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!

[BonnieMichelle16]

I've had these episodes for several years now. I'm 27 but what worries me is that everyone seems to have them a few times a year and I have them sometimes several times a week. It's really scary, there have been occasions where I've had the same episode 3 or 4 times in an hour or less. I turn my head and a sharp pain shoots from the base of my neck through my neck and into my tongue causing it to go numb and I can't move my head, speak or anything for a matter of a 30 seconds ranging to as long as 2 minutes. It's really scary and I'm not sure if seeing a doctor would help or not.

[McKLeash33]

Sounds exactly Like mine, i figured it was stress related but, that's me self diagnosing... It just happens more often when I'm stressed out for me.... And that's pretty much every day!!

[middle_brother]

hey im 13 years old and i seem to get these "episodes" where its like a pop in my neck then depending on how bad it is it either just goes away quickly or it stays for a couple of second in this eletric pain as descibied earlier in this blog. putting my head down almost always helps and sometimes my entire tounge can go numb. these seem to be the same symptons everyone else is getting but im getting this this quite often the day im writing this i have had 5!! please help

[McKLeash33]

So I doubt you will receive this or even come to this site anymore but I'm 31 and it's been going on for as long as I can remember...i was just curious if you have heard anything or gotten any solutions...its the weirdest and most painful thing and no one I know can relate. Hope all is well, and thanks for any info in advance

[Habeaslo]

Since I was a child I sometimes turn my head and a lightning-type pain appears that goes from behind my ear to the top of my head and half of my tongue also numbs at the same time. This has happened to me 25-30 times in the past 13 years. It always appears on the right side when I turn my head to the left. Does anyone else have these symptoms?

[Kayleenic5]

Nurse here.  I don’t understand it completely but it happens to me.  I don’t have an answer for sure but I think it’s from inflammation in ones neck.  The nerve that connects to ones tongue gets pressure on it and when the neck is adjusted that nerve and something else (muscle maybe?) push against each other then release.  The numbness is a result of the nerve being pinched for that moment.  It still scares me every time and I get this hot fluid sensation rushing.  Almost like blood flow just shoots through after it’s unpinched/ adjusted.  

[Kayleenic5]

Tongue- neck syndrome.  I second that.  Look it up people.  Still scares me every tine though.  

[Jenn_Voss]

I am a 42 female and have had this for as long as I can remember on the right-back side of my head and neck that traveled to my tongue until almost 3 years ago. In March of 2015 I had pretty nasty brain aneurysm that I was fortunate to survive. It happened to be located in my right PCA and was 1" in size. It was not there forever bc I had had an MRI about 10 years prior to this. Curious if anyone else has had blood vessel issues? My dad passed away from an AVM the same year I had the aneurysm. Thanks in advance.

[McKLeash33]

I'm so thankful to see I'm not the only one but after all these years, seriously no answers.... Also Ive read through many comments and all seem to be similar just as mine, except I'm 31 and get them several times a month... I was thinking they were stress related and surprised no one else came to that thought.... However like I said I just skimmed thru and read ones most relatable to myself. Either way thank you original poster, I have a list of questions I feel more comfortable asking my doctor on Thursday than I have before, and that's exactly why I never did cuz no one knew what I was talking about!!! I mean I know I'm an alien but come on... These peeps went to dr school... Lol, lol jk! Hope to get some answers Thursday. I'll update if so

[Carollee59]

Thank you for this site. Just like all of you out there I have experienced same sharp pain starting from my neck through my head and down to my tongue and numbness, brought on by a sharp turn of the head. Always thought is was totally normal since I was 7. Had a couple this week actually, but it normally only occurs once or twice a year. Not until a work colleague witnessed it and I explained did I realise it was not the norm. I am now 56. Suppose I will not bother asking a professional about this as most of you have commented that nothing really to be done. I certainly would not wear a neck brace for a twice a year experience! - not unless it occurs more frequently of course!

[Breathless2c]

I've also been dealing with this for many years.  Doctors look at you like your nuts. I even had one doctor tell me it wasn't possible. Even the neurologist did tests and couldn't give me an answer, it's a terrible feeling to go through this and feel so alone.  I'm so glad I finally see others who are dealing with this as well. I also give very bad ear aches in my right ear.  I have to say I did visit a chiropractor for my spine, not my neck, and it ended up helping the occurrence of both my neck and eat issues. They still happen but not as frequently. I had to go three times a week for an entire year but that's the only thing that has helped long term.

[Angelqueen777]

Im truly concerned and nobody wants to help!!! My daughter is now 18 and has been suffering for 16years with this. She was almost 3 when she was playing and all of a sudden she is on the floor crying saying she cant see. Of course I mentioned to her PCP with no answer. So this happened so frequently that it became something we were use to, but as she got old she started to be able to explain what was happening. " mom" I turn my head and it goes black I fall to the foor because for a moment I cant see it feels like my tongue is twistinging and I bite it, but cant feel me bitting it. Behind my left ear hurts right afterwards then comes my eye headache and then my eye swells. We have seen neuro and tgey did tons of test...still no answers. So one day I just put her symtoms in google and there and behold neck and tongue syndrome. Where do I go for help????  This is scary her eye swells and the pain is severe. Can someone please help.

