GI Disorder and Internal Shaking

Posted by gigiraj @gigiraj, Feb 15, 2019

Hi all. I'm a 21 year old South Asian female and I have been having GI issues for about five years--mainly along the lines of constipation. I do have bowel movements every day but it takes a long time & I am rarely fully cleared out. These GI issues are always accompanied by other health issues (gas, pressure in head, etc). Recently, some scary new conditions have manifested: In the past few weeks, there have been times where my heart starts beating wildly and very fast. Sometimes, when I'm tired and constipated, my entire body feels like its vibrating internally; the shakes aren't visible but it feels like all my muscles are quivering. At this point, I feel a constant shaking/quivering within my body, especially in my heart cavity.

I have had TWO EKG's and both came back normal. All lab tests for diabetes, hypertension, cholesterol, etc came back within normal limits. I am very concerned about this internal shaking. My dad says he found something about how GI disorders can impact muscoskeletal system and since the heart is a muscle, it's contracting and being affected. But I wanted to know if anyone here can help!!!!!!! If anyone knows anything at all please please please let me know!!!!!

Interested in more discussions like this? Go to the Digestive Health Support Group.

@clutch

@rt061069 ,
I am curious what happened when you were "wigged out"?
Also, were you taking clonazepam during the esketamine treatments?

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@clutch i could take up to 4 , 1mg pills a day but maybe did two. Didn’t help. Wigged means one outer body not like not in skin. Light feeling. Shaking up and down in chair. For a bit like getting up after 3 big shots of tequila. Weird d thoughts. Wife was with me so told her old stories or something never said before. Lighted headed. Mind tripping some by looking at things. Scared some like hold my hand.

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@rt061069

@Debbie0895. I have had gi pain from pelvis to xiphoid and it’s mainly all down middle of abdomen about 3-4 inch wide path. Had it for 3 years and every month gets worse last 12 months level 7.5-9 and I know how to tolerate pain from bad headaches for 25 years. Could live with those because I could bring pain level down some when spiking. No pills really work. Once when trying buprenorphine at 20 mg broken down thru day to build up in system I had a good 24 hours. Then next day body couldn’t handle it and vomiting. Lost 40 pounds over 12 months but half of it since Feb. 3 er visits over last year. Their pain drugs do nothing oxy, morphine, dauladin, etc. now I’m last 4 months I added a LEG shake. Not at night but once I wake up. The pain wakes up immediately and I feel stress from pain, chest pain tightens but the two main pain areas are under around xiphoid and around and below navel to pelvis.

It hurts all the time. Not really worse with food but can’t eat any big portions. Weight loss in last 12 months due to appetite keeps waning. I had CT’s, mri, MRCP, ultrasound, blood and urine, ct enterography, main injections from pain clinic including celiac plexus block. Only block that helped happened in summer 19 on each far side of abdomen. She said it was illoinguinal and hypogastric block with steroids. Day later basically no pain for two days then came back. Mri of back and lumbar done. New gi doctor said see my surgeon friend. He found my hida scan a diff doctor did late 2019 had an ejection fraction rate of 95. Many folks now getting gallbladder out with only that note from test. No stones seen. He said that or could refer you to friend who can test for MALS. I had to go to ER again two weeks ago due to pain. Went to new gi doctor and surgeons hospital. Stayed one night and their pills didn’t work. Didn’t sleep one minute. I decided I couldn’t wait another month and out with GB. That was 10 days ago today. See surgeon for first time today. I still think end result I will have navel, pelvis and xiphoid pain. Maybe gb gone will finally help with appetite but will have to watch what I eat. I want to see pathology report. He said it had adhesions, inflammation, high pile back up and distended. I don’t know if it was right to remove but felt had no choice. I know our symptoms are not the same but your the first that mentioned Shaking. I believe mine and maybe yours is a release for the body. Mine couldn’t take anymore holding all up and I tend to shake and if planted rub my left leg and foot back and wear my sock out. My arms or head upper body doesn’t shake but leg or other leg depending on sitting or leaning in bed does most of time. If for some reason pain comes down a bit to an 8 it might stop shaking. That last day I felt pretty good in March with the buprin drug I didn’t shake the whole day.

I have tried a few anxiety drugs to no avail and many antidepressants. One psychiatrist tested me dna and doesn’t think it’s any depression. Yes I am totally depressed, it hurts to walk but that might heal more but it hurt before surgery or couldn’t walk fast. I call it a gut ache. It always aches unless sleeping which it doesn’t wake me from. Though once I get 6-7 hours of sleep there is no laying down. Too much pain so I rub feet and rock a little sitting up in bed. It’s hard for all pain sufferers as it’s their Life now. It’s hard to participate and you are tired of people asking How are you , any better. I told everyone I will tell you on med updates just text me about what ur up to or kids doing. I only want to talk to a few people now on phone. If you don’t live with this kind of daily pain you Can’t understand. Some people don’t get that.

Please post back more of your story on the pain, how long, how often, does it move around. I don’t have much acid but can get a lot of nausea and gives me a bad feeling up thru chest into neck and throat some.

I have had some virtual appts with Mayo gi in MN. They have recommended more tests to do at home first. They didn’t think gallbladder. I know this is not pain I can live with for years, it has to change. No one can live with constant pain daily. I finally for now eating 1000-1400 calories a day. For awhile it was real bad. I don’t feel like eating until around 11am-noon. I take low dose suboxone when I get up along with 150mg Wellbutrin. I also take zolpidem 10mg at night to help sleep.

I’m not winning yet but can’t give up yet, I can’t do that to my wife and children. It’s hard though, I get it and your frustration.

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An update and question for anyone with pain below navel down to waist line area. Yes I still have all the pain above navel to xiphoid but think on one side of the equation its two parts. The lower pelvic pain is getting worse. Over the last year I have been to a few urologists, went to one last week that basically blew me off. Its hard to find a doctor to treat a mystery or abdominal pain that doesnt tell the story with a CT of abdomen and pelvis with and w/o contrast. MRI done also. I can push right into the area of the worst pain, its about 3 inches down from navel in the middle of the pelvic area. When you push into my abdomen really anywhere down the middle it hurts but key points are the lower pelvis and midway up to xiphoid up the middle of abdomen. I asking anyone to reply please on pelvic pain. I am still in pain every waking moment. Its like there is a highway that runs top to bottom down the middle and the pain can travel anywhere on the highway but there is always pain lower and upper. Sometimes one out ranks the other for the highest pain level. When I push down in the middle of the pelvic pain area there is some kind of tissue or muscle that runs vertical up and down I can feel from lower pelvis to navel. I dont know what to call it and it might be normal but I would guess this is muscles and nerves. The pain can spread out at times along the waist line, so parallel, but the main pain for me has always been in the middle. If you push right in below the navel it will shoot the pain down the middle line to the lower pelvis. If you push above the navel it can go lower and go up the middle. The drugs I am taking or just my body is having constipation issues now on and off, more on lately. Though going to the bathroom doesn't relieve any pain. So today when pushing in the bathroom for a BM to come is like probably anyone else you are tightening up your abdomen to go. When I would push/tighten my abdomen the extreme level 10 pain ran right down the middle to the lower pelvis around my waistline. So the muscles used are right below the navel and there is pain there, but the focus was the pain that immediately shot down to that one area in lower pelvis. I have had urine tests and had a look inside my bladder and saw nothing. I have had but not in a while pain mgt injections to see if it would quiet the nerves. One time over a year ago I got steroids injected in the ilioinguinal and iliohypogastric nerves. The area as I recall was on each side/ a good 7-9 inches from the middle, at that time my highest level of pain was a 7, a day later the pain was gone in the bottom and must have did enough above the navel because I felt normal. It lasted two days and pain came back. Follow up was a genitofemoral block that didnt do that much. I did have a celiac plexus block and screened with a doppler ultrasound for MALS, block didnt help at all and even though I have the J line hook for MALS the blood flow wasn't constricted.

