New here! Need help with possible Achalasia Diagnosis!! So stressed, can't eat or sleep!!

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Help!! Please! I'm seriously suffering!

This all started April 6th when I was eating something and noticed my throats felt constricted, I thought I was having a food allergy. I had my epi pen handy but didn't have to use it. I gave it some time but it never really went away. Three days later I went to the ER, I was told I had pharyngitis received steroid shot and tordal. Started feeling better instantly. Three days later I got the stomach flu and vomited very violently for 6-8 hours. Couldn't start taking the steroids again for two days. Sore throat started coming back. I went back to the ER (I had to go to ER bc we had just moved and didn't have a PCP) told DR sore throat would not go away and what had happened with the flu and steroids. She just prescribed some pain meds to help get me through which I never took and she told me I'd have to wait it out. So it did seem to get better but then occasionally I'd get this pain in my throat. And also I noticed I'd get really out of breath just reading a book to my son or walking from one end of our big back yard to the other end. I have constant heart palpitations which I've had checked twice now and dr says I'm fine. I have been having horrible chest pain this last week or so. Maybe just anxiety. Anyway, here is where things get worse. So last Friday throats hurting pretty bad I go see a NP at the little clinic in Kroger. She prescribes an antibiotic since nothing else has worked yet (forgot to mention I've been tested for mono and strep both negative) take it Friday and I'm fine. Take it Saturday morning without even thinking and all I had eaten was some cantaloupe and drank some coffee. I got extreme diarrhea and almost passed out. Went back to ER they never even gave me fluids.. I told them about throat and all the issues I had been having. Dr laughed at me and said he would do a CT of throat just to make sure I was ok. CT came back clear. He never even came back in the room. He had nurse give me a script for a 12 day taper of steroids. I started them last saturday. That day I felt ok and slept fine. The following day (Sunday) is when i started feeling a little weird and off. Throat never Really for better. Sunday night I couldn't sleep at all. Monday I could barely get off couch.. just staring at wall, can barely move, or eat, called and made appt with ENT for Wednesday (surprisingly). Tuesday I felt just as bad, can't eat, can't sleep, can't move. Go for appt Wednesday morning.. blood pressure through the roof. Tell them all that's been going on they look in my throat and nose and order a thyroid ultrasound and swallow study. By Wednesday evening throat hurts so bad I can hardly move I demand my husband take me to ER once again. They check my blood levels and do ekg. Everything looks fine even though heart rate elevated. Thyroid hormone looks fine. Dr does tell me to stop taking steroid that he never would've prescribed me that.

It's not helping so stop taking it. So I was happy about that. Gives me meds to help me sleep. I slept pretty well and thought Thursday would be better but I'm still feeling so sluggish and tired and theist huets. Stay in bed all day.

I know I'm rambling on and on but there is so much to story!

I forgot to mention at this point the throat pain has moved down to where it feels like my thyroid is located. It was up higher in neck. And now I'm noticing I'm kind of choking on food a little when I eat. And I can feel something back there that seems to get stuck.

So now it's Friday.. I didn't sleep terrible but not great either. Throat pain is awful. It's like a constricting feeling around my neck. And I'll get random shooting pains in my neck. Still having chest pain too. I have thyroid ultrasound they say that looks fine. I have swallow study therapist tells me he can see where food is catching in my esophagus and flap is not closing. Then he can see as good goes further down it gets stuck too. Then when I take a drink of soda water I can get food down.

Friday night, I can't sleep, I can't get out of bed, I'm having horrible anxiety. I get up at 2am and take a shower. By 330 I'm at the ER AGAIN!! Bc I can't take this anymore!! Dr on duty last night says he thinks I have something called achalasia. I have never heard of it! He fills me in. Sounds exactly like the issues I'm having. He has me drink something that numbs my mouth to help with pain and gives me a muscle relaxer. I still don't sleep great bc I have a three year old that gets up at 730am.

So here I am now. Throat still hurts, I still can't eat much, I am feeling better since coming off steroids though, but lacking energy from no sleep and not eating. I am praying to be able to sleep tonight!! I am scared my throat is going to close up! So I have anxiety and can't go to bed!! Please someone help! Tell me your thoughts.. didntsking that 12 day taper of steroids do this to my esophagus? Bc that's what I'i e read somewhere.

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  • Posted

    Oh my goodness you have really been through the mill, haven’t you?!

    The first thing I want to say is that just because a Dr suggested you may have achalasia and you feel you match the symptoms, does not mean that you have. In fact, there are many symptoms you also describe that do not sound as though they are related to achalasia. This is a very rare condition that tends to linger for several years and is eventually diagnosed via Manometry testing, which is the holy grail of diagnosis when it comes to achalasia.

