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Feeling Desperate

Posted , 12 users are following.

hannah30321
hannah30321

I have had swallowing problems, oesophagus pain, burning in chest feeling as though food is getting stuck and an awful sensation of a lump in my throat for the last four years. I was wrongly diagnosed with GERD and treated with PPIs. My symptoms have gradually got worse and after three attempts managed the manometry and twenty four hour pH test following this I have been recently diagnosed with achalasia. I feel so unwell and life is feeling unberable I can only tolerate liquids at present and my symptoms seem to have deteriorated since diagnosis feels like everything sticking in my throat an awful taste the lump has got worse and feels like I cant feel my throat properly and my swallow feels weak. All my symptoms are bringing on the most awful feeling of anxiety and I just don't know where to turn no one understands how bad this feels. Has anyone else had this terrible sensation of a lump and at the same time a sort of lack of sensation in the throat. Would appreciate any advice anyone has.

1 like, 52 replies

52 Replies

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  • AussieBattler
    AussieBattler hannah30321

    Posted

    HI Hannah,    

    Sounds like you're doing it tough.  For my situation, which is about 8 years old now, I eat as slowly as possible, I drink plenty of water whenever I eat as otherwise I cannot swallow (not ideal to have too much alcohol close by when eating!!),  I try never to slouch, eg, do not sit on a couch when eating as you need gravity, so by definition snacking standing up is an easier way to digest.

    I have had sugery, botox etc etc. In my experience they have helped but it never goes away and you never cease to be conscious of it but I've come to accept it.

    Good luck,

    Pete

    • hannah30321
      hannah30321 AussieBattler

      Posted

      Thank you for your response god 8 years a long time to be suffering with it!    did you have the heller myotomy if so how long ago?
    • AussieBattler
      AussieBattler hannah30321

      Posted

      HI Hannah

      Yes, I had the heller myotomy within 12 months of being diagnosed.  I tend to think it improved my situation to around 60-70% normal from 20-30%.  I was advised this was likely to be the case and, despite the outcome being very far from perfect, I would do it again without hesitation.  

      Having had the oepration and many other procedures over the years, I'm now advised that further treatments are unlikely to make much impact, heance my efforts to cope with it....eg.  the slow eating, the large volumes of water consumption,  the cut up food,  the finger down the throat at least once every two or three days (this comes easy after a while and is no drama !!)

      I was treated by one of Sydney's leading acupuncture experts prior to the heller surgey, but without any success.  To his credit, he advised almost immediately that he would be very unlikely to be able to improve the condition.  Nonetheless, as others have suggested, by all means give it a go...As you can imagine, the suffering encourages you to try anything.

      All the best.

      Pete

  • AmericanGirl
    AmericanGirl hannah30321

    Posted

    Hi Hannah, Im so sorry you are going through this, though I don't have achalasia myself, I am my Mother's caregiver and she suffers with achalasia for many many years. (probably 20+ but was never diagnosed until 2009). She was diagnosed with acid reflux and then they said it was gerd... it has been very difficult for us because there isn't a lot of specialists here in Michigan familiar with this disease. I wish my Mom would have gotten help earlier and I wish she would have had surgery, but that is not an option now. What I want you to know is there is help and don't stop until you find a great achalasia specialist! It is worth it! Life is worth it! Please do not give up. I can tell you from being "on the outside looking in" that I noticed when my mom is upset or anxious about anything the pain is worse. It is difficult to relax but it does help. When I see her struggling with the anxiety I try to get her to watch an old comedy that she likes or listen to old swing music. And also, watch your blood pressure, it seems to affect my mom when someone gets her mad. I notice she has more problems keeping her soups down after she gets off the phone from talking to certain family members! I actually have told some what they are allowed to talk to her about. NO Politics!! LOL. Hannah, I sincerely pray you will find comfort from this forum, I have; everyone is so helpful and nice. Good Luck and God Bless you!! Hugs!
  • jody76982
    jody76982 hannah30321

    Posted

    Hi Hannah

    I know exactly how you feel - this was how I felt - I could not sleep at night as I was so hungry, but easting was avoided due to then being sick afterwards.  It took nealry 2 years for me to be diagnosed with achalasia (type II) and I had the Hellers my cotomy.  It was damn painful at the time, but at least I can eat now, and I suffer very little from acid reflux.  If you want to talk more, come back to the post

  • didragon
    didragon hannah30321

    Posted

    Hi Hannah , how have you got on , - are you well? I live in Gloucester and would like to know if you had the myotomy and if so how are you now and who did it as am facing the same prosopect at present
    • hannah30321
      hannah30321 didragon

      Posted

      Hi 

         I didnt end up having the heller myotomy in the end It all got rather confusing one doctor told me it was achalasia then another called it a complex motility disorder there is a delay with food getting to stomach and hardly any peristalsis in the oesophagus but not a spasm in the lower oesophageal sphincter as in achalasia. I was however very lucky to get a referral to bristol royal infirmary for a second opinion and have recently had a trial of botox into lower oesophageal sphincter unfortunately not really helped so not sure what will happen next. are you under a consultant at gloucester royal?

