Has anyone else been diagnosed with Vagus Nerve Dysfunction?

Posted by montgomery41 @montgomery41, Jan 21, 2018

I'm new to Mayo Clinic Connect and I'm wanting to connect with others that have been diagnosed with Vagus Nerve Dysfunction and other Digestive disorders. The diagnosis of Vagus Nerve Dysfunction and it was presented to me a little over two years ago and honestly, it wasn't until I had seen my GI specialist last week that she was positive that I do have this disorder. I also have Gastroparesis, no surprise to me because that goes hand in hand with this, as well as, every single sign and symptom I have been experiencing since then. I will try to keep this brief. My history leading up to the Vagus Nerve Dysfunction was that I had Gastric Bypass surgery in 2003 and all my problems started after that. Since 2003 I have had nearly 23 both open and lap abdominal surgeries for gallbladder removal, ventral hernia repairs x 4, appendix, revision to my gastric bypass due to perforation at the anastomosis site, bowel obstructions/strictures, lysis of adhesions and the final straw was I had my gastric bypass reversed two years ago because I could not eat or drink and I had lost 65lbs. in 2 months, nearly died before my surgeon placed a g-tube then a j-tube for tube feedings. I never really tolerated the tube feedings either. My surgeon stated by the time I had my reversal done it took him 2 1/2 hours just to remove all the abdominal adhesions that I had before he could perform the surgery he was going to due. Of course, now I have a frozen abdomen, which basically means no surgeon will ever touch my abdomen again to perform surgery. Now, I feel like I've been handed a life sentence because there isn't a cure and it's all about symptom management. If anyone knows about Vagus Nerve Dysfunction, basically all major organs are connected to this cranial nerve and it affects everything! I know this is true because I am trying to deal with this every day of my life and I'm struggling. I'm not coping very well and didn't know what others with similar symptoms are handling this? I can't even sit down to eat with my family to eat because I want to eat but can't and my husband doesn't want to see me go through this. Hearing from others would be greatly appreciated.
Thank you very much if you have read my entire post.

Michelle

Interested in more discussions like this? Go to the Brain & Nervous System group.

Hi Michelle, Welcome to Connect. We have several members talking about a damaged vagus nerve in the Digestive Health group (https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/). Please meet @cummings3 @gorkii @citygirlannie @peck1944 and others. You may be interested in reading their stories in these discussions:
– Hiatal hernia sugery https://connect.mayoclinic.org/discussion/hiatal-hernia-sugery/
– Nissen Fundoplication reversal https://connect.mayoclinic.org/discussion/nissen-fundoplication-reversal/
– mild gastroparesis with severe symptoms! https://connect.mayoclinic.org/discussion/please-read-mild-gastroparesis-with-severe-symptoms/

Let me know if you’d like me to move this discussion to the Digestive Health group.

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Have a situation and questions…
Started taking Lexapro and immediately started having stomach pains. Turns out that my grandmother at about the age which I am (35) endured similar pains and they either severed her Vegas Nerve or removed part of it…pain went away completely. I never had these pains until taking Lexapro…..Also, Mayo had to remove my entire large intestine at age 25 due to total immobility and atrophy. Any help or guesses ? THANK YOU Marcie

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montgomery41, I, too, have a vagus nerve of some type, my neurologist tells me. My main symptom is a lightning bolt that runs from my feet to my head occasionally. Maybe 3-4 or up to 20 times per year. Even had a few during football games, or neighborhood rodeos. I can not offer any treatment, nor even know of any, but just a hope you will keep on keeping on. I am 80 years old now, and have had these for about 75 years. Ben Franklin had it easy. He only got shocked once. oldkarl

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I have read the symptoms of Vagus nerve disorder, has anyone have the condition

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@jaycip

I have read the symptoms of Vagus nerve disorder, has anyone have the condition

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@jaycip Yes, I developed the symptoms in error as the result of my last surgical repair of my AVM(ArterioVenousMalformation). I have been dealing with gastroparesis and have learned ways to control it. Do you get the stomach burning as well?

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@jaycip

I have read the symptoms of Vagus nerve disorder, has anyone have the condition

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@jaycip and @avmcbellar what is Vagus Nerve Disorder? I have never heard of that. I would be interested in knowing what that is.

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@jaycip

I have read the symptoms of Vagus nerve disorder, has anyone have the condition

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Hi @lsittll Vagus Nerve disorder is caused when the nerve does not work correctly to activate the muscles to aid in digestion. The stomach and intestines may not turn enough. Gastroparesis symptoms will be experienced. The stomach does not empty correctly taking foods a longer time to get digested. Symptoms may include nausea, vomiting, belching, bloating, heartburn, indigestion, regurgitation, or feeling full. There is no cure but it can be managed. Hope this helps.

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@avmcbellar

Hi @lsittll Vagus Nerve disorder is caused when the nerve does not work correctly to activate the muscles to aid in digestion. The stomach and intestines may not turn enough. Gastroparesis symptoms will be experienced. The stomach does not empty correctly taking foods a longer time to get digested. Symptoms may include nausea, vomiting, belching, bloating, heartburn, indigestion, regurgitation, or feeling full. There is no cure but it can be managed. Hope this helps.

