Living With Pseudodysphagia (fear of choking)

[Anneziety]

Hello everyone,

I've been a member of these forums for a while but these is my first post.

I've had pseudodysphagia/phagophobia (not exactly sure of the right term!) - fear of choking since I was 12 when a chip got stuck in my throat and for years I thought I was the only one in the world that suffered from this until the internet became a 'thing' and I discovered many other people like me!

I'm now 33 so I've somehow been living with this for over 20 years. It's always there but lately over the last few months it's become really bad and I'm not coping too well. I've tried almost everything to rid myself of the problem and am currently on the waiting list for CBT again, though I have tried this before.

I just wondered how others with this debilitating problem cope with it in daily life? For example, what do you do about eating lunch at work and eating out with friends/family? Do you tell people about it or hide it? Does it affect your decisions such as where to apply for jobs and whether to go on nights out, day trips etc?

I've never met anyone else that has a fear of choking and it makes me feel extremely abnormal to everyone else - most people can't really imagine what it's like as they swallow food without thinking about it which is how it should be!

In the past, I have tried to accept that this is the way I am and I just have to learn to live with it, but lately the thought that I might always be this way scares me. I've read so many posts from people that say they've had it as long or longer than me. Has anyone actually overcome this?

[Anneziety]

Oh dear, maybe I posted this in the wrong section, sorry!
I didn't know where it should go as it falls under pretty much all the categories.

I just don't know what to do, I've been feeling awful lately. This severely affects my quality of life and I dont know how to handle it anymore. I can't face having to eat every day and I've been feeling like I'd rather not be alive which is terrible as I've never felt this bad about it before. I don't get it cos the irony is I'm scared of choking to death!

My husband is very supportive but my problems have really been putting a strain on our relationship and I think there's only so much of my negativity he can take. I don't know if he realises just how bad I'm feeling. :(

[Pepperpot]

Hello and welcome. I'm sorry you haven't had a reply to your post :( . I don't really have any advice for you but I didn't just want to read and leave. I don't have a fear of choking as such but more like a feeling I can't breathe, then panic sets in that my airways are gonna close. So the end result is the same I suppose :/

[HealthyLiving]

Hi, I've been struggling with this same problem too for over 20 years and just discovered there's a name for it, Psuedodyshagia. So when I googled it to find out more, your thread here showed up and I decided to sign up to reply, so this is my first post. :)

Anyhow I just responded to a thread on City-data (see mental health forum 'Afraid of swallowing and choking') Here's what I just responded there. Hope this helps you!

'Wow! This sounds like me. When I was 24 I developed this same problem and it's all due to anxiety + depression. In the beginning I went to doctors too and had tests done and when 1 finally did suggest it was in my head I left the office feeling very upset but decided to try a sleep aid to see if it was in fact my nerves and it was. But the feelings of choking while eating was so great I'd have 'choking attacks' (think panic attacks with fear of choking instead of heart attack) and even went to the ER a couple times thinking something was stuck in my throat when it wasn't. So I also lost a lot of weight and the fear around eating caused such great distress + even nightmares! In my case, the anxiety + depression just got worse along with the 'choking attacks' and I went to a mashed potato and shake diet and eventually more or less tried to live with the problems. In fact after having 100's of these 'choking attacks' I went on that soft food + liquid diet for 5 years while being treated for anxiety + depression.

Then a miracle of sorts happened when my doctor switched my anti-depressant to Paxil and within a month or two I started eating again! This was a complete surprise being the change to Paxil was for depression/anxiety only and we never even discussed the choking issues (in regard to med change) nor did I have any reason to think it was going to help the choking, but it did! And big time!! I started eating hamburgers + pizza etc for first time in 5 years and looking back it was the nervous problems causing the whole thing, which I already knew but was still blown away by how taking some Paxil could help so much with this awful, insidious problem. I was also on a low amount of Klonipin (anti-anxiety med) which I'd take when a choking attack began for immediate help and it works good but it was the Paxil that got me back to eating normal and helped the most overall. You may want to consider that you have these other underlying issues causing the feelings of choking because with me it certainty is the case. Nervousness runs in my family and being neurotic does lend itself to these type of problems.

So, years went by and the choking attacks practically became a non-issue up until I decided to go off the Paxil. But now, after 3 years of being on no meds, the problem has returned to a degree. So my anxiety is greater now and without a doubt my choking/eating issues are due to this.