[Kayleenic5]

Look up tongue- neck syndrome.  There’s an article you’ll find on google that describes ear stuff too with some cases.  

[Stephanie2095]

Hello,my name is Stephanie, Im 20 yrs old. I too have had this happen to me from time to time as long as I can remember. I'm sure its a nerve that I'm feeling but I get a sharp fast pain on the back of my head on the left towards my ear. I can only describe it as I feel like my head is caving in or denting right there and then I simultaneously feel a shock to my tongue in the center towards the back. It's not at all often and very random. Is this something to be concerned about? I did not know others experience this until today. I am usually fine but it is very uncomfortable and almost disturbing when it does happen.

[talflen]

Do these episodes only happen when you all turn your neck or does it sometimes feel like an involuntary twitch? I also thought this was normal until I had a bad one in December and told my parents that I've been having them for as long as I could remember. I'm so happy I discovered this as my doctor was wanting me to get an MRI and I would like to avoid having it done if it won't show anything abnormal

[Irishkenya]

Thanks for having this dialogue. I am 26 and recently had an episode in from of my parents during dinner. They were shocked to learn that this had been happening to me since 3rd grade. I had always thought that my experiences were normal so I never discussed it with a doctor. Now I certainly will. Does anyone know if there is a surgery or medication that will fix the issue? It only happens a few times a year and only lasts a short while but it is very painful.

[hammie12345]

is their anything the doctors have confirmed? medications? tips? please anything!

[hammie12345]

i though i was the only one and ur comment caught my attention the most because u nailed  it!everything u described is what happened to me. i am crying as im writing because  i never knew what was wrong with me and i would tell ppl and they look at me like im a freak! omg thank u for writing! i feel so much stress of my back knowing im not alone.

[hammie12345]

i though i was the only one and ur comment caught my attention the most because u nailed  it!everything u described is what happened to me. i am crying as im writing because  i never knew what was wrong with me and i would tell ppl and they look at me like im a freak! omg thank u for writing! i feel so much stress of my back knowing im not alone.

[Davi77]

I too have these symptoms, i didn't realise anyone else did, so actually i find that reassuring.  I started with the symptoms at about 13 and was concerned so mentioned it to my GP who gave me an explanation that i was catching a nerve on rotation of my neck.  But i don't think she appreciated how high up my neck the symptoms were.  I also get a sharp, electric shock- type pain that radiates upward to my scalp and round my jaw and my tongue.  I am 35 now and the 'attacks' have got better since i have become more aware how i cause them.   I am also a physio which helps with my knowledge of anatomy and posture.  I find my attacks happen when i rotate my head when i am not paying very good attention to my posture and i am poking my chin out.  Of course you can't check your posture 24/7 so it still happens, but less often.  I find that i have very active trigger points in my capitus muscle, which on pressure gives me a vague version of my symptoms, but on trigger point release improves my symptoms.  I think that physiotherapy has it's place in helping manage these symptoms, but now i have read this thread i am going to see my GP! I know that i too am hypermobile too and perhaps i need a better medical opinion!! If anything but to check that i am managing things ok and applying pressure around that area is a good idea.

[tammy76]

  My chiropractor diagnosed me with tongue neck syndrome! I have pain  with my spine in my neck at C2- (where my tongue and neck meet), and I have a slight curve in my lower spine that I was'nt aware of, as others have described.  I have had this problem since I was a teenager and I am now 35. I have had a CAT scan/ MRI, I have also seen oral surgeons and had mouth appliances made to keep my jaw in place. There is not a permanent solution.  I have tongue /neck pain, fullness in my ear and shoulder pain and my pain is now pretty much full time. I have found it worse of course when I turn my head like everyone else, and it seems worse when I am sitting-whether driving, or sitting at work. Muscle relaxers help a bit when you just need a break from the pain- but I don't want a lifetime of pills!  Right now I am getting massage once a week (with someone who understands what you have!) I find that if I keep my tongue pressed down to the floor of my mouth, it releases the pain a bit, but it's not a natural position for the tongue! I'm glad to read that I'm not alone

[ayoba1]

hi im 25 yrs old and i also feel something on my neck and under my tongue. please assist with medication

[Isleofwightdom24]

I've been suffering with this for as long as I can remember. I'm 24 now and was diagnosed when I was about 18. I don't think my GP understands the syndrome as she has said that she wouldn't feel happy about me using certain birth control pills as it could cause a blood clot! Is this true? Can anyone help me with this? I've found nothing online relating the two, but who knows?

[snowyfoxtrot]

I have this too! I am 31, female, in UK. It's weird as I just got it at work when I turned my head quickly to answer a colleague and had to just freeze  for about 20 seconds, holding my head in the same position so as not to further hurt myself. The left side of my tongue went totally numb and it felt like I couldn't move or speak.

I tried to explain it to a colleague and was amazed when she had no idea what I was talking about, which lead me to this site. I thought everybody had this and it just happened if you turn or move too quickly? Apparently not!

Do I need to seek medical advice? I've always had this since I was young, although it only happens once every few months. Whilst it's initially painful, or more of a 'shock', the weird feeling of paralysis/numbness only lasts about 20 seconds in all (although I often feel a bit sensitive for a while afterwards). Thanks for sharing!

[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