Absolutely… I have just begun taking gabapentin along with trileptal, a muscle relaxer and a year ago my doc added buspar to help with the stress. It still hits usually with tingling in my cheek and eye pain but it is definitely lessened with the new meds. Does anyone else have fatigue or diagnosed with fibromyalgia since being diagnosed with TN?
My vote is yes. Stress, anxiety and/or not enough sleep will stir up the little TN monster that lives in my head. It just loves all three together. I've had to re-structure my life around it and accept (which I'm still working on) that I live a different life to what I was used to. Today is fun and games because the weather changed drastically overnight, but that's out of my control unfortunately. I think I'm going to try daily meditation, see if that helps. I've read here that some people have had improvement doing it and it's known to reduce stress. Today is probably not the best day to start, right now I feel like someone stuck a blow torch in my mouth and an elephant is sitting on the right side of my face.
This support group has definitely made a difference and I only joined recently. I arrived here in a state of fear and isolation which also adds to stress, anxiety and tiredness. I've found comfort and peace here which has helped me cope better with sharing my life with this unwanted guest.
Definitely in my case, the more stress, the more pain. I have had it explained to me that, when I am under stress or excitement my BP goes up, swelling the blood vessel near my nerve causing the pain to worsen. Makes sense to me!
It's weird. I take Elavil (antidepressant) and Xanax (anti-anxiety) to manage my TN2 24/7 burning/boring pain. It represents the most effective combination for me. For years my rheumatologist said my pain, face (he called it AFP) and body (fibromyalgia) has taken the stance that my physical anguish is just the flip side of my mental anguish. And yet I have never noticed a correlation between how crappy I feel mentally and how much pain I'm in. At one point, he attributed my pain to false messages from my nervous system to constrict blood vessels (would also explain my white/gray skin pallor), but he gave up theorizing this way and essentially told me my pain was was psychosomatic. Also, fibromyalgia, which has been better controlled than facial pain, has been described as a pain amplification syndrome in which the volume of ordinary stress is turned up by the nervous system so it is felt like pain. Yet, I can feel really anxious and notice no increase in pain. I can also be relatively at ease and feel great pain. Any explanations?
I also notice that stress exacerbates the pain. The increased blood pressure makes sense and I know my jaw is tense when I’m stressed and I grind/clench my teeth without realizing it.
Meditation, more sleep, consciously relaxing my jaw during the day, reducing my overtime work all help. Also, I’m fortunate that at this point my TN is well managed with acupuncture which has had the added benefit of reducing stress and better sleep.
The one blessing of TN has been getting to know this amazing community of people who persevere with this and even while in pain, encourage others. I so appreciate knowing others who “get it” and finding out what helps other people.
Any Doctor that would tell you your TN pain is "psychosomatic" should have their medical license revoked! TN is a real disease with real causes. I would get myself to a neurologist that specializes in facial pain diseases. There are many recommendations through the links on this website. A Rheumatologist should stick to his/her own specialty of rheumatic disorders and refer you to a qualified neurologist/neurosurgeon for treatment of your TN. Just saying......
thehoward said:
It's weird. I take Elavil (antidepressant) and Xanax (anti-anxiety) to manage my TN2 24/7 burning/boring pain. It represents the most effective combination for me. For years my rheumatologist said my pain, face (he called it AFP) and body (fibromyalgia) has taken the stance that my physical anguish is just the flip side of my mental anguish. And yet I have never noticed a correlation between how crappy I feel mentally and how much pain I'm in. At one point, he attributed my pain to false messages from my nervous system to constrict blood vessels (would also explain my white/gray skin pallor), but he gave up theorizing this way and essentially told me my pain was was psychosomatic. Also, fibromyalgia, which has been better controlled than facial pain, has been described as a pain amplification syndrome in which the volume of ordinary stress is turned up by the nervous system so it is felt like pain. Yet, I can feel really anxious and notice no increase in pain. I can also be relatively at ease and feel great pain. Any explanations?
I agree! When I am stressed and overtired usually one or the other and sometimes both. I get so much more pain. I believe that when my body is not rested, it's over taxed and therefore my nerves are more likely to reacted with these stabs and shocks. I am finally learning to REST. The house work will still be there when I wake up from my nap. It takes me so much longer to get around to the things I used to do in 1/2 the time, but I guess this comes from not taking care of my body for so long. I take my meds and feel so sleepy and forgetful all the time. Sigh! I hope one day I can deal with this fully, as I don't have Ins and don't want the alternative.
Hugs to you!
