I have been a member of livingwithtn for a few months. Last year I started having symptoms of ATN on my left side affecting my teeth, jaw, cheek and ear. I have been taking Amitriptyline for that and it has been working very well. I am here on recommendation by one of the moderators from that page.
I have recently been experiencing odd symptoms on my right side. Primarily with my tongue. It is causing me a lot of anxiety. The right side of my tongue feels sort of numb, sort of sore and tingly. It has been coming and going for a few months. Recently I have started to experience some tingling on the roof of my mouth, zapping nerve pain shooting through my teeth on the right side, along with tightness in my jaw and some tiny spasms below my lip (all on the right side and similar to what I experienced on my left).
It is still mostly the tongue though. It does come and go but is almost always there to some degree these days.
I am waiting to see a specialist in Toronto but am considering going back to my GP. Just looking for other members that have problems with their tongue and descriptions of what they have gone through with it please.
I have pain in my left ear, l jaw, L teeth, left tongue, Left upper pallet, L throat, L face, L head, Left neck, and down into my left shoulder. The location, intensity, and duration of pain changes locations constantly, with the most frequent (daily) pain in left ear and left Jaw. Ear pain can be inside, or outside.
I have multiple issues. I have a 2.3 x 1.2cm cavernous malformation deep in my brain, Was diagnosed with glossopharyngeal neuralgia. A 2nd neurosurgeon thinks its possible that was a misdiagnosis, but isn't sure, and a anesthesiologist I'm seeing now, says it is GPN. I have higher tissue volume loss than normal for a patient my age, calcification at the malformation site, and at the brain stem, where it is believed I have a damaged cranial nerve, possibly due to illness, or injury. (the GP nerve) I also have cervical arthritis, with severe spondylosis. I'm on Lyrica and Immiprimine to help with the neuralgia, and morphine for headache pain. I've just had my 4th Lidocain infusion, intended to help with all of the nerve pain. Nerve pain is mostly left side, but does occur from time to time on the right for short durations.
Most, if not all of the drugs manipulate nerve transmitters, the neuron its self, and the neural receptors in the brain.
Wow you are really dealing with a lot! Thank you for replying. With this new tongue symptom I am quickly seeing how much more wide spread this problem can become.
I have been dealing with Type 2 TN on my left side for about a year affecting my teeth, jaw, cheek and ear. Not fun at all! I am on Amitriptyline and have been pain free until all this stuff started happening on the right side. It is frightening to have no idea what is happening.
I see that you are in Canada too. In beautiful British Columbia! I spent some time out there touring around Vancouver Island camping. The west coast is absolutely gorgeous. I am just outside of Toronto.
Anyways, I am waiting to see a specialist and just trying to gather info for myself and hopefully some comfort.
GPN has specific areas where it attacks and not everyone experiences it in all areas at the one time, or the same type of sensations. Some may experience one symptoms, others all. Also the degree of pain will vary. We are all similar but yet unique!
Given you have had TN for a while you would realise neuropathic pain can be burning, tingling, stabbing or zapping type pain, or a combination of these. Sometimes with GPN it can feel like you have a lump in the throat quite a while before pain starts.
Mine is right sided and it affects the soft pallate area, tonsil area, back portion side of my tongue, back of nose and throat, deep in my ear, and down my throat and neck (the neck side more the vagus nerve). When mine started it was just a feeling like a lump in my throat on and off. Then in 1999 it struck big time like something was burning like acid there. Over the years it graduated to other places.
My attacks, when they occur, are extremely severe and pain is 24/7 every few minutes constantly without triggers like swallowing etc., and last for approx. 4-6 months like this. So on its own the pain comes every 3-5 minutes, and if I swallow or make any movement it comes within a shorter period of time.
I have multiple sclerosis and also sjogrens, so a double whammy and recently was diagnosed with another rare condition of the inner ear. Both the MS and Sjogrens attribute to this condition. The attacks usually coincide with an MS attack and having extreme dryness from the Sjogrens makes it a lot worse as the dryness aggrevates it further.
When I first had this there was very little information out there. Even 7-8 years ago there was basically only one paragraph of information out there. However, now we see lots of information if we google which is a good thing. I remember the ENT guy writing a scathing letter to my GP around 15 years ago stating absolutely nothing wrong with me, that I needed psychriatric assessment. That there was no visible lump and no reason for pain. My GP was horrified at this man's response! Needless to say I never went back to him and another ENT diagnosed me during a very severe attack.
