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Neck-Tongue Syndrome?
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Neck-Tongue Syndrome?

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!
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Avatar_n_tn
I am a 21 year old Neck-Tongue Syndrome patient. I have had these "type" of episodes for as long as i can remember. I have been to a neurologist every year since i was 13 which is when i finally vocalized what was going on to my family. I always thought that this was normal since i had always experienced it. It took me a while to be examined by a doctor who knew what could be the reason for this to happen. I too find that dropping my head for a short while relaxes my neck enought to stop the throbbing pain.

I have found by going to the doctor that there are things which may trigger it including for me stress and not excersising. I have tried Physical theropy, accupuncture, massages, pills, daily range of motian techniques. I find that the use of a body ball which i lay prone on and roll as far as i can till my head touches the ground to help in case i can feel it comming on as well as an evening routine which i do as well as rolling my neck in circles and working my upper body.

I also found that as i got older my episodes became less violent(only the pain in face/neck are present with numbness of face, tongue and sometimes arms.) I find looking over my shoulder for an extended period of time to be my trigger mostly. When i was younger it would effect my whole side of body causing me to fall, or loose balance as well as become ill or faint because the pain was so great. I have stuggled more with it growing up.

I would tell you to go to your doctor get it checked out and find out  what you should look for. It helps to journal as well as to make note of what you were doing and what it felt like. It always felt like i jerked my head real fast. also something to look for is how you hold your head. Many times i put my chin up to relieve stress on my neck(or so it feels) but i was told to not do this.

Go in and become educated. E mail me-im interested to talk to someone with the same syndrome....ive never met anyone else.

***@****
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Avatar_n_tn
Hello both of you. Take my comments for what they're worth, but it sounds like gnatrea is talking about neck-tongue syndrome, which is ACUTE, brought about by rapid neck movements, and involves a distribution of symptoms only within the face/head, most often reported as numbness in the tongue. This is usually caused by an acute subluxation (partial dislocation) of the top two vertebrae of the neck, which causes abnormal input to cranial nerves and can cause symptoms in the cranium (head).
HOWEVER, morticiandame is describing (at least in the reports of her earlier symptoms) signs and symptoms of vertebral artery insufficiency, particularly if it is causing dizziness, loss of balance, or drop attacks (fainting). This is an important difference! SUSTAINED full rotation of the head can kink/obstruct the artery that goes to your brainstem, as can extending your head backward, and both should never be performed together. Rapid, full range rotation can also cause these. They likely were more severe as a child, because several key stabilizing components of your cervical spine were not yet developed (until about 18 years old).
It is important that both of you see a neurologist to rule out upper cervical spine instability that could threaten the arteries in your neck that feed your brain. Be sure to mention the full complex of your symptoms, especially what causes them (head movement)! A few key words to also throw in: vertebral artery, drop attacks, Neck Tongue syndrome. Beware, Neck tongue syndrome is not a well-known entity for most physicians, but if you use the term, they will probably look it up. The pertinent author is a neurologist from Australia, Nicolai Bogduk. Good luck.
