Lupus choking and feeling like throat goes into a spasm

I get extremely bad reflux and choke during the night and also daytime. When I choke and end up in a coughing fit, it then feels like my throat is going into a spasm which makes me panic. I'm not coping at all and I'm popping diazepam like smarties to calm down.

I'm already taking 80 - 120 mg esomeprazole daily for the reflux and I'm drinking Gaviscon Advance like water. I'm also taking Donperidone before meals to help open stomach (or something to that effect). I'm sleeping with 8 pillows at night.

My throat is always very sore and red.

Can anyone give me advice because my rheumatologist said she's never come across it in lupus so doesn't think it's lupus?

Once I'm in the heat on the choking/coughing I get tingling over my head which I know is the cerebral vasculitis because my old consultant told me and my hubby this but he's now left and this new consultant looks at me like I've gone mad. I'm really struggling to cope.

Any advice please.

Thank you

17 Replies

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  • Sorry you are struggling so much. I've had this problem for years - along with dryness in my eyes, nasal passages and throat. The panic makes it worse so I try to always have a water bottle nearby, use oralieve gel and salivex pastels, sometimes sugar free sweets etc. Sucking ice is good but it hurts my teeth and causes spasms if I swallow icy drinks too quickly.

    My GP calls the problem in my chest - oesopopheal spasms. This problem may or may not go with Lupus, but it certainly goes with Sjögren's for me - and these are often said to be sister diseases. Just a thought?

  • I've got Skogrens too and I've always got water with me. Great suggestions which I'll ask my gp if I can get. Hope so. Thank you so much x

  • Always pleased if I can help a fellow sufferer. There's no cure for Sjögren's but there certainly are things that can help a bit 😏

  • The spasm is the bodies way of protecting the airways from the acid. Sleeping tablets and anxiety tablets can make the situation worse too (not good when you need them) I have had 2 operations performed to treat my reflux as after tests it was found to be affecting my lungs during the night. Maybe this may be an option for you if you have exhausted every other way of trying to deal with it. You have my sympathy it's awful to wake with sore throat every morning and to have that choking sensation.

  • I feel your pain, it's just horrific. Did the op help at all?

  • Yes it has it has reduced I'd say by about 70%. I did have to have it done twice but second time I found an excellent surgeon who advised it isn't able to eliminate all reflux but is usually able to control it to a level "normal" people have. As I said it had started to damage my lungs and that was the reason I pushed for the op and since the op I've managed to rid myself of the chronic cough I had. Maybe worth considering. Wish you well. X

  • Thank you. I'm glad you've found it a help x

  • In about 1/3 of patients the PPIs appear not to work - and that is what may be happening to you, Have you tried the older raitidine/Zantac which works on a different part of the pathway in acid production?

  • No they haven't so I'll definitely speak to my GP about that. Thank you. I'm finding this sight more insightful than my GP and Lupus Consultant x

  • Hi lorska1 I too went thru a episode a couple of months back thought I was dying everytime I had a cold drink I would start coughing choking unable to catch breath thinking this is it lol but eventually it calmed down by its self thinking back the weather was quiet warm at time and we all know how heat sensitively can effect I'm also on omerprazole have been over 6 yrs don't over do it with other tablets in between as you'll end up making yourself worse I had allergy rest done and I'm lactose intolerant switched to alternative I still can drink as much coffee as I want without it effecting me the other thing is orange or orange juice a sip of that sends the reflux over my head for me these 2 things effect me if you can sort the reflux problem first ask your gp for test I asked for wheat and milk when I got diagnosed for lupus 3 yrs ago again the choking can be part of both lupus and reflux mixed don't have cold drinks try warm water instead to get the reflux under control wish u speedy recovery x

  • Thank you 12derby. That's good advice xx

  • I find that apple cider vining are helps if I drink it before bed time, with a couple of spoons of honey.

  • Oh.... I'll try that. Thank you x

  • Hi Lorska1,

    I am sorry to hear that you are experiencing a lot of pain at the moment. If you are unsatisfied with your rheumatologist, have you thought about getting a referral for a second opinion?

    It is advised to discuss your current regime with your GP whilst you may be waiting for a rheumatologist appointment to ensure you get the correct advice and treatment (if required) for the pain you are experiencing.

    We published a blog article which discusses how you can change your consultant here: lupusuk.org.uk/getting-the-...

    Lupus presents differently in everybody therefore no two people will experience the same exact symptoms. Lupus can affect the throat, we published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which you can read here lupusuk.org.uk/wp-content/u...

    Please let us know how you get on, wishing you all the best.

  • Thank you, Chanpreet.

  • My husband is coming with me to see my gp next Thursday, and thanks to my fellow lupies on here, I've now got lots of info/suggestions that might help. I'll keep you posted xx

  • Just a quick update - after a lengthy email to my lupus consultant, she organised a gastric emptying scan which I had last week. Results today and I'm told the report states "the solid phase gastric emptying T-half is not reached during the prescribed imaging time. Features are consistent with gastroparesis as suspected."

    I now need to wait to see the gastro consultant, but at least I know that I'm not going off my head!

    Thanks to everyone for the advice and support xxx

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