Stress and pain have a huge correlation for me, if not a causation. I think it may be related to stress causing my to tense up my jaw muscles, possibly causing me to irritate the trigerminal nerve in the process. That's just my theory at the moment though.
Yes, stress and clenching your jaw, grinding your teeth at night do aggravate facial pain. I have tmj, mild now after surgery in '86, but do get flare ups of both together. I am trying some acupressure for TN, one of trigger points is right at the lower jaw, when I use it my whole lower jaw and face vibrate, so yes I know it does. I would check for temple pain if you get jaw pain, they get all mixed up, but tmj and TN are so close together, an ENT told me cranial nerve 5, the TN nerve is only 1 mm away from the tmj joint. Sharon
I see so many people here talking about Type 1 and Type 2 TN. How do I know which type I was diagnosed with. Neurologist couldn't give me the answer.
I have type 2, constant 24/7 building in intensity, type 1 is the stabbing, electric-shock like pain that hits the whole side of the face, comes in attacks and then goes away. Attacks of type 1 vary in how long they last but as a type 2 I am inclined to be more sympathetic to all you type 1's even though I envy your spontaneous remissions I can't imagine having that horrible pain. Sharon
Thanks - so I'm assuming that I have Type 1 because I have periods of remission - but so far have not had unbearable pain, just very uncomfortable pain -hopefully it will stay that way, but I strongly doubt it
Any neuralgia can have remission, although time between episodes generally become less over the years. Trigeminal Neuralgia (TN or TN1) is typically an electrical zap or stabbing feeling that can last from a second or two to a few minutes.
Atypical Trigeminal Neuralgia (ATN or TN2) is typically a deep dull stabbing, crushing, twisting, etc. yet excruciating pain often felt near the temple, eye, and/or cheek area.
There are distinct differences between the average TN/TN1 & ATN/TN2 attacks.
Jackie et al.
The problem is sometimes no physical cause can be found. No blood vessel on nerve, no bad dentistry. No one decreed that stress could not break a nervous system. Even if my rheumi did use the term "psychosomatic," which he did not, that does not mean "delusional." It does not mean "all in the mind." It could be the physical effect (somatic) CAUSED by the psychological state (psycho). Maybe a better term would be "psychogenetic." When you filter out the cases that don't come from observable physical causes, on an MRI eg, isn't it fair to say that TN is something of a "wastebasket" term, too?
Think of the tremendous variety of pain reported on this site. Think of the tremendous variety of drug treatments used. Think of all the treatments and drugs that stop working after a while. This site is full of guesswork. Sounds like they don't really know what causes TN either in a great many cases.
Type 2 is more chronic pain that is almost constant (24/7). Type 1 is random sharp stabs of pains related to stimuli that come and go in minutes.
joan said:
I see so many people here talking about Type 1 and Type 2 TN. How do I know which type I was diagnosed with. Neurologist couldn't give me the answer.
There's quite a difference in the classic definitions and Feiku got it right. Neurologist should be able to distinguish, but there are in-between descriptions I see on here. How did you describe it?
I said its worse when I try to eat or talk, especially in the morning. Diagnosed about 4 years ago after a root canal. Pain is in ear, lower right bottom teeth, cheek and eye. Chronic headache during these times. This lasts approx. 3-4 mos and then I go into remission for about 8 mos & back again to pain. I don't notice any of the classic triggers like wind, bending, touching face, etc. MRI did not show anything, but neurologist said he doesn't see that many patients with it - has about 1 dozen patients with TN, so that has me a little concerned. Been on tegretol which I could not tolerate and just deal with the pain and wait for remission rather than trying to handle these meds for as long as I can deal with it. What a nightmare we go thru with this
Howard, TN is a tricky beast with many ugly heads. I don’t disagree with what you say. but Red and myself have seen cases where some members have been denied helpful treatment because their Drs have dismissed their pain and caused more misery. We all need a unique personalized treatment. This group exists because not all members are lucky enough to receive this. It breaks my heart to read some members histories.