  • didragon
    didragon hannah30321

    Posted

    Hi Hannah , I have been under Prof Brown for tests but have now been refered to Mr Vipond for Heller operation. I saw prof Brown 4 years ago and was told pretty much the same as you with having a weak and innefective swallow where liquid could enter the stomach on the barium but solids (marshmallows did not move down without being washed down , edoscopy was normal and manometry showed overall lack of pressure but did not indictae a definate diagnosis of anything . I went away and jusy started to eat as much as I could standing up and accepted being sick and being in pain a lot . however got scared recently when such sever pain stopped me eating or drinking for a few days so went back and now have been told my oesophagus is very distended and full of food residue and my LES barely opens with no peristalsis at all , barium showed classic picture of achalasis  with the birds beak. I am not looking forward to manometry as was by far the worst test last time but just hope it confirms what they have said so far as really want to do something about this now - just had enough!! I think you need to keep going back and get them to try something else , who did you see in Glos?
    • hannah30321
      hannah30321 didragon

      Posted

      Sorry to hear how much you are suffering it gets you down and always seems such a long wait for appointments procedures etc! I was under dr shaw to begin with then was referred to dr vipond saw him last year but he called what I had a complex dismotility disorder and didnt think a surgical intervention was going to help even though dr shaw and a private upper GI surgeon thought it was early achalasia I was completely confused thats why I had the second opinion arranged through my GP so my care now transferred there and i feel alot more confidence the dr i am now seeing there. I agree the manometry test was by far the worst i had mine in cheltenham last july and the equipment they used was fairly new which meant the complete test was over in 10 minutes so was bearable but i had the 24 hr pH test as well so obviously that had to stay in which im sure you have probably had too. I hope its not too long a wait for you to get something done and get some relief.
  • Aqua-Man
    Aqua-Man hannah30321

    Posted

    HI hanah30321,

    Looks like you have a lot of good advice here in the forum...

    Most of us achalasia patients have our problems in the lower sphincter before the stomach.

    Yours sounds like it is in the upper sphincter and there might be another name for your condition that they need to diagnose...I fear something like cancer at worse.

    That is what us achalasia patients fear is esophageus cancer.

    But you are in a very bad state right now if still having an achalasia attack.

    I also have breathign problems when under an attack..and my best healing secret is milk.

    But my milk slamming trick to force open the pshincter sometimes backfires and is beginning to damage my upper sphincter..my esophageus is starting to heal up now I am no longer having an attack.

    What I recommend is you check back into the hospital and let them put you back on morphein before you die.

    It might take a month of drugs and food to get your attack to go away and allow you to breath and drink again.

    I am still planing surgery, but at the moment 100% fully cured by meds...I doped that sphincter like a red headed step child!!

    I am just now quiting the meds to see if sphincter will stay open..if it does..I will cancel surgery.

    The best medicine I can recommend for your angina chest pains is "Nifedipine".

    And the other drug is similar to the morphein they give you in the hospital.

    Here are some of my sayings I have learned...

    "Achalasia is a drug war..not a scalpel war."

    "Achalasia patients have the best drugs!!"

    "Drugs are my food....food is my drug."

    My achalasia attacks are also caused by stress too..extreme stress.

  • AlanJM
    AlanJM hannah30321

    Posted

    On a more general note, if you google Achalasia Diaries, the BBC Radio 4 programme broadcast 1.30pm BST 29 June should be available to listen again.   Moviung tale of Femi, and delay in diagnosis but with a lot of information woven in.
    • Aqua-Man
      Aqua-Man AlanJM

      Posted

      Trying to get it working..think I am too early..looks cool!!
  • darlene529
    darlene529 hannah30321

    Posted

    Hi Hanna,

    Just wondering after a year how you are feeling and if you found relief through all this suffering?

  • dolphinz930
    dolphinz930 hannah30321

    Posted

    Hi Hannah,

    I don't know if you will get this, but I thought I would take a shot and reach out to you. I too have Achalsasia and know exactly how you feel.  By now I hope you have had some treatment and or surgery to help.  I have what seems different from other a little  but none the less Achalasia.   At first it was liquids, then food.  Liquids seem to be the worst, as it goes down and comes right back up.  Food is a little different.  I feel like it is down until I drink then everything comes back up.  Dr. said that my esophagus has stretched to twice the normal size and that the food sits in my chest which is why I get such terrible chest Pains.   This is the worst disease.  I feel so alone and don't complain to my family.  Did you loose weight? I have lost 45 lbs since Mid June. and it is now Mid August.  Don't get me wrong I was over weight  and could afford to loose some of my extra pounds, but now so darn fast.. people who see me like the cashier at my favorite store asked me if I was OK.? followed by do you have cancer? Well I was hoping to learn which treatment you went with and see how your results were.  thank you in advance for listening and sharing your experience with me

    Beth  

    • AlanJM
      AlanJM dolphinz930

      Posted

      If your oesophagus is getting baggy the liquid is probably collecting in a pool below the level of the sphincter valve that leads to your stomach. Eventually it regurgitates aa there's nowhere else for it to go and the pressure gets relieved.

      Does sipping and eating small amounts at a time make a difference?

      I think it is time for a serious talk with an experienced specialist surgeon.

    • dolphinz930
      dolphinz930 AlanJM

      Posted

      thank you for replying. No sipping is exactly the same. I go this Wednesday to surgeon to discuss options . liquids seem worse. but the gastro doc said basically the same as you that my esophagus has stretched out like a balloon so food in small quantities pools at the bottom and as soon as water or liquid is swallowed it all comes up.  and because of these wonderful little pockets food sits and when I sleep i sometimes inhale into my lungs. I have had a lung infection twice. but this was before I was diagnosed with Achalasia now I sleep most nights in a recliner in our TV room as I cough for a minimum of 1 1/2 - 2 hours 4-5 times a week and I wake up the house unless I am in our t.v. room on other side of the house. 
    • AlanJM
      AlanJM dolphinz930

      Posted

      It might be that an oesophagectomy is on the cards then. Removing your oesophagus sounds scary but the quality of life can be better afterwards. It is definitely major surgery and the Oesophageal Patients Association run support groups for people who have had this surgery.
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