    So, what is going on then?! Firstly the chest pain and throat/chest tightness could now be due to anxiety and panic perhaps? You have clearly been very poorly and have some kind of physiological problem or virus perhaps that has affected your throat. The ‘sticking in your throat’ due to constriction may be inflammatory is origin and not due to achalasia once again. True achalasia is when the oesophagus is paralysed not swollen.  

    I personally feel it is time to see your Doctor and ask for as many tests as he sees fit in pursuit of the answers to what is going on here. In the meantime, try to practise deep breathing to calm yourself if you feel chest pain etc and see if that helps.

    I wish you all the best x   

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    • Posted

      Very good advice. Along with my personal, STAY AWAY FROM THE COMPUTER and google searches until you have an accurate and complete diagnosis.  
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  • Posted

    Hi, sorry to hear what you've gone through and your anxiety is understandable. There are lot of forums on achalasia that you'll find useful, please look for them. At the mean time, I'm confused with 2 things: one is how your symptoms started with a sore throut, and it keeps hurtinh, this I've hardly seen reading other people's experience with achalasia, and secondly, you said a swallowing study was done. Was that a Brrium swallowing test? If so the doctor should be able to tell, even in a very mild case. As you might have told or read by now that manometry and egd are the two other tests after the Barium swallowing test to confirm if you really have achalasia or suffering from some other conditions. So hope you can make an appointment earlier with your GI to get it confirmed. Although it's tough to accept it, how out of blue we just get sick suddenly, but we need to face it if we have and try to find a best treatment available. At least I believe that you're on the right place, as there're a lot of good forums on achalasia here and really nice fellow patients, families, researchers and caregivers who can and willing to help out with any questions and concerns we've. I do hope you find the answer to your symptoms🍀

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  • Posted

    Hello, my dear, I am sorry you are suffering like this, especially being in charge of the care of a little child.  Did you explain to the ER physician who suggested you might have achalasia that you feel short of breath?  From my reading, it seems clear that, while chest pain is quite common with achalasia, it can happen much more rarely that there is upper airway obstruction from compression of the trachea due to dilation of the esophagus [too large] as a result of the disorder.  That can be identified by CT imaging.  Another name for the trachea is the "windpipe".

    ?Is your shortness of breath a kind of choking sensation?  If so, you need to be seen again ASAP when it happens again as it can be dangerous.  That physician who suggested achalasia doesn't know for sure you have the disorder because you haven't yet had the tests that are needed for confirmation.  I certainly do not know that you have achalasia.  But I am very concerned about shortness of breath [with chest pain] in a young person.  That is not at all normal.  However, there is a benign problem that occurs in people suffering from acute anxiety and that is a feeling of being unable to catch ones breath.  It is not exactly a choking feeling but more like the lungs will not hold air.  It means that the person is over-breathing or hyper ventilating and a good cure for that feeling is to breath into a paper bag or some bag that traps air.  You know best what your shortness of breath feels like and could describe that here.  Anyway, if it feels like the choking sensation, you could tell the doctor about compression of the trachea you read about and see what he or she says to that.

     

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  • Posted

    Carol is right there are many things it could be. You could also have Jackhammer Esophagus. You need to get some acid ph testing done and a possible swallow study. Have you noticed any pain in your chest ? Achalasia is 1 in 100,000 people so it's pretty rare. You need to do some research on doctors in your area that do possible POEM or other procedures that deal with the esophagus. Do you have reflux? Try to calm down I don't believe your throats is going to close up and stressing out is not going to help no matter what's wrong. I know you were scared but the ER doctors aren't going to know anything about Achalasia. Try to find a good group of gastro doctors that will take their time to investigate and make you feel better. If you go somewhere and the first thing they say is you need surgery before doing any tests , run as fast as you can. As many questions, write them down. Keep a diary of your condition, foods you eat , reactions. I hope you get some help and feel better soon. Any questions feel free to message me.

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  • Posted

    Thank you all for you replies.

    I am just trying to cope until I can get in to see GI Doctor. This is very hard to deal with. And I'm very scared.

    I have a three year old son, my husband and I just married last summer, and I'm 33 years old. I feel like I'm 99 right now. I am hardly up doing much for long and I have to lay back down. Because number 1 I have hardly any energy bc I can't eat much and number 2 if I get going and doing too much it's like my throat gets inflamed or flares up.

    Just trying to cope and PRAYING that I can be seen very soon!!

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    • Posted

      2AAR20

      I'm so sorry you are having such a difficult time. Alchalasia and its symptoms can indeed stop you in your tracks. I too feel tired a lot but instead of me loosing weight I'm gaining. I went from 165 to 184 in no time. The reason being because I've had six esophageal dilatations over a 15 year period when I was recently told I shouldn't have ever had one. My esophagus stretches to the point where it has crested a large reservoir or second stomach. Food want go through my LES into my stomach for up to two days. So, when I eat I keep

      eating. My stomach is never full at any given time, therefore my brain doesn't tecieve that signal that I'm full.

