Fear of swallowing/Endoscopy this week

[SarahNM76]

Hi,
Just before Christmas I chipped the crown on my front tooth and because I'm very hyper aware of anything to do with my body I felt like my swallowing wasn't right at times. My anxiety has been horrendous this last year which has resulted in me having to leave my job because I was struggling to leave the house, especially on my own. Anyway back to the swallowing. Me and my partner went for a meal on New Years Eve and the restaurant was very busy and I felt anxious and self conscious. I was eating my meal and it felt like it stuck in my throat for a second or two and made me do a kind of inhale sound. I swallowed it but a few minutes later it happened again so that scared me. Since then my swallowing has very quickly got worse to the point where I struggle with both foods and liquids with every single swallow. I chew excessively before building up the courage to swallow and I hold sips of liquid in my mouth before swallowing. I've lost a stone in weight since New Year because my diet has reduced by a lot. Strangely in the morning when I first wake up I can drink quite a few sips of water in one go through a straw but after that it's like a constant struggle all day.

I went to the doctors 2 weeks ago and she's referred me for an endoscopy on the 2 week wait. My appointment is this Thursday and I'm terrified! I only went to the doctors because I wanted to see if there was an omeprazole type medication or an anti anxiety med that dissolves in the mouth (she didn't give me any). I do get quite bad acid reflux quite often and have done for years. Strangely I haven't had it too bad since this swallowing fear started...I noticed on my patient notes on my medical records app that she's written cancer safety netting and on the referral part she's written suspected upper GI cancer. She never even examined me! She even said it could very likely be my anxiety and the endoscopy is just to hopefully reassure me and is something they would send anyone for at my age 47 who was showing certain symptoms....Are they 'normal' things to write on a patients notes? Is it because it's under the 2 week wait?

I did have the same swallowing problem around 14 years ago for quite a while where it was as bad as it is now and I've had it on and off since then but not as bad. It seems to happen when I feel self conscious or have high anxiety. I have had what I believe are osophegual (can't spell it) spasms over the years and I do get pains in my chest and back at times too which feel like reflux or trapped wind.....I don't even know what I'm asking here but has anyone had anything similar. I was reading posts on the OC Facebook page and so many were saying they had hardly any symptoms or that they had difficulty swallowing or acid reflux so that's making me panic even more...When will I learn not to Google!

Sorry for the long message...

[jojo2316]

I can sympathise because i have also had swallowing obsessions, and have experienced all the symptoms you describe. I have had an endoscopy to check it out too and the eventual diagnosis was anxiety/hyerawarness. It doesn’t make the symptoms any less real though. You only have to wait a very short time before you have your answer… hang in there xx

[Scass]

I’m sorry you’re going through this. I’ve had something very similar for the past few months.

First, she puts that on your form so you get seen quickly. It’s because of the swallowing, but it doesn’t mean that’s what she thinks you have, it’s just the only way to get you seen quickly. Which although scary is a good thing.

I don’t want to comment too much on your symptoms because I’m not a dr, but I can tell you what’s happening with me & lots of it is similar to you. Last year I had so much stress, I eventually left my job because of it, it was awful. I also lost a close family member and I think I basically experienced a burn out.
My reflux & heartburn really started to play up in September/October, and then in December I started having some swallowing issues too. It culminated in me going to urgent care just before Christmas because I thought some food was stuck in my throat (it wasn’t). For about 2 weeks after I barely ate. Then I started myself on a liquid diet, and then I read about the acid watcher diet and started to incorporate that. I’ve lost over 2 stone (I needed to), and I’ve spoken to my dr twice, I even asked for an endoscopy but they won’t give me one yet!

For the last few weeks I’ve been feeling so much better. My stress has reduced and I’m starting to relax. In the last week I’ve started to eat more solid foods and they are going down! It’s not perfect, but it’s better. I take omeprazole capsules (smaller & easier to swallow if you do it with water in your mouth) twice a day, and gaviscon advanced after meals and before bed. In 2 weeks I’ll go down to one a day & if my swallow/heartburn gets worse again then I think they’ll refer me for my endoscopy.

Sorry for waffling on, but I wanted you to see the similarities, and how big a part stress plays.

I can really recommend the diet, and following the eating advice. It’s restrictive, but feeling better is the goal here!

I don’t log on very often at all now, but I will keep checking in to see how you’re doing. Please keep talk to us if you want to!

Xx

[SarahNM76]

Thank you for the replies. It really is a horrible thing to have isn't it. Mind you I find any symptom to be horrible but this swallowing thing is exhausting and scary and makes me feel like I'm 'weird' because I look at other people, even people on the TV and they're throwing food and drink down their necks like it's nothing - I suppose it is nothing though when you haven't got the anxiety and fear and aren't focusing on every swallow.

