Viewing 15 posts - 1 through 15 (of 28 total)
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  • #3617
    Jules2k1
    Participant

    Following a gym class where I choked on my chewing gum and thought my time was up I developed a phobia of swallowing. I had however had a swallowing problem due to anxiety a few months previous and this was just worsened on this occasion due to the anxiety being at an all time high. The past two days I have made massive progress and managed to eat more than just yoghurt. I wouldn’t be able to manage anything other than set yoghurt or very smooth soups with no bits in even herbs. Having researched absolutely everything after being fobbed off by the docs and put on long waiting lists the only way I can beat this thing is to take control. This particular swallowing problem I have now accepted is all part of my mind and the trauma of choking flipped a switch telling me not to swallow incase it happened again. I have taken up meditating and learning breathing techniques which deal with the panic side of things and read a lot into the science of the mind. I also found an article on mouth exercises to encourage food to move to the back of the throat. I was holding sludge food at the front of my mouth and swallowing miniscule bits with water. I need to teach myself how to swallow again. Having weaned my baby off milk not too long ago I felt it must be just like that, gradually build up the solids and retrain your muscles and mind. I started this week by writing a list of all the things I’d managed this week and put them on a safe list, even if I had only two bites before I had a panic and told myself that at least they went down. I have tried not to focus on the sensation at the back of my throat and entrust in my brain to send the signals to take any food past the throat and down to the stomach. I then set myself a target. One bite of chicken, even if I have chewed it down to a thick sludge it still went down and upon having a panic beasted through and said out loud ‘I will not be defeated’. Getting thru a pint or so of water I am now on day two of potato, soft veg, baked beans and even a very small piece of sausage and lasagne. This time last week I was at an all time low but followin a reiki session feel like I’m now on a path to some sort of success, i hope! Not sure if it’s coincidence… I will keep posting my progress and am thrilled that I’ve found this website and forum. I will keep posting my progress and am thrilled that I’ve found this website and forum…just hope my techniques can help someone else who might be dealing with a similar experience. I fully understand my problem is different to post surgery swallowing problems and feel even more lucky that I’m where I am right now. I really recommend meditating as it has taught me to focus on something else other than checking I can swallow and not the sensation in the back of my throat. Xx

    • This topic was modified 4 years, 11 months ago by nfosdadmin.
    #3650
    Jules2k1
    Participant

    Just an update…have managed to stay on a fairly steady stream of mash and very soft veg. Weetabix and small amounts of toast but by the evening things seem to be a lot harder to manage so sometimes just agree that I’ve had enough for the day after lunch. Treat myself with brie probably more often than I should. I have stopped losing weight so dramatically so must be doing something right. Two stone in four weeks but I had it to lose but didn’t want to cheat it which is the reason I was at the gym in the first place. Managed a run this week following a successful breakfast of dippy eggs. Would love to hear from anyone else struggling after choking. There is absolutely no support for this in the UK. Xx

    #3682
    Jules2k1
    Participant

    Still seem to be taking three steps forward, two steps back. Beginning to wonder if this will ever go away…trying to stay in control. Xx

    #3901
    inkdbakr
    Participant

    You are not alone. I registered with this site just to tell you that. I’ve been dealing with it for 12 years. Choked on a piece of steak. I’m now the slowest eater I know lol.

    #3903
    Karel
    Participant

    Thanks you guys for sharing. It’s nice to know I’m not the only one who’s experiencing this — although it feels like it sometimes. My problem started during lunch at work when a started choking on a piece of apple in the break room. It really panicked me to the point where I wouldn’t eat anything solid – not even anything soft like a brownie. My doctor told me “that everyone chokes some times” but that didn’t help much. I’m probably hyper vigilant when i’m eating, but I’ve started to try soft food again. Let me know if you have any advice! Thx!