      I have stage 3 spastic Alchalasia which the surgeons I've seen have told me that it is the most difficult to treat my main symptom nocturnal aspiration. Which often leads me to episodes of aspiration pneumonia. I'm battling a case of it right now in fact. But they let me come home.

      I work as a Cardio/Thoracic RN and had to leave due to disability from this and what steroids have done to my entire musculoskeletal system.

      Stay positive and know that there is treatment out there for you. You just have to be well versed so that you can be part of the decision making process. And, like I say all the time, please get a second, even a third opinion from both a GI specialist and surgeon alike. Just because one surgeon excels in, and has a good reputation for doing a particular procedure doesn't necessarily mean that the one he does is best for you. I've seen 3 surgeons and none of them were on the same page. I'm now going to see another in Baltimore. I'm having to fly, but it will be worth it.

      Stay positive and focused!

      Regards,

      DJRN

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  • Posted

    Hi! See a good GI specialist who specializes in Alchalasia. If you're in a small town, you may have to make the drive or fly as I did. He/she will probably order a barium speech test and a regular barium swallow. Since you have a sore throats, perhaps an acid Ph test. Most likely you will also have an endoscopy. Those tests along with the symptoms you present with should give you an accurate diagnosis. You'll learn soon enough how treatment differs from patient to patient. Even if you have the same ones. Read up on the different types of Fundoplications that they do, a Heller Myotomy or POEM. Those are invasive procedures/surgery. But there are many less invasive procedures your Dr. may recommend for you. I.e.: pneumatic dilatation, Botox injections etc. They may even try you on nitrates, calcium Chanel blockers etc.

    Try not to overwhelm yourself with too much info at first. You may want to start out familiarizeimg yourself with this and other sites like it and google Alchalasia and just take your time. I feel sure that this will all come together for you and you will receive the best of care. Again, just know your options and by all means get a second, even third opinion. Should a surgeon tell you that you are not a candidate for anything but surgery, that would be one good example for getting a second opinion.

    I wish you well!

    DJRN

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  • Posted

    The steroids can cause a lot of what you are describing, espcially the anxiety, heart palpatations and they do a number on your throat and stomach and that is why they tell you to take acid reducing OTC medications with it.  They may not have mentioned that to you.  As others have said the gold standard is the mammomtry test.  The barium swallow alone is not really ideal for achalasia. Did a barium swallow once and everything went through fine.  

    Why would the swallowing test therapist tell you this information and not give you any kind of follow up information or referal???  Your epigliotis (the flap) is part of pharynx or throat and then below that is the esophagus.  Problems with pharynx can preceed or happen after achalsia but they are two different problems. 

    I have two GI doctors. One GI who specializes in swallowing disease and one who specializes in achalasia.They work together but both will tell you that both fields need such specialized training that it's hard to be in expert in both.  

    Take a breath, step away from the computer and make an appt. with a family doctor and go from there.  

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    • Posted

      I have stage 3 spastic Alchalasia that is the most difficult to treat. Now they think that I'm having trouble with UES. I tend to aspirate salvia during the day, and get choked severely on food/fluids in my esophagus.

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    • Posted

      I am sorry to hear this.  My post was to AARD20.  I don't know which stages are harder to treat and I am sorry about your aspiration.  Several times I have had my morning meds end up being aspirated. I am on purreed food and still cause problems going down. The only thing I KNOW about the UES is when it has high pressue like the LES and doesn't open.  Other than that I am not very familiar.   I just know in my case I was diagnosed first wth the dysphagia,(I double swallow not conciously and the bolus doesn't get properly pushed to the back by my tongue because it bowls out and that's not what it is suppose to do  and there are two types and I have both, they tried to blame on my MS which I disagree that I have, then I was diagnosed with achalasia and I know they go hand in hand and I see Dr. Silver in Coral Springs and Dr. Richter in Tampa. As they both have pointed along with the Mayo in Jacksonville, Miami University Hospital/Miller School of Medicine and the Cleveland clinic. these are two seperate disease and that's what I was e  replying to AAR20 and wondering why someone would give her the swallowing study information and not give a follow up or referal. See I am the type of personal who has very little faith in the medical community (AAR20's story proves my point) and instead of trying to match symptons on line to a disease I think should wait for a complete diagnosis before googling or searching because she will drive herself nuts.

      Again I feel for you and your new problems. I am guessing you recently had some problems or a doctors visit, which sucks.  I know you said on another discussion that you have to travel out of state if you ever decided on surgery. I am amazed that "they" have not pushed you for it because with 15 years of disease and the constant aspiration and pneumonia I imagine your achalasia has progressed a lot. 

