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MariaBanelli

Vagus Nerve Attack

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I was only recently diagnosed with Celiac but had a whole bunch of symptoms leading up to what eventually became very frightening.

I had, for some time been having all the symptoms of gluten intolerance, I just hadn't related it and neither had my doctor. I was getting alarmed at how much weight I was losing and how many hours in a day I found myself sitting on a loo. I went down to 82lbs before the first big attack came.

One day I was sat on the loo as usual but suddenly felt very sick and as though I was going to faint. My stomach felt like it had a rolling full term baby in it. I ended up calling my husband who managed to steady me and put a cold cloth on my head and then as soon as it came, it went.

I got up but within seconds I found I couldn't breath. It was as though my lungs had paralyzed. I must of been able to breath a tiny bit because the ambulance took a good five minutes to get to me but I was in total panic, I thought I was going to suffocate. They got me straight onto oxigen and told me I had hyperventilated but as soon as my breathing settled I started to go into shock. I started to feel extremely cold, like I had been thrown in ice water and i was shaking uncontrollably. My lips went blue and my arms and legs felt icy cold (all the blood was obviously rushing to major organs.

Once I was stabilized a doctor came in and suggested I had COPD or a bad asthma attack and so I was sent off for tests which showed no asthma and no signs of COPD.

A week later it happened again, exactly the same way and again once the busy emergency room had stabilized me and checked my heart and lungs, they sent me home. By now I was getting really frightened and so was my husband. My doctor scanned my liver, my womb, ovaries and stomach and just kept shrugging his shoulders.

10 days later it happened again but this time a consultant came in to see me and explained I was having something called Vagus nerve attacks and he suspected it was the small intestine that was the culprit. He took some blood tests and 'BINGO' it showed up Celiac disease.

I have now been on a totally gluten free diet for 3 months and touch wood have had no sign of another attack, though the thought of having another in the future terrifies me.

I have put on 17lbs in weight and am no more a regular at the loo than anyone else!

The only thing that really upsets me is, during this period of un-diagnosis my hair really thinned out. One of the things they discovered is that I was iron anemic but that has now been remedied. I hope my crowning glory does come back but even if it doesn't, I'm so glad that I am no longer poisoning my body and that I am getting better. I suddenly feel so full of energy and that old brain fog I had, had for so long has vanished.

To date, I haven't heard of anyone else having this sort of attack but would be interested to hear if anyone has had something similar.

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Maria, I just sent you a PM with some info that might help you. Go to the top right of the page and you'll see where to click to get my message.

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Maria, I just sent you a PM with some info that might help you. Go to the top right of the page and you'll see where to click to get my message.

Bartfull, thank you so much for this. As soon as I am able to reply to you properly I will.

Maria

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Maria, I too have suffered from problems with my vagus nerve. Vaso-vagal syncope from the pressure of the bloating - I always passed out briefly, knew it was coming on with ringing in the ears, dizziness, sweating, and would come to freezing colld and weak. It has now progressed to atrial fibrillation where my heart goes into abnormal rhythms when I eat anything containing specific lectins (the ones in foods in my list below).

I have been the loo route too - not knowing whether to sit on it or kneel in front of it :o:lol: I even fainted on the loo once :unsure: Fortunately I don't go that road any more :)

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I had a Vegas nerve attack while on the toilet just a few weeks ago, even fainted! Mushroom, is there something you have done to keep it from happening again?

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I had a Vegas nerve attack while on the toilet just a few weeks ago, even fainted! Mushroom, is there something you have done to keep it from happening again?

After a couple of years and a lot of research I have tracked my problem down to being caused by lectins in specific foods, in my case the lectins in corn, nightshades, soy, citrus, legumes, and gluten of course. So I have eliminated them. However, before I found the last of them my problem converted to atrial lfibrillation, and this is sometimes now set off by things other than lectins :( although lectins are the primary instigator if any creep into my food :ph34r:. I also now have problems with high altitude which can set off the a-fib. (I have moderate COPD so it could still be associated with a lack of oxygen, because I believe the bloating pressure was preventing me from oxygenating my blood properly. - I would have difficulty breathing from the bloating pressure.)

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I had fainting attacks for years (before being diagnosed with Celiac) and then they stopped for quite a while. I was gluten free for a while then had restart gluten for some tests. When I started going back off the gluten, I had another attack and almost passed out twice. At the same time I had, not to be too graphic, an attack of explosive bloody diarrehea. It was really scary. I'm sure it's related to something I ate. The ER doc tried to say it was from food poisoning from some fish I ate for lunch, but I really believe it was some sort of reaction from going back off the gluten. I may have been accidentally glutened or my body was just freaking out about going gluten free. Either way, it was scary.

