Have you seen an ENT specialist?

I have been experiencing the same thing for about 2 weeks now! Not able to swallow hardly anything and now I'm extremely anxious about eating which makes it ten times worse. My doc thinks its effects of my tmj, but I've also been sick the psat two weeks, today my throat kinda hurts. I hope it goes away soon as I am very afraid its something bad. Anyone have any ideas?

Hey there Ingo365, are you still checking this website for feedback? I'm a 31 year old male who developed dysphagia back in June 2008. It started off slowly with having difficulties swallowing food - a sensation of hesitation when it came to actually swallowing. The first time if happened, it happened randomly - I wasn't sure what had happened, but it felt like I was about to choke - but didn't. This feeling started to occur more frequently and at closer intervals (i.e. when it first started - it would be months even a year before it happened again. Now it happens with every meal that I eat). By the end of June 2008 - I had it completely. It took me about 90 minutes to finish a small amount of food. I had to grind it up into a fine paste in my mouth before I could feel "confident" to swallow it.

I must say, after 8 months, I've been eating my meals more quickly now. I guess my body got used to grinding food down to a paste before swallowing that I do it very quickly. I guess human bodies are adaptive? It takes me about 20 minutes to consume, what is half a portion of food to what I used to eat. I have lost about 45 pounds over all. I don't think I will be losing anymore weight as I eat what my body can maintain.

One of the positives is that I eat more sweets and fatty foods to keep up my calorie intack - i.e. regular cheese (as opposed to reduce fat cheese) regular yogurt and so on. I tend to eat more chocolate too. Don't get me wrong with the increased fatty food intake, I'm not shovelling gravy and chicken fat into my body. I still try to be healthy.

I drink lots of fluids these days. Lots of different types of juices - both vegetable and fruits. I drink lots of soy milk too. I probably replaced as much as 750-1000 calories of solid food for liquids.

I've noticed that when you wrote about your symptoms - you mentioned getting sore throat muscles. Out of all the material I've read about dysphagia - I've never had any kind of pain associated with my dysphagia. I just have this feeling or "fear" of not being able to swallow. I don't want to say that I have a fear of choking on food - but I have this fear that my throat muscles aren't going to be able what they're supposed to do.

Anyway, I think I've rambled on long enough. But I really wanted to connect with someone whose going through the same thing. Its changed my life - and impacted it. I used to love food and restaurants. Now I don't go out anymore. I don't eat with my friends or family. It was wierd not eating in the same room as my family this past holiday because I didn't want to them to stare at me when I ate - I didn't want them looking anxious or scared for me.

I hope you're still checking back with this thread and I hope we can talk to each other. I hope SOMEONE reads this and is going through the same thing. I hope to hear back from someone. I know I'm not the only one.

Chad,

I'm having the same exact symptoms as you. I just turned 30. It's trouble initiating the swallow and actually swallowing. About a year and a half ago I had my fist episode with this. It only happened once. No problems for six months or so. Then another episode. I started to chew my food a little better before swallowing. In the last couple weeks it has gotten worse. Every meal is a challenge now. I have to chew my food up very fine just like you. For me it is a complete change of direction as I have always been known for being the first person doen with my food. Have you been to a doctor about this? I'm thinking about scheduling an appointment soon to see if they can find any reason for it. I've done a lot of research on the internet you are the only person I've found with the same symptoms. Let me know how it's going.

-Rob

Rob,

I'm glad that you found my posting on this website. I'm sorry to hear that you have difficulties with swallowing. I have been to a doctor about this. I went to a doctor sometime in mid June of 2008. My swallowing problem started to worsen (and become more frequent) sometime near the end of May. I only waited about 2 weeks before I went to the doctor's. I thought it would go away like before, but it kept getting worse.

I went to the doctor's and she performed a few physical tests that she could. She then referred me to a specialist - an esophageal specialist. There he performed a number of tests before recommending endoscopy. Endoscopy is not a pleasant and comfortable procedure. They shoved a thick tube down my throat that had a camera on it. He took pictures of my throat, stomach and duodenum. This was done to rule out GERD and other related disorders. He also checked for webbing (inside the esophagus), which can cause swallowing difficulties. Once he found nothing wrong with my esophageal tract, he referred me to two other specialist. I've seen one of the two so far. This particular doctor performed a barium swallow procedure. I had to swallow a very thick and heavy fluid that would help take x-ray pictures of my muscle movements when I swallowed. This was difficult to do considering I wasn't able to swallow such thick substances. The other specialist I am supposed to be seeing is an ear, nose, and throat (ENT) specialist. I will keep you updated on my progress.