Fortunately, having gone through all this and being wiser I know how to handle the situation much better. Even though I did have to get the blender back out and it's a large part of my routine, I'm actually consuming more healthy foods than I've ever been and blending milk with bananas, peaches, quick oats, and protein powder (sometimes slimfast powder too) while taking a multi-vitamin. Later in the day I've been blending sweet potatoes with carrots (all canned) with more protein powder (and was surprised to learn how nutritious sweet potatos are). Also been trying to get v8 juice, orange, apple juices etc and eat peanut butter out of the jar with apple sauce. I do eat other softer foods (when the anxiety is lower) and mix tuna or boiled eggs in a food processor and eat on soft breads. Most everything I'm blending tastes good too and I still get plenty of softer cakes/junk food just for fun

In fact, sort of a funny thing happened because although eating like this definitely does cause me distress for the obvious reasons of I'd rather not have these issues, I'm actually quite healthier now and appreciate the times when I do eat normal foods. I exercise too so even though earlier on when I was younger with this problem and lost a lot of weight because of it, I now know how to handle the situation and nutritionally + physically doing better now more than ever. Somehow this very negative experience has also brought about some positives too but overcoming challenges like these almost always seem impossible especially when anxiety + depression are involved.

You may not even be aware of having these anxiety/depression problems because they're often that low grade but most definitely do cause these other problems like you're having and it was that way with me. You're not alone and you will get better so follow up with the doctor + therapist.

Good luck!

[mimopanic]

I just found this thread even though I see it's a few years old. I've had this problem for the past 12 years, but it got a lot lot worse in the past few months due to some external stressors that I had no control over. I never looked this problem up as the fear I've been having was too strong to be even able to face it and try to solve it, and frankly I'm just to embarrassed to even admit I have it. But it's too debilitating at the moment, so I think I do need to do something to try and fix it because it's affecting my work and private life to a great degree. I have nothing much else to add as I'm only starting to explore how to approach this issue.

[Cagedglobe]

I know this thread is old but, I feel with the experiences that I have gone through in my life it is imperative that I share with you how you can overcome your fear of Pseudodysphagia.

First off I am going to explain to you how I developed my fear. It started when I was about 16 years old I had friends over at my house and my Mom just finished making dinner. Even though I was not hungry at the time she said "If you do not eat the food I made all your friends will have to leave". I was having fun with them and didn't want them to go so i started to eat with a rush. The very 1st bite that I took of chicken I did not chew enough and I started choking. I was sitting their for about 20 seconds while everybody was just watching me slowly lose consciousness. I screamed as loud as I could and the chicken finally flew out. Out of breath I asked everybody angrily why none of them helped me and they were all just in shock. I did not know but my throat at the time was still inflamed and it felt like chicken was still stuck there so i called the fire department to come help me. When they came they put a tube down my throat and checked my oxygen levels and said everything was normal, But i still had the feeling there. It felt like a lump or "ball" in my throat. I was to afraid to eat or drink anything the rest of the night in fear that if I pushed this lump down I would start choking again. Eventually after many hours the feeling went down on its own.

I lived with this condition for 2 years before deciding to do something about it. I lived in fear, anxiety, and shame. No one understood whats its like to have a fear of choking. I even became suicidal because I had to smoothie everything I ate otherwise the flashbacks would come back. I lost about 50 pounds because I would avoid eating foods and I would want to sleep all the time because I would have anxiety the immediate second I woke up.

I contacted a psychologist who would listen to me and it felt like she was the only person who didn't judge me on something so simple on just eating food she understood what it was like to have this irrational fear. I went to her for 11 months. During this time I would still have the fear but it would slowly reduce until I had full control over the fear. My therapy mostly consisted of cognitive therapy, but it felt like she was just really having a conversation with me and explaining to me how I can use this fear to my advantage and understand it. Use the fear as a way to grow myself. Now she was also very religious and she believes in fate and thinks I was destined to have this fear in order for some greater purpose in the future.

I am 21 years old today and I have full control of my fear. My advice to any of you with a fear developed the same way that I have (because all our fears have a different stem depending of it's origin) is that you don't run from the fear and face it. Experiment with the fear and use it as a way to build yourself. All our emotions and fears come from our minds. You have the absolute power to let go of your fear. The only thing holding you back is you. Stop telling yourself you can't let go, or it's to hard, or people don't understand you. I know what it's like I have been there. The truth is no one has your condition the same way you do. something that i tried was the whenever that lump feeling came back whenever i ate anything i would literally drown myself in drinking water. I had an immense fear while doing it but it would completely clear my throat. I also made the decision that I would rather die than live in fear. It's amazing how quickly you can let go of something that controls you once you change your perspective and face it.

