Please help us. Daughter 16 new diagnosis

Posted , 5 users are following.

Hello. My daughter was newly diagnosed w Achalasia after her upper gi tests showed she had it. She has a manometry in a few weeks. Then an appointment with surgery team at U of M. 

She has been having these horrible episodes of pain. Often time sit will wake everyone in the night. The pain is in the area Middle chest/under her breasts. It is terrible when it hits her. It eventually passes. She describes it as tearing feeling. 

What can I do to help her relive the pain from these episodes?

Also and other advice for treatment etc is greatly appreciated. 

0 likes, 6 replies

6 Replies

  • Posted

    The only thing that helps my pain is applesauce...I keep the little six pack cups...but before she lies back down she is should clear whatever didn't go down out..or she will start that coughing...

  • Posted

    I have those "esophageal spasms" too, especially at night when I'm asleep or trying to go to sleep. I've found that forcefully swallowing air helps it, and also forcefully massaging the area. From what I've read online, these spasms can feel like a heart attack in terms of pain. I've never had a heart attack but holy crap they hurt. I've also read that people have found relief from these by taking muscle relaxers... if that's the way you wanna' go. I'm 22 and was recently diagnosed with "textbook Type 1 Achalasia" after several scopes, 3 failed stretches, and a manometry test. The manometry test was uncomfortable (but is there anything about this disease that isn't?), but it's able to tell what type of Achalasia you have, and that's beneficial in terms of figuring out relief options. I'll be meeting with a surgeon on Tuesday. I've been told that I'm "a perfect candidate" for a Heller Myotomy with fundoplication. I know it's the best, and hopefully most successful, option for my age and my type. I hope your daughter finds what works best for her spasms and I hope that they subside. I hope all goes well with the manometry, and I hope that y'all are able to figure out a plan for finding her some long term relief soon! (And claps to you, mama! I know you're feeling it all as well.)

    • Posted

      After doing a lot of my own research, talking to my physicians, and thinking about my own situation I've elected to go with the HM. While POEM is a great fit for some people, I just didn't feel like it was right for me at this time.

  • Posted

    Hi, I'm sorry to hear about your daughters struggle with Alchalasia. I've experienced pain for over 15 years and it is a crushing type pressure in the midsternum area. More often than not it radiates to my jaw. Mimicking that of a heart attack. The only thing that helps mine are nitroglycerin tablets taken sublingual. They will give you a bad headache but that usually subsides after 5 to 10 minuets. Sometimes after you take them for a while these headaches lessen. You would need a prescription of course for this type of medicine. If there are no contraindications for her to take this vasodialator I would check with her Dr. and see if he thinks they might benefit her. It also comes in a spray to take sublingual as well. Which is much easier than fooling around with the tiny pills. I hope I've been able to help you some. I don't know of any other drug accept nifedipine that would help. 

    Good luck. Keep us posted on her illness. 

    DJ~RN

    • Posted

      Oh, btw, this pain is usually due to esophageal spasms. So, you might want to search the web for treatment of esophageal spasms. 

      DJ~RN

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.