Yes, Jackie I remember talking to you from MN a couple of years ago. I was terrified and I couldn't find any materials like T.N. for dummies or any bookstore info. No one to tell me what it really meant and how my life would turn out to be like. One of the reasons I responded to this letter regarding stress was because my N. way back then said I was having stress related pain and then prescribed T.N. medication. He folded his arms across his chest and nodded is head or looked around the room as if he had other better things to do. The suffering is beyond what I was able to describe or comprehend and still is as I have major episodes. So I read Red's information and that it what motivated me to speak up. I also realized that I could only afford to see certain N's and often they followed the protocols. I kept thinking I was going to wake up better one day and be well because of what the first N. told me. He told I'd be better and this would go a way in time. So I kept saying that to my . N/ in Mariposa county. I really liked her but she would tell me the truth and would say this is not going to just go a way. I'm just saying that we are all different. Some people suffer more then I do. I've spent most of my life in bed. Neurotin caused black and blue bruises on my breasts along with lumps and pain. I have a bladder condition as a result of meds. Also incurable. So therefore I am obviously going to be under stress. I can't work and have to live with my Sister while I wait for another SSdisability appeal. I leave under poverty level and not by choice. More stress. I go for days without communicating with anyone Just don't have much to say nor the will to force it. I have great mercy and frustration about this issue. So many nerve pain issues and so much lack of sympathy from medical professionals and the general public alike who all know someone who has fibromyalgia or other pain conditions and they all manage to work every day. Speaking for myself if I focus on all of the many issues as well as how I feel I get overwhelmed with stress, then overwhelming pain follows. I so hope you are doing well and are embracing your good days. Loving and encouraging is what my intentions are. Those are still aspects of myself that I can control.
I've also noticed that stress and anxiety cause my pain to be worse.
Debbie, it would seem you are one of the members who break my heart. You are not alone in seeing "bored" neuros. They should question themselves about being in the correct profession. I cant see all the universe, but I know it is out there. They should remember that those with invisible, rare illnesses often need the most help. I wish you wellness.
Debbie Day said:
Yes, Jackie I remember talking to you from MN a couple of years ago. I was terrified and I couldn't find any materials like T.N. for dummies or any bookstore info. No one to tell me what it really meant and how my life would turn out to be like. One of the reasons I responded to this letter regarding stress was because my N. way back then said I was having stress related pain and then prescribed T.N. medication. He folded his arms across his chest and nodded is head or looked around the room as if he had other better things to do. The suffering is beyond what I was able to describe or comprehend and still is as I have major episodes. So I read Red's information and that it what motivated me to speak up. I also realized that I could only afford to see certain N's and often they followed the protocols. I kept thinking I was going to wake up better one day and be well because of what the first N. told me. He told I'd be better and this would go a way in time. So I kept saying that to my . N/ in Mariposa county. I really liked her but she would tell me the truth and would say this is not going to just go a way. I'm just saying that we are all different. Some people suffer more then I do. I've spent most of my life in bed. Neurotin caused black and blue bruises on my breasts along with lumps and pain. I have a bladder condition as a result of meds. Also incurable. So therefore I am obviously going to be under stress. I can't work and have to live with my Sister while I wait for another SSdisability appeal. I leave under poverty level and not by choice. More stress. I go for days without communicating with anyone Just don't have much to say nor the will to force it. I have great mercy and frustration about this issue. So many nerve pain issues and so much lack of sympathy from medical professionals and the general public alike who all know someone who has fibromyalgia or other pain conditions and they all manage to work every day. Speaking for myself if I focus on all of the many issues as well as how I feel I get overwhelmed with stress, then overwhelming pain follows. I so hope you are doing well and are embracing your good days. Loving and encouraging is what my intentions are. Those are still aspects of myself that I can control.
Debbie, I just read your story and experience. I am 58 years old and have been on disability for a long time. I have failed back surgery, neck, thoracic and on and on, 13 plus surgeries but I was able to get disability from tmj in my thirties. I used an attorney who gets paid a percentage of whatever you get paid. I don't know if there is a rule about SSD regarding needing to have worked within the past 2 years of filing for SSD. I peeked at the file before I went in front of a judge on an appeal, and yes you do usually have to do 1 or 2 written requests denied before an attorney takes your case, but anyway, it said 90% on it and I did ask my attorney what that meant. He said 90% chance I would get it. When I got all the letters from SSD when my payments came I saw I got disability on "depression". I was presenting at that time with tmj pain and fibromyalgia and seeing a rheumatologist for possible lupus but none of these were in writing. I had gotten very ill from silicone jaw implants from the surgery I had for tmj just like all the other women who had silicone breast implants. Dow Corning did a settlement for this while in bankruptcy but have since gone back into business and are once again implanting silicone breast implants because the science disproved they caused auto-immune disease and most women choose silicone over saline because they feel and look like a natural breast. I can say without a doubt I was very ill for almost 5 years but did recover but using prednisone during that time caused early onset of osteoporosis and my spine fell apart one herniation after another, all levels. I need another lumbar surgery to decompress scar tissue and boney growth that are impinging on the nerves, I am fused at every level of my lumbar spine. I have not needed surgery since '09 and now I feel it is definitely harder on me to not be able to stand, walk, and even sit with sciatica again than the facial pain. I can get comfortable on cold packs resting and have a full blown attack of my facial pain and then I think, no the facial pain is a much bigger monster to deal with.
