Achalasia or Not

Posted , 6 users are following.

I have had swallowing problems (both solid food and liquids), severe chest pain, throwing up, dilations, etc., over the last year. I have had three dilations in one year, each time when I have been unable to swallow food and liquids for 3-4 weeks. I dropped 30 pounds the first two months this started happening.

I had a modified barium swallow test done, with results that led the radiologist to suggest it may be beginning achalasia. The doctor that ordered that test ignored the comment, and said he didn't know what to do, and basically to just live with it.

I am now on my 5th doctor, who actually gave me hope when he said he was sure it was achalasia, and bullied me into a manometry test (which I had tried twice before but pulled the tube out before they could even get a measurement). I got through it but the results said only 4 out of 10 swallows showed problems, so the doc said just continue to follow the GERD diet and sort of kicked me to the curb. I've been following the GERD diet for 6 months with no change.

Has anyone had achalasia-type symptoms but found they did not have achalasia? If so, were you able to find anything that helped? (I do know that drinking water helps greatly to mitigate the chest pain when it occurs.)

And does anyone have advice on how to address the fact that doctors who can't figure it out seem to just refer you to the GERD diet? (I do have GERD, but it is controlled with medication.)

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  • Posted

    First of all, sorry to hear all that you are going through. But yours sounds so much like mine except for the manometry test which I have not gotten yet and don't see the need for it as you say, you had that uncomfortable test done and they still did not help you. I could not swallow liquid or solids last summer, this went on for about 11 days, I lost about 22 pounds. It was so scary. I finally called my surgeon and thank god, he got me in right away and scoped me and said I had food stuck in my eosphagus. He was the first doctor that told me I had ACHALASIA through doing a barium swallow test. I have had at least 5 dilations done and stretching. The last one helped for almost a year, I was so happy but of course you still really have to watch what you eat. You learn what foods are easier to swallow than others. I am being referred to a surgeon in Toronto, to inquire about the POEM surgery. To weigh my options of course. I am also going to see an EAR NOSE AND THROAT specialist as they can show you how to do exercises to strengthen that area, help with swallowing and am also going back to see my HOMEPATH doctor. I will let you know how I make out. I really want to avoid surgery if I can. Right now through doing my own research on different websites I have being taking vitamin B complex pills ( I chew all pills because I could never swallow, nothing to do with the Achalasia , just never could swallow no matter how big the pills are ). But they have helped! I am so pleased. If you can, I would recommend you try taking these. I take one a day before I eat breakfast. I also heard that Magnesium and Potassium are good for helping with swallowing too. Before I start taking these I want to check with my HOMEOPATH first. Please keep in touch and let me know if you try the vitamin B complex or B 12 and if it helps you at all. I am happy they help and I have put on weight! Stay healthy!

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    • Posted

      Thank you for y our response. I got another suggestion to take vitamin supplements, so I plan to try the ones you and they have suggested. 

      So far my dilations have lasted only 4-6 months, but maybe my next one will last for a year. 

      I have started working with a dietitian who focuses on natural foods and supplements, so maybe that will help. You will have to let me know if working with your homeopath helps, and I will do the same.

      Thank you again, and good luck with your appointment to explore the POEM and with the ENT.

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  • Posted

    Hi Vicci,

    Sounds like you have been running gauntlet!smile I hope that eases soon...

    I think there are lots of things that can cause Achalasia type symptoms. Some temporary, so it is very difficult. I think Achalasia is only diagnosed when the Oesophagus has been stressed for significant time, and things just give up making an unquestionable diagnosis ... Stress, Anxiety, GERD etc are usual suspects.... Of course you can always take a second opinion. 

    For now I can recommend trying high strength Magnesium capsules. I chew 2 of them every morn. The powder feels soothing too..High strength Vitamin B also. The 2 of these together can have great results, and has helped many on this forum. 

    I also use a Calcium Channel Blocker (Tildiem) prescribed by my doc. After a few weeks I found the increased blood flow really helped...   Plus of course, relaxation and some FUN if poss! (Distractions are great!) 

    Wishing healthy karma your way!

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    • Posted

      Thank you for your response. I plan to try the supplements you suggested. Relaxation is a little harder (mostly because I just don't like to be still for that long), but fun is always an option. 

      Thank you again.

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    • Posted

      Hi neil, I have started on the Bcomplex pill once a day, I take it in the morning. It has definatly helped with my swallowing and the acid reflux! I am going to see my Homeopath in a couple of weeks to see if she can put me on the Magnesium. I heard magnesium is a tricky one so don't want to mess with it. I'm glad it is helping you. I am also going to see and EAR NOSE and THROAT specialist to see what kind of exercises I can do. I will keep you posted! Thanks for telling me about the Magnesium and that it works for you! So glad! 

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    • Posted

      Hi Paula, 

      Thats good news!...smile I haven't heard anything bad re Magnesium, so do share if you think relevant. For me it helps with relaxing smooth muscle. I personally do not have GERD so dont worry about stomach acid. My issues are swallowing and food retention...   

      Re exercises, I adopted a manoeuvre over the years - goes like so-

      - I take a bite/drink

      - chew 

      - before swallowing I raise an arm (i brush through my hair as to not look too weirdbiggrin

      - fill my lungs with a breath and hold for a sec

      - swallow dropping my arm and use my back muscles to keep my back straight and ease things in the right direction (only works standing up for me).

      It has to be gentle/subtle as to not risk forcing anything too much...  

      I did it on my barium swallow, and we watched the LOS open. It was firmly shut without it. Its NOT a cure just something that can help from time to time.... 

      N. 

        

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    • Posted

      I sure will keep you posted Neil. Your manouvers sound similiar to mine as well. I had a dietician where I work tell me to make sure my shoulders are arched back and tilt my head slightly forward after I drink water, this helps too getting the food down! So can I ask how long you have had this Disease? and also have you had any surgery to try to correct it? Any dilations? I know you've had the barium swallow, manometry too? ( I'm still freaking out about maybe having to get that one : (   wink. I get that it is a life long thing and people that dont have a clue what it is don't understand. that is frustrating too! Thanks for sharing, anything else you have to offer I would love to hear. Also, if you don't mind me asking, what is your age and where are you living?

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    • Posted

      Hi Paula,

      Happy to share...I am a humble 47 in Salisbury UK smile My history with ref to your question: I was 'diagnosed' (I struggle with that term a bit really for A as there is no biological test) about 17 years ago after about a year of suffering the classic symptoms inc aspiration at night and regurgitation after food - I could barely eat for a year... At the time PPIs were not quite on the streets so acid was a big problem for those that had surgery. At that time the forums were a pretty negative place. Not so much the case now thankfully due to PPI acid control... So with the hand of my GP we decided I could try alternative treatments for 6months and then divert later if required.. I tried a therapy called Bowen that had some good results- and led me to be able to swallow with assistance of said manoeuvre. It was (and still is) enough to get by.. I ended up just soldiering on with basic advice from my gp to avoid acidy stuffs to protect my O. I also recently started to use prescribed calcium channel blockers (lowest dose) which seem to really help.... I dont suffer from acid and rarely coughing, but stretching of the Oesophagus is of course a worry... I will never know for sure as I never had regular bariums early on  but I think my O was stretched pretty early, and is still over sized. I had an Endoscopy, and Barium earlier this year..Dr recommended the usual A treatments - botox, dilation, surgery etc which I am still considering (although maybe in denialsmile. I have had none of these to date.. Problem is that is more or less what they said 17 years ago, so a tough one for me since I have got here without it... I know others that are untreated; I guess the main symptom driving that decision not to have treatment is our ability to swallow; if food wasn't going down somehow, I am sure we would have all had treatment by now! .. Personally, I feel my main concern is lack of drainage. I know for sure food is always there. I try to mitigate risks of irritation by trying to keep to ph7 ish foods, and keep plenty of fresh water going through..I also chew Gaviscon tabs, as they apparently neutralise chemicals that may form in there... I am yet to find a detailed professional account on risks from food irritation Vs acid irritation - seems a very grey area but my gp was happy to support it under her care... 

      So on we go! smile ... I try and stay positive, and in some ways am thankful as I know there are worse faits than A (although hard to see sometimes) ...

      Wishing you healthy karma...

      PS - where are you based etc? 

      PPS - I found the Manometry fine! Much better than an endoscopy... You will be fine...smile 

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    • Posted

      Paula: I second Neil's statement about the manometry. The idea of it creeped me out, and in fact I pulled the tube out the first two times they tried it. I think the difference for the third time was they didn't use a spray to numb my nose and throat, but instead used a numbing gel. So if you do have to have the manometry test, ask them to use the gel. Other things that helped me during the test was they turned the lights down and really talked me through everything they were doing. 

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    • Posted

      OMG Neil. your story sounds almost the same as mine. I am 51 and live in Niagara Falls, Canada. The problem I have with having to get that stupid manometry test done is I already KNOW I have Achalasia so why do I have to have it done? I had the Barium swallows and endoscopies done too! I am trying to avoid having the surgery so am trying to do everything in my power to heal myself  or as close to it as I can get. I've been struggling with my swallowing for about 5 years I'd say. and acid reflux as long as I can remember. Although looking back, I always have had a cough. Anyways, I feel like you where as if I can spend the rest of my life swallowing pretty well then no surgery please. Since I've been taking the B complex, I've noticed the acid reflux has disapated : ) and no waking up in the middle of the night with it. Well the odd time when I eat too late and things that I am not supposed to be eating : ( I find drinking ginger ale helps too! and YES YES YES for the GAVISCON! best thing ever invented! I like the chewables and before I go to bed I take a swig of the liquid! works great! What kinds of food do you eat then? 

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    • Posted

      Hi Paula,

      Was waiting for your comment to be 'moderated' seems stuck... whatever!:0 

      Re stretching I was refering to natural stretching that happens over time. I understand Surgery or dialation usually reduce this particualr risk.... I have had no physical treatment... Still might! Its just not happened for me for some reason. Came close a few times... 

      May there be blueskies ahead!smile 

      N. smile

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    • Posted

      Hi againsmile

      Niagara Falls. V nice, smile an inspiring place I bet... I honestly didn't find the manometry that bad, but totally get your frustrations. Not sure what to advise really.. Follow your gut feeling.... 

      I dont think I have ever suffered from stomach acid. I have suffered the usual painful A spasms... I think (a totally unqualified opinion) there may be various causes of A - Damage to nerves from repeated stomach acid (GERD); damage to nerves by own immune system, or possible virus (measles / chicken pox etc is sometimes suggested)... So I think diet benefits will vary hugely too. What fun!smile 

      If stomach acid is the suspected root cause, then there are lots of GERD or Barrett's O diets out there. I know of several people (some friends) that have cured GERD (not A) through regular cardio exercise - jogging-cycling-rowing (indoor!smile... I believe in that wholly now!. 

      For the other possible A causes it gets more difficult. I dont suffer stomach acid, but do try to mitigate food itration. So I avoid all acidy food. Vinegar, wine ( not beer!smile  tomato pastes etc, and use gaviscon tabs to help stop foods reacting down there. That was my docs advice... I eat bannans every morn as these seem to start the day off well, then just usual stuff (avoiding acid). I allow myself to get hungry which usually helps with a meal.  I drink lots of warm water too-I find it relaxes things. I try and eat dinner before 7:30pm ... last thing before bed, I take a mouthful of chocolate or something dry, and then drink down some just opened fizzy water to quench the thirst I created. Seems to help clear things through a bit...

      Warmest,

      Neil

      Ps -  I eat greens where I can, and freeze dried strawberries (in morn). These are meant to keep the O lining healthy.. 

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  • Posted

    I know exacly what your you g through. For me it's be the same but I had no second opinion and told a hellors myotomy is out of the question to be honest I think he lied as he sent me to.e with my sphincter muscle completely closed never gave me a barium until I was rushed in 6 days later with severe dehydration.

    Some of these Doctor's are not all as they are cracked up to be an many bluff it. I had a endoscopy and was told by a nurse I had complications which the surgeon never told me and he also said my Esophugus was to badly scarred. He's the only surgeon in the hospital to do this this so how can I go and get a second opinion ? South Wales Newport this was. How I never did I'll never know. I never want to go back there as the infections I got after was bad and I still get severe pains in my kidneys.

    I have no trust in them and the endoscopy camara was huge outdated as thick as two large fingers the new ones are very thin and not so uncomfortable.

    So for going on but Achalasia is a awful disease but much worse with outdated equipment and lazy Docters.

    All the best in future.

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  • Posted

    Hi vicci

    Don’t take stress its very easy to diagnose.

    Take Gastroenterologist opinion and ask about Upper GI manometry and VFSE Tests

    these are gold standard tests to confirm Achalasia or Not

    ·         Endoscopy of Upper GI

    ·         Esophageal manometry  measure real time lower esophageal sphincter (LES) pressure and reveals  whether patient have Achalasia or not

    ·         Video Fluoroscopic Swallowing Exam (VFSE) real-time x-ray called fluoroscopy to evaluate a patient’s ability to swallow safely and effectively

    ·   Study of IW-1701 A Stimulator of Soluble Guanylate Cyclase (sGC) in Patients With Type I or II Achalasia

    GERD and Achalasia both are different diseases but first line symptoms are almost similar and causative factors are different

    GERD often due to Lax of lower esophageal sphincter (LES) and does not close completely and remain open few millimeter  to cm and its causes acid reflux from stomach contains to esophageal path.

    Where Achalasia is esophageal motility disorders which often cause neuromuscular disorders and its progressive (narrowing LES) and LES does not open sufficiently to pass intake from esophagus to stomach and intake (liquids and solid) remain longer time in esophagus due to reduced Esophageal peristaltic moments or very slow and low magnitude or sometimes absent and caused chest pain (diffused-type), Chest pain reduced after vomiting or regurgitation, wt loss

    These symptoms takes many months to years to develop Achalasia clinical symptoms. 

    If many pneumatic dilatation are failed, Heller myotomy with fundoplication or per oral endoscopic myotomy (POEM) are better options for life rest of life . Its depend on your decision maker GI surgeon not a forum member

    All the best, cheers

     

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