    #3911
    Jules2k1
    Participant

    Thank you so much for writing and sharing your experiences. I’ve been in a dark place the past couple of weeks. Just as I think I’m getting somewhere I crash again and can barely swallow my own saliva. It’s so annoying. I finally got to see a throat specialist after five months who was absolutely disgusted that my docs had waited so long and fobbed me off with anxiety all this time. He couldn’t believe I haven’t had a meal since September and lost two stone in the first four weeks. I saw him this week and he’s ordered a swallowing xray. Have either of you had this? I’ve read you have to swallow lying down which scares me rotten! Lol. In the meantime I’m seeing a CBT specialist who says it’s all in my head. I really actually hope it is all in my head to be honest. I asked the throat specialist if there’s any exercises I can do and he wasn’t into giving me any until he’s done the xray, i suppose then he’ll know which area to focus on and which exercises are best. I had an mri scan and that was clear so that part put my mind at ease. Xxx

    #3912
    Jules2k1
    Participant

    Karel, i really hope you can start adding new textures and variety into your diet. I feel you pain with ignorant docs..I really wish they’d give them more training on awareness on dysphagia. Don’t feel like you need to rush. Just go with what you feel comfortable with. I found mash potato and cheese sauce was on my safe list early on. Keep a list of what you have managed, it works well for inspiration and to remind yourself that you managed it previously. Sorry my battery is about to go so I’ll check in soon. Thanks again both for commenting here, it’s really appreciated xxxxx

    #3914
    Stella
    Participant

    Hi everyone, it’s a relief also for me to have found someone to talk to and share the same experience. Sorry for my bad english but am an italian girl, and Jules I totally understand you. I have the same problem, it started 2 months ago, I was eating and talking as usual but a piece of meat seemd to get stucked in my throath like it was not going up or down. The sensation was awful and I had to go to the ER but they said it was everything ok. I made an xray with barius and an ultrasound to my thyroid but everythig seems to be normal. So thats why I started to think it’s all in my head. Some days I can eat something like a small portion of spaghetti, or even eggs (chewing everything a hundred times before swallowing) and other days I can’t take anything rather than a soup or milk. I really hope that there’s a way out of this. Hope to speak to you soon!

    #3921
    Karel
    Participant

    Hi Jules – Thanks for your support! I wasn’t familiar with CBT so looked up some information on that. Maybe that would be helpful? Also, thanks for your advice on things to try! I made a small “sweet potato casserole” that went down okay (slowly) but actually tasted good. It was really simple to make too – canned sweet potato, butter, and brown sugar (optional to add an egg or two) and baked it for ~20 minutes.

    Stella – Thanks for sharing what you’ve been going through too (your English is really good). Wish you both the best. Hope to hear from you soon!

    • This reply was modified 4 years, 7 months ago by Karel.
    #3923
    nfosdadmin
    Keymaster

    For Jules, in response to your comment above about xray swallows:

    Typically, this is performed by a speech therapist or an ENT doctor. Unless your doctor wants to take a look at your esophagus when you’re swallowing, you shouldn’t have to lay down during the test- especially to eat or drink! They usually only do this if there’s a concern that you might have reflux (where things come back up from the stomach).

    During a typical xray swallow evaluation (called by many names, Modified Barium Swallow Study, MBSS, Videofluoroscopic Swallow Study, VFSS…), the speech therapist or ENT will ask you to take a sips of liquid (it’s usually white and tastes chalky), a bite of pudding, and a bite of a cracker or cookie. Sometimes they’ll ask you to try different ways to swallow, for example, tucking your chin down to your chest before you start swallowing. While you’re eating and drinking, they take a video x-ray to watch how it goes down.

    I recommend asking to watch the recording of your swallow eval with whoever performs it (if they’re not busy, you can probably watch it right afterwards). Sometimes it can be really helpful to see what it looks like from the inside when you’re swallowing.