If you haven't gone to the doctor's yet, you should go as soon as possible, so you can get the help that you need. Also, its good to get on waiting lists to see specialists as soon as possible. On top of going to the doctor's I have also made a trip to the dentist. It was a long shot, but I thought the problem may be linked to my teeth or molars or something. But there wasn't anything there out of the ordinary to be seen. About 6 months after it started, I returned to the dentist to have x-rays taken of my molars. The change in eating habits have started to dull my molars. I switched to softer foods that required less grinding to ease the amount of work that I was placing on them. Perhaps this should be something you could keep in mind.

I'm curious, what goes through your mind when you are eating? What are you feeling mentally and psychologically? What is your eating process like so far? How much do you currently weigh? Do you have any bad habits, such as smoking or excessive drinking? Is your swallowing problem limited to only eating or do you have problems drinking or swallowing thick liquids too? I ask this question, because when this first started, I wasn't able to swallow something as thick as tomato juice, which was kind of scary. But I'm able to do that now with ease. I am able to drink a number of reasonably thick liquids without having any difficulties.

I'm not sure what you're feeling now Rob, or how this is affecting your personal life. It is a big change. If this doesn't clear up, you'll find that it starts to affect other aspects of your life - your social life being one of them. I went through a small bout of depression in August of 2008, I wasn't able to do a lot of the things I used to do - like going out to restaurants with my friends. I also started to felt tied to home whenever it came to eating. Because it was difficult to swallow, I didn't really eat away from home. It also became frustrating because I was no longer able to "grab a quick bite." Eating became a thing that I had to really take time to do and make sure I did it safely.

It's been nearly a year now - 10 months since I've been living with dysphagia. I hope your swallowing problem fixes itself like before. I still hope that my problem will end at some point. In the meantime, I'm here if you need someone to talk to. I can promise you that the human body is resilient and is adaptive; and living with dysphagia isn't all bad. I'm slowly starting to eat in restaurants again, so long as they serve soup! It's a start; but at least I'm trying to get my life back. If there's anything you want to know, just ask. The more questions you ask, and the more we can share with each other, it can only provide additional information for other people out there who are struggling with this unknown problem.

I hope to hear back from you again. Please keep me updated on your progress. Again, don't hesitate to leave a message here if you need to get a hold of me. I thought about exchanging emails, but then, other people will miss out on the information and our own personal experiences. Thanks for taking the time to respond to my message - it's good to hear from someone else.

Chad.

Hi guys. I'm a 24-year-old otherwise very healthy male. I eat all natural/organic foods, exercise regularly, don't smoke cigarettes or drink more than a couple beers here and there, have never suffered from anxiety or depression, etc. However, I've been experiencing this same problem (dysphagia) for nearly 2 years now!

It started in July 2007. One day, when I started to eat, I was horrified to discover that I had somehow "forgotten" how to swallow! I chewed my food, but it just didn't go anywhere. The swallowing reflex didn't kick in. I'd never had to tell myself to swallow before, just like I don't have to tell my heart to beat or tell myself to breath. I had always just put food in my mouth, started chewing, and down it went. But now I was sitting there with a mouthful of half-chewed food and no idea what to do with it! I tried to force myself to swallow it. Big mistake. Food seemed to go everywhere--my sinuses, my ears, my lungs--but not down the normal route to my stomach. Thus began my miseries..

Since then, I've lost more than 30 pounds, dropping from a healthy 185-190 to a sickly 155 (I'm 6'3"). Every meal is a chore, taking at least twice as long as it used to and followed by 30 mins to an hour of me hacking, coughing, snorting, and spitting to try to rid myself of the extremely uncomfortable feeling of having food in my ears, sinuses, throat, and lungs. I have to chew meticulously and swallow deliberately in an awkward and unnatural way. Sometimes it feels like I get it right and the food goes down normally, but many mouthfuls of every meal end up going down wrong or not going anywhere at all because I'm unnable to tell my swallowing muscles how to coordinate properly. And for me, in contrast to what you said, Chad, liquids are often even worse than solid food. I have a hard time even drinking enough water to stay properly hydrated because it feels like I'm swallowing straight into my lungs. And I haven't been able to enjoy a beer in so long!