If you have a look at this diagram you will see the distribution of the GP nerve cranial nerve 9). With the GP nerve it then runs into the Vagus (cranial nerve 10) nerve and if this are gets affected (which in me it does), respiration and heart rate and blood pressure all become affected. They then call this vagoglossopharyngeal neuralgia.
Cranial Nerve #9: Glossopharyngeal Nerve
Description and Physiology
The glossopharyngeal nerve originates from the brainstem and has both sensory and motor functions. The term glosso means “pertaining to the tongue and pharyngeal means “pertaining to the pharynx”. Therefore, it makes sense simply from the name that the glossopharyngeal nerve controls tongue and pharynx. The glossopharyngeal nerve only motor function is supplying efferent motor fibers to the stylopharyngeal muscle, which elevates the pharynx. This nerve also receives afferent sensory signals from the pharynx, tonsils, middle ear, and posterior of the tongue. Sensory fibers are also received from the carotid bodies, which detect increase in blood pressure in the sinus of the carotid. Afferent signals can then be sent to the medulla where the stimulation of the medulla leads to a decrease in arterial blood pressure and heart rate. This reflex is known as the carotid sinus reflex.
Glossopharyngeal Neuralgia
Nerve Damage :
Glossopharyngeal neuralgia is a condition in which there are repeated episodes of severe pain in the tongue, throat, ear, and tonsils, which can last from a few seconds to a few minutes.
Symptoms:
Severe pain in areas connected to the Glossopharyngeal Nerve.
Back of the nose and throat (nasopharynx)
Back of the tongue
Ear
Throat
Tonsil area
Voice box (larynx)
Symptoms are triggered by swallowing,laughing, coughing or talking.
Treatment
Simple over the counter pain killer wont do much help. The most effective drugs are antiseizure medications, such as carbameoine, gabapentin,and phenytoin. Some antidepressents such as nortriptyline may help some people.
Trigeminal neuralgia has a different distribution. I also get this with my MS but it isn't as bad as my GPN and not as often. But it is VERY COMMON with MS. GPN can also be associated with MS and sometimes the first symptom.
The vagus nerve is a mixed nerve with both sensory and motor functions. It is the longest of the cranial nerves as it extends from the brain stem, through the muscles of the mouth, neck, thorax, lungs, and abdomen. The vagus nerve conveys sensory information about the state of the body’s organs to the nervous system. It also receives a special sense of taste sent from the epiglottis. The posterior muscle of the tongue, the palatoglossus, is controlled by the vagus nerve. The vagus nerve helps to regulate the heartbeat, control muscle movement, keep a person breathing, and to transmit a variety of chemicals through the body. The vagus nerve controls muscles resulting in voice resonance and also the soft palate. It is responsible for homeostasis of the digestive tract, and contracting the muscles of the stomach. The vagus nerve controls the small and large intestines to help process food. The vagus nerve also sends sensory signals to the brain about what is being digested and what the body is getting out of it.
Gastroparesis
Gastroparesis is a condition where the stomach takes too long to empty chyme into the duodenum of the small intestine. This condition is also called delayed gastric emptying. Damage to the vagus nerve causes disfunction in the contracting of the smooth muscles of the stomach. This causes the food to move slowly through the alimentary canal or stop completely. There are many varying symptoms of gastroparesis including pain in the upper abdomen, nausea, weight loss, abdominal bloating, heartburn, lack of appetite, stomach spasms, and gastroesophageal reflux. The symptoms may range from mild to severe and may be aggravated by consuming high fiber foods like raw fruits and vegetables.
Gastroparesis is most often caused by diabetes. The high levels of blood glucose damage the blood vessels carrying oxygen and nutrients to the vagus nerve and chemically alter the signals sent through the nerve. The high levels of blood glucose eventually lead to damage to the vagus nerve. If chyme lingers too long in the stomach bacterial overgrowth due to food fermentation may occur. Gastroparesis is a chronic condition and is not cure by treatment. Gastroparesis can be improved by dietary changes like avoiding the consumption of high fiber or high fat foods and eating six small meals a day rather than three large ones.
Damage to the Vagus nerve
Damage to the vagus nerve can result in trouble with moving the tongue while speaking, or hoarseness of the voice if the branch leading to the larynx is damaged.
Hearing loss may result from damage to the branch of the vagus nerve that innervates the concha of the ear.
Damage to the vagus nerve can cause cardiovascular side effects, including irregular heartbeat and arrhythmia.
