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.

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?

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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.

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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

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@bonnieb81

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?

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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?

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@colleenyoung

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?

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Thank you gor asking… not well at all. I had to put my husband in a Rehab hospital. We’ve gone thru 6 hospices (accidently ref. To hospice prematurely.. by a specialist that saw him 2x by video. (Telemed-) he needed palluative, as I feel he was treatable.. I had kept his vitals stable with Dr. Prescriptions! But over medicated on hospice drugs when I requested ‘none’ he has advrse reactions to psyche drugs and benzos.. became delirious, aspirated , many trips to ERs! He was coerced to take drugs in respites that I had cautioned he responds very negative to! Major problems!! Then he almost stopoed eating and drinking (vascular dementia not a good thing As bloid flow sliw and then not circulating no reading on oximeter.. hospice couldn’t get IV to him quick enough!!! So each time ER! That negates hospice… anyway more to stiry… trying to find a faculty for more PT.. speech therapy.. almist non-verbal.. his beautiful singing voice gone! It’s been a nightmare! VA for this veteran has not done a thing for him.. Koren Conflict… Army! Approved for medical but I cannot get his healthcare going! So sorry.. but I’m trying to keep him going.. especially ‘no pain’ good vitals!!!

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@bonnieb81

Thank you gor asking… not well at all. I had to put my husband in a Rehab hospital. We’ve gone thru 6 hospices (accidently ref. To hospice prematurely.. by a specialist that saw him 2x by video. (Telemed-) he needed palluative, as I feel he was treatable.. I had kept his vitals stable with Dr. Prescriptions! But over medicated on hospice drugs when I requested ‘none’ he has advrse reactions to psyche drugs and benzos.. became delirious, aspirated , many trips to ERs! He was coerced to take drugs in respites that I had cautioned he responds very negative to! Major problems!! Then he almost stopoed eating and drinking (vascular dementia not a good thing As bloid flow sliw and then not circulating no reading on oximeter.. hospice couldn’t get IV to him quick enough!!! So each time ER! That negates hospice… anyway more to stiry… trying to find a faculty for more PT.. speech therapy.. almist non-verbal.. his beautiful singing voice gone! It’s been a nightmare! VA for this veteran has not done a thing for him.. Koren Conflict… Army! Approved for medical but I cannot get his healthcare going! So sorry.. but I’m trying to keep him going.. especially ‘no pain’ good vitals!!!

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The brain and the vagus nerve are highly dependent on activated thiamine. Magnesium is needed for activation of thiamine as well as vitamin D. Activated thiamine is needed in turn to activate B6. As you see the B vitamins work better together. There are anti thiamine factors that diminish or destroy thiamine as grouped in the stuttersence link. Magnesium like thiamine is subject to loss as listed in the krispin link. Other vagus nerve stimulints can be found in the third link. Always consult your health care professional before using any supplement.
http://stuttersense.blogspot.com/2014/08/these-factors-reduce-your-thiamine.html
https://www.krispin.com/magnes.html
https://www.healthyandnaturalworld.com/vagus-nerve/

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@onamission

The brain and the vagus nerve are highly dependent on activated thiamine. Magnesium is needed for activation of thiamine as well as vitamin D. Activated thiamine is needed in turn to activate B6. As you see the B vitamins work better together. There are anti thiamine factors that diminish or destroy thiamine as grouped in the stuttersence link. Magnesium like thiamine is subject to loss as listed in the krispin link. Other vagus nerve stimulints can be found in the third link. Always consult your health care professional before using any supplement.
http://stuttersense.blogspot.com/2014/08/these-factors-reduce-your-thiamine.html
https://www.krispin.com/magnes.html
https://www.healthyandnaturalworld.com/vagus-nerve/

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Thank you for that information! My daughter, an RN at age 58 committed suicide… major depression. The Neurologist before her death recommended a VNS ( vagus Nerve Stimulator) in her brain going to the heart and other organs! But… it was implanted for the production of seratonin… so I naturally have great interest in this article by (?) sorry( orig. article on here) as my 92 yr old husband with multiple ills and (4) diagnosed dementias plus “ Autonomic Hypotension” causing major changes in his blood pressure.. extreme highs and lows. ( Orthostatic too) is so similar to the Vagus Nerve dysfunction!?????

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@rosexxxx

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.

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Cutting the vagus nerve would be malpractice!! At anytime-it would paralyze muscles that let you talk swallow breath/ move you food through digestive track/ controls body temperature/it runs the length of 3/4 of your body/ you need to study the cranial nerves and compare her problems to what nerves were possibly affected during surgery/ help the doctor figure out what happened- it’s her body- she knows more than any one what’s affected/ you’ve got to take intimate some things on your on

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@smilton

Cutting the vagus nerve would be malpractice!! At anytime-it would paralyze muscles that let you talk swallow breath/ move you food through digestive track/ controls body temperature/it runs the length of 3/4 of your body/ you need to study the cranial nerves and compare her problems to what nerves were possibly affected during surgery/ help the doctor figure out what happened- it’s her body- she knows more than any one what’s affected/ you’ve got to take intimate some things on your on

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To @smilton – that is such good advice. That she should compare her problems with or if nerves were damaged during surgery. It is too much of a coincidence that she had no problems (other than weight) prior to surgery and the headaches, pain in abdomen, nausea, slow motility, all began a few months after surgery.

The bariatric surgeon said he thought he saw a shadow at the juncture of her small intestine and the stomach but nothing definitive. She has had scans and xrays by a Neeurologist, neuro surgeon and gi specialist. They all “suspected” but not sure.

She is highly intelligent and now very familiar with the vagus nerve but we are waiting for a referral to a doctor who has vagus nerve experience. Meanwhile she is home suffering to day.

There are 300 clinical trials out there investigating the invasive VNStimulator. She is trying to get the TENS noninvasive stimulator adjusted properly. She has a blood pressure monitor and the CorSense monitor. But your suggestion makes sense and I will pass it along to her.

Sent from Mail for Windows

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