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Swallowing Difficulty - Desperate

Posted , 31 users are following.

Pipsqueak
Pipsqueak

God this is really getting me down, to point I have been wondering if I am ever going to eat again and I am frightening myself with the thoughts I am having.

I just cannot swallow solid foods, it started 4 weeks ago. i was happily eating some chicken and all of a sudden my throat 'closed' and I choked. I managed to cough it back up and carried on eating after.

Next day, for love nor money could I swallow, each time I tried i choked.

4 weeks later and I still keep trying the odd bit of food here and there and it just won't go down.

I have had an endoscope - that was a highly unpleasant experience but it found nothing. I was told to go home and eat and to stop being so stressed.

I have been to seen a sports therapist and she has found that I have very very tight neck and jaw muscles. But it still feels like food won't go down, although I did feel better once I had seen her.

Trying to get another appointment with the doctor is like golddust.

I am normally a fit and healthy 37yr old woman, mum of three. I love my food and I want to eat. Thing is, this has gone on so long now I have gone past being hungy. I think this is probably a bit physcologial now as well but the tightening really does happen.

The back of my neck, round to the front and up under the jaw is so tight.

Please someone tell me I am not going nuts and that I will be able to eat again.

5 likes, 96 replies

96 Replies

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  • penny33699
    penny33699 Pipsqueak

    Posted

    I was pleased to come across this forum.  I've been a sufferer for around 6 years and it's been getting slowly worse.  Feels like food is stuck at the top of my oesophagus and there is a gurgling in my throat.  Sometimes I can get it to come back up but once or twice I've been admitted to A&E and have had to have it pushed down with an endoscope.  I'm now scared of solid food and after another episode this week, I'm living on soup.  I'm going to a new doctor and am going to see if I can have something done about my pouch.  I've read that operations are possible. I know I have low motility and one possibility for me is a link to MS.  I'd also like to ask if anyone finds a connection with drinking alcohol?  Is it worse after a couple of glasses of wine?  I definitely find a link with stress and eating in social situations is very difficult.
    • candie21474
      candie21474 penny33699

      Posted

      Mine sounds exactly like yours. At top of esophagus and a gurgglel sometimes after I swallow like the rest goes down. I don't have chest pain like others are saying though. I do have silent reflux though. I take pepcid daily.

  • Pasha333
    Pasha333 Pipsqueak

    Posted

    First things first, you need to know you have achalasia - go see your GP and ask to be referred to a Consultant and ask for Motility tests as these are about the only test that will confirm achalasia.

    My heart goes out to you, I have watched my poor husband suffer for nearly three years now and it took over two years to diagnose him. He did the usual... chest pain, heart tests, liver tests, endoscopy - both ends, and finally motility tests gave us a clear view.

    Keep asking, he who shouts gets listened to xxx

  • bookgirl5
    bookgirl5 Pipsqueak

    Posted

    For ten months I had difficulty swallowing.  Also my mouth burned so bad there were many things that I couldn't tolerate.  No more mexican food for me.  Even Ketchup burned my mouth.  I had all the tests Endoscopy, ENT visit where they look down your throat, and the barium swallow which resulted in a choking fit because the pill wouldn't go down.  Stress was brought up almost right away.  By the tenth month my upper lip started to feel numb and just strange in general.  My gums were bright red.  Well, I thought another visit to the GP might be in order and he said he'd check my thyroid and I asked him to check my iron.  My iron was at 2.  I took iron pills twice a day for five days and the swallowing issues went away and have been gone every since.  I'm still taking iron five months later.  My lip is normal and my gums don't burn.  I don't advise iron unless you are tested for it, but they should be willing to do that.  It was a simple fix and a lot of things that were wrong with me have gone away, including a dry cough that I've had forever.  This might not help you, but I hope it helps somebody, because I love food and I was getting upset and decided I'd have to live without enjoying it anymore.  I don't think they are very familiar with this reaction to iron deficiancy but it does show up on google and I am so happy for the easy fix!  hope things get better for you.
    • AlanJM
      AlanJM bookgirl5

      Posted

      Glad that the doctor was able to sort out your problem.   As you say, there are many different reasons why people have difficulty swallowing, and it is good to hear of one that was relatively easily fixed once the cause had been established.
  • margery03727
    margery03727 Pipsqueak

