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.
Hey Hannah,
if if you have been diagnosed with achalasia the next step is to find a doctor who specializes in achalasia. The doctor can tell you which course is the best one for you.
there are a few procedures available , but only a doctor can suggest the best option for you.
Surgery has has a very high success rate, but you have to know that this disorder can't be cured. Surgery helps control the disorder to various extents, but it doesn't cure it.
there is help out there for people with achalasia. You just have to find the right doctor.
best of luck to you.
I do sympathise with you because it does feel awful, as many others would testify.
Getting through the manometry test is a great milestone; the next is to speak to the specialist about what might be done to help you.
Meanwhile try ( and I know it is difficult) and relax, because nervous tension will make things worse. Think about whether your posture and the environment when you eat can be adjusted to make you feel less tense. Try concenrating on liquid foods for a while until your morale improves, and think about adopting relaxation techniques (or even acupunture?) as a means to supporting the medical side of things.
Thank you for your response I definately think stress makes this condition worse. What is your experience with achalasia.
I helped run a meeting in London last year for achalasia sufferers, the report of which is on the website of the oesophageal Patients Association under The Oesophagus and Achalasia. We have been trying to set up another meeting. There have been logistics difficulties but people are working to overcome them.
I have just looked it up and it sounds really interesting, hopefully there will be another one arranged in the future. I will keep a check on the website. Thank you.
Hi Hanna, I'm currently in no mans land with the diagnosis for myself ! I suffer very similar symptoms and some days are grim ! I have had all tests manometry and 24 hour test , to which this showed not much reflux , I have a performing sphincter and I have a weak wet swallow result , was taken off ppls and just have gaviscon tablets after food as it helps to suck on one of those after food , I have a lot of chest pain and lump in throat ! I have fizzy water with food as this helps speed the food down the oesophagus , and that's all I do apart from my hot water bottle stuck on my chest on a nighttime to help relieve some pain ! I will agree with you Hanna my life has changed a lot and it's hard to live with. ! Hang in there cheers Roz
Hi Roz thank you for your response. It helps to know other people experience the same sort of symptoms despite trying to remain positive some days it really does get you down! Are you going to have any more investigations done?
Well I'm now got to wait a year , well it's been 2 months since I've seen the consultant , he wants to see if it gets better or same or different ! Not sure if he thinks it's a stress related problem but I'm not convinced as I've had more stressful times in my life and I think it's a case of waiting to see how things develop , in the mean time I'm going to go back and talk to my GP and maybe maybe plan with him possible chest ex ray and barium swallow test for nearer when I go back to consultant , and ask about pain management maybe acupuncture or something , I'm keeping to Gluten free diet which helps , what are you going to do now ? Are you on PPl s tablets like omoprazole or so , I was thinking of asking doctor for antidepressant as it's a relaxing for the oesophagus it might work ? What do you think ? It's a tough thing , with what seems to be not a lot of treatment , but there is some treatment luckily , but it's not overnight unfortunately , I've decided to get on with it ! But I hate the fact I'm changed ! And it's daily ! On wards and upwards ! Any tips on anything your doing to help let me know , I'm always around to chat too ! Cheers Roz
Hi Hannah
I have been living with achalasia for about 5 years, there is plenty off good advice here...https://patient.info/forums/discuss/browse/oesophageal-achalasia-and-spasm-1655
I have a few rules which I live by and they work for me, Dont eat late generally last meal before 7pm at night, and drink hot water with it. Try and stay away from and processed fats and oils especially transcentric fats. Gluten free diet was one of the biggest gains for me, bread is a killer for me. But the biggest success story was proably 50ml of coke a cola before I sleep, this helps disolve any fat and food that has not been washed down, I have no idea what the damage is being done by the coke but hell I sleep without regurgatating my food. I have gotten use to throwing up when I feel my food not going down, no point in suffering.
Take your time when you eat and be patient! chew well and take smaller bites. ENjoy what you eat and be happy to eat hand sized portions and more often. Dry food that needs to be hydrated when cooked such as bread and biscuits block me up and really makes it difficult to swollow.
