Esophageal spasms wont go away!!!!!!!!!

Posted , 12 users are following.

I'm glad I found this site as well you all my name is Chiffon I'll be 34 on the 29th. Anyway I was diagnosed officially after a year of terrible nausea and pain in August 2012 with Gastritis and Esophagitis. Up until this year in June I thought it was the gastritis causing the pain. I have been through three doctors due to them not being to treat my pain or refusal to treat my pain. Either way no matter that I've changed insurance companies each time, I still end up with the same GI specialist. He's not paid he just works with the system of step by step and now we've come to the point where I'm past taking everything under the sun from PPIs to pain meds and channel blockers nitrates. I've have 3 upper GIs and this morning I had an esophageal manometry which was horrible so pray you won't need one. I'm hoping to have the surgery soon. My Dr doesn't want to give me pain meds so I suffer through this excruciating pain daily mind you or find a way to self medicate. I can't work or finish school which I fought my way through twice to finish because of this illness and now that I'm done , I can't dare go out on my extern ship like this so I have to wait it out even longer. My bills have piled up and I have no idea what kind of Christmas my daughter will have this year if any. I could care less about cerebrating my birthday I just want her to have a decent christmas and my life back. Thanks for listening and allowing me to vent. I will keep you all updated on the results of the test and I'll be praying for healing for us all through these painful and trying times. God bless.

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1 like, 28 replies

28 Replies

  • Edited

    We're here to listen honey.  Been here and done that.  God bless you and will keep you in prayer Chiffy31.  I'll be 60 in a little over a year and have type III Achalasia.  I had modified Heller Myotomy with Fundiplication 18 months ago and now am looking at having POEM surgery in the next month or so.  Let's keep in touch to see how that goes. God Bless
    • Posted

      Just stumbled on this post and wondering how surgery has been for you. 
    • Posted

      It has been 4 years this month and while I still have some chest pain it's much more tolerable than it was. Swallowing is better than before as well. I'm not choking anymore or feeling the pain from slow process of swallowing.

      I've adjusted how much I eat, what and when. I'm also on Lyrica to help the pain.

      Are you considering surgery?

    • Posted

      The chest pain can be really difficult. It might just depend on whether it is caused by reflux, or spasms. Are they worse at night when you are lying down? Taking Gaviscon Advance can help with reflux.

    • Posted

      Thank you for your response. I really appreciate your input on this site. I've followed your responses and suggestions to others here and as I have actually experienced the process you suggest to go through find that you really know what you're talking about.

      The frequency and /or duration doesn't seem to have rhyme or reason to it at this point. The change in Barometric pressure can cause as much trouble for me as anything.

      I underwent modified Heller Myotomy with fundiplication in 2014 and 18 months later with the extreme esophageal spasms still causing alot of pain, I underwent the POEM surgery at the University of Iowa.

      I've learned to manage eating and drinking habits and times to help with some of it.I'm on Pantoprazole and Sucrafate for reflux and digestion and Lyrica for the pain that remains. I live with daily pain levels that vary between 4 and 7. Barometric pressure changes with storm systems can push the pain to an 8 which I try to deal with by taking Arthritis Str. Tylenol and warm milk or hot chocolate. I know that as the storm passes so seemingly will the pain.

      Thank you again for your input here! I pray you are well yourself!

    • Posted

      Thank for your kind words.

      I came across somebody at one of our meetings who takes Vitamin D oil that helps with spasms. It can be a very individual thing though.

      How interesting that you are affected by weather / atmospheric pressure! Do you also get headaches when a storm is brewing?

      Other people take Buscopan, which is used for spasms in the digestive system, or nitrates (that are designed to increase blood flow). It is not something that you would want to think about without advice from your doctor though.

    • Posted

      Thank you for your reply and suggestion. No headaches during storms but I do get joint and bone pain (I have arthritis and leukemia) both knees have been replaced and ankles repaired and pinned so those ache more . Usually as the storm passes, the achey parts let up a bit too. My husband calls me his human barometer! 😃

      I will try the Vitamin D oil certainly! Vit D has so many other benefits too. I am always up for trying new and natural ways to improve life. As soon as the Corona shut in let's up and is safe to resume going to the doctors again I'm going to be asking about the Bucospan.

      Again thank you and God bless you for staying active on this site with your sound (not static, presumptive or reactive) medical support. So many sufferers connecting on this site, all looking for support and encouragement. When I was first ill with Histoplasmosis (that led to my current Esophageal and lung issues) I felt so alone.

      In severe pain, we are vulnerable, desperately open to remedies or suggestions that might not be helpful, some actually harmful or delay needed medical treatment.

      God bless and stay well!

    • Posted

      I agree with others that buscopan cramps can help, and nitroglycerine spray definitely helps although it also gives me a thumping headache! i have taken omeprazole for years and am wary of eating anything too fatty; indian food is pretty well off my menu.

      i was offered surgery to narrow the opening to my stomach but turned that down 25 years ago and for me that was a good decision as i could not risk it getting worse. I have had gall stone colic - and a baby! - and stomach spasms are worse than either. Mine are related to stress; i honestly thought they were not, but when my mother died rather unexpectedly, shortly after id seen her, the next day i had a mega attack and spent the day (christmas day! ) in hospital, so managing stress is an important part of avoiding attacks and stopping them from escalating. Hidden stress may be a trigger; like others, my attacks often seem inexplicable and are unexpected, even rousing me from sleep. If youve tried everything else, try relaxing: very difficult, but effective.

    • Posted

      I have been retired since 2012 and my overall stress levels are really low. When I do experience stress though you're right, meditation and relaxation therapy do help! Thanks for your quick and encouraging response! God bless you to stay well!

    • Posted

      I am considering the surgery, just have to find a new doctor first. I'm extremely nervous to do it though. Are there any tips or advice you recommend to prepare myself?

      Also, how often do your chest pains occur nowadays?

      Thank you for your help & I apologize for the delay. I had to get a new laptop.

      Thank you, take care!

    • Edited

      I think it is natural to be nervous about these things, but on average 80-85% of people who have these procedures feel that it was an improvement. You do need to find a specialist Upper GI centre where they are experienced at dealing with achalasia. It is a relatively rare condition so the surgeons with experience are that much more difficult to find. Where do you live?

      There is a booklet 'A Patient's Guide to Achalasia' that you can download from the Achalasia Action charity's website.

      It can be quite daunting when the surgeon seems to leave it to you as to whether to go ahead or not. It is not as though it is an emergency as such, but long term it is probably best to go for a thorough diagnostic process and then for a definitive treatment that will give optimum benefit for the longer term. Everybody is different, and the doctor will need to take your own circumstances into account. Delaying things will not lead to an improvement as such, and might make the surgical procedure less likely to be totally successful.

      Surgery is not really a cure. The procedures will normally relieve the tightness of the lower oesophageal sphincter and allow food to pass through with gravity. There is no guarantee that you will not suffer from spasms afterwards, but usually the balance of benefit is such that it is an overall improvement for most people. There will always be an aspect of your swallowing process that will be affected by how tense you are, even after the surgery, and you will continue to need to take care of yourself thoughtfully.

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