When I had the syncope problem before, then ran all sorts of tests - EKG, EEG, Holter Monitor, CAT scan, tilt table test, etc. They never could figure out what was causing my episodes. I was put on a custom compounded medicine that seemed to help, because my attacks stopped. At the time I thought they were probably stress related. Now, seeing the link between Celiac and syncope, I think they were a combination of stress-related and gluten related. When this last attack happened, I was definitely under some major stress.

One thing that my cardiologist told me that made me feel a little less stressed was that, when you faint, your body realizes what is happening and sends adrenaline through your system. As a result, you're not out very long. The adrenaline kind of "jump starts" your body. But the adrenaline is what speeds up your heart and gives you cold sweats.

For me, I can usually feel when I'm about to faint now. I get this weird deja vu like sense and my head feels fuzzy. As a result, I've learned to stop whatever I"m doing and immediately sit down so I don't get hurt. I learned that lesson the hard way after passing out in the middle of a drug store once and while driving my car another time. Now that I know it's about to come on, I can usually prevent myself from actually passing out by pinching myself or biting my lip and trying to slow down my breathing.

Hopefully the diet will keep you from passing out any more. If you do, you might want to see a good cardiologist who has dealt with this issue. As for the hair, I have the same problem too. My is thinning terribly. Someone else on this board recommended testing for Hashimoto's Disease. I had my blood work done this morning. Also, my hair stylist recommended taking Biotin supplements. They seem to have helped me. Also, I've replaced all my shampoo/conditioner/styling products with gluten free versions. I didn't realize, but all of mine had some form of wheat in them. I figure it can't hurt.

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Thank you all for the replies.

Up until going onto a full gluten free diet, I often felt as though I was going to faint and can happily say that since I eliminated gluten, I don't get that feeling at all. I also used to get a lot of pins and needles in my hands and feet and that too has now passed.

I know that a 'Vagus nerve attack' can be a term for a faint but the nerve attacks I was having wasn't. I never fainted, lost consciousness once though leading up to the VN attack I had previously felt faint. My lungs just became paralyzed temporarily. The consultant who explained what was happening to me said that my Vagus nerve was getting cross wired and that can only happen through internal pain (normally the small intestine) and this confused signal to the brain causes the body to disrupt itself.

They have wanted to try and induce another attack under hospital supervision but I have refused. I know that I could be part of the research as to why this happens, I'm just too frightened, even in the best hands to risk going through this again.

Its very interesting hearing from your experiences and it would be even more interesting to understand why this happens. It just seems that celiac is so individual with its huge abundance of symptoms.

My mum, sister and her daughters have all just been tested. My sister and mum are always iron anemic and both have IBS but there tests came back negative. My niece has come back positive. My sons are refusing to be tested which is a shame.

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Hello All:

I came across this series of posts from as Google search on "Wheat Vagus Nerve".

I find all of your replies very interesting and would like to add mine for those searching for information but with differing symptoms.

I have struggled with the vagus nerve impact to breathing as Maria mentioned in the original post, but only an impact to breathing and nothing else.  But my symptoms were brought on not only by wheat, but also by other ingredients such as dark chocolate, probiotics, caprylic acid, mustard, fluoride in toothpaste/mouthwash just to name a few.  I found when I sat down my breathing would return to normal, but as soon I got up, the impact would return.

The impact to breathing would come 4-6 hours after ingestion and last for about the same amount of time.  At times I could not even take ten steps without having to stop, not being able to breath even moderately.  The symptoms now are decreasing in severity but not in duration.

My doctor checked my blood for celiac and results were negative. A number of chest x-rays to rule out COPD.  I am waiting on an appoint with an allergy specialist in a few weeks to see what they have to say.  Needless to say, it is difficult to maintain a healthy weight.

Thanks for your posts, and I hope my contribution is of benefit to others also.

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Posted (edited)

WOW! I had no idea there was a connection betwen vagal nerve activity  and celiac. I was diagnosed as glutten intolerant about a year ago and have tried to maintain a  glutten free diet but have not been completely glutten free. In the last 6 months I have been in the hospital 4 times. The diagnosis was Bradycardia, Aarymthia. Three cardiologist said it was Vagal activity causing the heart issues. I needed to discover what the underlying issues are that might be causing my heart problem. I also have hypoglocemia and hershimoto' disease which is a autoimmune disorder that affects the thyroid gland and many of the symptoms that others have talked about, the constant burping during the episodes which might last 24 hours, fainting,  difficulty breathing, ringing in ears, trembling in upper body, sleep apnea,stomach aches, diarrhea and others.

I had no idea that glutten could cause vagal activity. Why aren't  Doctors telling us? Is it because they don"t know?

