I have some rare tolerable attacks where I am told to breathe through them and to “go to the beach” or some where I feel at peace in my mind; self peace within my mind, but it’s so extremely difficult! I cannot stop or prevent the spasms/attacks. Does anyone have advice or ideas for me and each other?
If you haven't visited our Face Pain Info tab on the menu above, then I'd invite you to. There are sections dealing with improving your emotional and personal quality of life, that might be useful. A lot of info on more mainstream treatment options, too.
Regards and best,
Red
I have 24/7 pain, so I don't have attacks the way you do. But when my pain is at higher levels, I try to garden or do light housework, or anything that can occupy my brain without requiring any concentration. Sometimes it allows me to get lost in the task at hand, and help keep my thoughts away from my pain.
I also always remind myself that while I might be at my highest pain level at the time, that there are other times when I'm at a lower pain level, and just keep reminding myself that there will be a shift for the better.
Good luck, I know how hard it all is.
When I'm in pain, I can't think of anything but the pain. I hate living my life like this. I just go to the ER and cry most of the time. They don't know what to do with me. No one does. I have been diagnosed and undiagnosed so many times and its frustrating.
AT least my doctors know that my pain is real and they treat me for it accordingly but why won't they just call it what it is....TN!
Hi Meghan.
I appreciate your post. I am always on the hunt for new methods of coping with big pain attacks. I have pain of some kind all of the time though I still have major pain attacks. I, like you, often use breathing exercises to try to relax through the pain. I learned a couple in relaxation training courses that seem to help more than others...
1. Close your eyes, and count from 1-10 then start over. Count 1 on inhale, 2 on exhale until you reach ten then start over. If you notice you have counted past 10 return to counting from 1-10. It takes some focus to do this and at the same time I focus on slowing my breathing. I picture the numbers in my mind while I am counting, similar to envisioning a beach.
2. Like the others who posted before me I find activities that require thought or attention. House-work, gardening and I also do Sudoku puzzles (they require a lot of thought). Reading, watching television are not effective for me as I can still think about pain.
3. If possible, I try to go to sleep. I don't work due to TN so this is an option for me. If I can get to sleep this almost always breaks a pain cycle/attack.
It is very hard for me to get through severe pain attacks. However, 6 of 10 times I am able to break a pain cycle by using the above techniques.
During severe attacks when none of this works I rely on medication. I take clonazepam most often as it is an anti-anxiety medication used for break-through anxiety (not a medication that should be taken daily as it is addictive and tolerance building). It induces relaxation for me and sleep. I also take percocet as a break-through medication when none of the above has worked.
Hope this helps. Take care. Johanna
My heart goes out to you! I have been where you are and it is not a place that is easily left behind. I was misdiagnosed only twice before a good doctor sent me for an MRI which showed a vascular loop (blood vessel) compressing my nerve. A definitive diagnosis, finally. However, not before I spent thousands of dollars on other treatments for TMJ and tension headaches (the incorrect diagnoses).
If you haven't yet I would request/demand an MRI or a referral to a neurologist or pain management specialist where hopefully you will receive a proper diagnosis and can begin to get the treatment and care that you deserve and need! Perhaps, you have already been down this road, but keep pushing forward.
I will keep you in my thoughts and wish you the best! I have received a great deal of help, compassion and kindness from all of the people on this site and I know that they care about you and your story! Take care. Johanna
sonyathescreenwriter said:
When I'm in pain, I can't think of anything but the pain. I hate living my life like this. I just go to the ER and cry most of the time. They don't know what to do with me. No one does. I have been diagnosed and undiagnosed so many times and its frustrating.
AT least my doctors know that my pain is real and they treat me for it accordingly but why won't they just call it what it is....TN!
Thank you so much. I am currently seeing a pain management doctor and all CAT scans and MRI's are normal. The Pain doctor diagnosed me with a neuritis but that was about it. I thought at least if the pain is coming from the trigeminal nerve then call it what it is.....
I have Lupus as a primary condition and I believe that lupus is wreaking havoc on my peripheral nervous system.
