Hi there
For those folk who had/have vagus nerve symptoms please can you explain what your symptoms were/are. I have classic symptoms of eagles as in facial nerve, glossopharyngeal nerve and accessory nerve symptoms. I also have bad acid reflux and symptoms of my esophagus feeling numb and like air is trapped and i burp up air (not like gastro burps) i also feel like a belt like squueze around my middle…when i drink water i feel like a creaking sound as it goes down. Eating makes me feel rubbish. I struggle explaing symptoms…sorry to be a pain. Many thanks
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For some people, vagus nerve symptoms do include the types of gastrointestinal symptoms you have. For others it can be vocal loss, heart palpitations, blood pressure irregularities, breathing difficulty, anxiety, & even swallowing trouble. I had the blood pressure/heart issues, some vocal hoarseness, & periodic chest pain as my vagus nerve symptoms but never had the stomach troubles.
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Have you done the tilt table test for the vagus nerve? I can tell you that I passed out and my heart stopped beating on my first test in the 90’s.
I do have Eagle’s but no idea if this could be an aggravating factor. I am scheduled for another tilt table test but may not do it. My big Vagus nerve issue is symptoms I got before passing out on the tilt table. Feeling Hot, Sick to my stomach, Dizzy.
I had a modified barium swallow that showed a problem. Since I have a small hiatal hernia that got blamed for the silent reflux issue. Of course, no one really understood that perhaps Eagle Syndrome might be contributing. Due to radiation issues I passed on the regular Barium Swallow for now.
I have had a 3d reconstruction done on a CTA but they made no mention of what cranial nerves are being effected. They focused on the Carotid Artery and Jugular. I am having small strokes in the silent part of my brain and am convinced that Eagle’s is contributing (but so far prior to the reconstruction everyone telling me it is hypertension yada yada yada)
You might want to look into the Barium Swallow , Modified Barium Swallow or the one procedure where they stick a scope down your throat. So far I have refused that one but my symptoms are not as bad as yours.
You may have a separate problem (like a hiatal hernia) causing problems and then Eagle Syndrome may or may not be aggravating the issue.
I will tell you about a an incident that happened in physical therapy that relates to all of this. They had me lay flat on a table and inclined my head and neck with small inclination. I think part of my chest was included but dont remember. She had me lay with my feet out. I was told to look at the ceiling. Within probably less than a minute my body swung up on its own. My body was telling me I would die if I didn’t and was gagging as I swung up. At the time I thought it was my vagus nerve malfunctioning and telling me to flee. But what if my Vagus nerve was acting correctly because the Eagle Syndrome in that position was strangling me via Jugular, or it was pressing on the Glossopharyngeal nerve, or my hiatal hernia caused the gagging, etc.
She had me do it again with knees up and closed eyes.(not sure of the open/shut eye order. It might have been vice a versa) I tolerated it longer but as I did my body was telling me to get up. This time after about 2 minutes I said I have had enough and swung up by my brain telling me to get up not an autonomic response.
I dont have an answer yet as to why my body reacted the way it did but it shows there can be multiple issues combining together.
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@JugularEagle - [quote=“JugularEagle, post:3, topic:16962”]
I have had a 3d reconstruction done on a CTA but they made no mention of what cranial nerves are being effected. They focused on the Carotid Artery and Jugular. I am having small strokes in the silent part of my brain and am convinced that Eagle’s is contributing
[/quote]
Only a FIESTA/CISS MRI shows nerves thus the radiologist couldn’t comment on your nerves as they’re not visible CTA or any CT w/ contrast.
On our forum, we speculate as to the cause of ES symptoms based on our understanding of which cranial nerves cause which types of symptoms. I agree w/ you that your body response during your PT appt. was most likely vagal, however, I think based on the fact you’re having small strokes, it’s more likely your elongated styloid(s)/calcified stylohyoid ligament(s) are compressing your carotid artery as that cuts off blood flow & thus oxygen into your brain. Jugular compression reduces the rate of flow of deoxygenated blood from the brain which causes intracranial hypertension, a condition which is less likely to cause the “flight” response your body exhibited.
If your CTA wasn’t done dynamically, it may not specifically show ICA compression. Based on the evidence you’ve provided, I believe it is a problem for you and you should consider getting your ES surgery sooner than later as your small strokes could become a larger more serious stroke. ICA compression/irritation is more serious up front than IJV compression.
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Hi,
I’m pretty new here and only found out about my ES last May, but have had plenty of issues due to my Vagus nerve. The Vagus nerve is responsible for so much of our autonomic nervous system. My first major flareups more than a year ago were major tachycardia, so much so I had to go to the ER twice. Then is hit my digestive system, flared up GERD, it slowed down my ability to swallow and digest. My voice was affected. I could barely eat solid foods for several weeks. I lost weight and went down to 114lbs. I was winded all the time. I could hardly walk a few yards without having to stop. My eyesight was affected. I had brain fog and my blood pressure dropped. The one thing that got me through is to drink water. I was constantly drinking water. When I did it stopped the tachycardia. So the Vagus nerve runs alot of stuff. I also have Dystautonomia and anything irritates my nerves. I can’t drink coffee, can barely have chocolate, no stimulants and its still hard to workout at the gym. CCI is probably compressing neck nerves and my left IJV next to the elongated styloids. Not fun stuff.