I shared with you my story and hopefully I can inspire you to let go of your fears or whatever is controlling your life. This can be used for any situation not just Pseudodysphagia. If you have any questions or would like to chat about something that you have been having a hard time with do not hesitate to contact me. I wish you all the best!

[Toby2000]

I'd never heard of this fear before but I imagine that it's extremely difficult to live with.

Hope it improves for you :)

[geri.pjetri]

Hi , I develop such fear six month ago in july . This was not because due to an accident but because due to a single news that my father told in a lunch table about someone who was living alone and found dead because of a choking accident . Before in september of 2016 my father had a choking accident while eating because he tried to eat and talk at the same time . I was 18 at the time and I literally saved his life because I was quick and in good shape to have the strength to put my arms around him and push hard in his stomach . But i didn t had any problem the coming days . The proble came ti the fact of the news later on . I started thinking and thinking and thinking even though I knew it was bad . I finished my exams in july and at the time i started looking food time as a battle which was really bothering me . I became happy after finishing the meal wich i Knew i was making a mistake . The summer started and I was dreaming of finding a way to be succesfull in my life and to read some books for success because I was disiplined before and i Knew i Had something in me . But this fear started growing because I wasn t feeling comfortable during the day . The worst thing that i did and maybe the best was reading about this thing teading and reading stuff such symptoms and i really become a scared to death . From a 82 kg 20 years body ing good physical shape i lost weight and went on 72 kg . My life collapsed . Before I was a good student getting high grades and achieving my goals in every department of my life because i dont mind the hard work . But this fear didn ‘t let me do the hard work . But during the summer i started reading “think and grow rich “ Napoleon Hill . I read about henry ford, tomas edison and people who had success in their lives . I really dive into such things but i couldn’t do my work . My system of beliefs collapsed during the time i didn t know in what to believe , although deep inside me I believed in God as I always had . The best thing that i ever did was going into a service camp to serve the disabled people a catholic sister invited me and i accepted but i didn t tell anyone about my fears only my mother . It was really difficult to help others while you know you are in a very severe problem . I watched other people enjoyning their food while I was just eating something just to not avoid eating . It seems like i was going to die or sth . I maneged to serve for a week to the disabled people and something hit me : i was still alive . I made a decision not to live like this . Believe me its just a problem in our philosofy of , life , death , workd , God . I decided to fight and i had goals ti regain my weight . Believe me it was realky difficult I started eating without knowing how ti taste just to complete my duty and in two weeks i went to 80 kg from 72 . Because I understood that you are alone in this , you are the solution and the problem . It didn t stop here i had another goal to keep my weight and not ti avoid any kind of food because that would mean defeat .I asked my self the question if not for the fear would you it yes yes yes . As someone above said that this is our grates gift given to us . My other goal was to come back and start living alone as i used to because after the fear i just could eat alone .I come back to school and I promised myself that i would do every actuvity that is to be done as if fear doesnt exist . I started reading books “as a man thinketh” and other books how to become rich and succesful. In the Bible and in every books that teaches success is an essential idea “ as you think so you become “ watch your thoughts people its just philosophy in our head . I still have the fear but I am in control I eat regularly . I listened to Jim Rohn , Les Brown , Tonny Robins and other motivational speakers . I wake up at 5 :00 running have my breakfast and do 400 push ups a day . Read quotes every day read to motivate yourseld and change the focus . My goal now is not to kive the fear or ti eat but ti completely recover from it . I have meals where i enjoy i have other where some fear is there but who cares . I too made a decision that i would rather die that let fear control me and my lifestyle . Please belive , I am still working but the key is to belive in whatever you want in yourself yes in God yes in universe yes . Set your goals and go for it dont aim low set goals as if you don t have this fear and just try to do motivate yourself . I truly believe that this is our gratest gift given to us . We have a mind and we need to think because everything start with thiught. We are not that weak that to be cintroled just because of one event in our lifes . Hope i have helped . If anyone want to contact me in facebook Gerild Pjetri i would kindly help you with any advice . And I believe that no medication can cure a negative mind , only postive mind can . I trully believe in our mental powers . And I have promised myself that no medication would get me out of this only my mind will . Only by thinking we cam get out of this hell . Believe and grow !