Sonya, though you're certainly welcome here at Living with TN, the Ben's Friends Community also has a site dedicated to "Living With Lupus". The communities are listed at the bottom left of the home page.
Regards, Red
Thanks I saw that as well. I just came here because I'm looking for answers about TN and I believe that Lupus is causing this problem. No one seems to know anything about this disease and Im getting the run around.
Richard A. "Red" Lawhern said:
Sonya, though you're certainly welcome here at Living with TN, the Ben's Friends Community also has a site dedicated to "Living With Lupus". The communities are listed at the bottom left of the home page.
Regards, Red
Sonya.
Great! I am glad you made it to a doc that can assist you with some pain management. At least your facial pain has been acknowledged in some way. There are many people on this site who also have normal MRI's- no nerve compression or otherwise. It sounds like you are undergoing a double whammy right now.
I don't know much about Lupus. Hopefully, the link that Red listed above will provide another resource for you.
Again, hang in there! I found it helpful to take charge of my health. If you don't feel you are getting thourough care or are unhappy with your doctor, see a different one. I have switched doctors several times when unhappy with the care I am receiving or due to lack of knowledge regarding TN. It took a while for me to understand what taking care of my health meant- choosing my healthcare providers, participating in my treatment, and so, so much more. Good luck to you, Sonya! Thinking about you! Johanna
sonyathescreenwriter said:
Thank you so much. I am currently seeing a pain management doctor and all CAT scans and MRI's are normal. The Pain doctor diagnosed me with a neuritis but that was about it. I thought at least if the pain is coming from the trigeminal nerve then call it what it is.....
I have Lupus as a primary condition and I believe that lupus is wreaking havoc on my peripheral nervous system.
Thank you so much. I can’t believe how helpful you guys are. I said before that you guys sure are helpful and friendly to be experiencing the worse pain imaginable. Wishing you all pain free days!
Hi Crystal,
I do the same thing. I find light housework to do or something to occupy my mind. I have pain daily and my triggers are things that I do on a daily basis....wash my face, hair, brush teeth..anything like that. And cold damp weather really gets to me. I am a very depressed person at this point in life as they have told me that this will be a lifelong battle for me. I really enjoy this group and good luck to you
Billie
crystalv said:
I have 24/7 pain, so I don't have attacks the way you do. But when my pain is at higher levels, I try to garden or do light housework, or anything that can occupy my brain without requiring any concentration. Sometimes it allows me to get lost in the task at hand, and help keep my thoughts away from my pain.
I also always remind myself that while I might be at my highest pain level at the time, that there are other times when I'm at a lower pain level, and just keep reminding myself that there will be a shift for the better.
Good luck, I know how hard it all is.
Oh it is so hard to just push the pain aside ,I do try !! I also garden which is great therapy ,but sometimes you just need a rest ,a nice cup of green tea and some trashy TV !
I do feel for people who have to work ,or take care of children (or both ) I am retired so only have me to worry about ,though my husband does like the odd dinner and clean shirt .
I hope everyone is having a good day ,xx
I have been through the same exact thing! I am actually, right now, sitting in the waiting room of neurology waiting to go back for an emergency consolation with a somewhat famous neurosurgeon because I’ve been on several medications with extremely high doses and have had no success. I AM SO FRUSTERATED! My mOther and I don’t know what to do any more. Hopefully, this doctor will be able to help me.
sonyathescreenwriter said:
When I’m in pain, I can’t think of anything but the pain. I hate living my life like this. I just go to the ER and cry most of the time. They don’t know what to do with me. No one does. I have been diagnosed and undiagnosed so many times and its frustrating.
AT least my doctors know that my pain is real and they treat me for it accordingly but why won’t they just call it what it is…TN!
how did it go natural0195 ?
I love how sometimes we spend $100's $100's of dollars visting a Doctor and at the end of all the MRI scans, X-rays... CTs they say "we dont know whats wrong with you" or "I think you have cluster head aches"... I almost laughed at the Doctor that said that I have cluster head aches, infact I almost walked out him without responding.