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I am fairly certain that I had issues with my left vagus nerve. It was secondary to an infection. For months I had undigested food in my stool, significant inflammatory symptoms, and heart irregularities.

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@jaycip

I have read the symptoms of Vagus nerve disorder, has anyone have the condition

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Hi @bmont Did you ever confront your physician or see a GI physician for a consult with these symptoms? Scary. I do not have undigested food in my stool. Did it eventually resolve on its own? My troubles began when I got neuropathy. You would think the team of neurologists who performed my last surgical repair for my AVM (ArterioVenousMalformation) would question me. Instead, it seems I got ignored (it may be because they had no answers to my questions). Who knows? Through trial and error I have learned to manage my symptoms and feel much better because of it. I have always been my own advocate. My PCP is very helpful. He listens to me and approves labs to rule out any health suspicions. I will be happy to answer any questions to help.

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@jaycip

I have read the symptoms of Vagus nerve disorder, has anyone have the condition

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I confronted my physician several times. We remained at odds. I was eventually able to see a Gastroenterologist. I had to bounce around to walk-in clinics. Eventually I found a physician that was somewhat competent and initiated a referral.

I ended up getting scoped top and bottom. By the time they got to the Endoscopy/Colonoscopy (months later) the symptoms were less severe. The Gastroenterologist said "You should really get your Doctor to send you to an Infectious Disease Specialist"… yeah, no kidding. You cannot make this stuff up. It took over a year to see a competent Internal Medicine and Infectious Disease specialist.

Glad you have a good PCP. It makes a huge difference when they are helpful and actually listen. How do you manage your symptoms? I have found pre-biotics, pro-biotics, magnesium supplements and an anti-inflammatory diet helps. Our symptoms are somewhat similar, and perhaps a lot of overlap. Any insight on how to manage the gut issues?

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@avmcbellar

Hi @lsittll Vagus Nerve disorder is caused when the nerve does not work correctly to activate the muscles to aid in digestion. The stomach and intestines may not turn enough. Gastroparesis symptoms will be experienced. The stomach does not empty correctly taking foods a longer time to get digested. Symptoms may include nausea, vomiting, belching, bloating, heartburn, indigestion, regurgitation, or feeling full. There is no cure but it can be managed. Hope this helps.

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I don't think I have the Vagus nerve disorder per se but I've had some of the symptoms you mention for 20+ years. I have found that eating 1/2 portions and drinking a lot of water about an hour later really helps.. Also taking something like Prevacid helps a lot too. The more I eat the longer it takes for my stomach to empty. Water does help even w that.

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@bmont

I confronted my physician several times. We remained at odds. I was eventually able to see a Gastroenterologist. I had to bounce around to walk-in clinics. Eventually I found a physician that was somewhat competent and initiated a referral.

I ended up getting scoped top and bottom. By the time they got to the Endoscopy/Colonoscopy (months later) the symptoms were less severe. The Gastroenterologist said "You should really get your Doctor to send you to an Infectious Disease Specialist"… yeah, no kidding. You cannot make this stuff up. It took over a year to see a competent Internal Medicine and Infectious Disease specialist.

Glad you have a good PCP. It makes a huge difference when they are helpful and actually listen. How do you manage your symptoms? I have found pre-biotics, pro-biotics, magnesium supplements and an anti-inflammatory diet helps. Our symptoms are somewhat similar, and perhaps a lot of overlap. Any insight on how to manage the gut issues?

Jump to this post

@bmont Did you finally get answers from the infectious disease physician? Was the initial thought that you had an ulcer?
I will be happy to share what I do that I found to be helpful.
The key is not to overload your stomach with food since there is a delay in digestion. I select foods that are easier to digest like plain yogurt, thick soups, and smoothies. I do take longer to chew foods. I eat frequent small meals(5). My main meals i.e. breakfast, lunch, and dinner are no more than 1.5 cups each. I avoid too much water in meals because water can make you feel full. I do drink in between to keep hydrated. I like to make my own foods for content control ( and maintain a low carb diet) including plain yogurt and dough for rolls and pizza. I found eating freshly made plain yogurt is not sour as the store bought. Yogurt is easier to digest because it doesn’t contain sugar. The added bacteria in the milk consumes the sugar for reproduction to become yogurt. I also eat boiled eggs. At times I make vegan desserts to keep my cholesterol level low. I limit fatty foods in a meal because fats tend to stay in your stomach longer. For pizza I use very little cheese. For peanut butter I use PB2, the powdered form without the oil. I try to make digestion easier on my body. For me I found chewing gum helpful too. I should add I eat mainly a plant based diet. I always have so that was not a big change for me.
I know this is a lot of information for changes. I included a few. Don’t be afraid to ask if you need more information. As you can see it is not easy to manage gastroparesis. My motivation is to feel better and avoid other health issues that may arise from gastroparesis. In other words, I try to have a better quality of life. I hope this is helpful to you. I learned all this on my own. A few years ago I was suspicious when some of the routine lab results were not my normal. The physician did not pick up on that because the results were within range but at the very end of the range. That was odd to me but now I know why. Next year I should have better lab results according to my normal. Wish you all the best.

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