Cranial Nerve #5: Trigeminal Nerve
Description and Physiology
The fifth cranial nerve is called the trigeminal and originates from the pons. The trigeminal nerve deals with motor and sensory signals. The main function of the trigeminal nerve is to receive sensation from the face and control the four muscles of mastication. The four muscles of mastication are the masseter, temporalis,medial pterygoid, and the lateral pterygoid. These four muscles create the adduction and lateral motion of the jaw.
There are four main nuclei associated with the trigeminal nerve are the three sensory nuclei the principal sensory trigeminal nucleus, the spinal trigeminal nucleus, the mesencephalic trigeminal nucleus, and the motor trigeminal motor nucleus.
The sensory trigeminal nucleus is responsible for the sensation of light touch for the three sensory trigeminal nuclei. The primary sensory nucleus sits laterally to the motor nucleus on both sides of the brain.
There are three major divisions of the trigeminal nerve that run along the face. The first division is the opthalmic division, also known as V1, which provides sensory information from the forehead, upper eyelid, and eye. The second division,V2, the maxillary branch provides sensory information for the lower eyelid, nostril, cheek, upper lip, and gums. The Mandibular branch is the third division also known as V3 that provides sensation of the lower lip, gums, and jaw.
Trigeminal Neuralgia
One disease affecting the trigeminal nerve is trigeminal neuralgia. A person experiencing trigeminal neuralgia may suffer an episode of facial pain that can last as long as two minutes. The cause of this disease is not currently known, but it may have to do with blood vessels putting pressure on the trigeminal nerve as it leaves the brain stem. The vessels pressure on the nerve may cause the myelin sheath to deteriorate, which would affect the nerve’s ability to generate action potentials and may lead to the facial pain.
A person suffering from Type 1 trigeminal neuralgia often experiences sharp facial pain half of their day. Those affected by type 2 also experience pain half the time, but their pain is described more as a burning. This disease can have many triggers including something as benign as applying makeup or brushing your teeth. Surgery, anticonvulsants, and migraine medication are possible treatments for trigeminal neuralgia.
My advice to you Jane would be to try and source out where your pain is orginating since you have TN and now showing signs of GPN. First thing would be a brain MRI to rule out MS. Second would be have a CT scan done to check your styloid processors for Eagles syndrome. They should be the first things done here if you haven't had them done already as there always is a cause for this, it is a matter of finding what it is whether it is a physical obstruction, or caused from brain lesions, or nerve damage through disease or accident, or compression of a blood vessel. The blood vessel compression is not always seen on imaging. More so found on surgery after everything else has been ruled out.
I have been dealing with Type 2 TN on my left side for about a year. I had an MRI to rule out MS. My mother has MS and has also had several Type 1 TN attacks throughout her adult life, so I do know more than the average person about that. My MRI was clear. My journey with TN started in the dental chair with an unnecessary root canal. I have only seen my GP and a local neurologist so I have basically led the way so far. I was put on Amitriptyline 40mgs and it has controlled my left side ATN very well. My symptoms for that affect my left side teeth, cheek, jaw and ear. I would be pain free in the morning and the pain would start in and climb through the day. It would hit different areas and each day was different but basically followed a pattern that I came to know very well.
The tongue thing has been going on for a long time. As you describe it feeling like a "lump" back there is a good analogy. It has been more of an annoyance than actual pain. I have largely ignored it because my doctor couldn't see anything visually and, quite frankly, with all of the stuff on the left side I was tired of feeling like I was crazy with these invisible ailments. I am also showing symptoms of ATN on the right side now too--in the teeth, jaw, around my bottom lip and tingling on the roof of my mouth.
I have finally made an appointment to see a specialist so I am waiting on that before I can gain anymore information or have any tests done. I am trying to gather info, and some comfort, for myself in the meantime.
It sounds like you have been through a lot and are dealing with a lot. Thank you for taking the time to explain all of that and including some great visuals. Knowledge is power for me and I am learning a lot as I go.
Thank you
Kaz said:
Hi Jane,
GPN has specific areas where it attacks and not everyone experiences it in all areas at the one time, or the same type of sensations. Given you have had TN for a while you would realise neuropathic pain can be burning, tingling, zapping type pain. Sometimes with GPN it can feel like you have a lump in the throat quite a while before pain starts.