I currently am prescribed opioids for my ATN and have been for about 3 months now. They allow me to do so much more than I could before. The reason Doctors are hesistant to prescribe them is because they are addictive. But OH MY GOD if my pain stopped I would be so so so happy that I didnt need any medication, the absolute last thing I would be doing is taking more medication. Maybe you could enquire to your GP natural0195 about oxycontin and oxycodone, they work wonders for me.
Luke,
This is unbelievable how much alike we are....my first neurologist said I had cluster headaches....So, ok , I went to a different dr in the same practice and he said these are all symptoms of TN...I do have a question for you Luke, do you get the burning sensation on your face and if so what do you use to relieve that pain? I have not found anything to work.
Sonya, I have Sjogren’s Syndrome/MCTD, and I was told that the inflammation from my autoimmune disease was probably my biggest triigger…culprit?..for my TN. I am not sure if TN is the official diagnosis, though. I did hear my one doctor say trigeminal neuropath, but I have learned from experience that what is said and what goes into my records can be two different things.
sonyathescreenwriter said:
Thanks I saw that as well. I just came here because I'm looking for answers about TN and I believe that Lupus is causing this problem. No one seems to know anything about this disease and Im getting the run around.
Richard A. "Red" Lawhern said:Sonya, though you're certainly welcome here at Living with TN, the Ben's Friends Community also has a site dedicated to "Living With Lupus". The communities are listed at the bottom left of the home page.
Regards, Red
It may be important to recognize that there are differences between "neuralgia" (an inflammatory process) and "neuropathy" (damage due to mechanical impacts on the nerve). Classic TN responds more often to anti-convulsant or anti-seizure meds than to anti-inflammatory meds. Atypical TN is often the other way around, with better response to meds used in treatment of neuropathic pain.
Medical practice is coming to view what we have called up to now "trigeminal neuralgia" as more consistent with "neuropathic" pain due to mechanical damage sustained by the nerve. Some aspects of this variety of face pain don't fit well in either category. Notably, when MVD surgery is performed, it is common for patients to wake with no face pain (other than surface pain around the incision). Neither inflammation nor mechanical damage to the nerve should theoretically respond "instantly" to removal of the stimulus provided by a pulse, from the surface myelin of the nerve. But such rapid response is common.
Just my two Red cents, for whatever they're worth.
Regards, Red
I'm glad I saw this thread, and appreciate everything everyone has said. I figured rather than just take from what others have said, I should do better on giving back through commenting (in other words, I've done far more reading than writing here so far): so here goes—the biggest problem I've had in terms of coping has been the sprint versus marathon issue. Meaning, I became so focused on "how am I going to go through my whole life like this?" and began to treat this issue like it's a sprint that will end soon as long as I do X, Y, and Z in the right order.
That wore me out really quickly, and I hit a low point probably twoish weeks ago. At around 4 am, after spending a bunch of time reading on here, I began to shift my perspective to one of a marathon instead of a sprint. So, instead of me focusing on the end (of which there likely will be none), I'm focusing on each moment as it happens.
In other words, when it's really bad, sometimes I literally just tell myself, "I can deal with this level of pain right now; I can deal with this level of pain right now ..." because in that one moment, I can. But if I let myself add up a whole lifetime of that level of pain, I would breakdown. It may sound silly, but that little bit of a change of perspective (thanks to many people's messages and posts in here) has really made a difference for me.
You seem to be making progress, Wrigley. I sometimes remind chronic pain patients that we run the Pain Marathon in stretches fifty or a hundred yards at a time.
It's vital that patients take back their power and become active in managing their own pain issues. People literally "do better" when they become active in self-support and the support of others, than when they suffer in silence or constantly reach for "the" final answer to their pain. Many people do have very long term total remissions of trigeminal facial pain. But many also do not. And for all of us, the focus needs to be NOT on what we've lost in the life we thought we had... but on what new and positive experiences we can create in the different life that we have now.
Thanks for your input. With your permission, I may use some of your remarks in preparing the new "Coping With Crisis" page that is in early draft for the site.
Go in Peace and Power
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN