I’ve been thinking a lot about ALL the emotions we experience while dealing with TN.
Whether we’re in the midst of an attack of pain,
Post procedure, ( mvd, gamma knife, Rhizotomy etc)
Newly diagnosed,
In remission,
Etc.
Where ever YOU are at this moment with TN, how do you cope ?
Maybe we can learn from one another…
Mimi
Really good question, Mimi! When I'm in the middle of a flare up of break through pain, pretty much all I can do is cry and pace around, honestly. A little embarrassed to admit that, but it's true. I do a lot of praying and trying to think positive but it's really challenging to be upbeat when I'm being hit with waves of searing pain. I have to try to remind myself that there's always tomorrow and that tomorrow could very possibly be a better day. I look forward to going to bed because that's when my pain subsides (unless I clinch my teeth or something).
When I'm not in a flare up, I still have times where intense fear will wash over me and I dread the future. Most of the time, though, I'm able to remind myself to take it one day at a time. I know it doesn't do me any good to worry about what's going to happen down the road. I don't know about everyone else, but I deal with a wide variety of emotions when it comes to TN. I have MS, too, but never really asked "Why Me"? It wasn't until TN hit that I've asked that question (which really does me no good because it doesn't take the pain away and it just makes me miserable to think this way). I kind of go between feeling fear, anger, and acceptance and then back to fear again. lol.
It helps me to keep busy with a hobby (for me it's photography, decorating) or sending encouraging messages/texts to other people to get my mind off myself. When I'm having facial pain, I really can't talk on the phone, so it's much more doable for me to send emails, etc.
I'd love to hear how some of you cope. :)
I admittedly have not yet found a "good" coping method so am anxious to hear responses. For me, I stick my fingers on the right side of my head (this is my localization) with one in the ear, one on the jaw hinge and another on the side of my chin - and I PUSH. I find that keeping my head in the downward slightly cocked to the left angle allows me the ability to swallow (when absolutely necessary) otherwise I spit, drool - whatever I have to in order to delay the inevitable. Lying flat on my back looking straight to the ceiling usually offers me the most relief (if that's what you can call it) when swallowing is not necessary. I silently cry (i.e. tears - no sound or grimacing as that makes it worse) and I do my absolute best not to panic for as long as I can hold out. And I wait.
I still haven't come to terms with this horrid condition. When I thought I was doing better a doctor told me that I have root resorption of my upper front teeth due to my bite going off as a consequence of ATN and surgeries. Those teeth hurt but not as bad as my ATN affected teeth. I'll probably have to have another surgery where they break my jaw bone and reposition it...and then probably implants to replace the upper teeth. I'm dead scared of more nerve damage. I often ask myself the how did I get here question. Every morning I wake up and check if there is a splint in my mouth or if it's all but a nightmare. Once or twice a week I feel helpless and I just don't know how I can live my life like this. Most of the time though I'm doing reasonably ok....going out with friends and colleagues helps to take my mind off ATN but if I go out a few times in a row I get very tired, which makes the pain worse. I'm so much more sensitive than I used to be, I cry a lot. Sometimes, the best I can do is to pat my cat and listen to his purring. Also, listening to music or watching a program I enjoy helps.
PERFECT DESCRIPTION FOR ME!!
Vicki Dvorak said:
Really good question, Mimi! When I'm in the middle of a flare up of break through pain, pretty much all I can do is cry and pace around, honestly. A little embarrassed to admit that, but it's true. I do a lot of praying and trying to think positive but it's really challenging to be upbeat when I'm being hit with waves of searing pain. I have to try to remind myself that there's always tomorrow and that tomorrow could very possibly be a better day. I look forward to going to bed because that's when my pain subsides (unless I clinch my teeth or something).
When I'm not in a flare up, I still have times where intense fear will wash over me and I dread the future. Most of the time, though, I'm able to remind myself to take it one day at a time. I know it doesn't do me any good to worry about what's going to happen down the road. I don't know about everyone else, but I deal with a wide variety of emotions when it comes to TN. I have MS, too, but never really asked "Why Me"? It wasn't until TN hit that I've asked that question (which really does me no good because it doesn't take the pain away and it just makes me miserable to think this way). I kind of go between feeling fear, anger, and acceptance and then back to fear again. lol.
It helps me to keep busy with a hobby (for me it's photography, decorating) or sending encouraging messages/texts to other people to get my mind off myself. When I'm having facial pain, I really can't talk on the phone, so it's much more doable for me to send emails, etc.