I've been awake since 5ish this morning with the horrible butterflies and dread feeling. Once again I drank just over a pint of water and it wasn't too bad and then I got up and had a cup of tea which seemed to be ok at first but then it's as if I think 'remember you've got a swallowing fear' and then it's back to the sips and hesitating. I've also had a small bowl of coco pops which took about 15 minutes to eat because of all the chewing and hesitating. It seems to get worse as the day goes on and some meals take a hour now before I finish them or throw the rest away. I'm getting all kinds of symptoms like pains in my chest or back that sometimes seem to move around, gurgling noises, burping, muzzy head and today my throat feels sore. Through the night I've been doing kind of dry swallows that seemed to be involuntary. I suppose a lot of those could be due to not eating and drinking as much but I can't help but fear the worst. The thought of this endoscopy makes me feel like running away to god knows where. I keep having thoughts that they're going to find some kind of cancer and then my mind starts racing at 100mph imagining all sorts of things.

Anyway I'm rambling on again now 🙄 It seems like this swallowing thing is pretty common with anxiety doesn't it. It's nice to know that we're not on our own. I definitely am an hyper aware kind of person and if something makes me feel uncomfortable then I tend to avoid it which would explain the feeling in the restaurant and then this.

Thanks again for your replies xxx

[Scass]

It’s ok to be scared, it’s completely normal. But, try and do some breathing before you eat so that you start to relax.

With breakfast, if you’re having coco pops, let them go a bit mushy so they’re easier to swallow. Maybe get some spray in your mouth vitamins to make sure you’re still getting some.

[SarahNM76]

I don't handle being scared very well. My anxiety is through the roof. I even went back to the doctors last week to see a different one and ask if the endoscopy is necessary. He said he's seen people with a swallowing phobia before (phagophobia) and it is caused by anxiety most of the time especially because we're pretty much stopping ourselves from swallowing rather than having problems after the swallow. I do feel like I can feel the food or drink in my chest sometimes but I suppose I'm so tense and hyper aware that I'm noticing or thinking I'm noticing every little sensation. It's just so exhausting. I feel so tired and weak from it and worry that my body is shutting down. I look in the mirror and feel like I look pale and ill. It's just horrendous! I was watching the eating trials on I'm a celeb the other week and was thinking if they can eat a kangaroo ball without having to chew 200 times then surely I can eat my meals but it doesn't make any different. It's as if I've become obsessed with protecting myself from food or drink going down the wrong way. Our bodies are made to protect us so why are we like this.

Everything that I eat now is mushy. I've been chewing a bite of cheese on toast all the way through writing to you.

I'm been having CBT for my anxiety since last June but she's so unreliable and has cancelled so many weeks for either sickness or holiday. I've had 17 sessions in over 30 odd weeks. Her answer to this swallowing problem is to chew 90 times one day then over the next days 80 then 70 etc etc. I felt like saying you've obviously never had this problem because it's not as easy as that. I'm also paying for a therapist every week and I like her a lot but she seems a bit stumped with this issue. I suppose it's one that we've got to work on ourselves...Scary though isn't it!

Thanks for your messages and support ♥️

[SarahNM76]

I've had acid reflux for years usually worse around ovulation and menstruation for some reason but at other times too. My diet wasn't bad but it could have been better. I'm worrying so much that these years of acid have been causing damage. Strangely since I haven't been able to eat normally I havent had as much acid but I do keep getting the odd pains in my chest like where a bra meets at the front and feeling like I need to burp.

I keep thinking I ate a 3 course meal on Christmas day and was eating quite a lot over Christmas until I felt like my food was going to go down the wrong way on New Years Eve at the restaurant. I did have a big jolt of panic when it happened so it obviously scared me then it's gradually got worse and worse since then.

When I first had this years ago it lasted for quite a long time. It started when I was volunteering at a mental health charity and they ordered some sandwiches in for dinner. It was my first day and everyone went to sit in this really quiet room and I felt really self conscious eating and like the sandwich was hard to swallow then same as now it gradually got worse and worse. I don't know how I coped to be honest. It just seemed to get better very gradually as my confidence grew I think.
Then it happened on and off over the years but didn't stay around for long. Maybe I wasn't as anxious then. It happened again when I went to Rome in 2017. On the plane I felt like I couldnt swallow and while I was there I was just picking at food and sipping the drinks and it lasted for a short time after I came home. I suppose people have different things that affect them when they're anxious but this is such a horrible thing to have isn't it. I don't cope very well with feeling hungry and over the years I have had what I thought were blood sugar drops but when I've checked my glucose levels (I'm not diabetic) they've not been that low. Eating has always helped me in that situation though but now I can't eat quickly enough.

It was my CBT appointment yesterday. She went off the video call after 40 minutes rather than the hour. She was basically saying do I feel like therapy is what I need right now because I haven't done my homework by reducing the chewing. I told her it's not that easy. I felt like saying I don't think this therapy is helping because you're here for a week then off then back then off again and like you say its more about questionnaires and silly questions we already know the answers to. Mine will email me different things over that she probably send to everyone whether they've got similar problems or not.

