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Achalasia

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who has Achalasia ? and pains do you get.

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  • val0406
    val0406

    Posted

    I am from the US. I was diagnosed with acalasia about 20 years ago. I was about 20 years old. They had a hard time diagnosing me bc at the time it was very rare in young people. More common in seniors. They put me on procardia, which is a heart med, but it helped relax the smooth muscle of the esophagus. It eventually got worse. 11 years ago I had surgery. I had heeler's myotony. They removed my sphincter from my esophagus to my stomach. They then wrapped my stomach around the esophagus. I was decent for about 8 years. I would go in every year or 2 for a dilation of my esophagus. It wasn't 100%, I still needed a lot of water to help get my food down. Sometimes I would have to stand to get my food down. Over the last 4 years it's getting really bad again. Very very hard for me to get food down. I vomit at least 3-4 a week. It's not actually vomit because its the food coming up from my esophagus not my stomach. The food just won't go down so it comes back up. I had an endoscopy in oct 2013. The dr used Botox on my esophagus. It didn't work. The dr doesn't want to dilate me any more. He is worried about scar tissue and tearing my esophagus. He referred me back to surgeon who did my first surgery. I am going this week for a consult. I really have no other option. I am in a lot of discomfort.

    Anyone have any info that can help me? Anyone else having the same problems? I love to eat but the thought of eating makes me "sick"

    • Mish221
      Mish221 val0406

      Posted

      I had the Heller 10 years ago and still get food stuck from time to time. I take 10mg of nifedipine. It usually helps a lot!
  • amy56547
    amy56547 Guest

    Posted

    Hi. I see that these other posts are from over a year ago so I hope that there are others or the same people out there to respond.  I've had esophageal spasms for many years and was recently. Diagnosed with Achalasia. I'm considering the Hellor Myotemy but am mostly concerned about the spasms.  My biggest fear is that they will get worse, not better. Any suggestions?
    • Mish221
      Mish221 amy56547

      Posted

      Hi Amy, I had the Heller 10 years ago and it was a miracle to me because I could finally swallow again. Before it I couldn't even swallow WATER! I still have food get stuck and sometimes have to expel it from my e but that isnt very often. The downside is, it did nothing to help my chest pain. The only relief I get is drinking water or taking my Nifedipine 10mg. If the pain is really bad I puncture the capsule and squeeze it under my tongue. I hope you consider the surgery as it will help your quality of life and you will finally be able to eat a meal without repeated trips to the bathroom for relief. I wish I had better news about the chest pain though. Good luck!
  • pauline1981
    pauline1981 Guest

    Posted

    Hi there, I'm glad to see there is a recent post. I was diagnosed with achalsia in Feb 2005 and by July had the Heller myotomy. Things were going well but slowly, I've been bringing up my food. I've been getting pretty chest pains too, I'm currently having an episode now and it's lasting 3 hours and counting. I don't want another operation but I want this pain gone. I don't know what medication I can take. The pain is unreal, sometimes it goes up to me right jaw.

    Because of my work I don't get to eat dinner till late- and since I have to end up eating quickly, is say I end up regurgitating half of it. And if I eat late at night I end up waking up with chest pains. When I am in such agony the thought of eating fills me with dread :-(

    • Mish221
      Mish221 pauline1981

      Posted

      Hi Pauline, I too had my Heller Myotomy in 2005. It Helped with swallowing but I roo suffer the pain that radiates around my chest and into my jaw. It mimics a heart attack and I think if I were actually HAVING a heart attack I might not know the difference. I usually take my 10mg of Nifedipine when it gets bad aND water doesn't work. I haven't been seeing a GI because, to be honest, I find that they just don't know enough about achalasia to be any help with the pain. I still regurgitate every so often but I have the pain multiple times weekly and often notice it more at night keeping me awake for hours. I am finally going back to a new GI Wednesday the 22nd to see if there is anything we can do about this pain. Although I don't feel too hopeful I guess I should make sure everything is ok, I'm sure they will so a scope. just thought I would write and tell you that I totally understand exactly what you are going through. It can be hell sometimes sad
    • pauline1981
      pauline1981 Mish221

      Posted

      Hi Mish,

      Thanks for your reply. Do you mean you take the Nifedipine whenever you get your chest pains? How often can that be? I didn't think you could take it long term. I had awful chest pains last Tuesday which lasted 4 hours and nausea which lasted until Friday- was so worried about eating in case I regurgitated it up. Would you ever consider having the myotomy again? I had a dilitation in 2011, it worked for a while, but it's lost all effectiveness now.

      How I wish I could just easily eat instead of contorting my face and thumping my chest during meals!!