I'd love to hear how some of you cope. :)
Great discussion! I am doing well now for the most part. Since I got bumped up to 1200mg a day in December, I have done pretty good. I have had a few days of some pain, but no where NEAR as bad as without meds. We just got back from Gulf Shores and I will tell you, I did NOT want to come back! My sinuses were happy there, I was happy there! I could LIVE on the beach seriously. I can't wait to go back! Sometimes, I do things that I know might make me have pain later, but I do it anyway. I am not going to let it control me if I can help it. I have to deal with sleepiness all the time, but if my pain gets to the point that meds aren't helping, I will give ONE more increase a try and see how I do with side effects, etc.... If I can't handle it or it doesn't help, then we are scheduling the MVD asap. I have just gotten to that point that I am NOT going to let it have me!
It depends on the moment. right now my stinkin' thinkin' is beating me alnog with the pain. I hate everything about this and just want to forget it all. Stop the world I want off!!
I am doing really well with my meds and pain right now. I have days of flare ups but I can manage to get thru them without most people knowing just how much pain I am in at that moment. At home I do not try to hide it and then I usually close my eyes and do my deep breathing while keeping my jaw slack. I am just beginning to get past denial and anger. My fear is raising it’s head again as I was just told by the neurologist that it was quite likely that I would develop TN on my other side, healthy, as there is clear compression visible on my MRI. Prayers have also helped me so much.
Patty you have the best solution. When in pain the deep breathing really does help. Getting upset or uptight when in pain just seems to make the pain worse or last longer. I find I need to be calm, I know everyone wants to cry but I long ago found that makes things a lot worse!! I do Reiki which helps alot too. I have now accepted TN. I find that has helped as well. When not in pain I just take things one day at a time. Sometimes I worry about the next episode we're only human! The meds make me quite emotional as well.
I had some training in mindfulness meditation before TN arrived in the middle of the night three and a half years ago, so I already had the knack of it and I’m grateful for that. I mostly put this practice into my drawings and when I think I can’t stand one more minute of pain, if I can get myself quietly involved with making tiny marks on paper with good graphite pencils, then I can manage for quite some time. But concentration is difficult and sometimes I can’t do this for very long but on good days maybe a few hours. It’s when I find my quiet centre that find myself and the pain is still on its own ride, but I keep it on its own “track” and try not to let it disturb me.
My worst enemy is anxiety which is the high volume switch for pain. So if I can keep anxiety at bay I can manage. My mindfulness practice helps.
What I can’t manage though is the weather. As more time goes by I find it harder and harder to keep my head and face warm enough to be out in the world. I was such an outdoors person and now I’m a bit of a slug. It feels like Death by Air in smaller and smaller increments.
Donna, you made me long for the Gulf Shores! Clare, maybe I will learn to do Reikki. I do go for Shaitsu massage when I can and that is really good for me.
For me, TN almost never goes into remission (I have Type 2) -- even when I'm as close as I get to pain-free, I'm still at about a 2-3 on the pain scale. I also have Ehlers-Danlos Syndrome (a genetic connective-tissue disorder, which makes me more prone to nerve issues like TN), which has its own pain-related issues, especially the damage to my spine. My TN attacks also set off migraines that don't respond to my normal migraine meds.
I was diagnosed 4 years ago, and have tried and failed all the Schedule III and below meds for TN. Either the side effects were too severe, or they were ineffective. Now, my neurologist is referring me to Pain Management -- which I fear, because they want to take over ALL pain-related prescriptions, and since I have two not-terribly-well-known conditions, I worry about turning over essential elements of my medical care to a doctor who is not familiar with me, with EDS, or with TN2.
I'm still in the "looking for answers" phase -- I hope that by doing enough research, I'll hit on the right thing that will finally be effective. I've had Gamma Knife and MVD ruled out as options, so all I can hope for is to find an effective medication to manage the pain, rather than a "cure" (although I'll never stop hoping that medical science will catch up with us someday!)
When I have a severe attack/flare, because of the associated migraine activity, I have to cover my eyes and lie as still as possible in a dark room. Lying on my back can make the TN worse, but I can no longer put any pressure on the left (affected) side of my face, and I can't lie on my right side for very long. I end up propped in a nest of pillows, wishing for relief.
