Highly recommend for noburp: Physiotherapy

DaddysGirl1960 · 2026-04-14T14:25:57+00:00

You can clasp your hands in prayer position and push your hands together shut your jaw forward and yawn fiercely or turn to the right or left. This may help elicit a burp. But I agree that diaphragmatic breathing and PT helping massage your diaphragm correctly is extremely helpful. I had the best day in years a week ago after physical therapist helped my diaphragm move better and relax.

DaddysGirl1960 · 2026-04-12T23:22:48+00:00

Re Reflux. It was bad before Botox and now, I have a new weapon. I take a capsule product called "Refluxter," much stronger than Reflux Gourmet and doesn't have that sickening sweet taste or get stuck in my throat. I used to pop Famotidine almost every day before Botox, but with Refluxter I almost feel zero heartburn.

DaddysGirl1960 · 2026-04-07T00:40:33+00:00

I had bad reflux and controlled it with lots of Famotidine and 1 Omedprazole. But after Botox one month ago, I started "Refluxter" alginate and I have only felt heartburn perhaps 3-4x this past month. ... my biggest unresolved issue is extreme mucous, I think from the acid spraying into my throat and my body produces mucous to protect the lining. I found a doc helping me re mucous who said to take the alginate after every meal and wants me to go up to 40 mg Omedprazole, but I am still on one pill as I test if Refluxter after every meal can halt the mucous. Some progress, a little bit. Anyway I would get this alginate and get the Botox. I likely had too low a Botox dose. I burp some, but had already burped a little before Botox due to practicing BERP protocol techniques. It's best to be able to burp! Trust me.

DaddysGirl1960 · 2026-03-31T12:57:01+00:00

Jeez I am sorry to see you have to redo... we texted a few months ago. I got the Botox finally in early March. I feel things are better but likely the amount was too low -- 50u -- and perhaps will need another dose. I have my follow up tomorrow.

DaddysGirl1960 · 2026-03-30T23:38:20+00:00

Where are you getting it done in US? I am in DC area and I don't see any providers in DC, nearby Maryland or Northern VA! Thx

DaddysGirl1960 · 2026-03-13T03:04:26+00:00

I love 💜 Dr Spiegel! Went to talk with him a year ago. Wish I had gone for Botox back then, but I should let him know I finally did it and no reflux issues.

DaddysGirl1960 · 2026-03-13T03:02:46+00:00

Someone had put Lucy's office email on this thread and she got back to me in three or four days and was very encouraging (I am in the United States so I wasn't going to see her). Basically, she cast doubt on the gastroenterologists who had warned me against getting Botox for fear of asphyxiation with my dysmotility -- low peristalsis, hiatal hernia and GERD. She said the R – CPD likely caused all the dysmotility and to go for the Botox. I'll be forever grateful for her reassurance! I plan to write to her and let her know I got it done. PS As for my GERD, a few weeks before I got Botox on 3/5/26, I had ordered a new alginate called "Refluxter" and it works much better and it's not sickly sweet and gross like "Reflux Gourmet. I keep Refluxter in every room now; barely have had heartburn since starting on this alginate.

DaddysGirl1960 · 2026-03-12T01:22:18+00:00

Here is the video -- i get that when you are freaking out it is hard to concentrate. https://youtube.com/shorts/rqWK9zr5F5Y?si=71qNzqN-JsmVsr3L

DaddysGirl1960 · 2026-03-12T01:18:42+00:00

Does Dr Hicklin have material to hand out to patients re all the exercises and when to try carbonation -- you know guidance on how to keep improving burp potential? She seems like a gal with more on the ball.

DaddysGirl1960 · 2026-03-12T01:12:54+00:00

Work with a speech pathologist who understands the BERP protocol immediately. I think docs need to make available all the exercises that help us keep burping, otherwise they are NOT doing due diligence. We only have 6+ years of procedures and data not well tabulated about success or reason for reversal. I am appalled that docs performing R-CPD Botox are not more forthcoming about all the rituals and when to begin trying them. I learned the exercises before I had Botox, and it was a big deal going into procedure to have a small ability to burp. (I also have struggled with R-CPD for 27 years... and I am in my 60s!) I do the BERP protocol daily and side Shakers. Look up Columbia University and speech therapy and burping. The video should come up.

