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Hello All, how are you all doing? At this end i am feeling rather emotional having just discovered the condition ‘Roemheld syndrome’ and am wondering if i have it..
I have been feeling my heart stop followed by a sever dizzy spell followed
by a few heavy heartbeats with a head rush then back to normal, this happens when swallowing (food feels stuck, just before stomach) or burping for want of a better word!
I went to my Dr on more than 1 occasion and was always told to do more exercise
and sent for a ECG that always comes back normal…
I changed GP and when i mentioned these symptoms to my new Dr, she sent me for a 24 hour ECG monitor Hotler Thingy! And after returning the device I received a call from my GP asking me to come and collect report and go strait to Hospital :0
They discovered I get 3rd degree AV heart block lasting between 2 and 7.2 seconds!
I received a pacemaker but while I was in hospital to have the procedure I was hooked to an ECG Monitor for a few
days and could tell when the AV Heart block was about to happen… After I swallow food of burp… I mention this
to the cardio dr who said: “I cant stop you from swallowing food, you need this pacemaker.
Sorry for the long winded post but am wondering what you all think with re to my symptoms and ‘Roemheld syndrome’. I am due to see a gastro Dr for some further tests next week… I have already had a Endoscope (+6 biopsy’s) which all came back clear. On this visit i am to undergo a particular test that involves a tube being inserted into a nostril and down into my stomach which will then measure contraction of oesophagus? And a 24 hour acid monitor…. I am scared as nobody seems to believe me when I say that my Difficulty swallowing food AND 3rd degree AV Heart Block that I experience ARE INDEED LINKED. 100%
any thoughts will be very much appreciated

Thanks :)
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Youness a few seconds ago
Hello All, how are you all doing? At this end i am feeling rather emotional having just discovered the condition ‘Roemheld syndrome’ and am wondering if i have it..
I have been feeling my heart stop followed by a sever dizzy spell followed
by a few heavy heartbeats with a head rush then back to normal, this happens when swallowing (food feels stuck, just before stomach) or burping for want of a better word!
I went to my Dr on more than 1 occasion and was always told to do more exercise
and sent for a ECG that always comes back normal…
I changed GP and when i mentioned these symptoms to my new Dr, she sent me for a 24 hour ECG monitor Hotler Thingy! And after returning the device I received a call from my GP asking me to come and collect report and go strait to Hospital :0
They discovered I get 3rd degree AV heart block lasting between 2 and 7.2 seconds!
I received a pacemaker but while I was in hospital to have the procedure I was hooked to an ECG Monitor for a few
days and could tell when the AV Heart block was about to happen… After I swallow food of burp… I mention this
to the cardio dr who said: “I cant stop you from swallowing food, you need this pacemaker.
Sorry for the long winded post but am wondering what you all think with re to my symptoms and ‘Roemheld syndrome’. I am due to see a gastro Dr for some further tests next week… I have already had a Endoscope (+6 biopsy’s) which all came back clear. On this visit i am to undergo a particular test that involves a tube being inserted into a nostril and down into my stomach which will then measure contraction of oesophagus? And a 24 hour acid monitor…. I am scared as nobody seems to believe me when I say that my Difficulty swallowing food AND 3rd degree AV Heart Block that I experience ARE INDEED LINKED. 100%
any thoughts will be very much appreciated