As you mentioned, Chad, the problem has spread to every area of my life, not just my eating habits. Physically, psychologically, and emotionally, I'm exhausted. There is a surge of fear/dread/anxiety every time I even think about eating, which causes me to eat much less food and much less often than I always had my whole life before this began. This in turn causes me to feel hungry, under-nourished, and weak all the time, and a constant feeling of frustration. I also feel depressed every time I look at myself in the mirror or see a photo of myself. I literally look like I'm dying, like I'm wasting away. I look at pictures of how healthy and built I used to be and want to cry. I see people eating and drinking and feel envy, sadness, and sometimes even anger. It's such a simple, effortless thing for everyone else. No one even thinks about swallowing, they just do it, like breathing. I obviously am not actually mad at people for being able to eat and drink normally, I just feel overwhelmed sometimes. Sometimes I feel like I'm on the brink of losing it. I never used to feel like this.

Going out to dinner, which was always a favorite activity of my girlfriend and I, is no longer fun because I know people can tell I'm struggling while I eat, and I know I'm going to constantly have to run to the bathroom and snort and hack and spit every time a bite goes down wrong, which makes me feel disgusting and humiliated. And at home, my poor girlfriend has to constantly deal with me making these horrible noises and hocking up food and phlegm during and after every meal.

I'm really starting to feel like I can't take this anymore. I've called and written e-mails to several doctors in my area, but no one seems interested in helping me since I don't have health insurance. There is even an "Institute for Voice and Swallowing" run by the medical university where I live, but they wouldn't even talk to me about my problem without a referal from a doctor, which I can't get since I don't have insurance. I even wrote a long e-mail to the Holistic Center here where they practice hypnotherapy, asking if they would be interested in helping me pro bono or even using me as an experiment, but I received no reply.

I have a strong feeling that there is some sort of psychological root to my problem, almost like if I could just stop thinking about it, it would go away. But I can't not think about it! I have so many negative feelings and memories associated with eating now, I can't see or even think about food without also thinking about my problem. And if it is a phsychosomatic issue, where did it come from in the first place? It took me completely by surprise. I never even dreamed I would ever "forget" how to swallow...

I really don't know what to do. If anyone can, PLEASE HELP!

Joshua

I was glad to see I was not the only one with problems swallowing but sad that others have to go through the same suffering that I do. Mine started many years ago when one day I simply couldn't swallow my food. I am not quite sure how long it lasted,maybe a two weeks, maybe a month, it was over 20 years ago so hard to remember. Anyways, one day I simply went to my Mom's and tried to eat some of her meatloaf and wa la! I was able to eat fine again. Then about 10 years later I started feeling like I had a lump in my throat and was having difficulty swallowing (but not as bad in the past). Went to the doctor and specialists had some tests done but nothing conclusive was ever found out. It was always a challenge off and on but nothing like it is now. I too have grown to hate eating and find myself going through tons of emotions because of the almost complete inability to get food down. It is funny because you really take for granted the ability of simply being able to eat,now that it is such turmoil and such a lengthy procedure to simply eat one piece of toast, I wish I could go back and eat till I was sick, lol. I plan to call the doctor soon but I know they are going to want to put a camera down my throat and I am dreading that. I would love to talk more to others who have this problem, so please if you would like to swap email addresses, I would love to. Thanks for listening.

Lilacs,

Thank you for posting your message on the message board. Have you had an endoscopy procedure done before? You complained of a sensation of having a lump in the back of your throat and that you subsequently went to the doctors to which they have found nothing. Was their inconclusive findings based on an endoscopy procedure? Endoscopy is the procedure where they place a camera down your throat - it's not a pleasant feeling; but it is relatively painless. It's just uncomfortable. If you haven't had the procedure done, you should follow your doctor's recommendation of having it done. It may provide further information about the sensation of having a lump in the back of your throat. By the way, does this sensation still occur? Or are you just dealing with difficulties in swallowing. Might I also suggest that you read the other message board that deals specifically with sensations of lumps, or issues of pain or soreness of the throat? You can find the link at the top of this page. I think the other message board may put you in touch with others with your same symptoms and conditions rather than this one, where there are no symptoms other than simply being unable to swallow.

