Tips for coping with Achalasia

I had Oesophageal Spasms which developed into Achalasia for about 5 years. Eventually after a Botox treatment which didn't work we tried balloon dilation which was an AMAZING success practically overnight!! I also had a brilliant consultant whc diagnosed the Achalasia after having no luck with my first consultant at a different hospital. I have been able to eat normally for about 6 years now although I have the occasional Oesophageal spasm. This has been more frequent this week and I am wondering whether anyone has tried yoga to help them? I am hoping this isn't the return of the Achalsia!! I would highly recommend the balloon dilation and also persevere with the health proffessionals!

Hi Claire.

Just reading your post on dilatation. i to have had Achalasia for a number of years and managed to get by with dilatation , the first atempt was'nt very successful but then my surgeon used fluroscopy during the procedure and straight away it was a relief, i would recommend giving it a try if its available at your hospital.

I still have annual endoscopy's and the offer is always there from my surgeon to operate but if it works this well for me it may be another option for you , i hope this helps and i am happy to reply to anyone about my experience with this procedure

regards, Jim

I'm surprised there have beeen no disagreements to the tips in the initial post. For me, rule no 1 would be almost guaranteed to bring on achalasia, not prevent it. I find swallowing easier if I only eat when I'm really hungry and then eat as much as I comfortably can, even if that means just one meal a day (with maybe the occasional coffee + biscuit at other times). The more active I am the hungrier I get, so that helps too.

Just goes to show, it affects people in different ways.

It really is amazing the disparity of symptoms, the consequences and the various interventions of this condition. I started with symptoms in 2011, firstly with pains in the chest that initially alrmed me as they occurred at night and felt like I was having a heart attack. Then occasionally I had them by day and tried over the counter heartburn tablets which did relieve the pain. Then when I was going through a particularlIy stressful time (in a life already stressful), I begain to regurgitate my food, often at the first mouthful. If I dined out, I had to check where the loos were so I could make a dash if necessary. I realised this was often with a person with whom I was having relationship difficulties and which highlighted how stress plays such a factor in my condition; indeed I believe my Achalasia was caused by years of incredible duress and this was explained when I read an item about the effect of stress on the immune system. Luckily, my consultant leads on this condition in the UK and immediately advised a myotomy which initially was very successful. It is just over a year and I'm starting to experience the twisting feeling in the gullet but that correlates with a another stress inducing incident which is ongoing. I'm hoping when these stressors resolve that my recovery will improve. My worry is that they're already doing permanent damage. btw I'm always battling my weight; er - to get it off!!! Can't win:-( Maz

Not sure how active this forum is. I am 67 and although have had swallowing difficulty off and on for years it was only when I started vomiting that I went to the doctor. I was referred to a consultant and had the pressure test but am not sure that my consultant actually knows much about the condition. He is going to give me botox injection (which sounds feasible) but prescribed some tablets called Tildiem that are prescribed for high blood pressure and angina only (neither of which I have) and nowhere on the internet or the information sheet does it mention their use for achalasia. I haven't taken any as the side effects were ones that affected the gut and the consultant had already told me I have IBS (which I'm not convinced about either) The way I have learnt to cope is eat slowly and stop immediately I feel discomfort. Drinking anything is pointless as that just adds to the amount of blockage. It doesn't matter what I eat, it can happen with anything. My consultant told me to cut down on wheat-based products and fructose. It didn't make a blind bit of difference! If we are allowed choice on the NHS can someone tell me the name of some consultant that has an interest in achalasia? I also have periodic spells of terrible pain at the bottom of my oesophagus which have the symptoms of gallstones (which I don't suffer from) and last about 4 days. I'm sure it's connected with the achalsia but the consultant thinks it's part of IBS (I don't agree!). I live in North Wales.

French marigold, good grief, how do you manage without drinking? I'd starve if I couldn't wash my food down with water, but then I've had Heller's myotomy so my peristalsis, if it still exists, won't have much effect.

Anyway, I wonder if the pain you mention at the end of your post could be your oesophagus going in to spasm. That's what mine did before the operation, and it could be painful. Just a thought.

