Anxiety and Swallowing Difficulities

[TheWayfarer]

Hey everyone,

My mental health really went off the rails at the end of last year where I had a massive choking incident. I was lying down eating chocolate (it was the holidays, but I learned now not to do that ever again) and a few seconds later I felt like I was suffocating.Then I had another choking incident only a week later - and after that... everything changed.

I couldn't eat or drink anything. The sight of food and drink alone would send shivers down my spine and I'd internally panic even contemplating on trying to consume it - getting flashbacks and visualising that I'd end up choking like I did in the past. I went to my GP and he prescribed be reflux medication, thinking it wasn't a big issue (it had hurt when I did manage to swallow something) and it was only meant to be used as a precaution to hopefully ensure I didn't get any severe oesophageal issues in the future with my repetitive vomitting). But try as I did, the thought of swallowing anything made me incredibly nervous.

It got so bad, it came to some weeks where i didn't have anything but water. My body ached, my head felt dizzy and my life just turned out for the worst. I couldn't work, I couldn't leave the house and I couldn't see anyone apart from medical professionals. Everytime I swallowed it'd be painful and I'd be paralysed by my anxiety for hours before even contemplating on having anything to eat or drink.

Fast forward to now, I did all the tests (barium swallows, gastroscopies, had a tube down my nose to check my throat just to make sure nothing physical is obstructing) and then after that got my diagnosis for health anxiety.

I've been tested so much - I've lost 30kg, in a constant state of fatigue and I missed a lifetime opportunity to go on holidays with my friend crippled by the fact that I can't even swallow without thinking I'm going to choke or aspirate food/liquids (have food or liquid go down the lungs). My parents- who I live with work so hard and they are quite old and sick... I feel like I've been a burden to because I haven't been able to work and financially help out. We rent, but any point our tenants might raise the prices due and we could end up being homeless.

I get chest pains, struggle to breathe and I'm constantly at medical appointments, psychologist or at the ED, scared my health is deteriorating - and I get a feeling they are all getting sick of me at this point because I haven't been improving and coming back with more and more concerns.

Thanks for listening.

[stormcloudz]

Hi Wayfarer - that sounds like a really difficult experience. Health anxiety is a very real thing and is difficult to live with, but it can be managed, it just takes a while. I wanted to let you know that we are here and listening, and want to hear more from you. Have you had anxiety for a while or is it only recent?

[Scruffy1]

Hi Wayfarer

Have you been diagnosed with anything?

i can sympathise with what you are going through

i have a rare swallowing disorder that was misdiagnosed for many years. I’ve been through all the same tests as you and have aspirated into my lungs quite a few times.

choked on and regurgitated every meal

chest pains so severe all the time that felt like I was having a constant heart attack

i was finally correctly diagnosed 2 years ago and had surgery on my oesophagus last year and while it’s not cured it is manageable now.

best wishes

[TheWayfarer]

Thank you so much for listening. I genuinely mean this as this experience and life so far has been both eye opening and alienating and I've never felt more alone than I do now. I haven't seen friends, my parents work really long hours and they just don't know what to do. Particularly my mother who I know is extremely devastated and feeling helpless about the situation. So I truly, truly appreciate your kindness. I joke that the medical professionals and E.D staff are my friends since I see them so often - but I'm deeply saddened because I think they are getting sick of seeing me.

Honestly, I don't really know. I've always been an "anxious" person and without going into too much detail about my past - there's a pretty good reason why I am. It was only around 5 years ago, it started to truly unravel and lose control when I had a panic attack (the various mental health professionals I saw confirmed it when I described) the situation to them. I had always been reluctant to seek mental health advice until this incident - so that's why the diagnosis has been pretty recent - but whether this had been the catalyst of anxiety or if it was only the straw that broke the camel's back from years of stress and unhealthy mental issues is yet to be discussed and discovered. A lot of my therapy has been concentrating on using mindfulness and distraction strategies to control my fear of needing to eat and drink, so there's not a lot of discussion about issues not concerning anything outside that.

I agree. I've already established bad habits that I need to break free from; googling health symptoms, calling Nurses On Call frequently for every issue, breaking down when my GP refuses to write a referral to see other specialists, thinking I'll aspirate or choke every single time I "attempt" to eat or drink.

Some days it gets really bad, I lie in bed just falling apart thinking my life is over while experiencing so many aches and having so many negative thoughts. I mean the reassuring thing is despite my lack of food intake that health signs seem to be stable (despite losing weight dramatically)... But I really hope to recover soon before those factors might spiral out of control

[TheWayfarer]

Hi Scruffy1

Apparently from all the diagnostics, the many doctors I have been seeing say that there's nothing serious apart from the fact that my oesophagus doesn't squeeze well sometimes and that my body has this weird that moves whatever I swallow up while it's going down. No structural issues although my gastroenterologist did note that there was definitely weakness in food going down when I was anxious. Although what distresses me quite a lot is that when I do manage to get anything down (foods or liquids), I end up regurgitating or have coughing fits right after. In the early (Jan-Feb) there were times where I'd just vomit and get really awful chest pains (that didn't feel like heartburn - which really really worried me). Nowadays, I feel really dizzy and tired and get the chest pains. But even with the liquid nutrition, I'm always so exhausted.

