Vegus Nerve (auto immune) specialist

[JayClay]

I recently came across an article, completely by chance, on the vagal nerves and issues associated with damage to them.

 

When I was reading the list of symptoms, it almost felt like I'd asked somebody to do a personality profile on me and gotten a 100% accurate reading back...

 

I'm thinking of speaking to a doctor about potential diagnosis and, if diagnosed, treatment options. However there are a couple of issues with following this path:
 

• Firstly, all of the symptoms could easily describe a mini-cocktail of certain other conditions, so I could be barking up completely the wrong tree
• Secondly, it looks like diagnosis could be extremely expensive; the literature I've read talks about MRI scans.... I have insurance that will probably cover treatment for the condition if I get a diagnosis, but the cost of actually getting diagnosed could be significant

 

My biggest concern is going to see a doctor, describe my concerns, and have the doctor decide it's probably something else, thus sending me on an expensive wild goose chase. This has happened before with a (probably) unrelated issue, and I don't have the money (or energy) to go through that all over again. I unfortunately have a habit of letting doctors persuade to go down these paths and, so far, they've never hit the mark.

 

If possible I would like to consult directly with a doctor who has specific experience in auto-immune deficiencies, preferably one who has experience with the vagal nerves, and will give a genuine recommendation on whether it's worth spending the money on further diagnosis or if I should forget about it. 

 

 

Edited June 29 by JayClay

[Sheryl]

Rheumatologists are the specialty which deal with most autoimmune diseases.

 

However symptoms related to the vagal nerve can also be hormonal, GI, or even psychological, in origin.

 

And you cannot, on your own, determine that your symptoms are vagal in nature. Much less that the cause is autoimmune.

 

It is impossible to advise you without knowing exactly what your main troubling symptoms are, and where in Thailand you live.  Please post these details. 

[JayClay]

Hello Sheryl. Thanks for your reply. I am aware that I cannot determine this on my own, which is why I'm looking for guidance.

 

Regarding symptoms... here is the article from which I am taking my information... I'll start off by go through the listed potential symptoms:

 

You may experience:

• Abdominal pain and bloating.
  yes, I frequently get these issues
• Acid reflux (gastroesophageal reflux disease, GERD).
  again, this is a frequent problem for me
• Changes to heart rate, blood pressure or blood sugar.
  I have had occasional cases of heart palpitations, sometimes quite severe
• Difficulty swallowing or loss of gag reflex.
  Not that I can significantly remember
• Dizziness or fainting.
  Yes I have fainted a couple of times over the past few years
• Hoarseness, wheezing or loss of voice.
  Not particularly
• Loss of appetite, feeling full quickly or unexplained weight loss.
  Loss of appetite, followed by feeling extremely hungry very quickly describes me 100%. I don't know how to class unexplained weight loss. I go up and down in weight but this can probably be explained by an inconsistent diet and exercise routine.
• Nausea and vomiting.
  Occasionally, yes

 

The article also makes the following observations:

 

Your vagus nerve can be involved with these conditions:

• Gastroparesis: Gastroparesis occurs when damage to a vagus nerve stops food from moving into your intestines from your stomach. This vagal nerve damage can result from diabetes, viral infections, abdominal surgery and scleroderma.
• Vasovagal syncope: Syncope is another word for fainting. Vasovagal syncope occurs when a vagus nerve to your heart overreacts to certain situations like extreme heat, anxiety, hunger, pain or stress. Blood pressure drops very quickly (orthostatic hypotension), making you feel dizzy or faint.

Getting too hot for too long, being hungry, and being stressed all make me feel faint to the point I feel I could collapse (but never actually do). Honestly, I always thought this was just kind of normal human behaviour (maybe somewhat amplified in my case) until I started speaking to others about it and found out that, no, this is not normal.

 

Other reasons I think it may be nerve related is that I often wake up with some extreme pain down either my arms or legs. Again, I always thought this was pretty normal and the pain usually subsides within half hour or so, so I've never read too much into it. However, recently I had an incident where the pain didn't stop and I ended up having to get treated for tendon inflammation. I don't know if this can be related of not, but the article does briefly mention the following potential treatment 

 

• Wearing compression stockings to keep blood from pooling in your legs.

 

In addition, I also suffer from some quite strange reflex actions.

 

As I stated in the OP, I understand that there are a lot of conditions that could lead to some or all of these symptoms. The big fear I have is by going to a doctor and listing off all the symptoms above, they're just going to tell me I'm depressed, prescribe me some pills, and tell me to come back again if I'm not feeling better. And I don't have the money to see doctor after doctor trying to figure out what's wrong. I figure I've got one shot at this, so I want to give myself the best chance of seeing the right doctor for the right reason.