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I as well have been experiencing these "attacks" since I was 10, I can still remember the first episode.  I always have been intrigued by the ipsilateral neck/tongue pain.  I have seen a neurologist and had a MRI performed and nothing was discovered.  I had already research neck-tongue syndrome and mentioned to the neurologist and she was worthless. She never even called me after my MRI came out normal.  My attacks are not as frequent anymore and I feel helpless because this is so unknown.  Does anyone have a physician in the US that is well informed on this syndrome? I have read that it could be caused by delivery and how the OB doctor pulled the baby out of the canal could have caused this cerivcal complication?  Does anyone know any long term effects?
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This can also be related, while uncommon, to a connective-tissue disorder.  If you also have what is called hypermobility which basically means you have the ability to do odd things with your fingers, joints, etc., this can be a form of that hypermobility due to the subluxation of the atlantoaxial joint in your cervical spine.  My son suffered from this for years and they could not find out what it was. I just recently found out that it was neck-tongue syndrome while I was searching for a cause for his "double-jointedness" which is actually called hypermobility.  I would suggest you look into other causes as well if you have some of the hypermobility issues related to connective-tissue disorders.
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I too have suffered from these strange sudden head pains for as long as I can remember. It's an intense blinding pain at the base of my head and my tongue always goes numb and feels like it swells up and occasionally my vision blacks out for a few seconds, and then it all fades away. I decided to look this up after having one yesterday and my search led me to neck-tongue syndrome, which led me here. After reading the first couple posts I started to wonder if this could be related to my joint problems, since it's supposedly the joints in the neck that cause it. After reading Weesy68's post I'm most sure of it. Many of my joints are "double-jointed" (hips, wrists, elbows, shoulders, and fingers). My arms bend 30 degrees backwards and 15 degrees sideways at the elbows, one of the more extreme cases my orthopedists have seen. (they're always amused when I go to a new one for the first time). My big question now is, can anything be done about it? Even if you know you have something like this, is there actually a treatment? or is it even worth treating? Meaning is it going to cause any damage in the long term?
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I too have suffered from the same thing since I was 11. I feel electric shocks on the base of my neck (on the rigth side) strong, sharp pain followed by numbness and tingling on my face and tonge, after this episodes, I can spend a whole week suffering from all kinds of symptoms on my neck, limbs and back.
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Yes, something can be done.  My son was sent to a neurologist for flexion and extension studies and is from there seeing a geneticist.  Some connective tissue disorders can only be diagnosed through genetics others can be diagnosed through blood/skin tests, etc.  The biggest reason to verify that you may have a connective tissue disorder is that you can begin taking medication that will currently help you or which will may prevent serious complications in the future.  Also, if you are subluxating near that join in your neck you can actually dissect an artery, which can kill you fairly quickly.  In Marfan's syndrome you can have heart problems which can kill you if they go undiagnosed.   There are a lot of connective tissue disorders so it's important to get a diagnosis because some may be mild with painful arthritis in the future and others can kill you due to the affects on your heart and your arteries.  Some you may want to look at are Ehlers-Danlos, Marfan's, Behcet's, etc.  Neck-tongue syndrome can also run in families.  My son's does.  His father and grandmother both have it.  Many of the connective tissue disorders are autosomal dominant meaning they are passed down from parent to child while others are recessive so for your children and grandchildren's sake I wouldn't ignore it.  You can help them out early in life instead of them having to wonder why they have these odd things going on.  =)  Good Luck!  Our genetic appointment is upcoming in March so we will see.
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Avatar_n_tn
Hello.

Im pretty sure I have neck-tongue syndrome. Ive been experiencing this since I can remember. I only have these a few times a year but when it happens my neck feels like somethings "popping" and then my face and tongue go numb for a short time.

In response to Weesy68 I have been diagnosed before with hypermobilty in my joints in my fingers, elbows and shoulders. Do you think this relates?

Does anybody think its worth asking my doctor about neck-tongue syndrome? Can it cause long term damage?



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Well, we saw the geneticist, and he stated that he feels my son has benign hypermobility, but that his neck  appears to be stable.  He confirmed the diagnosis of neck-tongue syndrome.  I also found out today that my son has scoliosis, so that was new to me.  I don't know if it will need treatment or not as the x-rays need to be done first, but I could see it right away when the doctor pointed it out.  Neck-tongue syndrome is rare, and I suggest you take information from articles on the internet, otherwise you risk getting that deer in the headlights look.  The concerns can be real if your particular case is because you have a serious connective tissue disorder such as Marfan's or Ehler's Danlos.  As far as my son goes, the doctor feels he is stable and that there is no reason to worry.  I did read tonight that scoliosis can cause some issues such as this, so perhaps if the scoliosis improves through physical therapy or surgery, if it's necessary, the neck-tongue syndrome may too.  Either way, I would see an orthopedic surgeon as I think they know more about the musculoskeletal system.  Take in the article.  That is what I did, and I've had a neurologist and geneticist confirm the diagnosis.  At least now I have the peace of mind knowing he won't dissect an artery in the process and that I was able to find out about the scoliosis.  I have no idea how that wasn't caught earlier.
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Avatar_f_tn
I've also suffered from neck-tongue syndrome since i was a child and thought it was normal - i assumed it was what people called "a crick in the neck". It was only as i got older that i realised - due to the alarmed reaction of a friend who witnesses one of these episodes - that this acute pain (it feels like an axe striking my head, followed by a fizzing sensation) and the numbness in my tongue was something different. Soon after i got referred to my local hospital and was lucky enough to see a doctor who'd just read one of the few medical papers on this syndrome. I had an MRI scan like sooners85 and there was no apparent abnormality. I dread it happening when I'm driving as my head always falls forward (or that's what i do to relieve the pain) but so far so good. Otherwise i'm in perfect health in my early 40s (i've run marathons) and think it's just one of those things.
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Avatar_n_tn
Hi, I'm 20, and I have also suffered from this since I was about 7 or 8, where i'd turn my head, and get the sharp blinding throbbing pain up the right side of the back of my head & neck, and the left side of my tongue goes numb, and feels swollen. It probably doesn't swell it just feels like it does because it's numb i guess. Anyway, I found the neck-tongue syndrome articles online, took them to my osteopath, and he found them interesting, but knew nothing about it. I mentioned it to my GP, and he basically laughed it off, like, don't believe everything you read, even though it explains my symptoms EXACTLY, and said it's probably a pinched nerve or something, and never got further into it. After reading a few of these posts, I'm a lil worried that it could cause serious problems later on! Do any of you also suffer from frequent headaches, including migraines? Because I do, and they also seem to be unexplainable, so frustrating!!
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Avatar_m_tn
I have also had these attacks.Turning my head too quickly.  Burst of pain at the base of my head and a paralyzed tongue. I really feel paralyzed for the 10-20 seconds of pain. I cannot move my head at all . My tongue feels inflated but STIFF and hard unable to move. It is a very scary situation that previously seemed to happen with sports. Yesterday it happened while gardening. I believe my first attack was 9ish. Now 36, I have probably had 20 episodes in my life.  Not quite once a year. But when it does happen it is a scary feeling. What if I was driving etc.
Am I  actually paralyzed?  Dr's don't seem to help. I have found Acupuncture helpful. But with episodes not even once a year, it is hard to tell.
Thank goodness I have found others with the same symptoms and I am not crazy. Thanks for this forum
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Avatar_n_tn
have constant neck and tongue spasms.   Jaw is also affected. My  chiro today said i have extreme tightness at c1-2.  He stretched me and i am worse tonight.  HAd some relief at the time but he pulled my head quite hard.  Dont know where to go for help anymore I am exhausted.  
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Avatar_f_tn
Wow,, now I dont feel so alone. I can't believe I found this! I;se had this as long as I can remember and have also had MRI's that didn't show anything. I also have degenerative joint & degenerative disk disease. Ant the instability in my cervical spine has caused bone spurs to form.I also experience hypermobility in just about all joints in my body which has caused arthritis and issues. I'm only 28 and this has gone on as long as I can remember. But it is so comforting to find others that can describe this wierd 'attack' perfectly. Let's me know there are others and I'm not crazy!
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Avatar_n_tn
I also have the horrible neck-tongue pain.  It can go for a month and the sharp pain doesn't come, but when it does come, it is horrible - very quick.  I am so thankful for this internet to find there truly are others with this syndrom (syndrome) - which I just got on line and discovered this.

Today I have had approximately 12 episodes and the last one was the worst.  I am hurting very badly on my left behind my ear and on my left shoulder.  I also have lower back problems and I am to see a neurologist soon.  You can be sure that I am going to mention this diagnosis to him.  

Thank you so very much everyone for sharing your info and allowing light to my very dark tunnel.

God Bless Each and Every One of YOU.

Goldie
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Avatar_n_tn
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 (syndrome), but I hope it won't come worst...
Aude
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Avatar_f_tn
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.
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Avatar_f_tn
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?
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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???
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Avatar_m_tn
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.
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Avatar_m_tn
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
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Avatar_m_tn
....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! :-)
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Avatar_f_tn
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.
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Avatar_m_tn
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!
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Avatar_f_tn
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?
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Avatar_m_tn
hi im 25 yrs old and i also feel something on my neck and under my tongue. please assist with medication
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Avatar_m_tn

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