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Trigeminal Neuralgia
Hiya all! It's been awhile. How are y'all? I hope the holidays are treating you well.
I have been taking some time to go through my latest rounds of tests and seeing new specialists my MSologist referred me for. I had an SSEP that was normal. I am thankful for that.
The Neuro-Ophthalmalogist ran many tests and indicated that some of my vision issues are refractive but there is also indication of other things going on there. My OCT test results were 82 and 86 which indicated thinning. She found two areas of concern with lesions. She basically said it looks like MS.
I also saw the Neuro-Otologist who basically said that my hearing symptoms could be just about anything -- lol ---barametric pressure, hormones, migraines, weather, allergeis, myoclonus and, yes, MS. I hear perfectly fine so I can treat my symptoms based on the annoyance factor. I have had one symptoms that he stated was a red flag - inside the ear canal it feels very cold and aches. He indicated that might be a cranial nerve V "irritation."
I had a follow up with my MSologist last Monday. She indicated the above. I mentioned the facial pain/numbness, eye pain, aching symptoms I had for nearly 10 months as I had a relapse the weekend prior as well as an increase in symptoms. I asked about migraines since that was toss around by the specialists. After a pretty thorough conversation about the symptoms and this pain, she told me it doesn't sound like migraines at all and it soun like a brain nerve thing. Since I have an increase in symtpoms she wanted to do a full MRI of my brain and spine right away.
I looked up the cranial nerve v and that's TN. I have had cold, aching ear canals (current); very brief sharp stabbing pains in my face but feels more like a super sharp needle that itches too; eye pain with movement, painful aching surrounding and behind that eye (that lasted 10 months) w/ gradual improvement; reflared for a few days this last week. I have had many of the ON symptoms but I haven't had ON --- just optic nerve atrophy. I never considered the pain I was having as being TN because it was more constant but it sounds like they are thinking it might be an abnormal presentation.
Anyone else experience this? Thoughts?
Thank you in advance. Happy Holidays too! :)
I have been taking some time to go through my latest rounds of tests and seeing new specialists my MSologist referred me for. I had an SSEP that was normal. I am thankful for that.
The Neuro-Ophthalmalogist ran many tests and indicated that some of my vision issues are refractive but there is also indication of other things going on there. My OCT test results were 82 and 86 which indicated thinning. She found two areas of concern with lesions. She basically said it looks like MS.
I also saw the Neuro-Otologist who basically said that my hearing symptoms could be just about anything -- lol ---barametric pressure, hormones, migraines, weather, allergeis, myoclonus and, yes, MS. I hear perfectly fine so I can treat my symptoms based on the annoyance factor. I have had one symptoms that he stated was a red flag - inside the ear canal it feels very cold and aches. He indicated that might be a cranial nerve V "irritation."
I had a follow up with my MSologist last Monday. She indicated the above. I mentioned the facial pain/numbness, eye pain, aching symptoms I had for nearly 10 months as I had a relapse the weekend prior as well as an increase in symptoms. I asked about migraines since that was toss around by the specialists. After a pretty thorough conversation about the symptoms and this pain, she told me it doesn't sound like migraines at all and it soun like a brain nerve thing. Since I have an increase in symtpoms she wanted to do a full MRI of my brain and spine right away.
I looked up the cranial nerve v and that's TN. I have had cold, aching ear canals (current); very brief sharp stabbing pains in my face but feels more like a super sharp needle that itches too; eye pain with movement, painful aching surrounding and behind that eye (that lasted 10 months) w/ gradual improvement; reflared for a few days this last week. I have had many of the ON symptoms but I haven't had ON --- just optic nerve atrophy. I never considered the pain I was having as being TN because it was more constant but it sounds like they are thinking it might be an abnormal presentation.
Anyone else experience this? Thoughts?
Thank you in advance. Happy Holidays too! :)
WELL - here you go!!
Symptoms ATN pain can be described as heavy, aching, stabbing and burning. Some sufferers have a constant migraine-like headache. Others may experience intense pain in one or in all three trigeminal nerve branches, including teeth, ears, sinuses, cheeks, forehead, upper and lower jaws, "behind" the eyes, and scalp. In addition, those with ATN may also experience the shocks or stabs found in type 1 TN.
Many TN and ATN patients have pain that is "triggered" by light touch on shifting trigger zones. ATN pain tends to worsen with talking, smiling, chewing, or in response to sensations such as a cool breeze. The pain from ATN is often continuous, and periods of remission are rare. Both TN and ATN can be bilateral, though the character of pain is usually different on the two sides at any one time.[2]
[edit] Causes
The trigeminal nerve.ATN is usually attributed to inflammation or demyelination, with increased sensitivity of the trigeminal nerve. It is possible that there are triggers or aggravating factors that patients need to learn to recognize to help manage their health. Bright lights, sounds, stress, and poor diet are examples of additional stimuli that can contribute to the condition. The pain can cause nausea, so beyond the obvious need to treat the pain, it is important to be sure to try to get adequate rest and nutrition.
These effects are believed to be caused by dental procedures, infection, demyelinating diseases, or compression of the trigeminal nerve (by an impinging vein or artery, a tumor, or arterio-veinous malformation). An interesting aspect is that this form affects both men and women equally and can occur at any age, unlike typical trigeminal neuralgia, which is seen most commonly in women. Though TN and ATN most often present in the fifth decade, cases have been documented as early as infancy.
http://en.wikipedia.org/wiki/Atypical_trigeminal_neuralgia
Symptoms ATN pain can be described as heavy, aching, stabbing and burning. Some sufferers have a constant migraine-like headache. Others may experience intense pain in one or in all three trigeminal nerve branches, including teeth, ears, sinuses, cheeks, forehead, upper and lower jaws, "behind" the eyes, and scalp. In addition, those with ATN may also experience the shocks or stabs found in type 1 TN.