The pain occasional heads to my male organ but doesn't hurt so much as it can take feeling away. I am going to see a PT specialist a friend referred me too, its hard to believe that its pelvic floor syndrome and the pain will get better with doing exercises for pelvic floor disfunction. The only other part to add and its not all the time but it feels like the pain has a hwy from rectum to pelvic pain area. I really am stuck, other than my the one injection time the only other time I got relief and it was the first go around with this drug/Buprenorphine(subutex) a doctor had me taking about 4mg every four hours or so. Started on a Friday afternoon and built it up to a very high level by Saturday morning. My pain level went down to a 5 (good) but didnt help my appetite issue. I started losing my appetite a year ago and I love food but really picked up steam in December and then after going to the hospital to try and figure it out for days beginning of Feb 2021- the lose of appetite was very bad. So many days of under 1200 calories-I lost 22 pounds from June to Feb, then another 20 pounds by end of May. I have some nausea and feeling going up my throat at times but MRCP test didnt find anything, not really any acid but feeling some of the time that I have a lump in my throat. My GI guy who is stumped was good enough to run some tests Mayo MN GI dept recommended like a CT enterography and the test for MALS. I did see a surgeon about my gallbladder and he noticed from a hida scan done over a year ago that was said to be fine had in the report an ejection fraction rate of 94. More doctors are realizing that a high # can cause pain too. I had to try so had it taken out. It was diseased with inflammation and adhesions, all this helped was a week after surgery which happened 6/8/21 I started getting somewhat of an appetite. Though food still doesnt have any real satisfacton, the higher my pain level the more I dont want to eat.

Sorry for the lengthy post but I am at the end of my rope, my abdominal pain has taken all of my life way for at least 18 months with level 7.5-9 level pain and the 16 months before it was when I started to notice pain above my navel half way up was not going away, the pelvic pain started 14 months after the initial start. Every month it seems to get worse. I know rub my left foot mainly but depending on how I position my feet will rub the right one. I am wearing holes in my socks. When my pain is higher which is most of the time now my body seems to think this leg foot rubbing motion back and forth is a relief mechanism. IS THERE any places else to look for relief though on the pain below the navel/lower pelvis? I just dont understand if I can pinpoint the worst pain area down there with a few fingers pushing in why urologist and GI doctors are clueless. Pain Mgt at our top research hospital in St Louis is fairly clueless to abdominal pain, they treat more back, knee, shoulder pain etc. Can it really be all about PT, I did some a year ago but didnt keep it up that long? This is not pain one can live with for another 30 years, I'm 52 yrs old. Anyone else have pelvic pain below the navel around the waistline area, I figure over the top of the bladder? The doctors and test seem to all say my organs are fine and we don't see much of anything on the tests/scans. A low-attenuation cyst is seen lower pole right renal cortex that didnt alarm anyone. I had a hernia surgery 20 years ago which was on my left side about level line with navel, said there may be fat-containing left inguinal hernia. I would appreciate if anyone can comment about the pelvic pain. It doesnt go down my thighs and usually not in too much pain inside my inner upper thigh/hip area. Not sure again where I should be posting this, I did read a lot of the threads on pelvic pain but not really similar to mine. Thank you, Rob.

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@gigiraj

Yeah, same, I think it's definitely related to gas for me. It's definitely concentrated in the abdomen but for me it's a full body quivering. Right this moment, I hold still and can feel shaking in my arms that isn't visible on the outside. It's very scary. I'll ask about some of those medicines you mentioned.

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Hi, @gigiraj I've had most is not all of the symptoms you're having but they came about suddenly after my first anxiety attack. So, from what you're saying I think you may have anxiety from whatever personal triggers along with the constant worry you're having about your health all add to the anxiety and thus the symptoms. It was shocking for me to learn that anxiety can cause all those symptoms but it's true. It can do crazy things to the body, but it's just a stress response and nothing is actually wrong with you. So you have to break the cycle and find your triggers. It's not avoiding it, but the opposite actually. It's letting it run its course and not trying to stop it. Your body is just trying to help you even if it doesn't feel that way, so just let it.
A youtuber called Shaan Kassam has resources that really helped me understand it; a short report and other people's success stories.
The link is in the description and the best thing to note is that it can go away completely. Just understanding it all helped me a lot. Hope you're doing better by now.

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I too have gastro issues and internal quivering in my abdomen when laying down or relaxing on couch. I do not have them when sitting straight up or walking. Mine started with severe vertigo, vomiting, severe stomach bloating and diarrhea. After 3 trips to ER with treating symptoms only, I was told that my gallbladder was full of stones and had to come out. This was removed December 30, 2020. After gallbladder removal I dealt with severe diarrhea, pain and swelling on right side. Was treated for IBS, put on bentyl, zofran, tramadol, carafate, prevacid. Endoscopy showed severe gastritis. I do not drink and CT scan shows abdominal athesclerosis, fluid in abdomen. Colonoscopy - precancerous polyps removed. After colonoscopy I am dealing with chronic constipation and abdominal bloating, vibrations in abdomen and swelling on right side. Gastro Dr. tells me to take stool softeners every day which helps somewhat. I am able to eat small meals now but symptoms are still there but not as severe.