Hi Alan T. I'm sure my intermittent pains are something to do with my oesophagus but my consultant just dimissed them as a symptom of IBS. I don't experience difficulty swallowing after everything I eat, just sometimes although this does happen more and more frequently so I just give up and wait for it to pass. Sometimes I can then resume my meal but sometimes everyone else has long finished. I just found that once I get the pain I know it's completely closed at the end and nothing will get through, not even liquids. When I had the pressure test apparently the muscles were contracting violently on each swallow of water but I wasn't really aware of it. What did you do about the oesophageal spasms? I just take strong painkillers and tell myself that I'm not dying, even if that's what it feels like!

It's about thirty years ago that I had the spasms so my recollections are distant now. I think I got the spasms when I hadn't eaten for a long time and my oesophagus wanted something to grip. The only relief (until I had the operation) was to eat something that would stick in my oesophagus for some time. Pork scratchings were the best thing - I used to carry them around with me like other people carry round, say, indigestion tablets. In fact that's what the pain was like - indigestion - and I had trouble sometimes deciding whether the pain was that or a spasm. Hope that helps.

Thank you so much for those tips. I have just been diagnosed this week with Achalasia after being misdiagnosed with acid reflux since I was 14 (I'm 24 now). I am so relieved I wasn't going crazy as I was beginning to think well maybe I am bringing on the symptoms as I imagine them! I can rlate to everything you are saying above and some of those tips are what I've been doing to live with it, not knowing it was a condition. Thank you!!

Hi. I still get oesophageal spasms occasionally. I find I am more likely to get them if I am really tired, anxious/stressed, really hungry or have a cold?! So I try to avoid these things if possible. For a long time I thought it was indigestion/heartburn but investigations by the consultant led them to believe that the pain I was having was due to spasms. Things that I do to help are to eat something and/or do some deep breathing exercises to try to relax the spasm. Sometimes this works but they are very painful and sometimes last on and off for a few hours. My achalasia is still pretty much ok (not affecting me) at the moment due to the balloon dilation I had 7 years ago, apart from having difficulty with sandwiches/bready foods! This thread is really useful in sharing our experiences...thanks everyone!

When people say "oesophageal spasms" what are they describing? What I have experienced goes like this: I get a pain just by the end of my sternum. This gets worse over a day or two with the pain spreading to a general abdominal pain and then settles a day or two later. It's unrelated to eating. It's not so bad that I would call a doctor and I've learnt that it does eventually go. However sometimes (used to be twice a year but now more frequently) the initial pain becomes really bad, I feel nauseous, sweating and generally ill. It used to happen only at night and any movement, even breathing deeply made it worse. After a strong painkiller the pain dulls to an all-over pain which gradually subsides over several days till all that's left is the initial pain at the end of my sternum and then that eventually fades too. I have also experienced the sharp pain in my oesophagus that spreads to my arm, jaw and back but that goes after about 10 minutes during which time I tell myself it's not a heart attack. One doctor said it was oesophagitis but after an endoscopy was told it wasn't (although I didn't have any symptoms when they did the endoscopy). Sometimes I get the feeling from the doctors and consultant that I'm making it all up but at least the pressure test proved I wasn't inventing the swallowing problem! I wish someone would tell me what these other pains are. I can't relate any of these pains to any other factor (anxiety, stress, hunger etc). Any explanation anyone? I would say I have a high pain threshold and I'm not a moaner so there must be a physical explanation.

I've suffered for about ten years, and after botox and a number of endoscopies I underwent the Heller myotomy six years ago. After two or three years of improvement, the condition seems to have deteriorated again. Nonetheless, I'd probably still do the surgery if I had my time again.

It is clear from the posts that our experiences and methods of dealing with achalasia can vary greatly. For me, I can barely eat without liquid, I prefer warm water over cold, I avoid fatty parts of chicken, no steamed rice (fried is o.k.), no doughy bread or chunky meats (unless I remember to chew for ages), and I try to eat slowly - the first mouthful of anything is the hardest.

FrenchMarigold's story of lazy doctors and consultants gave me a wry smile (sorry!). I know how you feel. I took years and many, many incorrect assessments were provided before I was correctly diagnosed. For some reason we don't fit their text books or pigeonholes very neatly - possibly because our experiences are so varied. Good luck everyone.

I am fairly new to the world of Achalasia sufferers. I was diagnosed a year ago. I initially suffered with a severe case of Histoplasmosis (January 2012) that planted golf ball sized lesions in my chest. When I continued to have stabbing chest pain after the Sporanox treatment I was referred to a local GI specialist who after much testing sent me on to our state Univeristy Hospital, they "think" that my Achalasia is the result of the Histo and nerve damage by lesions in that area.

I have constant pain, feeling like I have a "shovel" in my chest. Pain level at about a 7 most of the time. I've been on high levels of various medications (Oxycontin, Dilaudid, Gabapentin, Baclofen... all at the same time 6 months ago) to get some relief. Tired of all the side effects of the medications I decided to get off of them. I'm off the Dilaudid, almost off the Oxycontin and use the other two ONLY sparingly when I absolutely need help. The only time the pain is worse than that is during and after a meal. Small meals seem to be as much as I can take. Drink flavored teas, almond milk, water mostly. Yogurt and ice cream is good. Need sauces with any meat, pasta or salads. Raw fruit, vegetables, cereals and bread are the worst. I'm having trouble settling on what meals to have. What I want and what I can swallow are two different food groups. I was never a big meat eater but I really miss those raw fruit and veggies.

I've always had a very high tolerance to pain but also a very high tolerance to pain meds (I apparently metabolize them very quickly) which is why struggling to be OFF meds and PAIN FREE seems to be something that I'm never going to achieve. I'm learning to live with the pain level as it is. I'm 56 years old and my life the past two years has gone from extremely active and full to a crawl. Which makes me frustrated at times, sad at others. Stress seems to be an additional trigger and as much as I try to find my "place of peace", life isn't always peaceful.

I underwent Esophageal Dilation last January and by the end of May the pain and swallowing difficulty had returned. The earliest I could get in at the University to have it done again wasn't until this month. We've talked about Botox and having the surgery but my physician doesn't feel that's a viable option. I continue to try to find answers leading me all over the internet finally finding this site and I'm so thankful.

Reading the various posts on this site has been very validating... something that I can't seem to get from the medical profession. I agree with "Aussie's" post in that because we are difficult to diagnose and treatments are limited (and no permanent success) we seem to be "problem children". I've been treated like a crazy woman ~ before the diagnosis... the cause for pain couldn't be explained so it must have been "imagined" or simply that I was probably an addict ~ looking for someone to write more drug prescriptions for pain meds. It's humiliating to have to beg and fight (we even had to fire one of our doctors while I was hospitalized... yes, that REALLY made me seem like a crazy person) for compassionate medical care. My physician at the University has been good but they are short staffed and long in patient lists to treat so trying to get treatment (unless you show up at their Emergency Department) in less than 6 months is difficult. It's been a humiliating path being tagged as a "nut case or druggie", it's been a frustrating path sometimes having to raise my voice to get someone to look further, to get help without having to wait for 4-6 months.

I don't know that there are any other answers for me but am going to keep reading everything I can. Thank you for your posts. Reading them has given me validation that I am not "nuts".

Last year my insurance company paid over $160,000 of my medical expenses, I saw a dozen doctors,THREE of whom were amazing and worth every cent, I fired one and the rest are still seeing the endless numbers of patients, cattle marching through their offices, getting paid by our insurance companies (if they have insurance ~ God help you if you don't, YOU pay the full ticket. You don't get the price break that our insurance companies get for being "participating physicians") .

I can't imagine how those of you have lived this way, some for many many years. I'm only going on two. Thankfully, it's not a terminal condition, or is it? If I choke on something and can't get in, maybe it is.

I will continue to stay in touch. Am hopeful, and prayerful that this next procedure will give better and longer results. Will let you know. Again, thank you all for posting.

Frustrated in Iowa, thanks for listening.

BB (my grandchildren call me "Greeka" and I love them to pieces.)

I have found that to slow my eating down I just have a good book in front of me. I then spend enough time reading that it slows me down because I forget to take a quick bite.