Many TN and ATN patients have pain that is "triggered" by light touch on shifting trigger zones. ATN pain tends to worsen with talking, smiling, chewing, or in response to sensations such as a cool breeze. The pain from ATN is often continuous, and periods of remission are rare. Both TN and ATN can be bilateral, though the character of pain is usually different on the two sides at any one time.[2]
[edit] Causes
The trigeminal nerve.ATN is usually attributed to inflammation or demyelination, with increased sensitivity of the trigeminal nerve. It is possible that there are triggers or aggravating factors that patients need to learn to recognize to help manage their health. Bright lights, sounds, stress, and poor diet are examples of additional stimuli that can contribute to the condition. The pain can cause nausea, so beyond the obvious need to treat the pain, it is important to be sure to try to get adequate rest and nutrition.
These effects are believed to be caused by dental procedures, infection, demyelinating diseases, or compression of the trigeminal nerve (by an impinging vein or artery, a tumor, or arterio-veinous malformation). An interesting aspect is that this form affects both men and women equally and can occur at any age, unlike typical trigeminal neuralgia, which is seen most commonly in women. Though TN and ATN most often present in the fifth decade, cases have been documented as early as infancy.
http://en.wikipedia.org/wiki/Atypical_trigeminal_neuralgia
It does help! It sounds very similar. My pain was chronic. I had good days then bad days.
I am lucky that it seems to have peaked during my initial flare then very gradually improved until I no longer had symptoms. The Neuro's are the ones that led me this direction but they didn't mention TN specifically, just cranial nerve v and then my MSologist said "head nerve thing." She's trying not to get technical.
I'll keep you informed. She ordered a full MRI and wants to see me immediately after. I will ask her about it again.
I am lucky that it seems to have peaked during my initial flare then very gradually improved until I no longer had symptoms. The Neuro's are the ones that led me this direction but they didn't mention TN specifically, just cranial nerve v and then my MSologist said "head nerve thing." She's trying not to get technical.
I'll keep you informed. She ordered a full MRI and wants to see me immediately after. I will ask her about it again.
I hope you are feeling better. .
I have suffered from forehead and behind the eye headaches for years now. Was told they may be some form of atypical migraine but I AM NOT light or sound sensitive!!!! They dont go away in hours. They stay and just increase or decrease in pain level. Normal migraine meds DO NOT WORK.
I also suffer from other Neurological sx (tingling, numbness, pins and needles around eye, ear, lips, cheeks) that increase with the pain.
I have narcotics for them and have tried several kinds. They take some of the edge off but not all the way.
I do have days without head pain and enjoy every moment but 90% of the time I have some pain whether it is a dull roar or a 10+ on the pain scale.
It was recently mentioned to me that this sounds like Atypical TN. I am going to talk to my Dr about that possibility when I see her after the first of the year.
When they get bad they usually wipe me out and it takes days to recover from the fatigue and so forth.
Not sure if his helps but thought I would throw it out there. Hoope you get answers soon.
I have suffered from forehead and behind the eye headaches for years now. Was told they may be some form of atypical migraine but I AM NOT light or sound sensitive!!!! They dont go away in hours. They stay and just increase or decrease in pain level. Normal migraine meds DO NOT WORK.
I also suffer from other Neurological sx (tingling, numbness, pins and needles around eye, ear, lips, cheeks) that increase with the pain.
I have narcotics for them and have tried several kinds. They take some of the edge off but not all the way.
I do have days without head pain and enjoy every moment but 90% of the time I have some pain whether it is a dull roar or a 10+ on the pain scale.
It was recently mentioned to me that this sounds like Atypical TN. I am going to talk to my Dr about that possibility when I see her after the first of the year.
When they get bad they usually wipe me out and it takes days to recover from the fatigue and so forth.
Not sure if his helps but thought I would throw it out there. Hoope you get answers soon.
Hi,
I did get that. especially when the wind blew or it was cold but I had a numbing background burning pain. I had my dentist check out other possibility at a routine/annual appt to be sure it was nothing else but I had stabbing pains that came and went as well...sems to be under control with meds and less apainful/annoying now :o)
Jibs
I did get that. especially when the wind blew or it was cold but I had a numbing background burning pain. I had my dentist check out other possibility at a routine/annual appt to be sure it was nothing else but I had stabbing pains that came and went as well...sems to be under control with meds and less apainful/annoying now :o)
Jibs
Jibby,
The "stabbing pains" I had felt more like fine needle pricks. They hurt, yeah, but imagined the pain different. I dunno, not what I expected yet I was very uncomfortable with the pain. It throws me completely off. Ibuprophen helps but it doesn't rid the pain or discomfort. She went through the migraine criteria. I don't meet any of it so that's out.
Does this sound like your symptoms? or are you getting the "typical" presentation of stabbing pains?
The "stabbing pains" I had felt more like fine needle pricks. They hurt, yeah, but imagined the pain different. I dunno, not what I expected yet I was very uncomfortable with the pain. It throws me completely off. Ibuprophen helps but it doesn't rid the pain or discomfort. She went through the migraine criteria. I don't meet any of it so that's out.
Does this sound like your symptoms? or are you getting the "typical" presentation of stabbing pains?
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