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@brayimee

Wow! I can relate. These sound like some of my symptoms as well. Do you by chance get weak legs? Bladder issues? All my pain and issues stay on my left side.

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I have all of these issues and weak legs and bladder issues as well. I also have pelvic prolapse, if it can prolapse it pretty much has, but none of those seem to cause the other issues, like the trembling rapid heart rate, pressure in chest/stomach that is relieved by bowel movement/gas mostly (That seems to get stuck everywhere).

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@gigiraj

@hopeful33250 and @kanaazpereira thank you SO much for your consideration and resources! I really appreciate it. It has confirmed for me that this is definitely originating along my gut-brain axis. I am looking into VZV as was mentioned in the article. POTS does not really fit but I am looking into it as well.

I haven't had headaches so much as a building pressure in my head that goes away when I passed built-up gas. I looked at @ calical's post about their seizures and luckily, what I am experiencing is nowhere near that severe. @ tigertoo's suggestion on Transverse Myelitis is a possibility (according to symptoms on John's Hopkins' website): I have bowel issues, my legs/arms can sometimes feel heavy/odd, and sometimes I have pain [more like soreness] in my lower back/hips when I've eaten but am constipated. I am also looking into Vagus Nerve Dysfunction as that is what fits my symptoms closest (pain in ear, occasional pain in vocal cords & hoarse voice = possibly due to acid reflux, unusual heart rate)

However, my internal shaking and increased heart rate has temporarily stopped! There could be a number of reasons why this is:
1) I had been anxious about my heart for two weeks. I went to the Emergency Room and started crying. After crying and having confirmation from the ER that I wasn't having a heart attack, I felt calm and comfortable so my shaking was potentially because of a buildup of stress and lack of sleep.
2) I started taking Miralax and Prevacid on the 14th as my doctor prescribed. Perhaps they are just now kicking in.

While I am glad my heart tremors have stopped, I am afraid that this is just another stop on the way to some disease I need to identify before it's too late. I have had a myriad of symptoms over the years, most of which I believe stemmed from my gut; constipation is the one constant. I have also recently been having a variety of brain fog (trouble visualizing reasoning for instinctive activities, trouble reviewing my thoughts) and have always had very poor blood circulation, pains in breastbone/chest, strange & intense drowsiness after eating, inability to feel hunger except by way of fatigue, and post-constipation pain in the left side of my brain/left eye.

I will still look into getting a heart monitor! And I will most likely post about this in the Brain & Nervous System group as well. If it is not a GI disorder, I'm not sure how to move forward.

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This response nails exactly my belief and sxperiance as well. I get pressure due too gas, causes a little brain fog, and nothing serious until every once in a while I feel a build up with some constipation and a full stomach and notice a five to fifteen minute really mild internal tremor through my body that starts “always” in the stomach/gut and radiates to the rest of the body, my neck gets stiff and my muscles get sore. (These usually happen after big weeks of hardwood floor work, which hits my neck and arms the hardest) and whenever the shake starts my soreness radiates more. I take a famotadine or Pepcid and usually subsides. Neck remains sore a stiff but I have had quite a bit of work related pain and accidental injury’s towards my neck. My bowel movements are daily and usually one large movement in the morning before the day starts and rarely do I experiance much constipation. I am only 28 and see constipation and more gut-brain shakes in the future so I’m preemptively searching for small OTC solutions. It’s been probably 6 months since I did a 14 day omeprazole and I’m thinking that would put my gut-brain back in check as I have a hard time sometimes sleeping while digesting snd keeping my acid down I try to avoid taking anything and usually just elevate myself a small bit or use a nose strip to breathe better so my body can fix itself while sleeping. Reading all these comments and responses and even ALL the article posted in the feed about autism spectrum and nephrological connections between gut and health ive come to better understand my body. My father has Parkinson’s and has had it for 8-9 years now. It’s a horrible disease and bless those that have it so u can imagine my worry when I get a small bit of heart pain or tight chest then feel a vibratory/internal tremor happen. It stops me from what I’m doing and causes me to get up and walk the dog or get some fresh air to calm my nerves. I’m glad to see the Prevacid helps with u guys, as I may try that here soon just a small 12 day cycle and be back to feeling my great 28 yr old spirit and energy.

Another question? Has probiotics helped with your issues at all is that something in my young age I could take for a month or a year to avoid the Pepcid/omeprazol reoccurrences? Just want the best gut-Brain connection I can. I see how much this digestion and gut-brian health correlates to the nerves and body. My blood work is always good ive checked last time I felt like this and it is rare i would say a few times per year it kicks up and feels like my stomachs fighting me and not doing it’s normal in and out routine. My solution this time is to keep the pressure down and out and not up in my gut and head since that’s where it all starts. Probably take a famotadine when this occurs and the worry sets in. If I need anything more than a small Pepcid or famotadine I will try the Prevacid/PPI 14 day thing and get back to u guys. I can live with a little pressure around the neck head and jaw but the shakes add more stress than it’s ever really worth and that’s the main focus to me. Thank you guys so much for the feed and thread. If it was 20years ago we’d all just have to suck it up or try some over the counter stuff to see what works and what doesn’t and we’re all blessed to be able to share our stories and our history with each other to better treat ourselves. Much love to you all and I will be back on here checking and reading and posting if I find the Prevacid helps, or if I’ll even need it. I’ve noticed working out and doing little runs almost works the pressure out everytime and reconnects those core muscles together to the brain helping the full motion and fluidity of my intestines to gut and helps relieve pressure after workout is done

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@jbjones18

This response nails exactly my belief and sxperiance as well. I get pressure due too gas, causes a little brain fog, and nothing serious until every once in a while I feel a build up with some constipation and a full stomach and notice a five to fifteen minute really mild internal tremor through my body that starts “always” in the stomach/gut and radiates to the rest of the body, my neck gets stiff and my muscles get sore. (These usually happen after big weeks of hardwood floor work, which hits my neck and arms the hardest) and whenever the shake starts my soreness radiates more. I take a famotadine or Pepcid and usually subsides. Neck remains sore a stiff but I have had quite a bit of work related pain and accidental injury’s towards my neck. My bowel movements are daily and usually one large movement in the morning before the day starts and rarely do I experiance much constipation. I am only 28 and see constipation and more gut-brain shakes in the future so I’m preemptively searching for small OTC solutions. It’s been probably 6 months since I did a 14 day omeprazole and I’m thinking that would put my gut-brain back in check as I have a hard time sometimes sleeping while digesting snd keeping my acid down I try to avoid taking anything and usually just elevate myself a small bit or use a nose strip to breathe better so my body can fix itself while sleeping. Reading all these comments and responses and even ALL the article posted in the feed about autism spectrum and nephrological connections between gut and health ive come to better understand my body. My father has Parkinson’s and has had it for 8-9 years now. It’s a horrible disease and bless those that have it so u can imagine my worry when I get a small bit of heart pain or tight chest then feel a vibratory/internal tremor happen. It stops me from what I’m doing and causes me to get up and walk the dog or get some fresh air to calm my nerves. I’m glad to see the Prevacid helps with u guys, as I may try that here soon just a small 12 day cycle and be back to feeling my great 28 yr old spirit and energy.

Another question? Has probiotics helped with your issues at all is that something in my young age I could take for a month or a year to avoid the Pepcid/omeprazol reoccurrences? Just want the best gut-Brain connection I can. I see how much this digestion and gut-brian health correlates to the nerves and body. My blood work is always good ive checked last time I felt like this and it is rare i would say a few times per year it kicks up and feels like my stomachs fighting me and not doing it’s normal in and out routine. My solution this time is to keep the pressure down and out and not up in my gut and head since that’s where it all starts. Probably take a famotadine when this occurs and the worry sets in. If I need anything more than a small Pepcid or famotadine I will try the Prevacid/PPI 14 day thing and get back to u guys. I can live with a little pressure around the neck head and jaw but the shakes add more stress than it’s ever really worth and that’s the main focus to me. Thank you guys so much for the feed and thread. If it was 20years ago we’d all just have to suck it up or try some over the counter stuff to see what works and what doesn’t and we’re all blessed to be able to share our stories and our history with each other to better treat ourselves. Much love to you all and I will be back on here checking and reading and posting if I find the Prevacid helps, or if I’ll even need it. I’ve noticed working out and doing little runs almost works the pressure out everytime and reconnects those core muscles together to the brain helping the full motion and fluidity of my intestines to gut and helps relieve pressure after workout is done

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Hello @jbjones18 and welcome to Mayo Clinic Connect. I think you are very wise to consider your diet alongside of what medications, OTC or Rx, that you are using. To compliment your considerations for probiotics and gut health, I wonder if you've ever considered journaling your food/liquids to see if you can see a trigger or trend between your food and your symptoms?

Also, do you drink (alcohol)? If so, you may consider trying to cut that out and monitor things one at a time as you cut or add.

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@amandajro

Hello @jbjones18 and welcome to Mayo Clinic Connect. I think you are very wise to consider your diet alongside of what medications, OTC or Rx, that you are using. To compliment your considerations for probiotics and gut health, I wonder if you've ever considered journaling your food/liquids to see if you can see a trigger or trend between your food and your symptoms?

Also, do you drink (alcohol)? If so, you may consider trying to cut that out and monitor things one at a time as you cut or add.

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That’s a great idea, I’ve been told about trying these online programs that test gluten and other foods with how they react and how tolerant I am so I can base a good diet around that. My diet isn’t all too great usually during the day I do fast food lunch, a breakfast sandwich in the morning and a good dinner each night. I don’t drink alcohol it’s very rare for me to do, maybe a few drinks once a month, if that. Journaling is a great idea as I’ve found marinara and pizza ingredients trigger acid reflux symptoms very heavily on me within 30min of eating them so i stay away. Constipation isn’t much of a thing as I rarely even take acid reducers and just kinda deal with it. When I do I notice stiffer bowel movements. My job is physically demanding so I stay in good shape and get my daily exercise in that way but I do think a 14day otc PPI would help reset my gut and be back to feeling great for several more months the tremor the other night made me do some internalization and get some clarity which u have all helped me with. I’d never heard of the Vagus nerve before and tonight looked up a vagus relax breathing technique trying to take in only a few really good breathes per minute and turned to yawn and felt immediate de-escalation of gas/pressure and still feel in the same relaxed symptom free state which I wasn’t 30 minutes ago when first laying down. So just researching and utilizing the tools I’m finding are really helping already. Thank you @amandajro ur the best I’ll see if these techniques and better diet will eliminate the need for a PPI regimen. Hopefully. I don’t eat my Veggies like I should lol, going to have to start working a salad into the day.

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@jbjones18

That’s a great idea, I’ve been told about trying these online programs that test gluten and other foods with how they react and how tolerant I am so I can base a good diet around that. My diet isn’t all too great usually during the day I do fast food lunch, a breakfast sandwich in the morning and a good dinner each night. I don’t drink alcohol it’s very rare for me to do, maybe a few drinks once a month, if that. Journaling is a great idea as I’ve found marinara and pizza ingredients trigger acid reflux symptoms very heavily on me within 30min of eating them so i stay away. Constipation isn’t much of a thing as I rarely even take acid reducers and just kinda deal with it. When I do I notice stiffer bowel movements. My job is physically demanding so I stay in good shape and get my daily exercise in that way but I do think a 14day otc PPI would help reset my gut and be back to feeling great for several more months the tremor the other night made me do some internalization and get some clarity which u have all helped me with. I’d never heard of the Vagus nerve before and tonight looked up a vagus relax breathing technique trying to take in only a few really good breathes per minute and turned to yawn and felt immediate de-escalation of gas/pressure and still feel in the same relaxed symptom free state which I wasn’t 30 minutes ago when first laying down. So just researching and utilizing the tools I’m finding are really helping already. Thank you @amandajro ur the best I’ll see if these techniques and better diet will eliminate the need for a PPI regimen. Hopefully. I don’t eat my Veggies like I should lol, going to have to start working a salad into the day.

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It will be great to keep in touch with you as you go through this to see what is or is not working. Will you update us all on what you are learning as you go?

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@amandajro

It will be great to keep in touch with you as you go through this to see what is or is not working. Will you update us all on what you are learning as you go?

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Absolutely!

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