Do you clench your teeth when you are stressed? Do you feel tense elsewhere in your body? I agree there is a connection between stress and pain (and tiredness... my pain, too, is worse when I am tired but the catch 22 is that I also get tired much more easily with this condition), but I suspect it's our physical reactions to stress that trigger the worsening pain. I know when I get stressed or upset, I clench my teeth which triggers an attack. I also find that when I am stressed, I am less in control of myself. For example, I am more likely to shout, which means I open my mouth wider and put stress on my jaw. I can't cry without causing incredible shooting pains... uses too many muscles and overstimulates the nerves I guess. As someone else posted, excitement can also work like stress. I find this is true too: when I'm very happy or excited, I'm more likely to forget about not moving my jaw too much, and laugh and smile... which triggers an attack.
I guess what I'm trying to say is take careful note of what your body does when you are stressed and see if there is an actual physical trigger. If you can find something, it may be that you can reduce the impact stresses have on you. Remember, this is one thing that you can control, not your neurologist, or the disease itself. Good luck and warm thoughts.
Hello Kim: Yes, stress definitely can trigger TN pain and here is why: when you are under stress, your blood pressure tends to rise. When your blood pressure is higher, the pounding in your offending artery or vein against your trigeminal nerve is increased, so is more likely to send erroneous pain signals to your brain. I have repeatedly noticed this during my 8 years of TN and my neurologist agrees.
When I saw my first Neurologist and he had no diagnosis or medical history for me the first thing he said when I asked what is this horrible thing and what is causing it, he showed me a photo in a medical book, ran his hands over the cranial area and said your nerves here are reacting to stress. I looked at him like he was crazy. He knew nothing about me. My pain was teeth first, right ear inside and around, forehead, chin, little on cheek. I also suffered with severe head burning which felt like someone holding a steam iron over the top of my head. He then prescribed Tegretol and Klonazapam. He sent me on my way and suggested I see a psychiatrist...Told me I'd be better in two months. I got worse and perceeded to get other symptoms. I saw him three months later and by then I'd done a lot of research. I couldn't even wear my reading glasses or allow my hair to swipe my face. That was almost three years ago. I stood up for myself and told him that I lived a life full of activity, bike riding, worked in Yosemite Nat'l Park, was positive and had managed stress well along with a good diet of anti-oxidants, proteins, veggies, etc... His reply was well I guess you didn't manage as well as you thought. Wow. I've been through different meds., doctor's, and educated myself on this matter. The result for me is that I know by what some N's, and primary Doctor's admit and really don't know causes this for most of us, and they do only what they have been trained to do. I know I felt like I was dying when I lived with this for the first year. I also know that I've gotten a grip on my triggers and do my best to avoid them. Foods, wine, coffee, acid like foods, too much activity bending, head turning, without enough rest and sleep. Also, stress. Like running around too much, losing things, and talking too much about stressful matters. I can be feeling relatively fine with a 4 pain level and have conflicts or out of my control issues taking over my life and I can feel the burning start. I start wanting to rub my nose, and my lips and chin start to hurt. I literally have to tell people I love, that I can't talk about this stuff any more for now. Take a pill and lay down and then I might get up and have some relief. I won't eat if the teeth hurt because it will cause my head to hurt, or behind my ears. I have been diagnosed as T.N. II with some I, bilateral. I'm hoping for surgery soon. The medications have stripped me of my life and some side effects of Neurontin put me in the emergency room. I did tell that first N. who thought Atypical maybe, that I have lots of Love, support, and hope, and that anyone who wakes up one day with this thing we live with will have major stress and emotional ups and downs. I told him he was wrong to suggest that stress was what brought this on. Having said all this. It's very important to remove toxic energies from our lives, to find joy, laugh, and for me I need the out doors, and peace. We can't avoid all stress but we can remove some and we can calm ourselves in the midst of the storm. It's all a part of the plan we set for ourselves. What works for one may not help others. Anyway this is a strange non-understood condition, with little funding, and no real answers. Insurance limitations and so on. You have to care for yourself. Find pleasure in your life in new and creative ways. I know this is a long letter. Not for everyone. But sometimes I need to talk with others who get what we don't get and I also have learned many things. I hope I can help.
I want to clarify that my rheumi never used the word "psychosomatic." But pain as depression's "other side" seems to come to the same thing. I went to a neuro for a second opinion and got it after a few seconds, it seemed: AFP. What is the difference between TN2 or ATN and AFP? I see no discussion groups for AFP sufferers. Do they all drift over here?
I notice that there is a HUGE (40%?) overlap of people with fibromyalgia (the reason I went to a rheumi) and people with TN. That can't be because of pressure on a cranial nerve. Strikes me it has to be, for us at least, something more global, that hurts us in two ways -- something that affects the entire nervous system.
Who has fibro, how did it start, and do they (fibro and TN) seem connected? Clearly, they are afffected by the same drugs. I have a story I haven't seen on here, in which a virus plays a role, which makes me wonder where I belong.