The therapist who I pay for is very reliable and seems to tailor make things to help me. She's met me at the park a few times to help me with being out and about and the other week she took me to a coffee shop. I could only drink about an inch out of the cup though. It was very busy and I felt self conscious again but I'm still the same with not being able to drink much at home. The therapist asked me if I'd ever heard of vaginismus...Can't believe I said it but I asked her if it was a type of mediation. She laughed and said no then explained that it's to do with the vagina and how some women who have suffered a trauma or have a fear tense up that much that nothing can enter it (TMI sorry!). She said that if it can happen to a vagina then who's to say it can't happen to someone's throat through fear...It makes sense I suppose. This swallowing is very tense isn't it. I grit my teeth together sometimes to swallow or clench my fist. Sometimes my jaws feel like they're so clenched and tight or my temples and head hurt from so much chewing.

Anyway I hope all goes well with your therapist and if she gives some advice then let me know please xx

[SarahNM76]

Yes we will get better! I think we're just full of anxiety at the moment aren't we and so hyper focused on the swallowing. Plus the medical tests that we've got to have don't help our anxiety levels do they. I've got a blood test tomorrow and then the camera is at 13.50 on Thursday. I can't eat from 7.50 in the morning so that will be hard because even though I struggle I still get hungry and pick at things through the day. Then I'm worrying about how my swallowing will be after the procedure. I think I'm gong to choose the sedation. Will you when you have yours?

Your therapist sounds fantastic and very clued up. I listened to a hypnosis not long ago that was saying about a screen and watching ourselves and rewinding it etc. I can't remember where I heard that hypnosis 🤔 I'll try to find it.
What your boyfriend said makes perfect sense doesn't it. My partner will say to me at times just swallow ffs or how he's sick of this (aren't I??) and how we can't go out for meals etc then other times he's supportive and will say just take your time and it doesn't matter if you don't eat it all but I think we need support all the time with this don't we. I feel like I need to get my anxiety level really low because I'm too tense and aware all the time. I cook a meal and don't think about it much but then when it's time to eat I'm like 🙄 here we go again! I did an easy tea tonight and I had 2 fish fingers, about 7 chips and a few beans. It took me an hour. Do you think the fullness in the throat!/chest is because we're so tense? I wish this feeling in my chest would bugger off because it's making me worry even more.
I haven't choked either (touch wood). I've had where I feel like I stop myself mid swallow and then lean forward quickly or have a jolt of panic but my gag reflex stops the food or liquid from going down then. I suppose we need to trust that our body will do what it's made to do (protect us) but it's just so hard isn't it when we're scared. I feel like I've forgotten how to swallow properly and forgotten how much food and drink a person can safely swallow. It's so weird x

[SarahNM76]

It must be hard for our partners because their lives are on hold too and because they don't have this problem, and it is a strange one really, they probably can't see why we just can't swallow naturally.
Do you chew and chew and then swallow bits at a time or all in one go? I'm a bit at a time. If I could drink properly I'd probably feel better because then I'd be drinking soups or smoothies and probably wouldn't feel as empty and weak. I drank nearly a pint of water through a straw again when I woke up but then the fear kicks in and I just can't seem to tell myself that I drank the water so I must be able to drink 🤔 I had some cheerios and they weren't too bad but when I tried to drink the milk out of the bowl after I was just holding it in my mouth.

It definitely is a catch 22 and also how we've both got reflux and we both feel like this makes you think it is due to the reflux. I'd imagine, and hope that anything serious with swallowing would be something that happens over quite a long period of time rather than quite suddenly like it has with us. Also it's fear thats preventing us from swallowing isn't it rather than swallowing and it coming can up or not going down. I had a couple of days where I didn't go to the toilet (sorry) but I don't go every day anyway and with not eating as much food then its pretty obvious that we might not poo as much. I went yesterday and it was normal (probably a very healthy one on that chart thing they do) so I thought at least I know the food that I am eating is going through me. Anyway enough about that, sorry!!

I'm nervous about my blood test but I always am with any tests. I've got the NHS app have you so I'll more than likely be checking that constantly from the minute I get home from the blood test this afternoon 🙄 I'm dreading the endoscopy but just want it out of the way now and to be told that everythings ok, or at least nothing to worry about.. Since yesterday I feel a bit scratchy in my throat, heavy headed and my ears feel full so I hope I'm not getting the cold that my started with over the weekend because I'm not sure if I'd have to postpone the test tomorrow then.
The hospital rang me to sort out my appointment a couple of days after I'd been to the doctors so yours shouldn't be too long now xx

[SarahNM76]

Have you lost much weight since yours started? I've lost a stone since the beginning of January. I did want to lose some weight but not like this. They say about unexplained weight loss don't they but I'd say ours was explained if we're not eating as much