 

 

 

[Sheryl]

Ignore the article, please. People like to think (or hope) that all the symptoms/discomforts they have can be explained by a single, unifying disorder. Rarely is this true, and mass media articles are not a reliable source of medical information. More often people's symptoms are a mixed bag of normal occurrences and different, unrelated,  ailments. Vagal nerve damage in the absence if diabetes or past surgery is extremeley rare.  The only autoimmune cause of vagal nerve damage I am aware of is Scleroderma and nothing you say is  suggestive of it.

 

The vagal nerve is highly sensitive to emotional and other stresses and is indeed often involved in feeling faint etc. This is not an indication of nerve damage. 

 

You will get nowhere trying to get a doctor to follow up on your self diagnosis. However it does sound like you may have a few, separate, issues that might warrant  medical consultation:

 

1. GI issues :  abdominal pain and bloating; occasional nausea and vomiting. You also say "GERD" but please tell me the actual symotoms as I find people often confuse GERD with symptoms of gastritis. Also please indicate if you have seen a GI specialist yet and, if so, what diagnosis and treatment were given. If you have not seen one, a consultation may be in order. Where do you live? Are you overweight?

 

2. Heart palpitations and episodes of fainting: have you ever seen a cardiologist to evaluate this? While this can be due to just anxiety (or too much caffeine) it can also be a sign of something more serious,  and if these episodes are frequent then you should get a  cardiac evaluation. Again, where do you live? 

 

As for waking up with pain down either arms or legs, this cannot be relsted to the vagal nerve and as it is not consistent (i.e. sometimes arm, sometimes leg) and goes away after getting up, I would not put much importance on it, could just be related to sleeping position, with or without some age related arthritis  if you are over 50 (40 if obese) .How old are you. and are you overweight? You can see an ortho specialist if you want but they are likely to react as I just did. If the pain was consistently in same place and not limited to a few minutes in the morning then further investigation, like Xrays etc,  might be warranted but it hardly sounds so. Also sounds like this was not an issue to you until you read this article.

 

Feeling faint when overly hot or hungry or stressed is normal. Vagal nerve stimulation may be involved if the faintness is severe but this is normal vagal nerve reflex, not an indication of nerve damage.  Again note thst the vagal nerve is highly sensitive to anxiety. 

 

 

 

 

[JayClay]

Helly Sheryl. Thank you again for your response.

 

I spend my time mostly between Pattaya and Bangkok. I am in my mid 40s. I am not at my target weight for my height; but I wouldn't look at myself and call myself significantly overweight. I suppose it's not for me to judge, really... I was told by a doctor, about 10 years ago, that my target weight is 77 kilos. I was all the way up to 97k at the time, so I was certainly significantly overweight then. However I got down to around 82 and these days it tends to bounce around between 83 and 88k.

 

1 - No I've not seen a specialist. As I said, I always thought it was quite normal to have a constantly phlegmy throat and heartburn almost every day.  The term 'GERD' was in a line copy and pasted from the article, I was just commenting on the line as a whole (Acid reflux (gastroesophageal reflux disease, GERD).).

 

2 -  On the point about caffeine - I did drink a lot of coke zero in the past, and the palpitations were far more frequent before I gave that up... though the collapses started a couple of years after giving up the coke zero (they may or may not have been a few days after a 'relapse' - I really couldn't be sure*). I don't drink coffee, so I don't think that there's a lot more caffeine left in my diet, apart from the odd chocolate bar. As for getting evaluated, to be honest even a heart attack sounds far less stressful, not to mention cheaper, than a long course of trying to consult with doctors and months or years of hitting brick walls, eventually leading to them just shrugging their shoulders, which has been what's happened over the last ten years when trying to diagnose an unrelated issue. I just can't face hearing a doctor say for one more time "that's very unusual for a person in your age"... as if that's some kind of final diagnosis and I'm just wasting their time for complaining. I don't have the mental strength to deal with that right now.

 

Regarding your comment of the arm and leg pain not being an issue until I read the article; that is not correct. I noticed it after having been treated for inflamed tendons, where I was unable to walk properly for a week. One day I woke up in the middle of the night for a pee. There's quite a long walk to the bathroom and I was having trouble putting any pressure on my right leg. I wasn't worried on the way there ; as I say these pains are quite normal for me and I just assumed that by the time I got to the bathroom I would be okay. However, by the time I got back to bed the pain was in fact more intense. I did manage to get back to sleep, but then the following morning the pain was even worse. Neither my girlfriend (who was asleep at the time), not I could rule out the possibility that I'd had a fall in the night so we decided to leave it a couple of days to see if things got better. They didn't, and therefore I went to hospital where I was x-rayed to ensure that I hadn't broken or fractured anything. This was ruled out and and eventually I was given an injection and a course of tablets to clear up an inflammation. He said that if the symptoms didn't clear up I'd need to come back and be tested for gout.

 

Luckily the symptoms did eventually fade away (although it took a lot longer than the doctor had suggested). Since this incident, however, I have become hyper-aware of these little aches and pains... now every time I wake up and the pain is a little more intense than usual, I get a little freaked out that the inflammation may come back.

