LPR for 15 years and counting

Hi, my name's Duncan and I'm 26, studying at university.

When I was very young (I think grade 2 at school), i had pertussis, also known as whooping cough. I had it for about 3 months. When I came back to school I noticed that I required deep breathing at least three times a day. It was OK though because I was a kid and full of energy.

I was fairly unwell during junior high, but I required open mouth, deep inhaling almost constantly (up to twice a minute) by grade 12. The real problem is, I can't always catch my breathe and I am left without oxygen. The doctor didn't have a clue what was wrong, they tried lung capacity tests and heart ultrasounds. They put me on antidepressants and gave me a few CT scans. They even admitted me into the psych ward for a little while, because it had been 8 years with this condition and I was actually suicidal.

Then I changed address and changed doctor, and he asked me if I had difficulty swallowing. I had never connected the two things but I do have trouble swallowing water. So I did a barium swallow test and it showed an hiatus hernia. I then did an endoscopy and it showed oesophagitis and hiatus hernia. This was only 3 years ago, it took a very long time to get diagnosed.

I changed my diet immediately and went on Nexium. I'm doing better and sometimes I go weeks without breathing problems, sometimes I even smile. However, if I eat one thing wrong I am in bed for 3 or 4 days for my throat to repair after the stomach acid goes into it. My stomach acid seems to go all the way to my airways, throat, and into my lungs. But the really weird thing is, when I get reflux, my brain starts tingling and I get really bad headaches. It's doing it right now actually (because of the flavoured milk I had, I think), so I apologize if my writing seems a bit haphazard. It's getting really scary and I feel like over such a long period that I might be getting some brain damage. Has anyone heard of this happening before?

I am on the waiting list to go on the waiting list for a nissen fundoplication and I don't have private health cover so that will take years and years. My diet is getting increasingly restricted and it is very difficult to remain disciplined. But NOTHING is worth the pain I experience when I get acid reflux. I have my go-to food that sooth my throat and stomach - porridge. I have porridge every morning, vegemite on toast for lunch (I'm from Australia) and non-citric fruit, and meat/veggies for dinner. I can only drink water, milk, and sports drinks such as powerade/gatorade.

Thank you for listening to my story, I had no idea there was a community forum for this kind of thing. There aren't many people who understand my situation, including doctors.

Don't let it get you down. You have to learn to live with the symptoms ( for most people drinking milk is NOT a way to deal with LPR btw, since it only makes it worse) and find hope in the fundoplication surgery that you're going to have. Try working out and see a good GI doc. Good luck!

Hi, I'm also 26 studying in university. I totally empathize with you. Although I haven't had LPR for my whole life (developed it 6 months ago), I understand how devastating it can be to have this condition at our age. This is the time in our lives when we are supposed to be the most productive: going to university, developing relationships, working, traveling--and living life to the fullest. But because I feel so crappy all the time, all I want to do is crawl into bed, and go to sleep just to make the pain and suffering go away. For months, I have stopped working, going to school, and seeing my friends. It's so frustrating when my family goes out to restaurants to eat. They order all this food that is greasy and fatty which they love to pig out on---while I struggle to eat a small healthy salad. I get a searing chest pain and acid gushes into my mouth which burns and tastes like warm vomit. It really makes me lose my appetite. I have lost 20 pounds over 6 months. This is largely why I don't want to go out to eat with my friends anymore. Although I'm sure they would be kind and understanding about my condition, I don't want to feel different, or abnormal, or embarrassed. All day I sit on the couch, and try to distract myself with television shows or books. Sometimes I take slow long walks after meals to try and calm my mind (also helps with digestion). The sad part is, everybody close to me tells me to just 'get my mind off it', and 'keep living my life'. I think it's easier said then done, and for those who never had this disease, could never fully understand. A tiny part of me still hopes that the symptoms will get more manageable soon, and I'll be able to start living a more meaningful and happier life. I am currently seeing a GI specialist. The whole process has taken such a long time. So far, I've only had two tests done. Going this Friday for a follow-up. Literally haven't been given any treatment plan so far. Hope this doctor knows what he's doing. It's crazy how you try and tell yourself..well there's other people who are suffering more. There are people who are literally in the hospital dying of cancer as we speak. You would think acknowledging this fact would help put things more in perspective, and make you grateful for the things you do have in this life. But I think sometimes we can't help feel what we feel. Right now I feel sad, frustrated, and angry...and grief. I am grieving for the past. I used to be able to do all these 'normal' things which I can no longer do. I hope as time goes on, these emotions will change and become more positive..but for now, I just keep waiting each day for improvement in my symptoms.

thanks for the tips gtot, i'll try to get milk out of my diet because of the longer term effect that you stated, but porridge will still be my best food, it feels like I don't have LPR for a little while. I'll try to actively exercise if it has helped you and, but I find it hard to improve your posture and stay relaxed at the same time. I've also been on double dose of Nexium for awhile but my GI specialist says that even just one/day can be very harmful to your body over the very long term.

thankyou for understanding my problem refluxmcgee, although our symptoms are somewhat different, it sounds like you have GORD as opposed to LPR. It is scary when you first get it because it is a very long lasting problem until you either stop it with PPIs altogether, get surgery, or have a perfect diet/exercise routine. Unfortunately, I don't really have a past to remember, as I got mine in junior high, which is really really early. I am a completely different person because of it and it has affected my current position in life absolutely. The people who know me best think that I am just lazy and unhealthy. I hope your symptoms don't persist too long refluxmcgee. By the way, LPR is more when you start aspirating the reflux back into your lungs and the acid blocks airways. It's more like a constant living hell hole. I woke up better today though, I tried something new with my diet and it didn't work. It takes me about 3 days to recover, I'm guessing that is how long my throat takes to repair. If I do that a few more times, I'll probably get Barrett's throat. Like getot, I rarely get heartburn, but I do get mouth vomit sometimes, and I also get painful stomach cramps.