[daisya]

Hi,
I'm currently 18 and had the condition when I was about 13/14 years old for around a year. I can't pinpoint the exact onset of the issue, however I believe it originated from a TV advert on the danger of choking paired with feelings of complete hopelessness and a loss of control. The pseudodysphagia was a way that my feelings manifested themselves in a physiological way. I remember feeling like I was completely alone and as if nobody in the word was experiencing the same thing (so it is comforting to know others have felt the same way). Something often misunderstood about the condition, is that it is not about controlling weight at all, but an all consuming fear that if you do consume food that you are going to die. It is almost a physical sensation of the oesophagus constricting when swallowing, feeling as though it is impossible to breathe. The weight loss is just a side effect, and one of the most detrimental ones of all, causing me to constantly feel tired and meaning that I eventually was able to live off just a yogurt a day.
The earliest memory I have of knowing there was something wrong, was whilst watching an episode of Holby City whilst eating dinner where they were in a burning building and struggling to breathe. Whilst watching i underwent a similar reaction to what was happening to the characters on screen, however, feeling as though the dinner I was eating was unable to move into my stomach. This caused me to have to stand outside and catch my breath, trying to regulate my breathing and calm down. Over time, the problem got progressively worse, and eventually my mum noticed my weight loss and tried to help me deal with the issue. However, at the time I don't believe she fully understood the complexity of the problem and it wasn't as simple as 'chew it and then swallow it', because psychologically, no matter how many times I chewed it there was still a chance I would choke.
I had internalised the true extent of the problem, and realised that I couldn't go on living like I was so made plans every week to see the school nurse, and talk to her about what was happening. Yet, I never did, as I either felt too embarrassed or like it wasn't a big enough deal (retrospectively it was).
After about 4 months, my mum took me to see the doctor, however being so young he trivialised the issue and suggested that 'the adverts on tv are made to make you scared'. Then he provided me with leaflets on the Heimlich Manouver, and how that can work in case of choking.
Obviously this doctors visit was no help and so the issues I experienced progressively increased in severity. I can remember trying desperately to eat my dinner, but making noises, coughing and spluttering whilst doing so, to a point where my dad had had enough, and would shout at me to just get a grip. He would tell me it was embarrassing and that I made everyone feel uncomfortable.
Therefore I took the stance of not eating, using aversion techniques by distracting everyone around me, making out that I was eating by holding up food to my mouth but then just placing it back on the plate again. I would also mix my food around my plate pushing it to one side.
Eventually, my family became aware of my techniques, so I would ask to eat dinner alone in my room, so I could take my time and make noises if I needed to. However, I would just throw the food down the toilet, take my plate downstairs with some left on it, and return back upstairs to flush the chain. This was something that I did for many months, until I eventually had enough.
My friends at school had noticed that I was losing weight, and would always tell me how skinny I looked, yet to myself I looked exactly the same. Looking back at photos I can see their point. I used to go to bed and pray every night to just be able to eat normally, like everyone else, and I found some 'worry dolls', my nan had got me years before and religiously use them before bed to try and tell them how challenging every day was.
After a while, I decided to try and ween myself back on food, slowly giving myself, first jacket potato and then scrambled egg, to try and eventually get myself back to solid foods. This was a good move, as although I didn't realise it at the time, I was self administering Systematic Desensitisation (a type of behavioural therapy). I still do however, have trouble with certain foods, such as some chewy sweets and things like chewy caramel, as I still experience the same feeling of it being stuck in my windpipe.
I also began to talk to people about it more. Not my friends, but more my mum, my grandparents and my auntie, so they could see that there was something more going on and I couldn't cope on my own. I informed them on the Heimlich Manouver and also other preventive techniques, that allowed me to feel much more comfortable when faced with eating solid food. Over time I began to forget about eating and placed more focus on watching TV or doing homework, so I wasn't so encapsulated in the 'bite, chew 35 time and then gulp down' cycle.
This brings me to the present day, where I am I now able to eat a full meal with ease, experiencing panic rarely.
However, recently I have been doing my exams, and the stess seems to be causing me to be sick every morning almost ritualitically. This happened to me earlier in the year also, due to experiencing large volumes of pressure. It worries me, as I believe that the onset of my pseudodysphagia was mostly due to mental health, and is something that has never been dealt with, due to not treating the disorder with the level of severity it required. It was almost left down to me, a 14 year old girl, to deal with solely, an I remember feeling like I permanently had constant anxiety piled on my shoulders. I often worry that the trivialisation of the problem, has caused me to suppress it, allowing it to rear its ugly head under times of extreme stress.
Going through the disorder is awful and I wouldn't wish it upon anybody. The embarrassment I experienced due to the issue was immense, often feeling like I was being stupid and over reacting.
I wish you all the best and hope you manage/ managed to overcome it (as I am aware this post is old)