Posted , 4 users are following.
I am finding that my reflux and severe sore throat have gone a whole lot worse over the last few weeks so much so that I am really not coping. I was awaiting an ENT scope and a manometry/ ph studies test when the lockdown started. Has anybody else"s symptoms gone crazy recently? Has anyone found a way to ease symptoms?
0 likes, 21 replies
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AlanJM Jeanne76
Edited
I think the answer is Yes, nervous tension and anxiety can make achalasia worse. The difficulty with the muscles affecting the propulsion of food down to the stomach is not so much the muscles themselves, but more the nerve endings that drive those muscles (and perhaps sometimes blood supply to the nerve endings, but this is a bit more speculative). So it would not be surprising for spasms to get worse too. But achalasia quite often does not involve reflux as such.
Try Gaviscon Advance from over the counter because this may well protect your oesophagus from the effect of stomach reflux for a few hours. Repeat as necessary. If this works, it is likely that it is the reflux that is causing the problem. Gaviscon Advance will work against acid and bile (alkali).
Try some form of relaxation technique. You will be constrained at the moment from visiting complementary therapists but you may well be able to get some advice over the phone or by skype / zoom.
I heard recently of one person who found that taking vitamin D oil under the tongue helped with spasms, but this can be a very individual thing. But perhaps worth a try. It all depends on whether the pain and discomfort you feel is related to reflux (and possibly heartburn?) or whether it is spasms of the muscles.
This is unqualified speculation on my part, but I would try the Gaviscon Advance first.
Jeanne76 AlanJM
Edited
Thank you very much, Alan for your very helpful reply. I have seen from some other posts you replied to how informed and knowledgable you are and I think I had a look at a publication you recommended a while back. I am still trying to get a proper diagnosis and treatment that works after 3 years plus. ENT suggest LPR, gastros. speculate functional dyspepsia, hypersensitive gullet or dysmotility. PPIs have made matters worse. The only thing that ever helped was Gaviscon Advance ,as you say and a low acid diet. Recently, however I've had a couple of occasions when I experienced heartburn. Since then Gaviscon Advance has burned my throat and gullet quite badly. My throat has got worse and worse to the point where I am in tears trying to eat liquidised food and drink water. I do not know what to do really. My GP has warned against going to A and E and I would imagine that they have enough to cope with at the present time. I am going to try Lansoprazole 30mg again. Not sure why, since it gave me a very dry throat and a sore mouth with ulcers inside! I did only stick it for a week though. The diagnosis of possible dysmotility scared me greatly but stuff does seem to spasm up when I'm upright. I read some of the posts on here and think that I could never be so brave and resourceful as some people are. Thank you again for your kind and useful reply. Hope all is well with you. Best wishes.
AlanJM Jeanne76
Edited
I suspect that your GP is right about trying to avoid A & E at the moment.
If PPIs have made things worse, I wonder if it is bile (alkali) rather than acid that might be part of your problem?
Have you been tested for acid? You can get testing strips from pharmacies I believe, and although they are a little bit tricky to interpret, it might be worth a thought.
Another thing might be Sucralfate which I know is prescribed by some hospitals, but you would need to consult your GP about this.
Dysmotility really means that the food is going down at the speed it should, which is fair comment from what you have said, but there may be things like relaxation techniques (easier said than done I know) that might help.
It seems strange to me that Gaviscon has caused such a reaction. The advantage that Gaviscon has is that it is an alginate that creates a protective raft, rather than being an antacid that counteracts acid chemically, or a PPI that switches off acid production. Perhaps your oesophagus / throat has become very tender / sore.
I imagine that you might want to try having just very bland things like yoghurt and honey, or smoothies?
There are some websites that might help in researching foods.