       

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    • Posted

      Ty hun. I'm just curious what all the aspiration has done to my pulmonary status. I think I'm going to have a bronchoscope. If I sleep sitting up I don't aspirate as much.

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  • Posted

    I read your post carefully and took a few mental notes. As an RN it would have been nice if I was able to take a history from you. Oh, you indeed have one but the questions I'd ask weren't on there. As a nurse and one with stage 3 spastic Alchalasia, your symptoms are all over the place and still don't tell me whole lot. First off I'd say that I don't believe that you have any type of Alchalasia. You would need a doctor and a manometry amongst other tests to tell you that for sure. I certainly can't. I can just give my opinion to what I think. It sounds as though you are a psychological mess. And I don't mean that in a bad way. It just sounds like some of what you described may be due to severe anxiety and you reading more into something that's very benign. Your sore throats could be the result of countless things. Some people with Alchalasia have sore throats due to acid reflux and acid that's literally burning sensitive highly vascularized delicate tissue. You didn't mention a problem with heart burn I don't believe. For the most, everyone has trouble with food going down and feels that it at times gets stuck. That's a natural physiological response for all. Sometimes one may eat hurriedly, don't chew their food well enough or consume enough liquids such as water, juice or milk with their meals. You sound as though you are very high strung with a type A personality. I am as well. And it also sounds like you might be too involved or worried about your health more than an average person would. I'd try to lessen your self diagnosis and make an appointment with an ENT to figure out why you continue to have a sore throats. I could list dozens of things that can cause one but you wouldn't be any better off if I did. Perhaps you have some post nasal drip that's causing your throats to remain sore. I'd try to slow down, take a few deep breaths and try not to diagnose yourself.

    I hope that you find an answer to your problems and concerns but I don't think that they are related to Alchalasia. Good-Luck. 😊

    DJRN

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    • Posted

      Thank you for your response! I took some time off from here and googling conditions I may have. I have my anxiety with all of this more under control.. although I am still having anxiety some bc I do not know yet what is going on.

      So, I am still having trouble swallowing, I can get things down but have to take small bites and chew very well. I have to eat small portions bc it starts to feel as if the food is backing up in my Throat. I burp and belch a lot after eating anything even if it's small. And that seems to give me some relief. If I swallow my salvia I can hear it gurgle in my Throat. That is not all the time but a lot. I have spasms in my neck occasionally. Let's see what else... trying to think of all symptoms. Oh I have some chest pain here and there.

      I have had a barium swallow done and apparently that was normal. I am having manometry test done tomorrow morning. Hoping to get some answer from this. ENT appointment next week and GI appointment the week after. Also last Monday I had the scope through the nose at ENT office and they said they only thing they saw was pooling of post nasal drip in my Throat. Which it wasn't post nasal drip pooling it was the lidocaine they sprayed in my nose to numb it bc I haven't been having any allergy symptoms no runny nose, nothing. Oh and lastly I just thought my ears crack and pop so much when I swallow.

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    • Posted

      You certainly have been through the mill when it comes to tests!  The manometry should should rule out or confirm achalasia.  As to your ears cracking and popping when you swallow--that is definitely not related to how well your food does or does not go down.  Your eustachian tube, which connects the throat to the middle ear, may be inflamed.  That could be cured by the use of steroid nasal sprays for about six weeks. Alternatively, a  temporomandibular joint or jaw problem can create noises that seems to you to be coming  from your ears when you swallow.  You have no doubt been very tense and can have been clenching your jaws unconsciously.  Don't worry about that popping at all.  It is the least of your worries.  Good luck with your test.  Let us know the outcome, please.

       

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    • Posted

      Thank you Janeeyre.

      I am just hoping for answers at this point bc no one can tell me anything so far.

      I did have another CT last week just to make sure my airway is not blocked and that DR said my airway is wide open and he doesn't see a thing on CT.

      Just trying to stay positive and hopeful here. Thank you everyone for your help!

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    • Posted

      Sounds like you've had a battery of tests. Some of the symptoms you are experiencing sound like it may be of the esophagus, but some throw me off. Especially the symptoms with your ears etc. I'm not convinced that this sounds like Alchalasia. If your barium swallow was normal, that makes me think even more that it's not your LES. A barium isn't a definitive test for Alchalasia, but is a very useful tool in ruling things out. If you had a hypertensive LES most likely the barium swallow would have picked that up. I would see both a GI Doc and a ENT. Again, you're not having all classic symptoms for Alchalasia. Although it could be the beginning of it.

      DJRN

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    • Posted

      There is a chance that you have a stricture in your esophagus. But again, from what you've described, it doesn't sound to me that your LES is comprised. Keep us updated. Try to relax.

      DJRN

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