Finally got referred to an ENT. What’s your experience from it, what to expect now? They don’t offer the botox where I live and probably not know a lot (if anything) about RCPD, but which tests are they doing?
How was the time after the botox? Was the reflux manageable? Has it gotten better or worse? My emetophobia is so bad and i’m so scared that my reflux is going to get unbearable. (Sorry for my bad english)
Sometimes I get this bitter taste in my mouth for about 1-2 seconds. I get this when I swallow, maybe i’m swallowing ”harder” than usual. But it quickly dissapear when I’ve swallowed. I’m not sure if this is a common symptom. I have acid reflux but i’m currently on omeprazole and still get it. I don’t get it, how is it possible I feel it in my mouth when I have RCPD? Anyone else have the same experience?
I have this a lot nowadays and don’t know what it is. I’m on omeprazole for acid reflux rn. Is this a common symtom for RCPD or do I have a hiatus hernia or something? I’m scared it bothers me a lot.
Backstory - I’m a 23-year-old woman, and I’ve had RCPD for as long as I can remember. I couldn’t even burp as a baby. It’s never really caused me major suffering aside from excessive gas, occasional painful bloating, and hiccups after eating. I’ve also struggled with bad breath, though I’m not sure if that’s related.
On top of that, I’ve had severe emetophobia since I was 8 years old, and it has escalated significantly in the past few years.
Last year, I started experiencing acid reflux, and now I feel it almost every day. It’s mostly a burning or warm sensation that I can’t quite locate, eighter in my throat or high up in my esophagus. Sometimes it feels like something is moving upward in my esophagus, but I don’t get acidic liquid in my mouth. Occasionally, if I swallow more forcefully, I notice a bitter taste in the mucus I swallow, but that’s rare and disappears after one swallow.
I don’t understand what’s wrong with me. No one in my family has reflux issues, and I never had anything like this before last year. That’s what scares me the most. I’m terrified that I might have a hiatal hernia or some kind of physical defect that I’ll have to live with for the rest of my life.
Omeprazole helps a little, but I’m afraid to take it long-term. I’ve been using an IQoro device for four months without noticing any improvement. I’ve also tried Gaviscon, but it doesn’t seem to help either, and I don’t understand why. Other antacids don’t work eighter.
It’s hard to explain how much this is affecting me mentally. Because of my emetophobia, this situation is overwhelming. I feel extremely low, and at times I don’t feel like I can go on living like this. The uncertainty of not knowing what’s wrong, whether it will get worse, or if it will eventually make me vomit is unbearable.
I used to love cooking, but now I feel no joy in it because of the reflux. In fact, I don’t feel much joy in anything anymore, it truly feels like it has ruined everything.
I’m too afraid to undergo tests like a gastroscopy or manometry because I’m so scared of feeling nauseous. Even if I were sedated, I’d still be afraid of feeling sick afterward. I don’t know how to get through this.
I spend hours every day googling my symptoms, trying to understand what’s happening, but it feels like I have to figure it out on my own. Doctors here don’t seem to know about RCPD or understand the full picture. At the same time, reading online makes me even more scared because many people say that RCPD only gets worse with age.
I’m also terrified of trying Botox treatment, since I’ve heard it can worsen reflux, and I honestly don’t think I could handle that. On top of that, I’d have to travel far to even access it.
Right now, my only hope is somehow learning to burp or that it will happen spontaneously one day.
My life situation feels awful. I’m only 23, living at home, studying remotely, and I barely leave the house, only occasionally to go to the store with my parents. I’ve had panic attacks before, and the reflux has made my mental health so much worse. I’m constantly afraid of symptoms starting when I’m not at home, and that’s often when they do.
I feel so alone in this. I don’t have anyone to talk to who truly understands, and it’s incredibly heavy to carry.
I don’t know if I’ll ever get out of this, or how.
Is there anyone with a similar experience, or who can offer even a little bit of hope? Is there hope at all?