 

This all happened a few weeks before seeing the article.

 

Yes the feeling faint under the aforementioned external pressures is extremely severe. The only way to avoid it is to over eat (thus aggravating the digestive issues), do nothing at all that requires any kind of brain activity (just writing this post, for example, raises my anxiety and leaves me sitting at my desk feeling a little shaken. If I spend a long time trying to problem solve the anxiety builds up and up, and I feel more and more faint and distressed), and limit interactions with other people as much as possible. I have previously considered the possibility, due these symptoms manifesting themselves in certain situations over the last couple of years), that I may in fact have an undiagnosed learning difficulty. I briefly considered getting myself assessed. But firstly I don't know if any doctor would entertain the concept. And secondly, I just don't see what help such a diagnosis would be this late in my life - in fact I can envisage such a diagnosis actually making things worse for me.. That's why this article on the Vegas Nerve caught my eye; a "silver bullet" that covers all the stress related issues, potential heart issues, and digestive issues, and even perhaps the circulation issues (which you have now ruled out) is a very tempting proposition. I understand that it is an article from a private company trying to sell their treatment therapy, which is why I figured out it would be best to get some advice before trying to see a doctor, ie posting here. Obviously the advice I received is not what I wanted to hear, but that saves me at least a couple of thousand baht, I guess. It also prevents me getting my hopes up just to have them shot down later down the line. It's always a lot less disappointing for one to have an avenue ruled out at the start, than to embark on a journey, get ones hopes up, and then deal with the disappointment after a few months of false starts.

 

 

* I'm not sure it's just the caffeine in coke zero that was aggravating my conditions, perhaps there's also an allergic reaction to some other ingredient. In the past I would regularly drink around 0.5 - 1.5 litres a day. I got sick (often to the point of hospitalisation) around every 3-4 months, but didn't link it to the coze zero until after I'd given up and suddenly the episodes stopped. Every time I 'relapse' and drink a can or two over the course of a day or two, I feel the symptoms coming back on. If I don't head the symptoms and stop drinking it (yes, I can be that stupid :() then eventually I will get sick again; a day or two of intense vomiting, followed by a week - three weeks of fever (particularly night fever). Additionally, regardless of whether I just have 1 can on 1 days, or a few days having a can or two, when I stop I will feel extremely low for 2-3 days. It's almost like I'm suffering from the world's stupidest addiction.

 

 

 

[Sheryl]

It sounds like the pains in the arms and legs bot have resolved and you re just hyper-aware of every little ache and pain now, but do not actually have anything that would warrant evaluation on that score.

 

You did nto reply on the abdominal pain and bloating, which is quite different from GERD. So presumably this is not every day or severe. If it is, re-post and I will suggest a doctor. As for the GERD, home management is:

 

- lose weight if possible

- avoid caffeine

- avoid any other foods that seem to trigger it (this is highly individual)

- do not take any food for at least 2 hoyrs before lkying down

- sleep with your head elevated, this can be dine by raising head of bed on bricks, cinderblocks etc or by pillows (there is something called a "GERD pillow" you can buy online, or you can ad lib)

 

If despite those it is bad enough that you are having toi take antacids every ither day, seeing a doctor is advisable.

 

Re the feeling faint, likely related to your blood sugar and I suggest you google diets for  hypoglycemia/ stabilizing blood sugars.

 

Above all you seem to have an anxiety disorder and to be excessively focused on your health (common in anxiety disorders).  I would suggest seeking treatment for that, basically means psychological counseling, sometimes accompanied by medication (but start with counseling first). If amenable to that, see the pinned Mental Health Resource list in this forum.

 

It is unclear how frequent heart palpitations and fainting (actual passing out, not just feeling faint) are now but if still happening now, you should see a cardiologist. Confining yourself to this issue and not veering off into all the other things you mention. Otherwise, the checkuop mentioned below should catch any serious heart rhythm issue.

 

If you have not had a general check up in the past year, you should do so, there are packages at both hospitals and labs. In your mid 40's, with no known systemic diseases, should check the following:

-HB1Ac

-Lipid panel: HDL, LDL, triglycerides

-Creatnine

- Liver enzymes: Alt/AST soemtimes called SGOT/SGPT)

- CBC

-  Exercise Stress Test. This will check your overall cardiac fitness, check the health of your coronary arteries and also show if any abnormal heart rhythms are occurring under the stress of exercise.

 

Suggest the first package ("Classic Heart" 5,500 baht) listed here, and selecting EST over Echo

 

https://bangkokpattayahospital.com/packages-promotions-heart-center-en/heart-care-package-en-2/

 

And ask them to  add  on HB1Ac (better pre4ssure of blood sugar than fasting sugar)

 

 

 

 

[JayClay]

Thank you again for your assistance, Sheryl.

[DrJack54]

Locked at OP request