Edited by joy steward

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3 hours ago, joy steward said:

WOW! I had no idea there was a connection betwen vagal nerve activity  and celiac. I was diagnosed as glutten intolerant about a year ago and have tried to maintain a  glutten free diet but have not been completely glutten free. In the last 6 months I have been in the hospital 4 times. The diagnosis was Bradycardia, Aarymthia. Three cardiologist said it was Vagal activity causing the heart issues. I needed to discover what the underlying issues are that might be causing my heart problem. I also have hypoglocemia and hershimoto' disease which is a autoimmune disorder that affects the thyroid gland and many of the symptoms that others have talked about, the constant burping during the episodes which might last 24 hours, fainting,  difficulty breathing, ringing in ears, trembling in upper body, sleep apnea,stomach aches, diarrhea and others.

I had no idea that glutten could cause vagal activity. Why aren't  Doctors telling us? Is it because they don"t know?

 How was celiac disease ruled out?  What made them think gluten intolerance?  Did you have an endoscopy?  

Celiac disease is systemic and can affect many organs outside of the GI tract.  I would suggest a second opinion to rule out celiac disease because a gluten intolerant diagnosis does not seem to be enough of a diagnosis for you to adhere to  strict life-long gluten free diet.  If you decide to get a second opinion, get copies of your medical records to save time and money.  

Why don’t doctors know the connection?  Because celiac traditionally was depicted as a having GI issues and most often in children who fail to thrive or are malnourished.  

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On 10/20/2011 at 2:47 PM, bartfull said:

Maria, I just sent you a PM with some info that might help you. Go to the top right of the page and you'll see where to click to get my message.

I too, have same symptoms, i would to access info that might help.

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On 3/24/2018 at 10:54 AM, cyclinglady said:

 How was celiac disease ruled out?  What made them think gluten intolerance?  Did you have an endoscopy?  

Celiac disease is systemic and can affect many organs outside of the GI tract.  I would suggest a second opinion to rule out celiac disease because a gluten intolerant diagnosis does not seem to be enough of a diagnosis for you to adhere to  strict life-long gluten free diet.  If you decide to get a second opinion, get copies of your medical records to save time and money.  

Why don’t doctors know the connection?  Because celiac traditionally was depicted as a having GI issues and most often in children who fail to thrive or are malnourished.  

 

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On 3/24/2018 at 10:54 AM, cyclinglady said:

 How was celiac disease ruled out?  What made them think gluten intolerance?  Did you have an endoscopy?  

Celiac disease is systemic and can affect many organs outside of the GI tract.  I would suggest a second opinion to rule out celiac disease because a gluten intolerant diagnosis does not seem to be enough of a diagnosis for you to adhere to  strict life-long gluten free diet.  If you decide to get a second opinion, get copies of your medical records to save time and money.  

Why don’t doctors know the connection?  Because celiac traditionally was depicted as a having GI issues and most often in children who fail to thrive or are malnourished.  

My Dr. did a blood test, positive for glutten intolerance, not celiac disease. About 15 years ago I was positive for celiac disease, tested by stool sample.  Since I posted I have tested positive for heavy metals. Also I have high gastrin levels. getting ready to test for that. 

It appears to me that glutten intolerance, vagal activity, high gastrin levels are all connected somehow. 

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1 hour ago, joy steward said:

My Dr. did a blood test, positive for glutten intolerance, not celiac disease. About 15 years ago I was positive for celiac disease, tested by stool sample.  Since I posted I have tested positive for heavy metals. Also I have high gastrin levels. getting ready to test for that. 

It appears to me that glutten intolerance, vagal activity, high gastrin levels are all connected somehow. 

There are no blood tests for gluten intolerance only ones for celiac. If you doctor did blood testing and the results were positive why do they think you are inolerant rather than celiac? If this was decided because only one or two tests in the panel came back positive be aware that only one test needs to be positive to be a positive diagnosis for celiac. You very well may actually be celiac.

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@joy steward— Ravenwoodglass gave you some excellent advice.  The Vagus nerve can be impacted by many things. So is there a connection between celiac disease and Vagus Nerve issues?  Who knows for sure?  Autoimmune can impact people in so many ways.

if you are still consuming gluten, consider getting to a Gastroenterologist who can actually take a look inside and give you a definitive answer.  

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On 3/29/2018 at 7:48 AM, joy steward said:

I too, have same symptoms, i would to access info that might help.

Bartfull is no longer with us.  She had celiac disease and has since passed away (cancer).  She was a wealth of knowledge and offered common sense advice.  

As the Queen of passing out in my family (and having doctors see me have a Vasovagal response, including seizure-type reactions), I think healing from celiac disease or other autoimmune issues helps.  At this point, your best bet is to stick to a strict gluten free diet or consider a gluten challenge to get a definitive answer as to whether you have celiac disease or not.  

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