Well wishes to you!
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I have tried for nine months to get dynamic testing and can’t get anyone to order. My GP ( Dr Adam Harker for anyone in Indianapolis who needs one) who is wonderful but limited in what he can do did try but Radiology shot him down and told him to refer me to Cleveland Clinic because they didn’t know how to do it. They don’t know how at a teaching hospital in Indianapolis, IN or anywhere else I have gone in the city. So I asked for 3d construction.
Before the report came the neurovascular surgeon said I didn’t show damage he would associate with a problem jugular or carotid problem and didn’t think I was in danger of a dissection. After the report, I completely disagree with him about my jugular. I don’t know what to make of this about the hairpin turn.
“There is 2 vessel branch pattern. The origins of the left subclavian,
left CCA, innominate, right CCA, and the right subclavian arteries
are patent.
Although the adjacent styloid processes are elongated, there is no
definite mass effect on the carotid arteries. However, the right
styloid process closely approximates the cervical right ICA with a
thin interposed fat plane (coronal series 502 image 123). Torturous
right cervical ICA with focal, approximately 50 percent narrowing at
the level of C2-3 at a hairpin turn (coronal series 503 image 122).
This is area of narrowing is upstream of the styloid process and not
immediately adjacent (for example, see the circle on series 503 image
124). Otherwise, the right and left CCA, carotid bifurcation,
cervical ICA, and petrous ICA are patent without focal stenosis or
dissection.
Right styloid process does exert mass effect on the right internal
jugular vein with severe narrowing between the transverse process of
C1 (sagittal series 504 image 177).”
This is unbelievable! I always wonder what a doctor needs to see to make the connection that what a scan shows is significant in causing the symptoms a particular patient has!! From your report it sounds like you have both ICA & IJV compression that need to be resolved.
Pretty crazy about no one knowing how to do a dynamic CT scan. I wonder if it’s just the terminology that is throwing them. It’s simply a CT scan done with your head in various positions ie looking left & right, up & down & perhaps on the diagonals. It’s not rocket science.
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I am using this older case now in my appointments to drive home the point that imaging in a neutral position is not enough. This man had severe symptoms when he turned his head but in neutral position the ICAs were “widely patent”
If it was not for this site, I wouldn’t even know to push this hard. Medical Gaslighting is a huge problem with Eagle Syndrome.
No one told me or recommended 3d reconstruction on any of my imaging. I found out about it here and then had to push very hard to get it.
This website is a Godsend. I hope others find their way here in the future.
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Good job finding a research article to support your request for a dynamic CT scan, @JugularEagle! That’s great self-advocacy. I hope your diligence pays off BIG TIME & SOON!!
I’m very thankful our site has been helpful for you. That’s what we hope for every member. As the saying goes, “Knowledge is power”. There are so many odd things that can go wrong in the human body that no doctor can know it all, however, it behooves each one to be willing to learn more about an obscure syndrome when a patient comes looking for their help w/ it rather than just dismissing the patient as not knowing what (s)he is talking about.
For me I believe the Vagus nerve irritation has caused digestive issues, low heart rate/high blood pressure, sleeping issues, autoimmune issues, and brain fog. I suppose you could also throw mood in there but that could just be because I haven’t found any answers.
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Hey, I’m new here and I haven’t yet been diagnosed. You are the only person I have come accross describing exactly what I’m experiencing. I get this exact feeling. If I don’t instantly move i feel like I will completly shut down. I always get it once I stop walking, if I’m on a bus/in a car and when sitting having a conversation. No other time. This is my main symptom. Laying down makes it slowly go Along with it comes an extremely intense pulling/pressure sensation at the root of my tongue, the top of my throat and in my throat, can occasionally progress to my chest. Always right sided. It’s not necessarily painful but extremely uncomfortable like I need to instantly move. I’ve literally quit my job and been indoors for a month. I have tinnitus too in the right ear. I’m not sure if you have similar symptoms as I’m new here and still learning how this works but any advice/insight would be great please.
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Hi there
My journey has been a hard one and gaining knowledge and sharing stories is invaluable. My vagus nerve is evil! Can i help you with any questions? Symptom sharing? I also have hip/pelvis/muscle pains. My pulsating tinnitus is horrid.
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I’m so sorry that the scan reports aren’t being taken seriously, it’s beyond frustrating…I’m glad though that your PCP is helpful, would you be able to get a referral to a doctor further afield who is expert at vascular ES, Dr Hepworth in CO for example?
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