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Non Specific Esophageal Motility Disorder Caused by Beta Blockers
Hello, I am six months into the worst health nightmare of my life. I went to see a dentist in early January 2017 for a root canal. He injected me with numbing solution, but couldn't get me numb. For three days after that injection my heart was racing out of my chest, and I was having tremors at night. I went to the doctor and she said it's likely the solution went into my system, and since it has epinepherine, it caused my heart symptoms. So she put me on propranolol/Inderal 20 mg 2x a day. After a few days, I developed intense mucous and cough and it felt like my throat was flapping in the wind. I was also experiencing what felt like my heart being squeezed and my throat closing. So she told me to back off the meds, and sent me to a cardiologist. The day I saw the cardiologist I was having major propranolol withdrawals. The cardiologist gave me the same information my GP had given me, that it was likely he dental numbing solution. She put me on a different beta blocker called metoprolol succinate ER. Six hours after taking it, I was having what felt like heart flutters when eating, then feeling like if my swallow was stopping. After a few days I noticed it was becoming increasingly harder to swallow, until by the end of ONE WEEK on the medication, I could not swallow at all and was choking on chicken broth and having very intense feelings of my heart being squeezed and then my throat closing. I took myself to a gastroenterologist after having googled my symptoms and being ignored by every medical professional I saw, and he said the drugs likely relaxed my smooth muscle too much. He had me stop the medication and do an endoscopy and a barium swallow/manometry. My endoscopy was normal, and my barium swallow showed I had tertiary contractions and also significantly diminished primary peristalsis. About six weeks after stopping the meds, I was given a manometry which showed that i had 90% swallows failed. About two months after stopping I was given another barium swallow which showed that now my distal esophagus had diminished peristalsis and that i was having spasms. I have never had any problems in my life. Then six hours after taking a random heart medication, esophagus is malfunctioning. I am six months out, and i have had improvement in that I am no longer choking up top, but i can't eat solids w/o spasms and food getting stuck. The doctor said I have non specific esophageal motility disorder and there was NOTHING ELSE THEY COULD FOR ME AND I HAD TO LEARN TO COPE. I refuse to accept this and am looking for a doctor with 1) compassion and 2) knowledge and willingness to try to treat, as I've read there are treatments. I realize none of the treatments work for all, but to give up on me and leave me hanging w/o a nutrition plan, w/o anything, is cruel. I've lost 53lbs since this started and I was so weak I could barely work. I am doing better now, but only because I am eating tons of ice cream and anything liquid, SO MUCH SUGAR. If anyone has experienced this or maybe can assist, please let me know. Thanks! i am in the dallas, tx area. I will take all recommendations, for in and out of state and even at Mayo! Thanks!
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Thanks. Still persuing treatment.
@tryingtofindanswers
Hi. Jim here. I just posted on the esophagus issues conversation. I wouldn't accept the notion that there's nothing more to be done. I think that there's always more to be done.
In the past couple of months, my pcp, an ENT doctor, a speech therapist and others for other issues, have been working together to find answers to my swallowing problems. There are many resources available to you.
Gotta go.
Jim
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3 ReactionsHi @tryingtofindanswers,
If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments
When you call, they will ask questions to help direct you to the best specialist, either at Mayo Clinic or closer to home.
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1 ReactionHello @tryingtofindanswers
It has been a while since you have posted about your motility problem. I hope that you have found some help by now.
We would like to hear from you. Will you let us know how you are doing?
Teresa
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2 ReactionsHi from @darlia
I have recently been diagnosed with Ineffective Esophagial Motility Disorder.. or IEM, I am told. My Gastroenterologist told me that there is not anything to do for it, so I try to be careful to be very aware of chewing and swallowing. I can choke easily on food, drink pill or nothing!. I've been tested with many swallowing tests which all come back to say that I don't have any blockage or problem other then the IEM. I do also have GERD, Gastroparesis and sliding hiatal hernia and am currently taking Pepcid only at night, I think 40 mg. I've had the swallowing issues for most of my life and I am going to be 59 soon. IN a couple of weeks....so I am just looking for any help here from anyone who knows more about it and this looked like a good place to ask. I publish on Neuropathy, Autoimmune and Digestive Health too. I started a post titled FGFR3 Antibody in the Neuropathy group which I also have been diagnosed as having which is the cause of my Peripheral Neuropathy.
I did take years ago Prevacid and after taking it for many years, I told my Dr,. that I should not, because I only have one kidney as it is and it reported that it could cause kidney problems. She agree and put me on the Pepcid. It amazes me how we have to be our own advocates when it comes to the meds we are prescribed. It can cost us our life if we don't!
Darlia
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2 Reactions@darlia
Have you seen a speech therapist? I was referred to one, and I found that the exercises she gave me helped with my swallowing difficulties, which frankly surprised me. I also started taking a decongestant, and that helped with the constant mucous drainage. The speech therapist said that mucous builds up in my throat causing the food to slow down as it made its way to the stomach. I was always needing to swallow the drainage, and sometimes I just couldn't.
Like you, I have to chew and chew and chew, and drink only sips at a time, no straw (it propels the liquid to the back of the mouth too quickly), and no carbonated drinks. I fudge on that when I eat out. Liquid can get into the vocal folds, too, almost like aspirating, if the folds don't block the liquid as they're supposed to.
I never gave a thought to swallowing - it's usually a job that happens automatically. Age certainly has changed the way I do a number of things. I'm 67. I try not to think about that too much because it makes me think about how close I am to 70, and I guess that makes me feel old.
Jim
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3 ReactionsHello @jimhd and @darlia
I agree with speech therapy and practicing the exercises they give you. I have a paralyzed vocal cord and had surgery to "fill-in" the floppy cord. Prior to that swallowing and speech was very difficult and at times frightening. While it has been several years since the surgery I'm still careful with swallowing (eating small mouthfuls like Jim said) and watching the quantity and types of liquid. it all does make a difference.
Teresa
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2 Reactions@darlia
Good for you! You have learned an important lesson - being our own advocate is vital to our health. That is a real important lesson for us all. I always read reports from tests and ask questions and research on my own.
Teresa
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1 Reaction@tryingtofindanswers Hi, thanks! I’m still struggling. Trying to find a new doctor that might be able to assist more, or at least be compassionate. I’ve lost 60+ lbs and all doctors tell me is that I have ineffective esophageal motility disorder and it can’t be treated. They tell me it’s “mild” and I need to learn to deal. I can’t really eat solids. My diet is crap! They even said nutritionists can’t help me ugh. So I am literally here on my own trying to figure out how to eat to stay nourished, hydrated and keep myself from going nuts.
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1 ReactionThank you for checking in with us, @tryingtofindanswers. I am sorry to hear that you still do not have an answer to your problems. I encourage you to keep advocating for yourself.
Teresa
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