't (having to ask, can I cough it out? Is it too much to cough out? Can the consistency be coughed out? Is it gonna hurt or do damage going down? And so many other questions). It makes eating a nightmare I dread every day. Does anyone know of medical help that understands the mental and emotional torment a swallowing problem puts you through? It would be so wonderful to be able to talk to someone knowledgeable about these concerns in a safe environment where I may be able to eat in peace for once. I have tried this through a speech pathologist, and some questions were answered, however it was frustrating for a number of reasons, largely because I was told they would only work with me if I managed my anxiety with medication or therapy (this was puzzling because no medical tests have indicated anxiety, if anything have ruled it out, and I was always very composed, at least I thought. This is one of many infuriating incidents of what I think is a massive conspiracy of doctors to get everyone on antidepressants for some reason...I really don't know what else to think) and I would only be given help if I took the medication they prescribed. I do not believe in taking medication for this situation, as the body will heal itself if the root problem is attacked and the body is given the proper healing environment. I am in the healing process already, so I want it to take its course. I think this is criminal to be denied help for this reason. Anyway, I was also largely told that I could eat anything I wanted because a barium swallow test showed that I was capable of swallowing food. This was not comforting, as I feel a great deal of abnormality (and that is putting it lightly!) when swallowing, food sticks in my throat, and I am not imagining it as I have had to cough it out from time to time. Because I did not choke during the five swallows of the barium test, I was told I would "not choke more than anyone else". Not convincing. Therefore, it was very frustrating to ask a question about a food's safety in swallowing (for instance, what happens when this doesn't go down my throat?) and have the answer be "the barium swallow test shows your swallowing function is normal, so that won't happen". Even though, as I would try to explain, it HAS happened, but maybe just with a small amount of pureed food or liquid. Why should I not be concerned about it happening with something bigger and more solid? Anyway, with all that said, I was wondering if anyone out there knows of any compassionate medical help that understands the mental and emotional torment associated with a swallowing problem and would be able to help me be able to eat again in peace by entertaining my questions, and working with me in an environment where I could feel safe eating? By the way, I am in Florida, but at this point, willing to listen to any suggestions about anything anywhere. I am trying another speech pathologist, praying that it is a different story than before, but please share anything you out there might know. Thank you so much!

Last edited by rockotaco; 04-09-2013 at 02:18 PM.

 
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Old 04-11-2013, 04:37 PM   #2
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bibliophilic HB User
Re: Anyone know where one can get help eating?

So sorry you're going through this hardship! I completely understand your mental anguish. I personally feel let down by all of the medical practitioners whose advice I have sought out. Although my problem was not caused by anxiety (I coughed really hard one night and since then I haven't been able to swallow anything with a rougher texture than mashed potatoes), doctors have insisted that it is the problem. Also, acid reflux.

I humored them and took the acid meds for awhile with no relief whatsoever. I also took benzos and it made me care less but didn't help with the swallowing. But I completely relate when you note your frustration with some kind of conspiracy to get us on antidepressants! My main doctor said that it was all anxiety, even though I was calm and cool and rational when I saw him (and always, really). He started talking about an invasive test during one appointment and I noted that it seemed scary. He JUMPED on that and immediately used that as "proof" that I'm an overly anxious person. Yeah..

I do have anxiety about this, now, though! And yes, I also question the consistency of foods before I eat them. Everything sticks, but is this something that will be extra uncomfortable? Will I be able to drink lots of water to get it down? Etc etc.

Unfortunately, I can't offer any advice in the way of doctors to go to. I personally have gone to doctors and specialists in many fields and am still left with nothing. I do a lot of deep breathing exercises, which help me not lose my mind. I think it's hard for anyone who hasn't gone through this to understand the toll that it takes on us mentally. Not only are we unable to get in the proper nutrients to fuel our minds, but we are forced to constantly assess and re-assess our condition EVERY time we want to eat, drink, or (in my case) even breathe or swallow saliva.

I hope that the other speech pathologist that you are seeing gives you more help than what you have previously received! How did your problems start? I'd love to hear how things go!

 
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Old 04-26-2013, 05:13 PM   #3
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Re: Anyone know where one can get help eating?

I have seen ppl with esophageal spasm, or spasm of the whole body. It does not cause choking very often, but it does cause choking AFTER swallowing. and most of the ppl with esophageal spasm have some kind of esophageal problems like reflux, slow movement of the esophageal phase, stricture etc.

Yes, you are right. The MBS won't tell you a lot if you only sit there for a few minutes and eat a few bites of food. Did they scan down your esophagus at the end of the MBS? Was the food going down to your stomach all right? They usually have a good idea of your esophageal function if they scan down to your stomach after the food trials.

Your symptoms sound a lot like GERD to me.
Let's put it this way: what was causing the inflammation of your esophagus? Reflux? If so, what was causing the reflux? Acided food items? Eating too fast? Too much pressure from the abdomin? If you really don't want to take medication, try the behavioral approaches frist (search reflux precautions online), or try some OTC medication to see if it helps.

Hope you are feeling better!

 
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Old 05-27-2013, 09:06 AM   #4
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Join Date: May 2013
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Re: Anyone know where one can get help eating?

Hey there.

So a SLP is the way to go, for sure. They go to school for a really long time to learn how to help. My advise is to find a different one.

The barium swallow test just means that when you do swallow it is going to the right places, rather than into your lungs. So what you can take from that is at least you aren't going to aspirate. Doesn't mean its still not hard to swallow, just that you are swallowing appropriately.

Find a new speech therapist and see what they have to say.

Are they trying to indicate that anxiety is causing your throat problems?
I remember a long time ago I would inhale my saliva, choking on it and that would throw me into a panic attack. quite scary.....

Best of luck to you!

 
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