Anyone have Vagus nerve problems causing strange, unnerving symptoms?

Posted by joannemm34293 @joannemm30809, Mar 23, 2023

Does anyone else have debilitating symptoms that affects the entire body, especially in the morning hours, and my Arrhythmia Dr told me I have Vagus Nerve malfunctions that causes major issues where my heart goes off beat, I have to continually use the bathroom and I get an overall body feeling of just feel sick, rush of nausea etc.

I still have the overall muscle twitching and strange internal vibrations as well as tinnitus and thumping sounds in my right ear.

Does anyone else have Vagus nerve problems that cause strange, unnerving symptoms??

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drowland | @drowland | Oct 2 11:00pm

In reply to @drowland "@stephaniescomment" + (show)

@drowland
I have listed the symptoms I have from a damaged vagus nerve— low blood pressure that leads to fainting and migraine headaches. I also have poor balance and sinus tachycardia but no digestive issues. At my next appointment with my electrophysiologist, I shall inquire about the benefits of vagal nerve stimulation. I have read that it works for some people. Meanwhile I hum and sing a lot!

johnaml | @johnaml | Oct 17 2:17am

My symptoms are exactly as first described above, including developing migraine and an arrhythmia. These symptoms first appeared with syncope after eating or drinking the smallest volume of food or drink. My heart would slow to 40 BPM. A cardiologist prescribed a proton pump inhibitor which lessened the symptoms. Recently I thought it might be a form of Achelacia.

Janell, Volunteer Mentor | @jlharsh | Oct 17 7:31pm

In reply to @johnaml "My symptoms are exactly as first described above, including developing migraine and an arrhythmia. These symptoms..." + (show)

Hi, @johnaml. Welcome to Mayo Clinic Connect!

I am tagging @joannemm30809 to see how she is doing and what recommendation she may have.

Are you symptoms manageable now that starting a PPI lessened them? Why are thinking you may have a form of achelecia particularly?

rashida | @rashida | Oct 18 9:06am

In reply to @saramccoy "For 20 years I have suffered from nerve pain in my right shoulder near my neck...." + (show)

@saramccoy

For 20 years I have suffered from nerve pain in my right shoulder near my neck. After 10 years of trigger point injections in my shoulder blade I had an ACDF, which was a failure, and then a laminectomy on my C-5-6, 6-7 eight years ago and was told I would eventually need surgery on upper discs. After seeing my neurosurgeon three times since with additional sciatic nerve pain, pain management doctors, meds, nerve blocks, trigger point injections and epidurals, he informed me that my C-1 and L-5, S-1 were compromised but he couldn’t help me.
I have been seeing an incredibly qualified massage therapist for 20 years. I see him every week and sometimes twice. If it weren’t for him I don’t know where I would be.
In the last 3 months I have developed painful digestive issues after NEVER having digestive issues, dizziness when standing or when I’m talking with my hands when sitting or standing, nausea, hoarseness, difficulty swallowing meat and pills, and increased nerve pain in the entirety of right side of head affecting my eye, jaw and neck and shoulder. I have limited, painful mobility in my neck. I scream out in pain from my neck and spontaneous nerve pain throughout my body.
I spent 10 hours in the ER 3 weeks ago after the onset of the digestive issues mentioned above followed up with an endoscopy. Started medication for gastritis and told to call if I didn’t get better. I now have an appt with the GI doc to look at my pancreas a bile ducts.
Five years ago I was diagnosed with Stage 2 Triple Positive breast cancer fueled by estrogen. I began 20 rounds of chemotherapy, bi-lateral mastectomy, 5 years of Letrozole, an estrogen inhibitor which itself caused bone and joint pain. As of two weeks ago I was considered cancer-free which meant I could cease the Letrozole. Symptoms from it may linger for who knows how long.
Prior to my Breast Cancer journey I was diagnosed with Fibromyalgia.
So many of my symptoms from each of the above overlap and I feel like I’m losing my mind as well as my quality of life. I spend 80% of my day on my back with ice packs from my neck to my lumbar. I sleep with an ice pack tied around my neck.
Four weeks ago after my massage therapist had been researching my condition with intensity he suggested that I may be suffering from Vagus Nerve Dysfunction. NOT ONE of the plethora of doctors I have seen in the last two months have mentioned the condition. Neurologist, neurosurgeon, cardiologist, gastroenterologist, primary physician, internist, pain management doctors. Not one.
My massage therapist recommended that I try to get an appointment with Mayo in Jacksonville as I live in Mobile, AL. Any recommendations as to my best chance of them taking me on? I am desperate.
Thanks for letting me vent.