I've gone through lots of x-rays (and even a CT chest scan), so that worries me a lot as well. Thankfully the doctors say there's not an issue each time. I genuinely feel really horrible going to emergency because I know people and the workers there think I'm just a frequent flyer - but I'm really doing everything I can to rule out everything.

Lately I've been feeling lots of chest pains to which I'm hoping I can convince my GP to allow me to see a cardiologist to rule any heart issues out.

I'm so sorry to hear how much you've suffered. Aspirating foods and liquids is a constant fear I have and choking is such a horrible feeling. I'm so glad to hear you are managing right now.

Thank you so much for reaching out. It really helps hearing from someone that understands (whereas even some of the health profs I see make me feel silly).

[stormcloudz]

Hi Wayfarer

You're not silly, you are suffering. And doing your very best to understand what's going on. Specialists often aren't very good at understanding issues outside their own field, so your gastro may not understand anxiety (and so on).

Did you know that anxiety can have physical symptoms? I had no idea - it was confusing for me, as I did not have anxious thoughts, but had chest pains, exhaustion, dizziness, tremors, nausea etc. It was helpful to understand that the physical issues were anxiety, and that all the tests were clear, as before that I was googling and worrying, just like yourself. I also went to a cardiologist (and basically got the all clear, which was helpful). My anxiety doesn't focus primarily primarily on my health, but it was certainly appearing in my body.

I'm so sorry you are isolated by your condition. It can't help to only see medical people. Please feel free to come here and get some companionship and support. Distraction can also be helpful sometimes - do you have any hobbies or past-times?

[Scruffy1]

Wayfarer don’t let them make you feel silly.

keep turning up at emergency or to doctors until something is done

I first saw about my swallowing issues more than 20 years ago and was always told there was a problem but nothing could be done.imagine what that does to the anxiety. 2 years ago I finally got a diagnosis and found out that after all this time something could have been done years ago.

I’m not a doctor so I don’t know what is going on but your symptoms sound remarkably similar to mine.

best of luck and I hope you find some relief soon

[TheWayfarer]

Hi stormcloudz,

I definitely can relate to that. I'm trying to wean off looking to health professionals for moral support since I know eventually I will have to have to build some confidence and inner strength to face my fears. They often leave me a little bewildered and although tests come negative (which should really give me peace of mind), the anxiety is still a very all encompassing part of my days.

That's definitely what makes anxiety so frightening. I still don't know how to gauge whether it is anxiety or if the physical symptoms are much more sinister - thus the trips to the ED and the countless tests I've done to sort my issue out. The chest pains, the constant exhaustion, the coughing and regurgitating after I eat, the panic that happens after I eat or drink, the constant sore throat, the headaches and neck pains. I've read online and it feels like anxiety so many symptoms - it gets so confusing. At times I feel like my body is at war with my mind.

I ended up contracting a really bad viral illness the week before I was scheduled to have my holiday that I planned with my friend a year in advance. It would've been my first holiday ever... and I really feel like I let my friend down and due to my financial situation and my health - I'm not sure if I'll ever get to go.

The virus also set me back on my progress when it came to eating food. Now I'm back on liquid nutrition and I know it's really frustrated the medical professionals I've seen. It's gotten to the point where I've looked for clinics that hopefully allow you to build your confidence with your swallow and getting you back to eating healthily... but apparently they are all super expensive without private health insurance.

I know I must be positive, but being all alone and seeing my family struggle while being helpless to aid them is very, very difficult.

I used to write creatively a lot - but I've found it takes a lot of emotional toll and I can barely concentrate on tasks lately - and it requires a lot of focus. These days I've just been trying to find humour in things or do some photography when I can get out of the house. I look forward to getting to know everyone here and I hope you all don't mind me too much.

[TheWayfarer]

Hi Scruffy1,

I'm worried about all the radiation I've been getting recently and all the blood work. My arms are all really bruised (even the experienced nurses have trouble finding my veins) and the extensive wait at the hospital waiting rooms get me all dizzy and make me miss out on possible times to get nutrition down. I've had to tell what I've been going through every single time and it just seems that when the tests are clear, they just want to kick me out and they don't give me advice on how to treat anything.

I told my GP about the chest pains and even when I was at the office experiencing the pains, he told me it was pointless to get a referral to a cardiologist. I'm going to email and contact cardiology offices about this, but I expect them just to say that I need a referral.

I can't imagine experiencing these symptoms for over 20 years. It's so horrible. Just today, I had really bad chest pains but I followed my GPs advice to try and calm down and that they'd pass. Fortunately today, that happened, but the previous times where I tried mindfulness and many other things discussed with my psychologist, the didn't.

Thank you so much for your well wishes. Talking about it really does help.

[TheWayfarer]

Just in case there were people reading and wanting updates on my progress -

I have started to try and have solid foods in my diet again. I'm starting with soups and sandwiches. Still not enough in terms of calories (I'm still losing weight), but it's progress.

I spoke to my psychologist and we discussed a residential care facility to try and practice therapy techniques and getting my health back in order. There's probably little chance for me to be placed in one - but I wanted to ask anyone who has happened to gone through this; how was your experience at a residential care facility? What can I expect if I were to be admitted?

I'm really, really nervous but if it's necessary for recovery, I'm happy to do anything. I'm finding it really difficult panicking every time I'm eating or drinking - and having massive coughing fits and chest pains and getting really scared to drink even though I'm really, really dehydrated or thirsty. I want to get my life back in order.