I wish you all the best, I have not opted for the operation.
Hi Thank you for the advice. What are your reasons for not opting for the surgery? Is it possible to live with achalasia long term without surgery?
Thank you Roz. I have tried an antidepressant but did not help at all. I have just started accupuncture only had one session so far so not sure if this will help but am hopeful as I have read positive things about it. I tried reflexology and hypnotherapy previous but didnt feel much improvement from it. I was made to feel as though my problem was psychological and caused by stress but my stress was coming from all the symptoms I was having. I was on omeprazole for about three years and have tried various others but with little effect since my diagnosis of achalasia have stopped the omeprazole my manometry result showed high pressure in lower and upper sphincters i am having a barium swallow on thursday although I did have one three years ago with a normal result. After my barium swallow Im going to get referred to surgeons and may be able to have the heller myotomy. It must be frustrating for you with no diagnosis how long have you had your symptoms?
Hi Hanna , i have had my symptoms a year now , the consultant seemed to think he wouldnt want symptoms to continue but never stressed why , its just so awful , im going to try accupuncture too why not eh, what is heller myotomy that sounds like an op! yes i feel as if tablets are no good had some sucess with omprazole in the very beginning but not now ,have you had a chest xray they say to have this done to get the bigger picture ! you have suffered ffor a long time , thats to long and i know what you mean with how the consultants they think its stress related they have all mentioned that stress this and stress that could be a factor in this, , yet before this happened to me i was happy with my life completly , business , kids , good husband , very lucky , now im only concerned because im tired and its sore and i cant eat and certainly cant be a socialble as i was , its crap, but saying all that im a positive person and i dont like what is happening to me but i have to acept it , you must of had a lot of time to think and resource all your information its great that we can talk on these forums so that its a helpfull way to hopefully feeling better, so if you had a normal result with the barium swallow , is that what can happen and will that then decide what is to happen next for you ?
Dpending on how bad the condition is, I think it is possible to live with achalasia without surgery, but the longer you leave it, the more likely it is that the oesophagus starts to lose shape and becomes resistant to surgical intervention, and if that happens one is then faced with the prospect of an oesophagectomy, where the oesophagus is removed and the stomach pulled up into the chest and joined to the remaining oesopahgus 'stump'. That really is major surgery. And the other factor is that having repeated attempts to stretch the lower oesophageal sphincter can make the cells more fibrous and less liely to respond to surgery. So if things are bad in relation to quality of life and so on, the earlier you see a specialist, get a good detailed diagnosis, and then opt for the best treatment first time round, the better.
It all does sound pretty grim!! My diagnosis is based on manometry findings I have a barium swallow coming up to confirm it . The last barium swallow I had three years ago was normal. According to the specialist I am in the early stages but my symptoms are awful don't think I could stand it if got any worse ! If they offer me the op think will have to have it! Do you think you will need an op eventually and do you have regular checks to monitor the condition?
Sorry just realised I got your reply confused with barrym wasnt concentrating
I also wanted to ask you if you know how the different types of achalasia are classified as I have seen type 1,2 and 3 mentioned? n
I do not know enough about the types 1,2 and 3 except that I believe that they depend on whether there is peristalsis or not (ie the muscle contractions that move the food through the system), whether there is spasm and pain or not and so on. I am not sure that all doctors recognise or use those categories. As far as I am aware, it also depends on whether the lower oesophageal sphincter (the valve beteen gullet and stomach) sticks open or clamps shut; and whether the problem with the nerves / muscles occurs further up the oesophagus or not. I also believe that as well as a medical apsect to how well the nerves / muscles work, there is a mental / relaxation / stress element that can make the nerves work worse, or better, and the more that one can try and relax and take pressure out of eating situations, inlcuding posture, timing of meals, avoiding problem diets and so on, the better the improvement is likely to be maintained. But you don't need to tell me that this is easier said than done.
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
Thank you Alan all your information really helps. What do you think about accupuncture? I have had one session but obviously too soon to notice any benefit.