I am an ATN sufferer and atypical GN, possibly from having tmj surgery, I had facial pain and then it went away for 20 years. And yes, I have had only one doctor, my neuro's PA look at me with that look and asked me if I needed to talk to someone about my pain as there was inconclusive evidence of it on MRI. I am waiting for another remission but I am older now and the onset of this type of pain does happen to older patients, but really old patients. I am taking a combination of a low dosage of meds I can tolerate, gabapentin, baclofen and just recently added amytriptiline. I can not tolerate tegretol and lyrica which many do respond to.
You are saying it just like it is. I feel like you do many hours of the day. I am widowed and live alone with a doggy. I am a grandmother now and when I could stand, walk and sit I was seeing them frequently and even cared for my first grandson while my daughter worked from home. I did find getting out when I could and changing my environment changed my perception of this invisible face pain. It is obvious I have a big disability walking with a cane, and sometimes a walker and I do have a spinal deformity from failed surgery. Everyone can see this, but no one can see this face pain. My daughter believes me because she has mild tmj and has had some face pain. Now that I have become more confined I am starting to get some depression and just like you it is justified. Everyone that visits this site usually tries to give the upbeat side of dealing with this invisible pain, I try to do the same but on the other side of coping is not being able to cope. If you find yourself completely lost and not coping with this pain do seek some support somewhere, maybe it is your sister or like me I write and respond to as many discussions as I can on this site. I know I rattle on and on, but I don't think I am getting ignored. I read so many stories of those that are in more pain than I am in with this face pain and have done everything, MVD's and other invasive treatment, tried all the drugs and sometimes are worse, and sometimes have amazing results from MVD.
I have been on a page discussing PNS, peripheral nerve stimulation, neurosurgeons and pain management doctors are doing this for TN. This is the only treatment I want to try. If you would like more info on this I can reply to you. Don't give up, I see you have been a member for a long time, I am almost 2 years and I am getting the feeling there is simply is no cure for this for some of us. Take care, Sharon
thehoward, your response to this pain even if you do get a dx for TN, you are so right, the neuro's really don't know what causes it, they just follow the protocol for meds for nerve pain. I even have a pain management doctor that prescribed some narcotic but I have other chronic pain problems with failed back surgery that it is also being prescribed for. I have a suspect blood vessel but it was ruled out although I have googled this and found it could be causing my left sided pain, however I am ATN type 2 and I have pain on both sides 24/7. I did have remission from this for over 20 years and think I have a better chance of going into remission again than a cure being found. In fact, my neuro's PA even stated it but also gave me that look of do you need to talk to someone as it is all in my head. Even if a neurosurgeon offered MVD for me I would not do it as I have been told by one of the neurosurgeons from this site at a teaching hospital being referred to by my neuro that thought I might benefit from RF said, "I don't want to make you worse." He only does MVD for true type 1 TN.
I have been on another page discussing PNS, peripheral nerve stimulation, an invasive but irreversible implanting of leads under the skin, not at the nerve roots, so no damage to nerves, but just stimulation over the areas of the face where you are having pain. I have had a spinal cord stimulator for cervical pain, so I can somewhat imagine how it works, only my arm and hand pain was stimulated. I get really jealous of those that write in and get complete remission from MVD, some are type 2 and those that respond to meds like tegretol which I can not tolerate. I also have a history of tmj with surgery so I have been told the TN nerve is 1 mm away from the tmj joint by an ENT that was very sympathetic to my pain but did say this surgery is brain surgery with a lot of apprehension.