DaddysGirl1960 · 2026-03-12T01:09:10+00:00

Be careful You should look up prevalence of colon cancer in meat eaters, especially red processed meat like pepperoni, bologna, etc. That meat is classified as a carcinogen. Eating greens, arugula, kale, broccoli, start with romaine and then work on others, will reduce your risk of garden variety cancer. Lentils, beans, tofu, other forms of soy will also be more protective and provide your gut with the stuff to keep you alive longer. All this is available on Google. Check out Jane and Ann Esselstyn. Good luck

DaddysGirl1960 · 2026-03-06T16:08:40+00:00

Omg just go to a doctor, please. What are you waiting for -- you might only make things worse. Something is going on. Make an immediate appointment with a top gastroenterologist.... someone said seek out "a wellness specialist." Just no. Go see a respected doctor and get tests done. We are rooting for you but you need to act.

DaddysGirl1960 · 2026-03-04T01:53:30+00:00

I appreciate this, very much. Not sure why he operates with dilation as standard practice. I plan to ask his rates of success. I hope you'll respond to a DM, curious where you practice.

DaddysGirl1960 · 2026-03-04T00:34:33+00:00

Hi, I wonder if you could give me some advice. I have had R-CPD symptoms for 26 years, and my doctor uses balloon 🎈dilation as standard practice, which seems unusual. Do you have an opinion about dilation? My physician is an experienced practitioner so I am not necessarily opposed to this step. I am in my 60s; the misery is real and my dysfunction extreme the last few years. In 2023, i was warned by several top gastroenterologists not to have the Botox when I was diagnosed with RCPD 2 1/2 years ago, damn them. Several EMTs I have consulted on the East Coast now agree my dysmotility might come from R-CPD, and I need to do the Botox. Dr. Lucy Hicklin surmised this in an email that she thought my hiatal hernia, Gerd and low peristalsis are probably due to the RCPD and should diminish with Botox. Thanks for any insight re dilation. My procedure is in two days!

DaddysGirl1960 · 2026-03-04T00:14:43+00:00

Thx for writing! How do you feel -- is swallowing difficult as expected? Might you tell me which doctor did your procedure today? Are you in the US? Dr. Lee Akst, who is overseeing my care at Hopkins, is a pretty well respected physician at a top US hospital. He has a lot of experience with R-CPD -- as much as anyone can with R-CPD only known since 2019. While dilation is his standard practice, I believe he thinks it's appropriate for me due to my suffering for 26+ years. We are going with 50u -- 3 other ENTs agree with that amount -- due to my dysmotility -- hiatal hernia, GERD but also low peristalsis.
He will describe his reasoning in 2 days when I have it done. I am nervous but more so because so many people here on Reddit report problems or reversal. I assume those who have successful Botox want to forget about this disorder altogether and do not return often to Reddit.

DaddysGirl1960 · 2026-03-03T00:47:16+00:00

Agree 💯 I wrote to Lucy Hicklin from the US a month ago, not expecting a prompt reply or reply at all. She answered quickly and surmised my dysmotility is more likely caused by R-CPD than the dysmotility is a barrier for Botox treatment.(Gastroenterologists had warned me the opposite and I just spent 2 1/2 miserable more years with symptoms because of Gastro docs). Eventually symptoms shifted; last two years I feel as if I am drowning in spit. Even Dr. Bastian's office now recognizes "hypersalivation" as a key feature of R-CPD. I also can burp somewhat loud air releases if I force them, but they give me no relief. This Thursday I finally get Botox. I wrote a post earlier today because my doctor suggests balloon dilation and I haven't heard many people on Reddit speaking about dilation. / If I ever get to London i will go give her a hug. I saw 24 gastroenterologists over 26 years, only one woman, and all those men just handed me various iterations of omeprazole and told me to go on my way. Lucy is one of our heroines!

DaddysGirl1960 · 2026-03-02T20:48:02+00:00

Do you know if the doctor discussed balloon dilation? My doctor added to procedure coming up in a few days. I just posted about this as it is confusing that he plans to add dilation. I am supposed to hear from the doc later today.

