Neck-Tongue Syndrome?

[gnatrea]

From time to time when I turn my head I get a sharp pain in my neck/head.  The pain is usually behind my right ear right where my head meets my neck.  Seconds later my tongue goes numb.  From doing a little research online I discovered this is probably Neck-Tongue Syndrome.  However, no one ever says if this a serious problem that should be looked at or not.  It only happens a handful of times a year and after I stand still with my head down for a minute I am fine.  Could someone please supply me with some more information.

Thanks!

[aphios5]

....me too. Happy to have found this page.  I've had these "attacks" as far back as I can remember...maybe 7 or 8 years old when I really noticed them...I could be doing anything, driving, talking, etc. and with a quick turn of the neck - **BAM** - a sharp, electric explosion in the right side of my neck, which I swear travels up behind my ear and over my scalp to the front of my head and simultaneously through my tongue. One time it happened while i was driving and it took everything i had to keep one hand on the wheel, one bracing my neck, and my eyes barely at a squint.  Very scary and even more scarier not knowing wth these things were.  They usually happen when I'm alone and I've only had one occur while I was in the company of another.  They asked what was wrong and I tried to explain but I was in tears and immediately exhausted from the pain.  I only get them 1-2 times a year, thank God and I think exercising and staying healthy may decrease whatever compression/bloat that may bring helping to bring them on.  Yay for self discovery! :-)

[stacy388]

I have had neck tongue syndrome since I was a child.  I some times have 10 attacks a year.  It seems that it depends on how tight my muscles are at the time.  Stress also makes it worse.  I was diagnosed by my neurologist three years ago.  Do not let a doctor tell you that your crazy or blow you off.  Lately, my symptoms have gotten worse. I have pain in the back of my neck and pressure behind my eye and in my ear.  I had an MRI done today.  I guess Chiari Malformation can sometimes go hand and hand with neck tongue syndrome.

[mama2my2]

I am so glad that I found this blog, I too suffer from this awful paralizing pain, just until last week I thought it happened to everyone, until I had it happen in the car while talking to my husband and kids, I looked in the back seat, and bam, it hit me, and I couldnt move, or talk or do anything but hold my head waiting for the pain to ease! My husband kept asking me what was wrong, when i could finally talk I said " You know when you pop your neck and half you tongue goes numb" His reply " Umm, no actually I dont!" I thought it happened to everyone, so it happened agian this morning, and I called my sister and asked her if it ever happens to her, thinking my husband must be the only one who it DOESNT happen too, LOL, and aparetly its ME! So I thought I would do some research and this is what I found, I cant believe it, I have been having this pains for as far back as I can remember, and mostly on my right side, but the left side will do it too, I never know when its going to happen, there is no warning, no signs, but it is a paralizing pain, behind my hear, all the way up the back of my head on the side that pops, and then seconds after my tongue will go numb, I can move, talk, think, anything, the pain is the worst pain I have ever felt, and I have had 2 kids! I just wonder why there isnt more information on this, should I go out and call my doctor, or are they going to think I am crazy and read to much on the internet???

[Lisail]

Wow, yours is the first description of what I've been experiencing since I was about 8 years old, back then they were far and few In between, now I'm 55 and they are happening more frequently, I've told my GP and nothing, I've gone to a neurologist and nothing either. I wish there was some explanation, it is very scary when it happens and no one can relate, thanks let's hope the future brings an answer. Lisa

[Habeaslo]

My symptoms are similar to yours, if I turn my head to the left, a pain like an electric ray appears from behind my right ear to the top of my head and at the same time my tongue also numbs. It only happens every few months for 13 years. What are your symptoms? The pain is always on the right side if I turn my head to the left.

[mblondett]

WOW!!! I am now considering going to the doctor. The same thing has happened to me since I was 13 years old. I am now 28 and this is happening constantly. Recently it happened in my sleep. Thank you for your post. Is there any meds I should look out for?

[Creatingalchemy]

Hello -

I am 38 and have had the same symptoms since I was about 7-8. I have had about 20 my whole life as well and there is a brief moment where I get disoriented and my vision blackens, but I usually just hold a second and I am fine. The same neck "electric pain" and numb tongue as everyone else is present.

[Missaudi]

Hello. I live in Switzerland, I'm 19 years old, and the doctors said to me I probably have the Neck-Tongue Syndrome. (Scuse-me for my bad english!)
I'm "happy" to see that I'm not the only one.. but in Switzerland, I don't know ;)!
The doctors do not know many things about this syndrom, but I hope it won't come worst...
Aude