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Jeanne76 AlanJM
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Thank you, Alan for your support. I did wonder about the throat problems bring caused by pepsin, bile etc or weakly acidic reflux is it called? I was very surprised at my reaction to acid suppressants wondered if I had not persevered for long enough or attributed normal symptoms of the disease as side effects. The consultant I saw said that even after a week I should have seen some benefit. If my symptoms had included heartburn at the time I don't know whether they would have helped or not. I sort of followed advice given in the acid watcher"s diet and leaflets from a local city hospital. They suggest a double dose of full dose PPI split each day. I never got that far. Think the side effects would have finished me off. I do notice that in the updated advice from one of the ENT departments it mentions that Gaviscon Advance may be all that"s needed for LPR. This fits in with the idea that they are no better than placebo if you have LPR but no GORD, I suppose. It"s all very confusing. In my case the encounter I've had with medication has made me so fearful of doing trial and error that it makes any benefits disappear under the weight of the terror I feel! I think it is the fear of taking something I can't just stop taking straightaway if the side effects become intolerable. I shall look into the testing strips and the alternative to Gaviscon. I always wondered how the acid could just defy gravity and creep upwards or rather shoot upwards as it now seems to do and the faulty peristalsis idea seemed to explain this. It's easy to overthink it all, isn"t it? What I suppose we all want is to be about half our age and be able not to give consuming nutrition a second thought! I have had illness in the past but admit this one has completely taken the shine off life and the thoughts of a manometry revealing something even more difficult to cope with is frightening. I take my hat off to you all on this forum. Any inspiration or tips are very welcome. If I can help anyone with the very limited experience I have I'll do my best. Take care and thank you.
AlanJM Jeanne76
Posted
When the food you have swallowed shoots upwards, do you know whether it has come from your stomach ie vomiting? Or has it not been digested very much at all?
In some cases when the lower oesophageal sphincter is closed tight, eating more food can create quite a bit of pressure, which then gets released upwards in the form of regurgitation. The pressure would normally be relieved by the food going down into your stomach. Have you had a barium swallow test? I do not know, but I imagine your GP might be able to arrange this if you have not already had one.
Jeanne76 AlanJM
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Hi, Alan, thank you for getting back to me. Not sure what the gunk is but it's bitter tasting. It can happen as I eat or straight afterwards and recently it is like burning mucus coming into throat at random times. I hope that the sphincter is behaving itself but what you say makes sense if scary sense. The last barium I had was 2007 when I first saw an ENT about persistent globus. He just gave me a nasal spray. On review my throat was just as bad so he ordered a swallow which came back as normal. The globus faded away so I put it down to anxiety. The whole thing began again in 2016. I developed tinnitus as the nurse was syringing my left ear. This has continued unabated to this day. Had a couple of MR Is to check for acoustic neuroma as the tinnitus was one sided. Following year throat and swallowing problems began. After antibiotics, nose sprays etc. and finally not being able to speak or swallow an ENT said it was reflux and advised a barium swallow. My GP said this was old fashioned and the gold standard was gastroscopy so I had that. It was normal but histology showed minor reflux changes. A trial of Esomeprazole made acid shoot into my throat 30 minutes after every dose. No one seemed to believe me but this made the throat incredibly painful and terrified me. The consultant said that this reaction showed it was a hypersensitive gullet and just to use Gaviscon . When things got bad I would try PPI or Ranitidine or Famotidine .Nothing has really helped but being scared of the medication does not help. My present ENT confirmed LPR diagnosis and has indulged me by repeating scopes whenever my symptoms were bad enough to have panic attacks. Interestingly enough, once when my symptoms were very bad he saw nothing at all. This has made the doctors think that it's anxiety driven or needs a low dose antidepressant but I think it is probably damage in deeper layers? I really don't know. A young consultant suggested dysmotility rather than reflux and said just to use Gaviscon. I do not know where I am. Just want my family not to have to see me in this state all the time. Once the terms dysmotility and spasms were mentioned it seemed to fit but my throat is so painful now and mealtimes are awful that I thought a retrial with Lansoprazole was all I could do given the state of things at the moment.
I am so sorry. I did not mean to give you my life story! I shall mention what you suggest to my GP. I am desperate for some relief. Hope that things are going well for you. Thank you.
AlanJM Jeanne76
Posted
On the barium swallow tests, they do them regularly in addition to endoscopy / gastroscopy because sometimes there is a reaction that happens that the barium test will show that cannot be seen through the endoscope.
I do hope you get some relief soon.
Jeanne76 AlanJM
Edited
Thank you - me too! I am going to push for it - any information could be helpful. Looks like it could be quite a while off though. Best wishes.
Greeka Jeanne76
Posted
Again AlanJM is dead on.
If you haven't already limited or stopped intake of your caffeine and carbonated drinks, that might help. Stay to a liquid or soft diet. Limit swallow challenging foods like meats, chips, bread, dry cereal, nuts unless you also drink plenty of fluids or sauces/gravy with them.
I support meditation to reduce the anxiety level too. I am too add to do it with others, I get distracted too easily. So I have to put ear plugs in and be alone in another room.