Chad.

Joshua,

It’s good to hear from you; although it’s not considering the circumstances that you are writing under. I’m sorry to hear that you’re suffering from you inability to swallow. It does sadden me to know that you were only 22 when this first started. You’re the first case that I’ve read where someone has completely forgotten to swallow. That must be incredibly frustrating for you. I’m surprised to read that you’ve been living with this condition for nearly 2 years! That’s incredible. Like I’ve mentioned before, it has been nearly a year for me.

I wish there was something I could say that would bring your mind at ease, but I’m not suffering from the same condition as you are. I am however, experiencing the same psychological effects of dysphasia. In that sense, I think we can support each other (as well as others) in dealing with the side effects of not being able (or having difficulties in) swallowing.

I’m curious, how do you manage to nourish yourself if you can’t swallow? How much food is wasted when you try to eat and how much of it actually gets into your stomach? Can you provide a percentage or ratio? How supportive has your girlfriend and family been during all of this?

Like you, I sometimes have to swallow in an unusual position. Sometimes I find it easier if I lean to the side (either to my left or right) to swallow. When I lean, I lean all the way over until I’m resting on my elbow. I tend to eat on the couch while watching TV cause it takes me nearly 20-30 minutes to eat a relatively small meal. I’m not sure why this is easier for me; but it seems to help. Do you always eat in an upright position? When this first started, I used to eat kind of lying on my stomach. I would lean over the counter and rest my chest on it to swallow; again, for whatever reason, this seemed to help the swallowing process - although, I no longer have to do this.

I understand your issues of anger when it comes to anger. Every now and then I go through these phases where I get so angry that I can’t eat normally anymore. I get angry because I just can’t swallow normally. Like you, I sometimes get annoyed at people when they eat; not because I’m annoyed with them; but because they’re doing something that I can no longer do. You’re right; swallowing is something EVERYONE takes for granted. It’s such a simple process. After a month or two when this first started, I realized just how much we are unconscious about swallowing. It’s amazing how many times a day we do it.

I understand the helpless feeling you get when you’re watching yourself slowly deteriorating. I’ve been there, I’ve seen myself shrink. My friends watched me shrink. I not longer had the energy to do everything I used to do. I started to be left out. My clothes don’t fit, and I can see some of my bones poking through my skin. Like, in my shoulders, the tops of them are really pointy now; I can actually feel my bones. I’ve started to shy away from getting my picture taken. And I try not to look at old pictures anymore. I find that it doesn’t really do me any good looking back. It’s definitely weird looking at me in a photo where I have round cheeks and meat on my bones. Its strange to see a “fatter” version of me in older pictures.

I try not to think about the past too much. I try to think about how I can start living my life under these new circumstances. How can I gain control of them and how can I bring myself back to a level where I can exist as I once did. I’m taking those steps now. I wish you were in the same position as I am; and it’s unfortunate that your problem seems to run deeper. I am however, more than willing to try and help you deal with it. I’m sure, together, we can figure out something that can ease the discomfort.

It must be completely frustrating not being able to get medical attention without any insurance. Are there any walk-in clinics where you are? Are there any charitable hospitals or community hospitals around that you can go to, to get a referral? What about a neighboring state? I can’t believe there is no one there (in the medical profession) that is willing to help you out. There’s always Canada – LOL, although you need to be a citizen to get the free health care. I will take some time over the next few weeks and see if I can be resourceful and find something on line that might be of assistance to you. Hopefully I can and we can get you some help.