Thanks :)
Reply

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I am with you , i feel the same way for 7 years after 2 Haital hernia surgerys , its only getting worse , no one seems to know whats my problem , ready to take the gas pipe , so much foe the medical profession, a bunch of prescription writers and test presrcipers, I could have been a DR. with a high school ED. AL Leone
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I have a neuromuscular specialist that has been touted to get rid of hiatal hernias 100% by just visceral massage manipulation. I found him through my naturopath medicine doctor who has sent at least 10 patients of hers to him and all have been cured of their hiatal hernia. I have unfortunately only been to him once so far as he is very busy and booked out, but will definitely continue with him and see if I can somehow get into him much more frequently. I could care less if I have to pay a little more. I keep having breathing episodes I thought it was silent gerd and typically occurs worst in the morning after lying down at night and I figured out that the episodes always occur within about one to two hours after eating, and figured out on my own that drinking water and then burping relieves my issue. I too feel at times my heart stop and then heavy heart rate especially if I bend over so it's obvious the pressure bending over is not helping. Surgery I have only been told makes you worse. It's not surprising to me because I have Chron's disease and my gut is not in good shape. I had a foot of my terminal ileum cut out but it wasn't till I started having GERD then they gave me a PPI that my gut situation got even worse. Now I have too little stomach acid, nutrient deficiencies, high need for digestive enzymes etc etc. I couldn't believe it when I read the first part of this syndrome in the Fix your gut article. I literally cried! Finally an answer.... I also had suspected Vagus nerve issues since I have several autonomic issues but yet have done a POTS tilt table test three times with only a limited autonomic neuropathy diagnosis. However today after meeting with Mayo AZ PA she suggested a test for Hyperpenia as well as a Vasval something test which both kind of make sense. I also unfortunately have a double MTHFR mutation so that makes me at even more increased risk for a heart attack or stroke. I am starting back Salmon fish oil and going to start taking CoQ10 and anything else I can do to protect or help my heart. Probably also take Reservatrol. I ironically had an episode today at Mayo and the nurse was like your pulse is 98 but that doesn't mean you don't have a medical issue. Finally.....someone who believed it wasn't a panic attack. She even suggested that it might be cardiac in nature. She was more onto it then even the Neruo PA. A bit scary as my dad has heart disease and a stent and a heart attack already and his dad died of the widowmaker before I was even born. I had been having a lot of symptoms related to heart failure and it still worries me because this can lead to heart failure. I have only been experiencing it for about a year and a half these episodes and they seem to come in waves. I have noticed this time that I think some of my triggers occur due to histamine responses especially anything with citric acid in them. It takes me days to recover. I was getting more or them after I had to do GI prep pre colonsocpy, and video capsule clean out's and I realize now it's because they contain citric acid. The acid seems to trigger them for me. I also think my body is way too acidic since my stomach gastrin is not high at 14. So I definitely think acidity and histamine/mast cell activation disorder also plays a role. I have already been diagnosed with mast cell activation disorder, vocal chord dysfunction, and esophagitis. I am not 100% sure of the whole vocal chord dysfunction as if I sniff or swallow really hard I don't seem to think it does anything. It only seems to help when I swallow water and then get my body to burp to release that built up gas. I also this week drank some G2 which was stupid but I did so to try to get rehydrated and felt awful ever since I did this. The bad thing is I am supposed to do a repeat video capsule on Friday which means I have to drink the citric acid prep again on Thursday night and I really don't want to have more episodes. I do the Prepopik one and it's really the best one of them all as your not drinking gallons of the prep just two 8 oz cups. Anyhow I now have other hormone issues as well as hypoglycemia and nutrient deficiencies and I am sure most of which is all caused by my gut. Not sure about the hormone issues but I figure if I am missing nutrients etc then your hormones also probably depend on those things as well. I have been looking for so long in total 3 years for all my answers but I feel lucky today that at least I have part of the puzzle revealed. I kept telling my parents I felt like I had either a lung or cardiac issue and that I felt like I could die and/or several times now. Just so you are all aware when I have had these episodes at times I find that my oxygen levels dip down to about 89% temporarily and that I feel much better and lasts not very long as long as they give me oxygen. Sometimes though it occurs and my oxygen levels on pulse ox show fine. If it happens to you try asking for oxygen and see if it helps. I am wondering if it's somehow pressing on a nerve or vein that cuts off blood supply also to the lungs or possibly really the heart but still produces breathing issues? That part I am not super sure of. I so thought it was all silent GERD but it really seems spot on with the symptoms of this syndrome.

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Yes, I’ve suggested that my Afib occurred after a meal or when I have gas or overeaten the wrong food. One Cardiologist made fun of me and said I was just getting old. The next one totally ignored me. Gastro Dr seemed to understand, but dropped the conversation and went on to the subject of the colonoscopy for which I had been scheduled. My primary had NO IDEA. I have now decided I have Roemheld-Syndrome. But who ever even heard of it. So what good is the knowledge. I need to concentrate on my digestive tract. Keeping it as clean as possible. No caffeine, chocolate, small meals, no dairy.
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Thank you so much for this information. This has helped me feel better.
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