Laughter is supposedly great for the soul and I do it as much as possible! I've discovered that if I get into a situation or conversation that is really comical and I laugh hard for too long I have trouble with reflux. Especially at a time like this when we need to keep our spirits high I am not discouraging laughter AT ALL! But if it goes on for too long I have trouble. I have to settle myself a bit.
God bless you as you await your testing and treatment to begin again and for some solutions and comfort for you!
Jeanne76 Greeka
Edited
Thank you so much for your kind words, Greeka. I joined the forum because I was desperate and I've received a lot of support and help already. I know what you mean about laughter I can't remember the last time I laughed. This condition had taken over my life and completely obsessed me. When the sore throat started and they said acid reflux I thought it would just be a question of finding the right tablet. Wrong. PPIs did the opposite of what they were supposed to do and made me too ill to function. Strict low acid diet and Gaviscon Advance did the trick for a while. Then came 3 weeks on Ranitidine which resulted in emergency gastroscopy number 5 for erosive gastritis. Since then I seem to have fumbled through life with numerous consultations with ENTs and gastroenterologists no one saying the same thing. My throat is intolerable at the moment and I seem to have stuff spasming into it continuously. Sleep sitting up only sip water etc. I know there are far tougher conditions to deal with but you get fed up with it don't you? You sound to have sussed out a way of making life tolerable Greeka. Did it take a long time to get diagnosed? Your words at the end brought a tear to my eye. Thank you so much. I hope everything is well with you
Greeka Jeanne76
Edited
It took a few weeks and months to get through the various consults and diagnostic process. I had had a coarse cough for a couple of months and then suddenly severe chest pain took me to urgent care and then the hospital. preliminary x-rays and scans showed masses in my chest and lungs. I thought I was having a heart attack.
Within a couple of weeks I was diagnosed and started treatment for a fungal lung infection called Histoplasmosis. 12 weeks of Itraconazole stopped the spread of the infection but the damage was done. My lungs and esophagus were left with several calcified lesions. The chest pain was still intense. After Manometry tests showed high pressure esophageal spasms, GI specialists at U of Iowa diagnosed severe Achalasia. I've had multiple surgeries since then (the last in 2016) to help with the spasms and chest pain. It's been a journey to say the least and I am not free of chest pain. For years I was on heavy doses of Opiates for the pain and thank the Good Lord I have a great doctor that worked with me to get off of them and onto Gabapentin. Even at 900mg 4 times a day, that got to the point when it wasn't effective anymore. I am on Lyrica now and while I'm not free of chest pain, it's better. my pain level daily is a 5-6. Anxiety and stress can definitely cause me to have higher levels of spasms causing chest pain. I am on a mild antianxiety med. In stressful times I try to use meditation, music as well as good rest, diet and exercise to help relax a bit.Barometric pressure changes from various storm systems that come through the midwest can cause chest pain to spike as well.
Hopefully, moving forward more answers will come to help all of us that suffer with this condition.
I pray you remain safe and well. Glad you found this site. It has been very helpful and encouraging for me.
Blessings!
Jeanne76 Greeka
Posted
Well , Greeka I don't know what to say. I would never have thought that someone so kind , cheerful and optimistic could have gone through all that. I am so sorry that you had to endure such suffering and anxiety, you must have been very frightened.
It sounds like you have a good team of clinicians who have helped and supported you but it must make life a real challenge. It is inspirational to learn of someone who has managed to overcome so many hurdles and yet remains upbeat and hopeful for the future. Thank you for your kind wishes. Please accept mine back! I shall keep everything crossed for you and hope things get a lot better for you in the near future.
dazza1970 Jeanne76
Posted
Hello Jeanne76. i have read you posts here and i have exactly the same symptoms as you as ore throat that feels like i have a lump in my throat. my problem started back in nov 19 i had a bad cold with sorethroat i lost my voice for a couple of days but the sore throat feeling has never gone away i have saw my doctor umpteen times now i have had the barium swallow and a small sliding hiatus hernia was discovered. the odd thing for me was that the ENT doctor said to.me even before he looked in my throat he said its gonna be acid reflux, i beleive because he was thinking that, when he looked up my nose and down my throat he was not looking hard for any other issues. anyhow i have been prescribed lansoprazole which i have taken for 3 weeks my throat was only getting worse. i saw a doctor on 16 april a dfferent doctor because i now have a thick yellow plaque on my tongue he has reluctantly prescribed me amoxicillin i am now on day 2 and already my throat feels different i dont know if its helping as i think its too soon to know. have you had any improvement greeka seems to be very knowledgeable here so was wondering what your thoughts are on my case too. there are too many similarities here whats going on before november 2019 i was fine now 5 months later its becoming a serious problem.