    #3925
    Jules2k1
    Participant

    Wow thanks so much for everyone’s support in this forum. It’s so good to be speaking to people who know what is happening and how we are feeling. My cbt therapist called today to ask to extend our session tomorrow to start experimenting with food. I already told her I’m not comfortable with it really until I’ve had some medical confirmation from the xray. I have made such an effort this week to try and regain the natural swallow. I realise I am preventing it and holding everything I have chewed in the front of my mouth and taking little bits down slowly so I have tried to allow the natural suck reflex to allow food to follow it’s natural course along the inside of my cheeks which I want to think is working although I still stick to the safe foods and meat and fish is impossible lol! I hope to look back at this in a few months and think what on earth was going on, swallowing is easy! But easier said than done! On my safe list is cheese and soft crackers, weetabix, blueberries, mushy peas, toast (sometimes), baked beans, chocolate buttons and kinder Bueno, very blended smooth home made soup and smoothies. My cholesterol has probably gone through the roof lol. Thanks for the sweet potato recipe and the reassurance on the xray. I look forward to hearing everyone’s updates and hang in there, we’ll get there! Xxx

    #3926
    Stella
    Participant

    Hi Karel, thanks for your reply and for sharing your recipe 🙂 Have you added some other things in your “safe list”?
    For Elizabeth, I’ve made an xray with barius (I suppose it’s that liquid you describe, white and chalky) but they did not make me swallow anything else (nothing like pudding or cookie), maybe I had a sort of “partial exam”? Since my problem is mostly with solid food I think that maybe they should be testing me also with something like a cookie. I’m a bit worried about that, maybe It’s better for me to repeat the exam?

    Jules, have you already made the xray? They made you swallow different things like Elizabeth said? Let us know when you have your results 🙂
    I’m seeing a psychilogist but I read that with this kind of ploblem it’s better to speak with a CBT specialist.
    On my safe list there are soups and smoothies too, cheese, chocolate, yogurt of course and pudding, sometimes I can also eat small portions of spaghetti or rice. A few weeks ago I also had some bread and some tuna ol salmon, something that now seems impossible to me. As you said, It’s always like I made two step forward and one step back. It’s kind of frustating. I already lost like 10kg, I’m pretty worried 🙁 I really hope that someone can give us some positive vibes telling that we can go through this!
    Hope to hear from you soon! Stella

    #3927
    Jules2k1
    Participant

    https://www.facebook.com/groups/102453736503465/ here is a group I have joined recently, is it mainly professionals but they mention in my comment that it’s important to get a diagnosis before they can give any proper advice. I suppose all we can do is keep asking our docs until they have ruled everything out and we can concentrate on our mind work lol. I have seen my therapist today and she wants me to take in a coronation chicken wrap next week and just swallow. She says her supervisor has said that I must cut out all my safety behaviours (using sauce, chewing for ages, taking tiny bits down etc) and just swallow. I said that it’s alright for him to say!!!! Just swallow. Lol. It seems crazy to think but the mind is so powerful, it can just switch off a mechanism but the overall thing makes sense. Swallow test is on the 11th Stella, i have told them I’m not comfortable swallowing just like that until damage is ruled out. I’d prefer it if there was a first aid trained person in the room too, no offence to my therapist but she is blind and can’t see what is going on but I fully appreciate the work she is trying to do with me about controlling the mind and it’s behaviours. Xx

    #3958
    Stella
    Participant

    Hi Jules, Hi Karel, hope everything is fine. I’ve seen a otolaryngologist last week, he made me another test, with a kind of small tube he went down from the nose to my throath and he was “filming” while I was swallowing some water, some pudding and a biscuit. He said I have some kind of small “stagnation” (I’m sorry I’m not sure this is the correct word) with solid food and I have to make another rx exam next week. He said it’s seems nothing to be worried about but in the meantime I still have this problem. Hope this next week exam helps me to figure something out. Jules, how was your xray? Hope to hear from you soon. Best!

    #3962
    Jules2k1
    Participant

    Hi Stella, good to hear you’ve got some answers and more investigation happening. My xray is tomorrow (I can’t sleep) I had to cancel it last Friday as I got a chest infection and inflamed trachea, typical! Lol. So luckily they booked another for only a week, still I won’t get any results for another month!!! Grrr…. Where I’ve felt so sick this week I didn’t eat for four days and when I finally felt like food I was hoping there would be a small miracle and I could swallow but no such luck! I have been taking food into my cbt therapy but I don’t think it’s really helping at the moment. I try and practice the techniques at home but it doesn’t help. I suppose I’m probably just holding out for a medical diagnosis or some exercises from a professional who can help which I hope then will flick the switch back to the ‘normal’ position in my mind. Lol. Xxx

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