Having more knowledge makes me feel more empowered, so that's the route I've chosen. Even if I don't happen across the perfect treatment, I at least figured out that I had TN2 on my own, so I spared myself ineffective surgical procedures that are less good for TN2 vs. TN1. I did still get evaluated for surgery, but since they can't find the location of the compression or lesion, they won't do it, after 7 MRIs in 2 months.
Still holding out hope that a medical treatment or medication will finally work on my admittedly strange body!
You sound so much like me with a pain level that is always 2-3 on the pain scale :( I have still not found an effective way to deal with the emotional issues. Even after all these years, I am still in an "anger" phase and tend to lash out when I am miserable. Pretty much everyone knows to just leave me alone and not even talk to me. Besides it makes things worse to open my mouth and talk. I can do guided imagery sometimes.....but it doesn't help the pain and just tends to frustrate me. When I have eye pain (and I have just experienced a new symptom today of intense pain all around the eye socket...just f-ing ducky, another pain area), I tend to put my fingers over the worst area and apply very light pressure...it seems to keep it from getting worse in intensity. There was just a new article published about MRI technique for discovering TN. It's on this website and also the Facial Pain Association (formerly TNA) site. Maybe it's another piece of information we have to inform our Drs about. [insert big sigh here] Hope tomorrow is a better day for each of us.
Ashbet said:
For me, TN almost never goes into remission (I have Type 2) -- even when I'm as close as I get to pain-free, I'm still at about a 2-3 on the pain scale. I also have Ehlers-Danlos Syndrome (a genetic connective-tissue disorder, which makes me more prone to nerve issues like TN), which has its own pain-related issues, especially the damage to my spine. My TN attacks also set off migraines that don't respond to my normal migraine meds.
I was diagnosed 4 years ago, and have tried and failed all the Schedule III and below meds for TN. Either the side effects were too severe, or they were ineffective. Now, my neurologist is referring me to Pain Management -- which I fear, because they want to take over ALL pain-related prescriptions, and since I have two not-terribly-well-known conditions, I worry about turning over essential elements of my medical care to a doctor who is not familiar with me, with EDS, or with TN2.
I'm still in the "looking for answers" phase -- I hope that by doing enough research, I'll hit on the right thing that will finally be effective. I've had Gamma Knife and MVD ruled out as options, so all I can hope for is to find an effective medication to manage the pain, rather than a "cure" (although I'll never stop hoping that medical science will catch up with us someday!)
When I have a severe attack/flare, because of the associated migraine activity, I have to cover my eyes and lie as still as possible in a dark room. Lying on my back can make the TN worse, but I can no longer put any pressure on the left (affected) side of my face, and I can't lie on my right side for very long. I end up propped in a nest of pillows, wishing for relief.
Having more knowledge makes me feel more empowered, so that's the route I've chosen. Even if I don't happen across the perfect treatment, I at least figured out that I had TN2 on my own, so I spared myself ineffective surgical procedures that are less good for TN2 vs. TN1. I did still get evaluated for surgery, but since they can't find the location of the compression or lesion, they won't do it, after 7 MRIs in 2 months.
Still holding out hope that a medical treatment or medication will finally work on my admittedly strange body!
For me, the worst part of this whole ATN nightmare is its unpredictable nature, despite avoiding all the known things that will trigger an attack (like cold air & wind). I never know from one day to the next (sometimes hour by hour) how I am going to feel. I've had to cancel so many plans, lunch dates, dinners, appointments, etc. that no one even calls me anymore. And it breaks my heart a little more each time that I have to disappoint my grandkids and cancel someting I have planned with them, or miss one of their events. I feel like a hermit. My car is going to be 3 years old and I don't even have 6000 miles on it. Somedays, I just want to stop the world and get off.
Oh, Not Again, I *really* get where you're coming from -- and combining this disease with reduced mobility (I need to at least have wheelchair accessibility if I'm going to a social function -- I may need the chair unpredictably, I may not need it at all, or I may need it full-time, depending on the state of my spine/hips/ability to stand) makes it seem like I "don't want to do anything" anymore -- but if "anything" involves inaccessible locations as well as unpredictable pain and worry about driving myself alone (in case I get stranded because I can't drive back -- I *know* I'm unsafe on the road when in intense pain, it's just too distracting), then I guess I'm spending a lot of time at home :/
"Wish I could stop the world and get off" is a thought I have A LOT, too.