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@saramccoy I have fibromyalgia so can relate to your pain although I am at a point where I have built up a high threshold to it.

I also have difficulty with swallowing meat (mostly beef and white meat) and pills. I find swallowing easier when I put my head down - looking down as I swallow. I can get as many as three small pills or one large one with water that way.

johnaml | @johnaml | Oct 18 12:06pm

My long reply disappeared b4 I could save it. The short version is that my AI search produced several candidates, the simplest explanation seemed to me to be achalasia. Years ago a cardiologist suggested that my syncope may be vagal nerve’s over stimulation, causing the brain to lower the heart rate. In my opinion the PPI may have also lessened the role of acid reflux. If it is/was due to achalasia my very first experience with this was with drinking a milk shake through a straw. It action caused the drink to stop midway in my esophagus in a mild kind of spasmodic crap.

lesterholland | @lesterholland | Oct 18 12:35pm

In reply to D Rowland: Coincidence you should ask now; three days ago I woke up later than usual, still feeling tired. I ignored the tiredness. Four hours later, feeling normal, I had lunch in a local restaurant. Suddenly, (coincidentally before paying the check) I got extremely dizzy and experienced urgency of diarhea at the same moment. Sparing you the details; another patron found me on the floor of the restroom and called an ambulance. After several hours and a thorough examination I was released from the hospital without explanation. A day later I visited my primary care physician who reviewed the Emergency Doc's report and said that in his opinion the entire incident was due to an irritation of the vagus nerve. Before this I had never heard of the Vagus nerve.
My question; What do I do if it happens again? His suggestion: "Lie on the floor with feet elevated." I'm open to other suggestions.

johnaml | @johnaml | Oct 18 1:10pm

“Cramp”

Janell, Volunteer Mentor | @jlharsh | Oct 18 1:43pm

In reply to @johnaml "My long reply disappeared b4 I could save it. The short version is that my AI..." + (show)

I understand a bit more now, @johnaml. Thank you for explaining a bit more. All this combined with migraines, arrhythmia and passing out must have been scary.

I found a summary about achalasia that you may have already read, but here is a link if not. It sounds like it is progressive, getting worse over time.
-Mayo Clinic Achalasia Overview: https://www.mayoclinic.org/diseases-conditions/achalasia/symptoms-causes/syc-20352850

You mention taking a PPI your cardiologist prescribes may have lessened the role of acid reflux. Are you saying the PPI has helped? Do you plan a GI visit to pursue testing?

gloaming | @gloaming | Oct 18 4:49pm

In reply to @lesterholland "In reply to D Rowland: Coincidence you should ask now; three days ago I woke up..." + (show)

@lesterholland The Vagus nerve is the regulator of the heart's rhythm when it has the correct 'tone', and when the Vagus nerve is not doing its job it's called 'dysautonomia.' As you would know, the body has to central nervous system response sets, the sympathetic (in sympathy with stress and threats, so 'fight-or-flight' with all the energy, heavy breathing, sweating before you exert yourself, and rapid heart rate due to epinephrine) and parasympathetic where you become calmed, relaxed, maybe sleepy. The Vagus nerve regulates the parasympathetic responses if you have no threats about you. So, if your Vagus nerve loses tone, it can cause the bowels to explosively evacuate, or one to void their bladder, essentially involuntarily. Believe it or not, it's a defense mechanism meant to distract or to deter a would-be threat to you, but also to literally lighten the load in case you have to flee to save yourself.
https://my.clevelandclinic.org/health/diseases/6004-dysautonomia

drowland | @drowland | Oct 19 1:52pm

I once had the same reaction after eating heavy, fatty food and drinking wine at a nice restaurant. Fortunately, I was with a nurse who diagnosed my problem as being caused by the vagus nerve. After passing out for a few minutes, I woke up with an ice- cold pack on my forehead and soon felt much better. I have given up fried food, red meat, fatty food of all kinds, and liquor. It has not happened again, so a change in diet has worked for me.

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