Jeanne76 dazza1970
Edited
Hi, dazza, sorry to hear that you are going through a rough time too. I've been trying to sort this out for so long and had so many different things said to me that I really do not know what to do so I'm not sure I am the best person to ask regarding your own case. The more you read and ask the more confusing it all becomes. I thought it was just a case of getting a diagnosis being told what to do and bye bye but apparently not. I saw 3 ENT docs 2 said reflux one just gave me a nose spray. There seems to be controversy about the signs seen in the larynx and different people interpreting them as different problems. Did your doc not suggest a gastroscopy or are they seeing if the Lansoprazole helps which would suggest the problem is caused by reflux maybe. I have felt very poorly on all the PPIs I have tried. Lansoprazole made my throat very sore but I've gone back on it today out of desperation in the hope it might make it less painful to swallow. Most of my friends say it works great for heartburn etc it just makes me feel so poorly and burns like crazy if I'm a few minutes late taking it
We"ll see.
Have you had a look at the posts on Reflux Oesophagitis on the forum? Reflux into the throat but not causing heartburn is known as LPR loads of resources and lifestyle, diet recommendations online. Interesting that you have been prescribed an antibiotic and you feel it might be helping. My problems all started while I was on an antibiotic and others have said the same. My tongue gets a similar coating whenever I take medication I thought it was due to messing about with the bacteria naturally present or thrush maybe?
There are many very kind and experienced people on this forum so hopefully someone will reply and give you a bit more targeted advice. I wouldn't get too impatient though. Reflux is not as uncomplicated as it first seems . Hopefully yours will be a straightforward case and they'll find a medication to settle it and maintain you in good health. Try not to let it get you down. It"s changed me from a happy professional woman to a complete nervous wreck, obsessed with my health shut in on myself and upsetting the lives of my family . Do not let it do that to you. Look at Greeka"s upbeat post. All best wishes and I hope you get sorted and feel better very soon.
AlanJM dazza1970
Edited
I wonder if it is thrush / candidiasis? It would need antibiotics to clear it up but if you search on the internet for Achalasia Action charity and then download 'A Patient's Guide to Achalasia' you can find some tips about it there.
Greeka Jeanne76
Posted
Have you had Manometry testing with your GI specialist?
Jeanne76 Greeka
Posted
Hi, Greeka hope you are well. No, it was supposed to be in March but was cancelled or postponed due to the virus. I started Lansoprazole again today but only at maintenance dose as doctor thought it might lessen drying out of throat and sore tongue. After a day of bad nausea not being able to keep my eyes open and a throat like sandpaper I am ready to give up already! I find it difficult to think that something which makes your body feel so poorly can be helping. Never seen any benefits but I chicken out too soon maybe or this is not an acid problem? Who knows? Lovely to talk to you. I think that dazza above might appreciate some of your comments. Take care.
Jeanne76 AlanJM
Edited
Just to say that I read this last night it is definitely worth a look brilliantly clear and concise and full of tested and tried tips. Dazza you might find " Down with Acid" by Chris Robinson of the Wessex association a useful resource as well. Good luck.
dazza1970 AlanJM
Edited
hello alan. i have been prescribed amoxicillin. only on 17th april actually seems its having some positive effects on my throat problem but i think its too soon to tell if its clearing up .
best regards
darren
dazza1970 Jeanne76
Posted
thanks jeanne i will take a look . its good to have someone else with the same issues i was begining to think i may not sort this problem as docs dont seem to interested to be honest with you..how long have you been suffering with this issue for?
Jeanne76 dazza1970
Posted
Hi dazza - first time I experienced lump in throat was 2007 but always had problems with lots of catarrh etc which was put down to allergies. Struggled on until 2016 when it got unbearable. I have found that doctors can only deal with clinical evidence and have to follow strict guidelines. If the results of tests are ok they tend to be satisfied even if you are feeling terrible. They do the best they can, I suppose but only you know how you feel. Think you have to make a real nuisance of yourself sometimes and it can be very demotivating.. Always good to compare notes. Sure the present situation in the world is making everything more difficult. Hope it all gets better soon
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