    Posted

    Hi Pipsqueak

    I can totally relate to your discussion, I was begining to think I was the only person in the world to have this problem. My problem started November 10, 2014 - out of the blue I just could not swallow any solid food. My GP fast tracked me to an upper GI Consultant, but wasn't fast enough for me, so I booked a private consultation - I was so worried I had cancer of the Oesophogus. The day I visited him he booked me in for an endoscopy the next day. This showed up I had a 2cm Hiatus Hernia, and Candida (thrush) with inflammation in my stomach. He put me on meds for the thrush which he said should clear up within 2 weeks. Well the thrush cleared up and I still could not swallow. So another visit he recommended I saw a speech and language therapist ( they help with swallowing difficulty) I am seeing a lovely young lady who comes to the house. I can swallow some chopped up tinned pears/peaches, scrambled egg, egg custards, mashed bananas, smooth soups and that's it. Its been 3 months now and am on a liquid food supplement called Ensuretwo cal. on prescription. I have since had a private CT scan on my head,neck and thorax - all of which were unremarkable. My neck, and throat are very tight and feels like I have a lump in my throat - I do have something called GORD Gastro Oesophogul reflux disorder and have been put on a Proton Pump Inhibitor ( Lansaprazole 30 mg ) stops the acid from coming up. I still can't swallow. I do excercises that the Speech Therapist gave me, I still can't swallow.

    My social life is almost non-existant as everything revolves around my eating regime. I also feel like I will never eat again and no-one seems to know what the answer is. I am 68 yrs old and my husband just retired, all the plans we had!!! had to cancel a cruise we were going on in April. I too am desparate.

    • Pasha333
      Pasha333 margery03727

      Posted

      Bless you margery. In the absence of little proof that they are successfully treating it, may I suggest you request a Manometry test. This is to test the pressure and neurological response of the oesophagus. Achalasia is often mistaken as hiatus hernia as the oesophagus is stretched by food not passing through the sphincter. I am not saying you do have achalasia, but it should be ruled out x
    • margery03727
      margery03727 Pasha333

      Posted

      Thank you Carol I will look this up and bring it to the attention of my GI consultant.xx
    • anna97
      anna97 margery03727

      Posted

      Margery, you may find my website useful www.dysphagia.eu. It contains hints and tips on swallowing difficulties along with recipes and food preparation. With the correct approach, dysphagia can be managed. Please don't let it stop you having a social life as not having some fun often makes symptoms worse. Anxiety about the problem can also exacerbate the difficulties. Take charge and don't let it rule your life. Good luck smile
    • flowergarden
      flowergarden margery03727

      Posted

      Hi Margery, I hope you are able to have Manometry testing. It will give you the answers and direction you need to adapt to this new way of life. I was advised to eat six small soft meals a day and not to consume food after 7.00 pm.

      Can you reschedule your cruise? I was diagnosed a month before our cruise and went ahead with some apprehension. I found a variety of choices, porridge, hot and cold soups, fish, mashable vegetables and of course lots of delicious soft desserts and fruits. I would not have liked to miss out on all the wonderful experiences I had, - the advantages outweighed the disadvantages. I found it beneficial, when appropriate, to tell fellow travellers of my predicament so they had some understanding of choices and awkward moments! Some cruise lines will cater for special requirements if advised in advance. My need for five pillows to sleep was met with some amusement and curiosity!

      A slow cooker is a great addition to the kitchen, enabling you to maintain your nutrition levels with protein, vitamins and fibre. My stick blender, food processor and blender are invaluable. I am 65, love to cook and will not be beaten by this disorder! There will be bad days but being a recluse is not an option for us! We have a lot to offer!

      Hang in there Margery, and good luck. I hope this helps you.

      Regards.

      flowergarden

       

    • margery03727
      margery03727 flowergarden

      Posted

      Hi Flowergarden

      Thank you for your reply, I have now started to eat some foods albeit soft and in sauces. I have had the expertise of a speech and language therapist who gave me excersises for swallowing and strengthing throat muscles. It seems I have an auto-immune disease called Sgorgrens Syndrome. This causes the tear ducts and saliva glands from producing saliva properly - this seems to have caused the swallowing problems - not enough Saliva in the mouth, throat and oesophogus. At least I know what it is now. Unfortunately I also have gastric/bowel issues as well - Diverticulitis, so the pain from this during the flare ups causes me to have Gastric problems. I do make soups daily and also egg custard - some with cheese. I also love to cook but cannot manage the textures of some foods whether blended or not. We will re book another holiday sometime this year, but needing to be near our Doctor's and hospital has taken priority. 