It’s hard to say what the root cause of dysphasia is. I think my swallowing problem comes from a psychological issue. I’m more inclined to say that your problem may be more mechanical than psychological. I’m wondering if your throat is blocked by webbing; which may cause your food to go everywhere else other than down your throat. The other possibility is that esophagus has shrunk (or is shrinking). But only a doctor could determine that. The first series of tests determined whether my problem was mechanical; to see if everything was working properly. The next step is checking the psychological side. The human body is funny when it comes to reacting to a problem it has. It can be counter-productive in trying to protect or “self-heal” itself. For example, if you have GERD you’re body will prevent you from putting anything down your throat without you knowing about it. One day, you just can’t swallow (or have difficulties swallowing).

Joshua, I wish I had an answer to give you to help you figure out what to do next. But I don’t. But I know that I can be here in a supportive way. In sense, to me, you’re normal, in that we have something in common; much like the other guy – Rob (see above) – we all have difficulties swallowing. That may sound like nothing from where you are; since you may be feeling isolated and alone. But don’t hesitate to send me a message; I can talk just about anything with you if you wanted to. Like I said before, I’m sure we can figure something out together to try and better understand you’re condition. And who knows, because you took the time to post something here, another person in your exact condition may read your posting and either provide you with additional information that you may be missing, or they get information from you – tips on how to live with your condition.

I know that’s not much of a consolation, but its something. It does provide us with a purpose. I hope you keep in touch and I hope you keep me updated on your condition. Likewise, I’ll stay in touch and provide you with any information that I find. Thanks for reaching out and contacting me. I wish you all the best.

Chad.

Chad/Joshua,

I'm more inclined to think my problem is psychological more than mechanical, but I could be wrong. It seems the more I think about it and stress, the worse it gets. Maybe it's a combination of both. I also think if I don't drink enough water it may make it worse as well. I don't drink heavily and only occasionally used tobacco (not anymore). Last week was actually much better for me but the past couple days have been a little challenging again. Even on a good week, I'm still eating much slower than I did before this problem started. I have a dentist appointment Wednesday and I'm going to see if they can refer me to someone. I've realized recently that my problem seems to be more like Joshua's. It's almost like I've forgotte how to swallow. I'll chew my food, move it to the back of my mouth. I can actually feel it start to go down my throat, but I just can't swallow. I then have to cough it back up into my mouth. For me, the problem is only with solids. I have only lost a couple pounds since this started chronically about a month ago. It's annoying but I'm trying to remain optimistic that I can get past it. I'll try to check back here more regularly so we can keep up with eachothers progress. I'll report back after my dentist appointment.

-Rob

Chad,

The feeling of having the lump was 10 years ago, not this time, even though on quite a few occasions now I can feel the food stuck in my throat. I believe this is the correct message board for me since I don't have a problem with a lump in my throat but the inability to swallow my food. I appreciate your help in trying to make sure I had the right message board.

I went to the doctor today and I will be having a cookie swallow test done later in the week (had one many years ago). She mentioned some possibilities that the problem could be and I am hoping it will be an easy one to treat. Or it may end up like in the past, no diagnosis just live with it in hopes it goes away.

No Chad, I have never had an endoscopy. A specialist I was seeing last year for an unrelated issue had suggested getting one but he then never went further with it. I had other tesing done instead more specific to where my problem was at the time. I am afraid of it but will do it if needed. I just know that I can't stand living like this anymore and just want help. It is comforting to know there are others like me and that maybe somehow we can help each other.

I had the cookie swallow test yesterday and was told that I have right side esophagus paralysis and was having food residuals remaining in my pyriform and cricopaharyngeus (which I have still yet to find out what that is). Basically the muscles on the right side of my esophagus do not work. I now have to see a specialist to find out why and to also meet with a dietician to improve my nurtitional content since swallowing is so difficult. On the screen I could see the liquid/food travel only on the left side of my esophagus, was quite weird. We will now have to see if there is a tumor blocking the flow or if it is muscular/nerve related. Today has been a very bad day trying to swallow, even my usual "easy" foods are giving me problems. Has anyone ever received a diagnosis for their problem?