Mine is right sided and it affects the soft pallate area, tonsil area, back portion side of my tongue, back of nose, throat, deep in my ear, and down my throat. When mine started it was just a feeling like a lump in my throat on and off. Then in 1999 it struck big time like something was burning like acid there. Over the years it graduated to other places.
My attacks, when they occur, are extremely severe and pain is 24/7 every few minutes constantly without triggers like swallowing etc., and last for approx. 4-6 months like this. So on its own the pain comes every 3-5 minutes, and if I swallow or make any movement it comes within a shorter period of time. I have multiple sclerosis and also sjogrens, so a double whammy and recently was diagnosed with another rare condition of the inner ear. When I first had this there was very little information out there. Even 7-8 years ago there was basically only one paragraph of information out there. However, now we see lots of information if we google which is a good thing.
If you have a look at this diagram you will see the distribution of the GP nerve cranial nerve 9). With the GP nerve it then runs into the Vagus (cranial nerve 10) nerve and if this are gets affected (which in me it does), respiration and heart rate and blood pressure all become affected. They then call this vagoglossopharyngeal neuralgia.
Cranial Nerve #9: Glossopharyngeal Nerve
Description and Physiology
The glossopharyngeal nerve originates from the brainstem and has both sensory and motor functions. The term glosso means “pertaining to the tongue and pharyngeal means “pertaining to the pharynx”. Therefore, it makes sense simply from the name that the glossopharyngeal nerve controls tongue and pharynx. The glossopharyngeal nerve only motor function is supplying efferent motor fibers to the stylopharyngeal muscle, which elevates the pharynx. This nerve also receives afferent sensory signals from the pharynx, tonsils, middle ear, and posterior of the tongue. Sensory fibers are also received from the carotid bodies, which detect increase in blood pressure in the sinus of the carotid. Afferent signals can then be sent to the medulla where the stimulation of the medulla leads to a decrease in arterial blood pressure and heart rate. This reflex is known as the carotid sinus reflex.
Glossopharyngeal Neuralgia
Nerve Damage :
Glossopharyngeal neuralgia is a condition in which there are repeated episodes of severe pain in the tongue, throat, ear, and tonsils, which can last from a few seconds to a few minutes.
Symptoms:
Severe pain in areas connected to the Glossopharyngeal Nerve.
Back of the nose and throat (nasopharynx)
Back of the tongue
Ear
Throat
Tonsil area
Voice box (larynx)
Symptoms are triggered by swallowing,laughing, coughing or talking.
Treatment
Simple over the counter pain killer wont do much help. The most effective drugs are antiseizure medications, such as carbameoine, gabapentin,and phenytoin. Some antidepressents such as nortriptyline may help some people.
Trigeminal nmeuralgia has a different distribution. I also get this with my MS but it isn't as bad as my GPN and not as often. But it is VERY COMMON with MS. GPN can also be associated with MS and sometimes the first symptom.
The vagus nerve is a mixed nerve with both sensory and motor functions. It is the longest of the cranial nerves as it extends from the brain stem, through the muscles of the mouth, neck, thorax, lungs, and abdomen. The vagus nerve conveys sensory information about the state of the body’s organs to the nervous system. It also receives a special sense of taste sent from the epiglottis. The posterior muscle of the tongue, the palatoglossus, is controlled by the vagus nerve. The vagus nerve helps to regulate the heartbeat, control muscle movement, keep a person breathing, and to transmit a variety of chemicals through the body. The vagus nerve controls muscles resulting in voice resonance and also the soft palate. It is responsible for homeostasis of the digestive tract, and contracting the muscles of the stomach. The vagus nerve controls the small and large intestines to help process food. The vagus nerve also sends sensory signals to the brain about what is being digested and what the body is getting out of it.
Gastroparesis
Gastroparesis is a condition where the stomach takes too long to empty chyme into the duodenum of the small intestine. This condition is also called delayed gastric emptying. Damage to the vagus nerve causes disfunction in the contracting of the smooth muscles of the stomach. This causes the food to move slowly through the alimentary canal or stop completely. There are many varying symptoms of gastroparesis including pain in the upper abdomen, nausea, weight loss, abdominal bloating, heartburn, lack of appetite, stomach spasms, and gastroesophageal reflux. The symptoms may range from mild to severe and may be aggravated by consuming high fiber foods like raw fruits and vegetables.
Gastroparesis is most often caused by diabetes. The high levels of blood glucose damage the blood vessels carrying oxygen and nutrients to the vagus nerve and chemically alter the signals sent through the nerve. The high levels of blood glucose eventually lead to damage to the vagus nerve. If chyme lingers too long in the stomach bacterial overgrowth due to food fermentation may occur. Gastroparesis is a chronic condition and is not cure by treatment. Gastroparesis can be improved by dietary changes like avoiding the consumption of high fiber or high fat foods and eating six small meals a day rather than three large ones.
Damage to the Vagus nerve
Damage to the vagus nerve can result in trouble with moving the tongue while speaking, or hoarseness of the voice if the branch leading to the larynx is damaged.
Hearing loss may result from damage to the branch of the vagus nerve that innervates the concha of the ear.
Damage to the vagus nerve can cause cardiovascular side effects, including irregular heartbeat and arrhythmia.
Cranial Nerve #5: Trigeminal Nerve
Description and Physiology
The fifth cranial nerve is called the trigeminal and originates from the pons. The trigeminal nerve deals with motor and sensory signals. The main function of the trigeminal nerve is to receive sensation from the face and control the four muscles of mastication. The four muscles of mastication are the masseter, temporalis,medial pterygoid, and the lateral pterygoid. These four muscles create the adduction and lateral motion of the jaw.
There are four main nuclei associated with the trigeminal nerve are the three sensory nuclei the principal sensory trigeminal nucleus, the spinal trigeminal nucleus, the mesencephalic trigeminal nucleus, and the motor trigeminal motor nucleus.
The sensory trigeminal nucleus is responsible for the sensation of light touch for the three sensory trigeminal nuclei. The primary sensory nucleus sits laterally to the motor nucleus on both sides of the brain.
There are three major divisions of the trigeminal nerve that run along the face. The first division is the opthalmic division, also known as V1, which provides sensory information from the forehead, upper eyelid, and eye. The second division,V2, the maxillary branch provides sensory information for the lower eyelid, nostril, cheek, upper lip, and gums. The Mandibular branch is the third division also known as V3 that provides sensation of the lower lip, gums, and jaw.
Trigeminal Neuralgia
One disease affecting the trigeminal nerve is trigeminal neuralgia. A person experiencing trigeminal neuralgia may suffer an episode of facial pain that can last as long as two minutes. The cause of this disease is not currently known, but it may have to do with blood vessels putting pressure on the trigeminal nerve as it leaves the brain stem. The vessels pressure on the nerve may cause the myelin sheath to deteriorate, which would affect the nerve’s ability to generate action potentials and may lead to the facial pain.
A person suffering from Type 1 trigeminal neuralgia often experiences sharp facial pain half of their day. Those affected by type 2 also experience pain half the time, but their pain is described more as a burning. This disease can have many triggers including something as benign as applying makeup or brushing your teeth. Surgery, anticonvulsants, and migraine medication are possible treatments for trigeminal neuralgia.
My advice to you Jane would be to try and source out why your pain is orginating since you have TN and now showing signs of GPN. First thing would be a brain MRI to rule out MS. Second would be have a CT scan done to check your styloid processors for Eagles syndrome. They should be the first things done here if you haven't had them done already as there always is a cause for this, it is a matter of finding what it is whether it is a physical obstruction, or caused from brain lesions, or nerve damage through disease or accident, or compression of a blood vessel. The blood vessel compression is not always seen on imaging. More so found on surgery after everything else has been ruled out.
It was beautiful, warm sunshine today! Won't be long, we'll have spring flowers.
Suggest you keep a pain log. For me, when the neuralgia pain started, the pain was in my teeth. 1st on the left, then adding the right. It would come and go, and was intense. Conventional pain relievers didn't help.
In the beginning, I thought the doctors would not believe me, as it just seemed and sounded so bizzare.so I started keeping a log tracking date, time, location of the pain, description of the pain, intensity of the pain, and duration. I also noted Prescribed and non-prescribed medications and when I took them. 5.5 years later, I still do my log, and take it every time I go to see any new specialist, and every time I go see the anesthesiologist, which will be every 3 weeks moving forward, for now.
Try to find out the type of specialist, and if possible, the name of the specialist ahead of time. It will give you some indication of what to expect, as to where this might be going. Also, make a list of questions. Don't worry too much. All of this helps
I also research every medication that's prescribed to me.
The beginning was a challenge, and I was very lost. These support sites in particular, reading others stories, and some interacting helped me greatly. Researching what the reports, and the doctors are indicating has also helped.