      Thank you again for taking the time to pass on your invaluable information

      Margery

    • flowergarden
      flowergarden margery03727

      Posted

      Hi Margery, It's been a long time and I have wondered how you are getting on. Did you get to go on another cruise? I do hope you are managing ok and enjoying cooking once again.

      I have recently been diagnosed with Ehlers Danlos Syndrome Hypermobility which accounts for a lot of my issues although, for some time, I have been experiencing Sjogrens Syndrome symptoms, severe dry eyes, blepharitis, thick stringy saliva, often thirsty and very dry skin. I constantly have mouth ulcers and inflamed gums. Constipation is also a problem. My blood tested negative to Sjogrens but I have found in my research that it does not always show up initially in the blood for some sufferers. This is the only test I have had. Did you have a lip biopsy and/or other tests? It is difficult for me to differentiate what symptom is attributable to which disorder! My white blood cell count has been down with mild Neutropenia but now back to normal.

      I have Systane eye drops for day and GenTeal gel drops for night. Some days I have had to use the drops 10 times and I wake in the middle of every night with a bulging pressure feeling which is relieved by another application of GenTeal. My swallowing problems have remained the same with constant aspiration and choking on thick saliva. I have a Granuloma in my right lung, patchy Atelectasis and medium airways disease.

      My G.P. has told me I haven't got SS but I am not convinced that all this is part of EDS. I don't want nor need another issue to deal with but want to act responsibly so that I can just get on with it. At the moment there is no damage to my eyes other than Epiretinal Membranes in both eyes. Do I give it time or should I just accept that this is all part of EDS? It took 66 years to get the EDS diagnosis but no doctor put two and two together. I had to find out for myself and should have been diagnosed as a child. There had to be a reason for the swallowing disorder and 101 other ailments!

      I hope you can give me some direction or advice.

      Best wishes and take good care of yourself.

      Flowergarden

       

  • Jacy
    Jacy Pipsqueak

    Posted

    I felt exactly the same as you. I couldn't stand it.  I asked my husband to come with me to my doctor.  She was very patient and explained what was happening to me.  Basically it is an anxiety attack. I felt like I had a lump in my throat, my neck was aching andfelt tight.  My stomach hurt and mentally I couldn't calm down.  She gave me Beta Blockers and explained that my body was producing too much adrenalin as in "Fight or flight" mode.  The Beta Blockers send signals to the brain that "everythings OK".  She also gave me Omeprasole for my acid stomach or you can take Gaviscon.  I am starting to feel normal again. This whole episode gave me a panic attack so she suggested some therapy to help with anxiety and panic.  There is nothing wrong with the throat it is gradually easing.  I wouldn't start getting things done with the throat. it's all part of the anxiety/panic attack.
  • Jacy
    Jacy Pipsqueak

    Posted

    The other thing that I am convinced haa something to do with it is iron.  I am taking a multivitamin with iron.  The other thing to reduce the stress of it all, I got myself soluble Paracetamol in case I need a painkiller and chewable vitamin tablets.  Its all about reducing stress so I won't attempt to swallow tablets. 
    • Pasha333
      Pasha333 Jacy

      Posted

      Glad to hear you are improving Jacy 😊whilst it is true that vitamin deficiency and/or emotional stress can play a part, true achalasia is mechanical in origin. Initially my husband was told panic attacks and "in your mind - just relax" and a specific test, manometry test, finally, after nearly three years proved it wasn't. That said, the more he stressed about swallowing, the less likely he was going to swallow!
    • Jacy
      Jacy Pasha333

      Posted

      The more I look into this problem the more I realize that no one really knows the true course.  When we think how complex our bodies are and whenyou read different articles (especially when you go the natural route) it is all so confusing it's enough to start off a panic attack!!

      I have decided to come off the forum because it makes me feel worse.  I will do what I can to reduce stress and relax, cut down my stomach acid, don't try to swallow tablets and hope things improve. God willing!!

    • AlanJM
      AlanJM Jacy

      Posted

      Dear Jacy

      Yes it is complicated, and nobody on this forum can substitute for an experienced doctor, so, if the need arises, try and get referred to a specialist Upper GI (gastro-intestinal) teaching hospital like St Thomas', University College hospital or a large regional centre like Newcastle or Guildford.

      All bets wishes for the future.

       

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