hey besties. So I have this weird swallowing thing where food but mostly water will get stuck before it gets to my stomach and my heart rate will drop between 20-40 bmp until it passes (i.e. bmp 90 *gets stuck* drops down to even low 40s *passes* starts going back up to where my hr was). I had a swallow study and couldn’t finish because I got sick after every sip. I have general gi yuckiness going on (vomiting, nausea, pain, diarrhea, bloating) I’m waiting for doctor’s appointments but I’ve been trying to do my research. At first another Dr. and I were thinking possible gastroparesis but I also looked into MALS and saw that pain can be reduced when one leans forward. I started trying to do that when I got food or water stuck and it’s been helping it pass faster… anyone with MALS (or anyone else) experience this? I’ve lost 20 pounds in the past few months and this isn’t the vibe. thank youuuuu 🦓❤️
Nausea and Vomiting
Ehlers-Danlos Syndrome (EDS)
Postural Orthostatic Tachycardia Syndrome (POTS)
Irritable Bowel Syndrome (IBS)
Hey girly! I have the same thing (I have MALS too) but what you’re explaining sounds more like what I get from my eosinophilic esophagitis… try looking that up and see what you think. They diagnose it by doing an endoscopy but it basically makes it feel like you can’t swallow ANYTHING even water. Horrible. What helps me is eating smaller amounts spread out throughout the day and softer foods. Starches and carbs are the hardest to pass (bread and potatoes, etc.) but just chew twice as much. For me when it gets really bad I have to eat alone in a room and really focus each time I swallow and like squeeze my neck muscles while I swallow. They put me on Dupixent which actually helped the swallowing but it wasn’t worth all the side effects so I stopped. MALS symptoms wouldn’t affect swallowing so much, more stomach pain and nausea/vomiting once you’ve eaten (not immediately). The low HR sounds like it might be from the POTS or EDS. I get a high HR (around 160) after eating with a low BP and I thought it was due to MALS but my doctor said it probably more POTS/EDS related. Not sure if he’s right… UGH girl these conditions are so annoying it seems like when you get one thing under control something else gets crazy. I always drink a ton of electrolytes and salt and it helps. But if you’re having issues swallowing I would tell your GI doctor so they can figure something else out. I was also unable to do the barium swallow study because I vomited all the stuff out too (hate that test, they need a new way to do it) but there ARE other ways to test diagnose and get help, don’t let them tell you there’s not. Maybe try a PPI and some zofran. You can also try Reglan to speed up your gut motility. But make sure to stay on top of it! It’s a slippery slope between now and getting a feeding tube. Btw i have literally 0 advice for diarrhea lol I am 25 and have found no way to control the downstairs stuff lol AHH. Anyway, sending you lots of love and hugs and just know you’re a tough cookie!! You got this!!!
I forgot to mention, meat is probably the hardest thing to swallow besides bread so be careful with that. And you should go out and buy pediasure nutrition drinks! They are high calorie and if you can get one down a day you can maintain your weight better. They are life savers
Omg hi I appreciate your response so much and I will definitely mention that at my upcoming appointment and be more mindful with my chewing and swallowing! Thank you for the good vibes, you’ve got this too ❤️
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