I've tried really hard to keep my spirits up, stay proactive, not slip into depression and inactivity, but it just seems like there are so many roadblocks in the way right now. I'm lucky that my partner and adult daughter are supportive, and while my mother is an utter horrorshow (she still thinks I'm faking it to get attention, and "teaching my daughter to be disabled" -- uh, Mom, last time I checked, we have a GENETIC DISORDER, not a lack of willpower!), she at least doesn't live with me :P
I'll run that article by my neuro -- I just had detailed sagittal imaging done and something called a "FIESTA scan", which I was joking with the tech about -- but I'm not sure whether that technology is available in my area. They redid all of my MRIs from four years ago, plus two new types of scans, because they were hoping to find a blood vessel constricting the nerve, but nothing came of it. I'd gotten my hopes up, because the doctor thought he saw a vein loop, but it apparently was ruled out by the more detailed imaging. I was really hoping for MVD, because it's my best hope for relief, to my knowledge.
But, yeah. You have my sympathy and empathy -- it's so exhausting and draining never being actually pain-free, and I've started developing cognitive issues that the neuropsych I saw for testing said were probably the result of having uncontrolled pain for so many years. He said that part of my brain was always occupied with processing the pain input, which is why my attention/focus/executive function/attention span have gone to hell (basically, I developed adult-onset ADD), but all the rest of my results are at or above normal. With reduced capacity, it's hard to just deal with all the memory-related tasks and day-to-day stuff that requires focus or motivation.
Still dragging myself along by my fingernails, but it's been rough, and unless Pain Management can help me (more roadblocks there -- they want all my neuro reports before they're willing to even book an initial consult, and my neuro is, of course, on vacation), I flinch away from thinking about the future. I'm not quite 40, and I don't think I can do 30 more years of this.
Oh dear...I am so sorry. My 35 y.o.niece (brother's daughter) has MS and I worry that she wil develop TN. It's one of the first things they looked for with me, but said no, I didn't have it. We are not sure where hers came from. So sorry about your mother's attitude. Some people just cannot accept factual evidence. My ex-MIL still thinks her son's alcoholism is going to be cured by his going to the gym every day and drinking coffee. Doh!! I cannot get it through her head that he has a disease and if he doesn't quit drinking soon, he is going to die within a few years. I'm glad to know you have a good support system. I am pretty much on my own here. My ex & I divorced and I moved out here to Oregon just before my TN came back. My daughter only lives 1/2 mile away, but with work, 2 kids and a hubby that travels frequently she always seems too busy to even call. We tried to reconcile after the 2nd MVD and he moved out here when he lost his job in Ohio. But when it came back in only 9 months and then the stereotactic procedure failed...he started blaming me and my pain issues for his drinking and went back to Ohio. We have been on and off & back & forth for the last 6 years. Then things came to an ugly head just 1 month ago and well....that's all she wrote! I don't drive much because of the meds I'm on. Although they don't cause me to feel "high" or sleepy, if something were to happen it would be considered a DUI. I can't take that chance and so don't venture more than a few miles from my house and then only for groceries and Dr. appts & an occasional Starbucks...lol.
You mentioned cognitive issues. Are you on gabapentin? That is one of the drugs that caused me to have severe cognitive dysfunction. I just could not think straight....lose words and thoughts, etc. The Dr. said that didn't sound like a normal listed side effect...but I've heard from so many that had the same problem. Never could even get to a therapeutic dose with it.
I've been through pain management and it wasn't too bad. minor road blocks here and there...mostly due to thei inexperience with ATN...so arm yourself well!
Peace.
Ashbet said:
Oh, Not Again, I *really* get where you're coming from -- and combining this disease with reduced mobility (I need to at least have wheelchair accessibility if I'm going to a social function -- I may need the chair unpredictably, I may not need it at all, or I may need it full-time, depending on the state of my spine/hips/ability to stand) makes it seem like I "don't want to do anything" anymore -- but if "anything" involves inaccessible locations as well as unpredictable pain and worry about driving myself alone (in case I get stranded because I can't drive back -- I *know* I'm unsafe on the road when in intense pain, it's just too distracting), then I guess I'm spending a lot of time at home :/
"Wish I could stop the world and get off" is a thought I have A LOT, too.