I have been coming to this site for 2 years now, no cure yet for me, but lots of genuine support and so many other treatment options out there. But I searched for a year, drove out of town 2 times, and have settled down to just knowing I do have better days and better hours of the day and I am going with that. I do get meds, they are helpful some of the time. I do not get the stabbing electric-shock like pain so many sufferers have, some get remission between attacks but I don't think I would trade my 24/7 building in intensity pain for that pain that does come in attacks and then goes away. Sharon
What a great way to put it into words "I can't see all the universe, but I know it is out there."
Too often doctors do not listen to their patients. I have actually had a dr. tell me I was the healthiest looking sick person he has seen.
Jackie said:
Debbie, it would seem you are one of the members who break my heart. You are not alone in seeing "bored" neuros. They should question themselves about being in the correct profession. I cant see all the universe, but I know it is out there. They should remember that those with invisible, rare illnesses often need the most help. I wish you wellness.
Jenna, I was not referring to sufferers of a disorder as self delusional. I think if you re-read it I said society tends to do that. Or better still, some people in society. I think I'm referring to those people who tend to come in as an "expert" on tv talk shows, albeit with good intentions, and a desire to help the suffers of various and different issues. I did not say the sufferer was self-delusional. I meant those who label a drug addict (for example a meth user, crack, heroin, etc etc) as having a disease. A disease? I don't think so. My thinking is a disease is something you catch from germs, bacteria, or viruses, etc. A disorder is something that is out of the normal range of development. Those things I said were not, IMO, disorders or diseases. Especially not a disease. I'm sorry you understood that I meant other than just what I said. I can see this topic could easily drift off in a direction not appropriate for this website. We're all TN sufferers. We have enough to contend with. Have a blessed and pain free day to all.
JennaC said:
To Jimmy Works
Your comments about the possible virus connection and confirming the stress connection are interesting. Thanks for sharing that. The last sentence in your post added to my stress though:
..." Its a weird and dreaded disorder or disease... Is it a disorder or disease. Of course, nowadays our society calls everything a disease (out of self-delusional reasons, in my opinion) - such as alcoholism, drug addiction, ADHD, self-defeating lifestyles, and on and on."
Those of us with TN have had enough medical professionals tell us there's nothing wrong - go see a psychiatrist... Please don't do the same thing to others suffering with other issues by labeling them "self-delusional. Living with ADD my entire life has been just as hard as living with recently diagnosed TN is now. TN isn't the only "suicide" disease. A recent study showed suicide rates were nearly five times higher in adults who had childhood ADHD http://thechart.blogs.cnn.com/2013/03/04/adhd-reaches-beyond-childh... This is a great community and we're all here to encourage each other. Let's stick to doing that.
Thanks to everyone for the information and encouragement. Wishing us all painfree days.
Though every remission ends for me with new triggers, varied nature, varied duration, varied pain location, and varied intensity, despite which operation I've had last, despite what medicine concoction I'm trying, and despite whatever I'm eating, here are the few things I am convinced DO affect my brand of TN:
---SLEEP
---COLD
---HYDRATION
---STRESS
(my definition: multifaceted mysterious physiological response to certain demands for performance, preparation, or tolerance, which cause tightness, fidgeting and shoulders draw high)
I just want to add that some of my worst pain flare ups happened either during or right after doctors appointments, so stress is definitely a huge factor for me. The irony is that when I was searching for a diagnosis, I had some of the most negative experiences with the medical profession that made the pain worse. I always believed doctors could make you better, haha. And sometimes they can and do, but with this strange and rare problem things weren't so simple. Debbie I totally relate to what you wrote about a neurologist that folded his arms and looked around the room as if he had better things to do. I had a primary care doctor for a few months (that I left!) who after the third time I went to her with this invisible pain, she gave me a "lecture" about how lucky I was to be healthy and how she had recently diagnosed a 30 year old patient with Lou Gehrig's disease, the woman would be dead probably within a year and that I was letting stress into my life and the pain was all in my head. I'm an 11 year cancer survivor too so to be told that was like a slap across the face. (If she'd bothered to read back in my chart she would've seen that). I also heard her medical assistant say to the receptionist that day "I don't know why SHE is here again, ridiculous if you ask me!" looking across at me when I was in the waiting room. Friends told me I should file a complaint against them, but I was too sick from the pain to bother. Needless to say, that was the last time I saw that doctor and thank God found a different one after that who has been respectful and kind to me. I had other specialists fold their arms, like you described and glance at the clock, or smirk at me. So humiliating and then I'd crawl out the door with the pain level rapidly escalating every time. They may have all the right qualifications, but some doctors are not healers. Anyway, desperation kept me going, and when I finally found a good neuro who figured it out, my anger and frustration was like a huge ball of darkness inside me. Thankfully that's subsided over time, but it's left some scars for sure. I'm much more guarded than I used to be. Still, I have better days now, I know the pain triggers and the fact it always gets worse as the day goes on, so I've had to restructure my life, as I'm sure many of us have had to do. But stress is a big factor, keeping anxiety at a low level for me is important, because the two feed each other and then into the pain.
