Vagal Nerve Bowel trouble.

[trappedinside]

I am not sure how to phrase this. I have seen gastroenterologist, but still suffering. When solid waste inside my colon reaches a particular point, I am stricken with numb hands and feet, anxiety and tremors.  I am awakened with the feeling that my heart is being sqeezed.  This usually happens around 4:30 am, and lasts until I have had anywhere from 2 to 6 BMs.

Contrary to what others seem to believe, this is not anxiety causing IBS, but the other way around.  I am calm and happy when my bowels are quiet.  This also not me becoming anxious about "going".

This is a relatively new problem, beginning in Sept 2006.

My doctor suggested the numbness was from shallow breathing due to anxiety, but I have paid very close attention, and it is not the case.

Had a very bad reaction to Levbid in December, resulting in Lexapro and Klonopin, both of which I have finally gotten off of due to their hellish affect on me.

My basic question is "have you ever heard of such a strange condition, and if so, what, if any, is the treatment?"  My doctor is perplexed, I am sure.  Currently am taking Bentyl, but this has not stopped the 4:30am distress.

[Niniene]

I have symptoms very, very similar to what trappedinside describes. I was diagnosed with IBS about 15 years ago, about the same time I was diagnosed with migraines. Over the next few years, I developed a lot of pain in my neck, one shoulder, jaw, both hands and wrists, rib cage, and pelvic girdle. A rheumatologist diagnosed that as fibromyalgia, but my general practitioner "questions that diagnosis" (her words). I also now have a small goiter and hypothyroidism. I have a terrible time sleeping, tossing and turning in pain, all night, every night. I have undergone two sleep studies and was diagnosed with sleep apnea. I used a CPAP for two years, but recently, the migraines got so bad, I couldn't stand the CPAP mask touching my face, so I resorted to Breath-Right strips instead. Earlier this year, I had 35 consecutive days of migraine. A few months ago, I woke up with a racing heart rate, over 200 beats per minute. I went to the emergency room, where it continued at that rate while several of the medical staff watched on a screen. The cardiologist said it was supra-ventricular tachycardia. He explained the valsalva maneuver, and how bearing down stimulates the vagus nerve, which somehow causes the heart rate to return to normal. That has worked to slow my racing heart several times since then.

Today, my aches and pains are really hurting me, which is why I am browsing the internet, looking for information that might help. I just read on wikipedia that "the vagus nerve is responsible for such varied tasks as heart rate, gastrointestinal peristalsis, sweating, and quite a few muscle movements in the mouth, including speech (via the recurrent laryngeal nerve) and keeping the larynx open for breathing." I am wondering whether the source of many of my ailments might be a vagus nerve problem. I have a general practitioner, a gastroenterologist, a rheumatologist, a cardiologist, and a neurologist, none of whom seem particularly interested in anything other than prescribing a huge variety of drugs, which is beginning to scare me.

Fifteen years ago, I was an athlete and in perfect shape. Within 5 years after the IBS & migraine diagnosis, I had gained 75 lbs. Since then, I have eliminated most physical activity from my life. Even swimming in a therapeutic pool hurts. I have become a blob, but at least I float well.

Do you have any suggestions on how I can induce my physicians to collaborate on treatment for my whole body, rather than all of my symptoms independently? I am about ready to give up on all of them, but I don't know where else to go.

P.S.:  Please don't suggest treatment for depression. When I'm not in pain, I'm very, very happy.

[swestfam]

A related discussion, Vagal reaction? was started.

[lil26116]

A related discussion, IBS?? was started.

[Ronrich]

A related discussion, treatment if vagus nerve is problem for stomach aches was started.

[PATSYALIVE]

I was diagnosed w/IBS 15 yrs ago.   I also had missed or extra heartbeats (I refer to them as missed, I now know that they are extra beats)..they used to be pretty bad (about 10 yrs ago).    I did end up having a heart attack in 1996 and had a stint put in.    But the extra beats and PVC's continue.  I have seen several drs (one who primarily deals w/ arthymia problems).   In 2005, I even ended up in the hospital over night, I woke up at 5a yawned and streched and my heart started racing and went crazy.    It went out of rythm and I was taken to ER and put on medicine to get it back into a normal heart rythm.  

My internist has told me that she is sure that most of problems are due to a Vagus nerve problem.   She told me that this nerve runs from the throat area, thru the heart, the stomach and out your rectum.   It can effect many things.    I had gastric bypass surgery in 2000 and lost 140lbs (I still need to lose another 30).   This has helped a lot, but they have not entirely went away.    
I find that anytime my bowels are constipated, diarrhea or extreme gas (which I have a lot due to the gastric bypass surgery)...this irrratates the vagus nerve and I have a flare up.     Stress is another cause for flare ups.    My internist put me back on Paxil (for my anxiety, I had been on it for 10 yrs, but took myself off of it for approx 2 yrs, started having many many episodes w/the heart beats, I take a 20 mg Paxil each night at bedtime...this has helped the heat beat problems more than anything else I have taken.   I never dreamed that it would help that problem, I always took it for the anxiety problems I had.  
    Because of my other heart problems, I take Topral XL 50 mg 2 times a day, this medicine is awesome for controling heart arthymia problems with little to no side effects.    
   I do try and watch what I eat, little to no caffiene, no spicy foods, little sugar, keeping fried foods to a min., but like most people I am not always sucessful.
I will eat some pizza or spagetti once in a while, and when I do, I know I will have problems.  
   I do find it frustrating that doctors don't seem to know or don't want to discuss the effects that the Vagus nerve has on people.   Maybe because there is no known way to actually FIX IT!  

[mimi65]

I to also suffer from almost the same problem. Doctors don't know what to do. Gastronolgist, neurologist....list goes on all the Drs. I have seen. Gastro wants to remove a section of my colon because of slow transit, most likley due to my Multiple sclerosis. Ask you Dr. about Mastocytosis, or Gastroparesis. I have been doing my own reserch. The latter is because delayed stomach empting caused by imparment of the vagus nerve. Mastocytosis is caused by having to many "mast cells". Ulcers also can cause this. Good luck let me know what happens..    Mimi65

[Kevin Pho, MD]

It is difficult to say without evaluation.  I am not aware of a specific condition that connects the symptoms you describe.  

The neurologic symptoms can be evaluated with a nerve conduction study or MRI.  

The heart symptoms can be evaluated with an echocardiogram as well as a stress test.  

If the tests continue to be negative, optimizing treatment for anxiety can be considered.  

These options can be discussed with your personal physician.  Referrals to a neurologist or cardiologist can be considered as well.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_

[trappedinside]

I have had a colonoscopy, all is well, but told colon is "tortuous".

All bloodwork is good as well.