I've tried really hard to keep my spirits up, stay proactive, not slip into depression and inactivity, but it just seems like there are so many roadblocks in the way right now. I'm lucky that my partner and adult daughter are supportive, and while my mother is an utter horrorshow (she still thinks I'm faking it to get attention, and "teaching my daughter to be disabled" -- uh, Mom, last time I checked, we have a GENETIC DISORDER, not a lack of willpower!), she at least doesn't live with me :P
I'll run that article by my neuro -- I just had detailed sagittal imaging done and something called a "FIESTA scan", which I was joking with the tech about -- but I'm not sure whether that technology is available in my area. They redid all of my MRIs from four years ago, plus two new types of scans, because they were hoping to find a blood vessel constricting the nerve, but nothing came of it. I'd gotten my hopes up, because the doctor thought he saw a vein loop, but it apparently was ruled out by the more detailed imaging. I was really hoping for MVD, because it's my best hope for relief, to my knowledge.
But, yeah. You have my sympathy and empathy -- it's so exhausting and draining never being actually pain-free, and I've started developing cognitive issues that the neuropsych I saw for testing said were probably the result of having uncontrolled pain for so many years. He said that part of my brain was always occupied with processing the pain input, which is why my attention/focus/executive function/attention span have gone to hell (basically, I developed adult-onset ADD), but all the rest of my results are at or above normal. With reduced capacity, it's hard to just deal with all the memory-related tasks and day-to-day stuff that requires focus or motivation.
Still dragging myself along by my fingernails, but it's been rough, and unless Pain Management can help me (more roadblocks there -- they want all my neuro reports before they're willing to even book an initial consult, and my neuro is, of course, on vacation), I flinch away from thinking about the future. I'm not quite 40, and I don't think I can do 30 more years of this.
@Not Again, it sounds like you're well shut of him -- although I know that had to be a really painful process. No one wants a marriage to end (mine did, too, in part because I went from being the perky high-achieving extrovert who brought in half the household income to dealing with multiple serious health issues, even BEFORE the TN, and no longer to work . . . he never stopped being resentful about it.) I'm really grateful that my partner started dating me after I became disabled -- even though we only had a matter of months together before the TN started -- because he at least didn't act like I'd let him down by getting sickER.
I'm sorry that your daughter isn't around more -- it's easy to get caught up in day-to-day stuff when you have young kids, but it would be nice if she could bring the kids to you when you're feeling good, and to be more open to flexible plans based on your health. (Mine is in college, so she's gone for 9 months a year, but I'm glad to have her home when she's here.)
I am currently on gabapentin, but I only started taking it a couple of months ago, and the cognitive decline was at the beginning of last year. I'm actually trying to wean off the gabapentin (makes me sleep too much, but doesn't help me feel rested), but I have to wait for my neuro to get back from vacation, because she needs to prescribe me some 100mg capsules so that I can step down gradually rather than going cold turkey, which is a BAD IDEA with gabapentin.
(Part of the reason I'm worried about Pain Management is that I've had a couple of friends from my Ehlers-Danlos support group go through forced detox when their PM docs either cut them off or screwed up their prescriptions, one of whom nearly died. I currently take Lyrica, and have since 2006 or so, and if they fail to fill that prescription, I would go into withdrawal -- Lyrica has a really fast and ugly withdrawal, I've been through it once when an airline lost my bag, and I don't want to risk it happening again!)
And, yeah -- one of the reasons I'm afraid to drive (I was always a confident driver before -- not my favorite thing, but not a problem) is that I'm concerned that if an accident were to happen, even if it was completely someone else's fault, I'd be technically DUI if I'd taken any of my pain meds (even though driving in pain is much more distracting.) :/
*sympathetic hug*
Not Again said:
Oh dear...I am so sorry. My 35 y.o.niece (brother's daughter) has MS and I worry that she wil develop TN. It's one of the first things they looked for with me, but said no, I didn't have it. We are not sure where hers came from. So sorry about your mother's attitude. Some people just cannot accept factual evidence. My ex-MIL still thinks her son's alcoholism is going to be cured by his going to the gym every day and drinking coffee. Doh!! I cannot get it through her head that he has a disease and if he doesn't quit drinking soon, he is going to die within a few years. I'm glad to know you have a good support system. I am pretty much on my own here. My ex & I divorced and I moved out here to Oregon just before my TN came back. My daughter only lives 1/2 mile away, but with work, 2 kids and a hubby that travels frequently she always seems too busy to even call. We tried to reconcile after the 2nd MVD and he moved out here when he lost his job in Ohio. But when it came back in only 9 months and then the stereotactic procedure failed...he started blaming me and my pain issues for his drinking and went back to Ohio. We have been on and off & back & forth for the last 6 years. Then things came to an ugly head just 1 month ago and well....that's all she wrote! I don't drive much because of the meds I'm on. Although they don't cause me to feel "high" or sleepy, if something were to happen it would be considered a DUI. I can't take that chance and so don't venture more than a few miles from my house and then only for groceries and Dr. appts & an occasional Starbucks...lol.