Granny said:
Debbie, I just read your story and experience. I am 58 years old and have been on disability for a long time. I have failed back surgery, neck, thoracic and on and on, 13 plus surgeries but I was able to get disability from tmj in my thirties. I used an attorney who gets paid a percentage of whatever you get paid. I don't know if there is a rule about SSD regarding needing to have worked within the past 2 years of filing for SSD. I peeked at the file before I went in front of a judge on an appeal, and yes you do usually have to do 1 or 2 written requests denied before an attorney takes your case, but anyway, it said 90% on it and I did ask my attorney what that meant. He said 90% chance I would get it. When I got all the letters from SSD when my payments came I saw I got disability on "depression". I was presenting at that time with tmj pain and fibromyalgia and seeing a rheumatologist for possible lupus but none of these were in writing. I had gotten very ill from silicone jaw implants from the surgery I had for tmj just like all the other women who had silicone breast implants. Dow Corning did a settlement for this while in bankruptcy but have since gone back into business and are once again implanting silicone breast implants because the science disproved they caused auto-immune disease and most women choose silicone over saline because they feel and look like a natural breast. I can say without a doubt I was very ill for almost 5 years but did recover but using prednisone during that time caused early onset of osteoporosis and my spine fell apart one herniation after another, all levels. I need another lumbar surgery to decompress scar tissue and boney growth that are impinging on the nerves, I am fused at every level of my lumbar spine. I have not needed surgery since '09 and now I feel it is definitely harder on me to not be able to stand, walk, and even sit with sciatica again than the facial pain. I can get comfortable on cold packs resting and have a full blown attack of my facial pain and then I think, no the facial pain is a much bigger monster to deal with.
I am an ATN sufferer and atypical GN, possibly from having tmj surgery, I had facial pain and then it went away for 20 years. And yes, I have had only one doctor, my neuro's PA look at me with that look and asked me if I needed to talk to someone about my pain as there was inconclusive evidence of it on MRI. I am waiting for another remission but I am older now and the onset of this type of pain does happen to older patients, but really old patients. I am taking a combination of a low dosage of meds I can tolerate, gabapentin, baclofen and just recently added amytriptiline. I can not tolerate tegretol and lyrica which many do respond to.
You are saying it just like it is. I feel like you do many hours of the day. I am widowed and live alone with a doggy. I am a grandmother now and when I could stand, walk and sit I was seeing them frequently and even cared for my first grandson while my daughter worked from home. I did find getting out when I could and changing my environment changed my perception of this invisible face pain. It is obvious I have a big disability walking with a cane, and sometimes a walker and I do have a spinal deformity from failed surgery. Everyone can see this, but no one can see this face pain. My daughter believes me because she has mild tmj and has had some face pain. Now that I have become more confined I am starting to get some depression and just like you it is justified. Everyone that visits this site usually tries to give the upbeat side of dealing with this invisible pain, I try to do the same but on the other side of coping is not being able to cope. If you find yourself completely lost and not coping with this pain do seek some support somewhere, maybe it is your sister or like me I write and respond to as many discussions as I can on this site. I know I rattle on and on, but I don't think I am getting ignored. I read so many stories of those that are in more pain than I am in with this face pain and have done everything, MVD's and other invasive treatment, tried all the drugs and sometimes are worse, and sometimes have amazing results from MVD.
I have been on a page discussing PNS, peripheral nerve stimulation, neurosurgeons and pain management doctors are doing this for TN. This is the only treatment I want to try. If you would like more info on this I can reply to you. Don't give up, I see you have been a member for a long time, I am almost 2 years and I am getting the feeling there is simply is no cure for this for some of us. Take care, Sharon