Accepting it is was also important for me. I've also learned they can't get rid of all the pain with the meds, and not to expect that to happen, and accept that also. I'm very fortunate to live in Vancouver, and to have perhaps some of the worlds best specialists watching after me. I can't even begin to imagine what the costs have been for imaging and specialists. I'm so grateful.
I hope some of this is helpful to you.
Hang in there!
Ed
I hope all of this helps you.
justjane37 said:
Hi Eddie,
Wow you are really dealing with a lot! Thank you for replying. With this new tongue symptom I am quickly seeing how much more wide spread this problem can become.
I have been dealing with Type 2 TN on my left side for about a year affecting my teeth, jaw, cheek and ear. Not fun at all! I am on Amitriptyline and have been pain free until all this stuff started happening on the right side. It is frightening to have no idea what is happening.
I see that you are in Canada too. In beautiful British Columbia! I spent some time out there touring around Vancouver Island camping. The west coast is absolutely gorgeous. I am just outside of Toronto.
Anyways, I am waiting to see a specialist and just trying to gather info for myself and hopefully some comfort.
I was in a lot of pain last year before starting the Amitriptyline. My journey started in the dental chair with an unnecessary root canal. I was praying that it was dental because I knew if it wasn't that I was dealing with TN. And, yeah, I tried many pain relievers and anti-inflammatories and nothing worked. It was agony.
So, with these new symptoms on the right I know that I need to take charge and seek help. Through the livingwithtn website I was able to locate a specialist in Toronto that some members recommended. He seems to be a leader on TN in my area so that is great. The referral was sent today so I am anxious to see how long I will have to wait.
Right now I am not even worried about how to treat my new symptoms on the right. I just want to know what is happening.
Eddie said:
Hi Jane
It was beautiful, warm sunshine today! Won't be long, we'll have spring flowers.
Suggest you keep a pain log. For me, when the neuralgia pain started, the pain was in my teeth. 1st on the left, then adding the right. It would come and go, and was intense. Conventional pain relievers didn't help.
In the beginning, I thought the doctors would not believe me, as it just seemed and sounded so bizzare.so I started keeping a log tracking date, time, location of the pain, description of the pain, intensity of the pain, and duration. I also noted Prescribed and non-prescribed medications and when I took them. 5.5 years later, I still do my log, and take it every time I go to see any new specialist, and every time I go see the anesthesiologist, which will be every 3 weeks moving forward, for now.
Try to find out the type of specialist, and if possible, the name of the specialist ahead of time. It will give you some indication of what to expect, as to where this might be going. Also, make a list of questions. Don't worry too much. All of this helps
I also research every medication that's prescribed to me.
The beginning was a challenge, and I was very lost. These support sites in particular, reading others stories, and some interacting helped me greatly. Researching what the reports, and the doctors are indicating has also helped.
Accepting it is was also important for me. I've also learned they can't get rid of all the pain with the meds, and not to expect that to happen, and accept that also. I'm very fortunate to live in Vancouver, and to have perhaps some of the worlds best specialists watching after me. I can't even begin to imagine what the costs have been for imaging and specialists. I'm so grateful.
I hope some of this is helpful to you.
Hang in there!
Ed
I hope all of this helps you.
justjane37 said:
Hi Eddie,
Wow you are really dealing with a lot! Thank you for replying. With this new tongue symptom I am quickly seeing how much more wide spread this problem can become.
I have been dealing with Type 2 TN on my left side for about a year affecting my teeth, jaw, cheek and ear. Not fun at all! I am on Amitriptyline and have been pain free until all this stuff started happening on the right side. It is frightening to have no idea what is happening.
I see that you are in Canada too. In beautiful British Columbia! I spent some time out there touring around Vancouver Island camping. The west coast is absolutely gorgeous. I am just outside of Toronto.
Anyways, I am waiting to see a specialist and just trying to gather info for myself and hopefully some comfort.
My GPN was diagnosed prior to my VN & TN. My right side is affected so all the following pertain to that side only. I had difficulty swallowing with a feeling like I had a ball stuck in my throat. That changed to a steady feeling of strangulation. Gradually my tongue started doing weird things. I felt like someone was trying to pull my tongue down the back of my throat. It twists around into strange positions in my mouth. My speech is affected so that I sound deaf or more recently British. Increased salivation. Burning sensation on the soft palate which travels up into my lower sinuses. Followed by stabbing pain in the soft palate like an ice pick is being used.
I have additional symptoms which are specific to the X and V nerves, but you asked specifically about the tongue.
Hmschmom
