Has anyone else been diagnosed with Vagus Nerve Dysfunction?

Thank you so very much for your reply. To answer your question of how long she has been living with these symptoms, she is 62 years old and had gi symptoms in her 20’s and again in her 30’s. The current symptoms began about one year ago after she had bariatric surgery one year earlier.

They were manageable for a while but for the past 5 months she has had almost daily nausea (not vomiting), cramping that is sometimes severe, slow bowel motility, and occasional headaches.

Depending on which symptoms need attention, she takes triptan for the headaches, Xanax for the nausea (almost daily) and a pain killer (I do not know which one). However, these drugs do not always work.

She has been seen by a neurologist, neuro surgeon , GI specialist, and went back to her bariatric surgeon who had wanted to perform exploratory surgery but she was warned against it.

The four specialists are only somewhat familiar with the vagus nerve and have had no recommendations for treatment.

She is highly intelligent and very conversant with the subject. She has been in therapy for ptsd with the same therapist for over ten years. She has always had bouts of anxiety and depression but lately those mood changes appear to be directly associated with her illness.

She has very limited funds and sent for the TENS stimulator but there is no way to connect the pads to the device. We do not think it is wise for her to use the invasive VNS.

I would like to follow your advice and contact the people listed below but am not certain what the full email address is. Is it: mayoclinicconnect @(and the name you entered?

I am so grateful for your help. I live in Utah and she lives on the coast. I am in daily contact with her and it is difficult to see how much she is suffering.

Michelle, I do not know where to start after reading your past history. My 62 year old daughter has had three specialists indicate they "think" she has vagus nerve syndrome. She also had gastric bypass surgery and the surgeon wanted to do "exploratory " surgery but her roommate told her that her friend had died during exploratory surgery. It is good that you have family support. After all the unbelievable interventions you have been through I so wish there is something I can offer. Her surgeon thinks there is a possibility that the vagus nerve was damaged during the bypass surgery. I understand though that years ago cutting the vagus nerve was considered proper during bypass. You have been through so much. At this point we are waiting for a referral to a neurologist at Stanford Medical Center. Apparently there are sixty neurologists connected to Stanford. Forgive me for not being able to offer more other than my sincere empathy for all that you have been through.

thank you so much Peck 1944! we are going to follow your suggestion and check with the IFGD. She takes xanax for nausea which generally helps but zolfran is the standard of care for cancer patients and is much safer. I too am concerned about my daughter's motility and the usual advice about fiber. I finally found a site that said an overabundance of fiber is harmful and I truly believe that. It causes too much bulk. I think an inflammatory diet would be a safer alternative. She has seen a neurologist, neurosurgeon, and GI specialists. They have not had experience with the vagus nerve and have not been able to offer advice. Ironically she is trying to follow the suggested diets which are primarily fruits and vegetables. Occasionally she gets severe cramping and I am wondering if it is from a buildup of fiber. Thank you again for your suggestions and I will forward them to her!

Hello again Amanda, I found the site again and see that I simply click on the addresses you suggested. Forgive my brain fog!

ER Doctors have told me I have a "Cardiovascular dysautonomia" I am 21 years old pounding heart at night kept me up had to quit my job and school. Was going surfing everyday now I can just do long walks for physical activity. Center squeezing chest pressure is my main symptom now. Feels like someone is standing on my chest. Been constant for the past 3 weeks

Yes, I have had vagus nerve issues for about 6 years now. Mine comes from superficial siderosis. My Dr. advised me to stay hydrated. Don’t over eat, don’t drink alcohol, if you feel an attack coming on rest and keep cool. I hope and pray the best for you

I’m continuing conversation on Vagus Nerve Dysfunction. Not sure if I’m in correct ‘group’ my question is, Does the diagnosis of Vagus Nerve Dysfuction” also relate in anyway to Autonomic Nervous Syndrome… my 92 year old husband was diagnosed with ‘Autonomic Hypotension plus NOH ( neurogenic Orthostatic hypotension as well!!! Plus Lewy Body Dementia, seems perhaps some ‘similarities in these diagnoses??? Thank you for any info?

My husband was diagnosed in 2010 with vasovagal episodes where he actually faints and has convulsions during these episodes, all due to his vasovagal nerve reacting to things like dehydration, pain or even donating blood caused his vasovagal nerve to react and cause him go go into syncope with convulsions. Sometimes little things like gas pains triggers his vasovagal nerve to cause him to faint and convulse. Very scary.

Yes- car-wreck -severe head trauma -basilar skull fracture- tore 5 cranial nerves- 689-10/vagus nerve/11- / nerve damage paralyzed vocal cords/entire right side was effected -heart rate/. slow digestion- lots of problems

Hi Bonnie,
I moved your question about vagus nerve dysfunction to this existing discussion:
- Has anyone else been diagnosed with Vagus Nerve Dysfunction?https://connect.mayoclinic.org/discussion/new-here-has-anyone-else-been-diagnosed-with-vagus-nerve-dysfunction/

I did this so you can connect with others like @jaycip @bmont @marko82 @montgomery41 @rosexxxx @peck1944 @jkrock16 @stevegrinstead @joannemm30809 and others.

Bonnie, it sounds like your husband (and you) are dealing with a lot at 92 years old. How are the multiple diagnoses affecting him? How are you doing?