    • Mish221
      Mish221 pauline1981

      Posted

      Yes Pauline, I take it whenever water doesn't work. It relaxes my esophagus enough to let some.of the last food down or stop the spasms. I only take it when I really have to. I can have a bottle of 30 pills for a few months. Since it lowers my blood pressure, which is low to begin with, it can make me a little uncomfortable for a while once it hits, but I've gotten used to it and honestly can't make it without it. I often worry about regurgitation when taking it so I take a pin, pop the capsule, and squeeze it under my tongUe. Its extremely bitter but a welcome relief much quicker than swallowing it. I ALWAYS have one with me!!! It just depends on the pain, its amazing how tolerant we become with the pain of this disease. I don't think a lot of people can handle the pain we do as often as we do! Try the nifedipine (the brand name is Procardia) and see if it works for you. I hope it does because there isnt a permanent solution for this awful disease, all we can hope for is effective management for the best quality of life we can get.
    • pauline1981
      pauline1981 Mish221

      Posted

      Hi Mish,

      Thanks for the quick reply!! I have taken Nifedipine in the past- I was prescribed it after my diagnosis and before my operation. I remember I had to take it 30mins or so before every meal. I too have low blood pressure and I remember it making my legs go bright red!! I guess from all the blood pumping round my veins quickly. I'm visiting my GP tomorrow so may ask her to prescribe some. When lathe pain gets so bad I think I'd prefer childbirth (I have 3 kids) over this, at least you have something to show at the end of the pain!!

      Out of curiosity- are you in the UK?

      Pauline

    • Mish221
      Mish221 pauline1981

      Posted

      My feet get red from it too. I only take 10mg but yhere have been times I've taken two out of desperation. mainly I just live with it. I had a lot of pain this moring and started gulping water....the bad part is that I am a teacher and can't leave the classroom to visit the restroom! Ha! I'm with you on the pain, at least after childbirth it was over. this knew comes and goes with no warning. I truly can't pinpoint a trigger and I have tried!

      I live in Florida, US. I found the site while looking to see if there was anything new out there to help us. I'm starting to really get tired of fhe pain that I hAve been living with for 10 years and was hoping to find something new. No such luck, but I forgot how nice it is to see that there are others out there like me.....its so hard to explain the condition to people, especially in the middle of pain smile

    • pauline1981
      pauline1981 Mish221

      Posted

      Hi Mish,

      I find that having water sometimes makes it worse. I've read other people swear by ice cold water- I have to drink warm/hot water as the coldness is too much of a shock to my oesophagas.

      The pain is just unbearable, like extreme pressure in your chest.

      When I was pregnant, but unaware, with my 3rd I was prescribed a spray which was specifically for

      angina patients. Although it provided the relief from the chest pains, I was violently sick and nauseous after using it- needless to say I didn't carry on with it.

      I have also read other people say eating a banana helps with the spasms. Surely if the food is stuck, then the banana would too? When I'm in pain the last thing I want to do is eat.

      I do think since my op my condition has improved remarkably- I used to be sick 20+ times a day, to the point I wouldn't go near food as I knew it wouldn't stay down- to having chest pains maybe 3-4 times a month and being sick 6-8 times a month. Though recently it has become more frequent. I'm just hoping the effects of the myotomy doesn't wear off over time.

      Would you ever consider having the op again? Are you quite careful what/when you eat? Sorry for all the questions- we just seem to have very similar experiences.

      Pauline

    • Mish221
      Mish221 pauline1981

      Posted

      I would have it again if I needed it. food gets stuck about once a month where I have to run to the restroom because when it wants to come up, it does. I have a hard time with sticky rice, hamburgers and bread so I stay away. I pretty much eat what I want and just feal with it after. I can usually tell when it is going to get stuck bad. I can usually drink water and feel the food finish it's way down. But what I really want relief from is the chest pain. I haven't been to a GI doctor in 5 years but am seeing a new one tonorrow. The last one I had insisted that you can't have achalasia AND spasms.....obviously I do, so I didn't go to him or anyone else out of frustration for five years. I don't think think they can do anything to help me anyway but we will see what they day tomorrow.
    • carla95203
      carla95203 Mish221

      Posted

      Hi. 

      This is the first time I've joined a group chat before, but I've read the thred with interest, hoping someone would have some advice on dealing with the chest pain. It's 5 am and I've been suffering for 3 hours already today. 

      I'm 32 and had a Hellers myotomy a couple of years ago. My swallowing has improved greatly but the chest pains are horrific when they occur. 

      Mish, did you have any joy with the GI you were seeing? 

      I just feel it's pointless going back to my consultant when he sees the operation as a "success", in a way I guess it was insofar as the swallowing of food, but I am blighted by the pain caused by food just sitting in my chest and it's so hard to make others understand how crippling it is. 

      Sorry to bang on, the pain and tiredness is really getting to me this morning. 

    • didragon
      didragon pauline1981

      Posted

      hi pauline , i am in the uk, i too stopped taking nifedipine because of red legs , swollen ankles an feelinf faint as have low blood pressure already. i have had a weak and innefective swallow for the last 4 years and have been standing up to eat for the last 3 1/2 years - although stioll have problems regularly and they have been gettin g worse , i have now been diagnosed with achalasia and see consultant monday who i think is going to suggest myotomy - am wondering now wheyher i should go ahead or not !!!! 
  • 03jduffy
    03jduffy Guest

    Posted

    I have had achlasia for the past 5/6 years, I have now had 6 diallitations and two lots of hellers myotomy which have all failled to give any relief. I'm probably at end stage now close to full esophagectomy. I usally get pain in stomach/epigastric area which is like an achey sort of pain probably due to amounts of surgery and streches. I also get quite alot of chest pain, I have tried nifedipine, sprays, sipping water ect but to no relief. It's normally no use anymore and I sort of bull up to severe pain now.
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