Jimmy Works said:
I feel the same way. Stress is one thing that I think does trigger it. Maybe its not the cause, but I do think it triggers mine. I wondered in the past if it wasn't the actual cause, because of job and family stress I dealt with. My original neuro said no its not a cause. I say yes, it is a trigger.
Over my 16 yrs of coping with TN I have heard 3 different times that maybe there is a virus connection. The last recently came from a anesthesiologist friend I have. We were fishing one day and the subject came up and he said he said "you know when they do find a cause for TN one day, they may find that's its caused by a virus". Of course, this is just passing statement on his part, a thought, no scientific proof. I told him that's the 3rd time I have heard that. I would think though with all the time TN has been called TN that would have been checked on thoroughly. I don't know. Nobody does. I want to say this. The NS that did my Gamma Knife and Cyberknife treatments said "sometimes when we do the MVD we go in and find the nerve compressed by a blood vessel". We all know that. But then he just shook his head, and I said "sometimes nothing". He nodded and said "nothing". I guess that's why they gave me the GK and 9 yrs later the CK. They said the MRI showed no compression. Who knows, but God Himself. Its a weird and dreaded disorder or disease. And that has yet to be fully explained to me also. 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. Back to the subject matter. Stress a trigger?? My vote is yes...from experience.
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.
Here's a recent research article on meditation for anxiety, depression and pain.
Thanks Ross
I also feel there is a strong connection with stress and it triggering pain. I have also found that I have to constantly keep something in my stomach because if I miss a meal, or can’t have lunch or dinner at the right time and it’s late, an empty stomach triggers the pain for me.
Howard, our site expert, Red, believes AFP is a waste basket term used by Dr's who have no idea, And that is why you don't see many discussions here. red would be pleased to explain if you message him.
thehoward said:
I want to clarify that my rheumi never used the word "psychosomatic." But pain as depression's "other side" seems to come to the same thing. I went to a neuro for a second opinion and got it after a few seconds, it seemed: AFP. What is the difference between TN2 or ATN and AFP? I see no discussion groups for AFP sufferers. Do they all drift over here?
I notice that there is a HUGE (40%?) overlap of people with fibromyalgia (the reason I went to a rheumi) and people with TN. That can't be because of pressure on a cranial nerve. Strikes me it has to be, for us at least, something more global, that hurts us in two ways -- something that affects the entire nervous system.
Who has fibro, how did it start, and do they (fibro and TN) seem connected? Clearly, they are afffected by the same drugs. I have a story I haven't seen on here, in which a virus plays a role, which makes me wonder where I belong.
I should stress, that in my case, I don't believe stress caused my TN. It just exacerbates the pain.
Stress creates a physiological change in our bodies similar to the "fight or flight" heart faster, ready to run etc. effectively it is our bodies hormone system getting the body ready for a critical survival situation, speeding everything up - blood pressure rising is one example, another is the increasing nerve signals via the hormones released into our body. Most of the medications that we take are aimed at slowing the nerve signals via hormone releases into our body - so if you get stressed for prolonged periods of times, the body is working against the medications which decreases their effectiveness - breakthrough pain and exacerbations. When we don't get enough sleep, our bodies also become similarly physiologically stressed which is why we need to ensure we have the right nutrients, amount of sleep and safe stress free environment. Which, if you haven't got TN or teenagers - isn't a big ask. With TN (or teenagers), it can be a bit more of challenge. Sometimes listening to your clenched jaw and backing off, is being your own best friend.
I agree with everyone here. Stress definitely is a trigger for my tn. Before my mvd a year ago stress or if I was upset would cause the incredibly painful spasms that would make me cry like a baby, making the pain continue. After my mvd last January I was immediately pain free until last august when work has been incredibly stressful, when my manager left and I have been working my job plus the hr managers role ever since, therefore doubling my working hours and working far above my capabilities. Then coming home to 3 kids and all that entails. So the electric shock pains returned and after two weeks of putting up with that I went back on my tegretol. I am stable now, however when I am particularly stressed I get type II symptoms of my top teeth feeling like they are being crushed together. I find I clench my teeth when I am stessed so I’m sure that doesn’t help. I am back to my neurosurgeon and another MRI mid February. I am hoping it is just that I am still healing and the incredible stress I have been under is the cause.
But I totally agree that stress causes it, and tn causes stress. The neuro told me after my surgery that tn would be my “Achilles heel” for the rest of my life…whenever I was under stress I would be more likely to have tn pain. He believes that stress is a trigger.
And my new hr manager starts in two weeks so I get to drop my hours back and share my work load. Yay!
I have started to do more things for me, like bike riding, sitting down and reading a book without feeling guilty…anything that relaxes the mind. We need to be selfish sometimes if it means relieving our stress levels. And hopefully those around us can understand our needs.