Same problems,, at night i would wake up out of my sleep gasping for air, i quickly adjusted my breathing and went back to sleep. (3 months later) now i have trouble swallowing and breathing and yes i had headaches right eye. The doctor thinks it's GERD but I think chronic sinus infection. I will see the doctor next week to see what the out come of my blood work results and he is to schedule me for a Barium Swallow test and a xray of my neck and chest area...not sure but anxious to do test. It has become uncomfortable living like this that at times i think that i will stop breathing or choke my self to death of course not on purpose. I even called the life insurance people just in case

after suffering the same as all of you here.. I finally discovered I have one leg longer than other..anything that throws your spine ut of alignment can result in a nerve compression ..I found out when I had severe left hip pain and knee pain... hope this puts someone on the right track! please have your neck vertebrae x-rayed!! one leg loner causes TMJ and all of this!!
itscalled LLI (leg length inequality) very common! or lld leg length discrepancy...start there!

I also have difficulty in swallowing but mine is from Sjorgens syndrome..This is another autoimmune disease where you become extremely dry-mouth,eyes,nose, everywhere..I have to use lubrication for everything..Every night I have to use eye ointment or my eyelids will stick to my eyeball and cause corneal abrasions..I have had several of these abrasions already and must be careful..

Swallowing is very difficult with anything dry,crumbly or stringy such as beef..I have to drink hot or warm liguids as I eat to keep mouth and throat moist..To drink anything cold restricts the throat and makes swallowing worse..Chances are for me things will still get stuck half way down and come back up..Gross I know but true..

No matter what see the ENT and follow whatever suggestions they give..Best of luck..

I didn't realize how long disphagia lasts. Does it ever go away? I've been having problems sort of like all of the ones you guys have. Mine are a little more bad though. I'm only 17 and never thought I'd have these types of problems. Sometimes its so hard to swallow I can't even swallow my own spit. I've been to the hospital 3 times the past few weeks. One doctor thinks I have acid reflux and another thought I had dysphagia. I'm currently having to wait a few painful days to see an ENT doctor to see if he'll know anything to do besides put me on anti-inflammatory pills. Does anyone have any tips? I've lost about 5 pounds from not eating. I can only handle at least 5 bites of ice cream and a few sips of water a day. Some of my family thought it'd be a good idea to eat some food if I chew it up really good. Two small bits into some meat and my throat started getting really bad again. That same night I had to go to the emergency room. I've already have a barium swallow done and a cat scan. The doctors said they looked fine.

Now I'm coughing a bit because it feels like I need to clear my throat. Sometimes I feel a lump in my throat that feels like it wont go down. I just don't know what to do. It's so hard to wait to see an ENT doctor. Especially if you're eating as much as I am now.

A few weeks ago I actually choked on my own spit. I knew how to swallow it just went down the wrong way. My first reaction was to cough to clear my throat. When I did that my I felt a bad pain in my throat. A few minutes later my throat started having a weird pain in it that made me dry heave so much I couldn't breathe. I went to the emergency room and got it sorted out. I was actually eating a bit during that too. Just not eating too much because I was afraid of choking again. Days later I started having the problems I have now. Hopefully someone on here can help?

Well honey, all I can say is the dryness for me is severe enough that i have lost all my teeth and my tongue will stick to the rough of my mouth..I throw up whenever I eat anything dry because it will get stuck..Water and jello are easy to do and eggs aren't bad..Oatmeal is easy as is most warm to hot soups..To drink anything cold restricts the throat causing throat to spasm closed..

muff e,

I've actually experienced waking up gasping for air several times over the last year before the swallowing problem become chronic. I started to think maybe obstructive sleep apnea. I'll be interested to hear what you find out.

Suzuki,

I also have TMJ and lower back problems. Thanks for the ideas, that may put me on the right track. The swallowing problem seems to come and go for me so maybe it's related to my back problems which also come and go. I stopped working out about a year and a half ago and that's when the back problems started up.

My visit to the dentist went fine. He didn't seem at all concerned. He looked dowm my throat the best he could and didn't see anything out of the ordinary. He told me if it gets worse to go see my PCP.

I've had similar issues, for about 7 years now. Its off and on, more difficult in public places, or in the car - where it seems that my throat wants to tighten up... So my first thought is some kind of anxiety deal. However, when researching some literature I've a few other differentials... I'm curious, has anyone here been screened for myasthenia gravis? Apparently it has a bimodal distribution (females present in their 20s, and the males present in their 60s) and it has varying degrees of severity and progression... it usually starts with an eye droop or difficulty swallowing. Let me know if anyone has considered this. Thank you.