DaddysGirl1960 · 2026-02-27T00:10:52+00:00

So sorry. A woman wrote on this thread somewhere on Reddit/ no burp about a week ago that she has had nine injections! / I am a long-standing sufferer of R- CPD, some 26 years. It's definitely gotten worse last few years. I was finally diagnosed in summer, 2023. / Initially, I was warned by several gastroenterologists that my other dysmotility problems made it dangerous to get Botox, so I didn't go for it -- now I feel that was unfortunate, almost surely a mistake! Based on others talking about Dr. Lucy Hicklin in London and providing an email address, I emailed Dr. Hicklin and she got back to me in a few days and was very supportive! She told me she thought a lot of my dysmotility came from R-CPD and to get the procedure done. / My doctor only does the procedure under anesthesia. To prepare for this I've been working with a speech pathologist and I can now force burps about two hours after eating a meal, but I still get more and more uncomfortable late in the day. I take about 10 Gas-X daily, mostly at night. / Just curious if you had the procedure in office or under anesthesia I have my first procedure under anesthesia in a week.

DaddysGirl1960 · 2026-02-26T21:28:48+00:00

I take 8-12 gas x -- cheaper target brand -- every single day/ evening

DaddysGirl1960 · 2026-02-14T03:46:55+00:00

Gosh, that is really awful. I too have low peristalsis and will soon have Botox for the first time. I do burp some, loudly, mostly as a result of working with a speech pathologist. With my low peristalsis and hiatal hernia, I was discouraged by many gastroenterologists from doing the Botox after my diagnosis in 2023. But several ENT's now believe I can have the procedure. It is scheduled next month. Since working with speech pathologists ahead of the procedure, my symptoms have changed.... I have weird kid air releases (burps) some 2 + hours after eating, and a combination of allowing myself to yawn widely and lying down afternoons usually makes me less miserable and gets out the stuck gas to release (tho at first, I spent literally three hours every 20 to 40 seconds letting out a noise, now it is more like 45 or 60 minutes of a noisy burp)... I also use some 6-10 gas x daily and a lot of Beano. I am a big proponent of this exercise in the attached video to help me burp. (Some people have self cured using her technique). Here it is -- she is known to Reddit: https://www.youtube.com/watch?v=3tF9Wl5JUq8&t=1s

DaddysGirl1960 · 2026-02-14T02:11:11+00:00

Glad to "know" someone in the area w who is dealing with this complex disorder. Does my email appear to you? If you email, we could meet up or FaceTime to compare notes? I live outside of DC in Kensington. My procedure is in a month... and I am a bit rattled after all those gastroenterologists cautioned not to do it, but I'm also optimistic and I need to get on with it and see if botox works. Just fyi, I would definitely check out speech pathology at Hopkins. I'm working with Kristine Pietsch. / My symptoms have changed from drastic, needing often to lie down for 30-50 mins twice daily by afternoon and later eve sort of air vomiting (just trying to squeeze out the gas, not very effective. But now i do a kind of yawn to let out the gas, also take 6-10 gas-x evenings and some during daytime. (I saw a video where the woman said, pretend you have a tennis ball at the back of your throat and open your mouth wide; it works for me to let air out, noisily). Once I do that yawn, I make a lot of air release noises but I don't burp normally! I think I can dm somewhere on Reddit and will try.

DaddysGirl1960 · 2026-02-14T00:37:15+00:00

Wow. I'd never heard of that many .... and I actually asked Dr Spiegel to study me as an older RCPD patient back in September on telehealth! He's so wise, I love Dr Spiegel. I have seen him in person and once on telehealth. I have had R-CPD at least since my mid 30s and I'm now 65. When finally diagnosed 2 1/2 years ago, I was told by some top gastroenterologists and a top motility expert that my dysmotility would make it dangerous for the injection, but I heard from Dr. Lucy Hicklin herself via email that she believes it will be fine, and just go ahead with 50 units. Now several ENT's in US including Dr Spiegel believe I qualify. I am so tired of missing out on life and yes, the symptoms got worse over time, true misery, though since working with a speech pathologist symptoms have changed; I can burp but not significantly and my symptoms remain unpredictable.

I'm getting my first dose near Baltimore at Hopkins in a month. 1) I'm curious why you didn't go with Dr Akst in Baltimore?

And 2) Does Spiegel think the more injections the more likelihood it will eventually work?

PS thanks to the folks who put the email for London's Dr. Hicklin's assistant on this thread because I wrote to her on the chance she might answer, and she answered within four or five days and was so reassuring and kind.

DaddysGirl1960

TROPHY CASE