Problems swallowing, GP believes it is anxiety but...

Hi Melissa, how are you doing?

My name is Iole and I suffer of Acalasia since 8 years. Well 8 years since my illness is got a name, but to be honest I'm been suffering of chocking on the hard and dry food ( like bread, cookies, crackers, seeds, nuts, sandwiches, cake sponge, sandwishes, ect...) since 20 years, if I can remember.

Your symptoms in good part are typical from Acalasia suffers, like stacking food, bad swallowing, food back to the mouth, chest infection, hardness at the top of the oesophagus, frustration to be unable to push the food inside stomach, metal taste in the mouth, anxiety.

Actually, anxiety, rising heart beating, nausea, dizziness, getting worse the problem because are the result of the mess you do when you straggle and force the food to go down by oesophagus.

I will explain you : Probably you don't chew the food enough and you swallow it down too quickly. With Acalasia you can not do it, because your Peristalsis (it is a radially symmetrical contraction and relaxation of muscles which propagates in a wave down a muscular tube, the oesophagus so ..) does not coordinate any more. The nerves along oesophagus wall get mad and give hardness to the tissues,

with 7 bad results : Food boomerang effect, inflammation and bleeding along the walls of the oesophagus (metal taste in the mouth), further oesophagus wall deforming, pain in the chest (heartburning), the formation of bags at the base of the oesophagus, further deformation of the sphincter ( the valve which regulate the passage of food in the stomach) because it does not close completely any more, and it does not open at the right time to leave the food go through into the stomach ( that's why it come back up), and the least but not the last : chest infection.

The chest infection, hoarseness, and all the throat problems are because the opened sphincter let

some stomach acid come back up together with the food, so the acid burn the oesophagus wall, the throat wall, the larynx, the mouth wall and soon will start with gums too. In this movement back just because

your peristalsis does not coordinate the movements more properly, leave some stomach acid

and small pieces of food end up in the channels of breathing, with the result of igniting and develop chest infection, which never get better because foreign bodies get into the channels at every meal.

Because of this continue invasion your immune system is probably very stressed, and the skin

itchiness could be a the result of that.

On one side your GP is right to say that your anxiety amplifies the problem but this is not the source of the problem. Stress, hasty and disorderly life, meals not well distributed along time (you should do very light meals with intervals of 3 hours at the most and follow a specific diet that reduces the amount of acid and reduce the permanence of the food in the stomach at the minimum) usually accelerate Acalasia develop.

You should make the last evening meal minimum 3 hours before going to bed!!

Abolish all substances from the diet that accelerates the metabolism and stress the nervous system.

Usually these foods produce more acidity in the body and into the stomach. So eliminate from your diet:

coffee, black tea and red, alcohol, beer, citrus and acid fruits, fried foods, sugars, sweets, saturated fats,

sauces and spices.

Instead drink green tea which helps to soothe inflammation in the oesophagus and reduce the risk of cancer in the oesophagus and stomach, but always drink it at mild temperature, never hot, never cold, (this will relax the oesophagus wall a little ), and with little sip, slowly. As well all the other food which probably you already need to blend ( like baby food ) and make very liquid. When swallow the food keep your back and neck straight and sit on the chair at 90 degrees angle, this will help to stretch the lowest par of the

oesophagus and the sphincter.

Do some deep breath before start to put food in the mouth, keep calm and relax while you eating, and swallow with calm. should do it slowly and without rash, not get nervous, focus on the food which is going down and follow it mentally so you are able to realize what you are doing at the moment.

This should give the sphincter enough time to coordinate the opening and closing by the thrust of

the food.

Into the while do it all the test and specialistic visits, you will need to decide which it would be your better next step. It could be a simple dilatation or maybe you will already need a Heller's myotomy, all depend from how much the oesophagus is strangled on the bottom.

If you can please help your self with yoga lessons and/or meditation. It helps to control anxiety a lot, especially in the worst moment when your heart beat rate crazy up and you feel that one could be your last

breath of life. Believe me, I know what I'm talking about. I know what you are living now because

unfortunately I did before you.

Even after myotomy I needed 4 long years to get rid of the pain and troubles at the meal time,

with patience and calm.

I now also stopped to use pain killers and antacids which is the greatest result ( don't feel slave of them any more!!)

I use to sleep on a wedge to prevent night time reflux. I follow a well balanced diet which give strength to my immune system, and reduces inflammation risks in the stomach and along oesophagus too.

These are my tips, I wish they will help you too, for a better life.

Don't give up and good luck!

Iole

Lole,

I am pretty overwhelmed by your reply, for the first time someone actually understands every single symptom I have regards this swallowing problem, the blender and so forth, I thought, wow, you seem to have it in a nutshell.

Thank you for your advice and everyone else, I am going to my GP with this information as they are still convinced it is all in my head!

Re the Barium swallow, on the paperwork it said I would have to drink 2-3 cups of the mixture, however, when I went in I did not even drink half a small plastic cup of the stuff, I was in and out in around 3 minutes and they sent the results through as normal, fasting for 12 hours prior to going for this and the endoscopy they would never see any blocked food or other problems.

I am going for a second opinion on this as is making me very ill.

Bless you.

Melissa xx

It does sound like you need to see a gastroenterologist. The third test for diagnosing achalasia would be a manometry test.There are other motility problems as well as achalasia, but you will need to see a good consultant to clarify a diagnosis.

This is easier said than done, but if you can try and reduce your anxiety and tension level, it will help to clarify the underlying cause that tension may, or may not, be exacerbating.

Today 1st April I had an appointment with a Dr Hussain of Kettering Hospital, he was not there and I had to see- a student doctor? I told him of my problems and advised Achalasia had been mentioned, he dismissed it and said, this would show up on the barium swallow and your results came back fine.

Just to re-iterate that I was told I would have to drink 2-3 cups of the liquid, not just 1-2 inches as I did in my barium swallow. I told him I still have a terrible problem swallowing- I am up at 3am tonight because I kept burping and reflux, I am having a cup of tea and it keeps choking me- like I cannot breathe and feel like my windpipe is blocked.

The other doctor gave me a prescription to give to my doctor for Don- Peridon- Which I tried 3 months or so ago and did not make any difference.

Please please, someone help or suggest anything, I have lost 7.25 stones in under a year, I am still on a diet of very runny porridge and soup as nothing else shall go down, this in itself is the cause of my anxiety and they say the anxiety is the cause of my swallowing.. what utter!!!!

I just want to eat, I want to drink a cup of tea without feeling like I am going to choke to death!!

I would be happy just to have some from of confirmed diagnosis whatever my problem is, it is causing me so much anxiety and despair, I honestly felt like killing myself today after that, I have been waiting for a month for this appointment just to be fobbed off by a minor in a white coat.

I am going back to my GP this morning and demanding an appointment at Addenbrookes.

I think you are right in that it is a bit of a vicious circle. Regardless of whether it is some form of achalasia or motility disorder or not, tension and anxiety will always make it worse, and not having a diagnosis will make you more anxious. That is perfectly natural. There is a spectrum of swallowing disorders that have some element of anxiety somewhere on the scale and it is probably a question of where you are on that scale rather than anxiety not being relevant at all. They may do all sorts of tests that you do not think relevant, but there is invariably a system and logic in what they do.

There probably are other medications than domperidone that could be tried, but establishing a proper diagnosis in the first place really is important.

I know that you fell 'fobbed off' by a junior doctor, but it would be goof if you could persevere with them to establish exactly what they have concluded from their tests. Taking somebody with you and writing down the questions you have in advance might make the process easier? Where exactly do you feel that your system is blocked? High up near your throat, or down nearer your diaphragm?

I also understand your anxiety about losing weight; you might consider asking for high nutrition drinks, depending on where you are with your overall weight at the moment.You will not want to read this, but it is surprising how much weight the body can lose and still function OK - it is the input of nutrition that counts and trying to counteract the cause of the weight loss if possible. You might also think about your posture when you are trying to eat/drink so that you can be as relaxed as possible. And try 'grazing' so that mealtimes do not assume a heavy significance?

Hi melissa

have you heard of fundoplication surgery as well as lpr (laryngeal pharyngeal reflux) ? I had the surgery last year after years of sudden and random swallowing issues. It was brutal not knowing what i had for years until an ent looked down my throat and recommended the procedure. He diagnosed me w lpr which led to vocal chord dysfunction aka vcd. People dont realize vocal chords are necessary for swallowing and breathing, not just speaking.

it may not match completely with your symptoms ...like your allergies, but this is just in case it can help you or anyone else reading this. Google these conditions and you may find some similarities

thanks, paul

go to your GP, insist on having an endoscopy, MRI and CT scans.  My father was experiencing a persistent cough back in January 2013. This then developed into swallowing problems, sore throat and the feeling of a lump in the throat, he was eventually unable to eat solid food, was coughing up blood, had persistent pain in his jaw and left side of the head, he lost three stone in weight, all this time he was only given gastro-intestinal medication, anti-biotics and mouthwash.  In July 2014 he was finally admitted to EN&T where he was diagnosed with Laryngeal cancer.

Look up achalasia