You mentioned cognitive issues. Are you on gabapentin? That is one of the drugs that caused me to have severe cognitive dysfunction. I just could not think straight....lose words and thoughts, etc. The Dr. said that didn't sound like a normal listed side effect...but I've heard from so many that had the same problem. Never could even get to a therapeutic dose with it.
I've been through pain management and it wasn't too bad. minor road blocks here and there...mostly due to thei inexperience with ATN...so arm yourself well!
Peace.
Ashbet said:
Oh, Not Again, I *really* get where you're coming from -- and combining this disease with reduced mobility (I need to at least have wheelchair accessibility if I'm going to a social function -- I may need the chair unpredictably, I may not need it at all, or I may need it full-time, depending on the state of my spine/hips/ability to stand) makes it seem like I "don't want to do anything" anymore -- but if "anything" involves inaccessible locations as well as unpredictable pain and worry about driving myself alone (in case I get stranded because I can't drive back -- I *know* I'm unsafe on the road when in intense pain, it's just too distracting), then I guess I'm spending a lot of time at home :/
"Wish I could stop the world and get off" is a thought I have A LOT, too.
I've tried really hard to keep my spirits up, stay proactive, not slip into depression and inactivity, but it just seems like there are so many roadblocks in the way right now. I'm lucky that my partner and adult daughter are supportive, and while my mother is an utter horrorshow (she still thinks I'm faking it to get attention, and "teaching my daughter to be disabled" -- uh, Mom, last time I checked, we have a GENETIC DISORDER, not a lack of willpower!), she at least doesn't live with me :P
I'll run that article by my neuro -- I just had detailed sagittal imaging done and something called a "FIESTA scan", which I was joking with the tech about -- but I'm not sure whether that technology is available in my area. They redid all of my MRIs from four years ago, plus two new types of scans, because they were hoping to find a blood vessel constricting the nerve, but nothing came of it. I'd gotten my hopes up, because the doctor thought he saw a vein loop, but it apparently was ruled out by the more detailed imaging. I was really hoping for MVD, because it's my best hope for relief, to my knowledge.
But, yeah. You have my sympathy and empathy -- it's so exhausting and draining never being actually pain-free, and I've started developing cognitive issues that the neuropsych I saw for testing said were probably the result of having uncontrolled pain for so many years. He said that part of my brain was always occupied with processing the pain input, which is why my attention/focus/executive function/attention span have gone to hell (basically, I developed adult-onset ADD), but all the rest of my results are at or above normal. With reduced capacity, it's hard to just deal with all the memory-related tasks and day-to-day stuff that requires focus or motivation.
Still dragging myself along by my fingernails, but it's been rough, and unless Pain Management can help me (more roadblocks there -- they want all my neuro reports before they're willing to even book an initial consult, and my neuro is, of course, on vacation), I flinch away from thinking about the future. I'm not quite 40, and I don't think I can do 30 more years of this.
Ashbet, please read this link about my recent mvd, specifically about no compressions …
http://www.livingwithtn.org/forum/topics/7-days-post-mvd-1
I’m not pushing MVDs, as it’s not an option for everyone and Im not a doctor.
BUT I do push advocating for oneself and trusting your instincts and as you’ll read I have never had any visible compressions.
(( hugs )) Mimi
Thank you, Mimi!!
The neurosurgeon who just took detailed imaging studies said that I was not a surgery candidate, although that was because he couldn't see any compressions. My next step is to try meds through Pain Management, and if that doesn't work, I may go back to him and bring up your experience . . .
There was one thing I forgot to mention that helped recently -- I was surprised to note positive results on a 3-day acute and incapacitating TN2 pain flare when I was using a TENS unit to help relax the muscles in my neck and back, which were understandably tense due to pain and inactivity. I was at the point of being close to needing to go to the ER (which only happens a couple of times a year), but the TENS unit helped a great deal.
It's a temporary relief (seems to last for about half an hour after stopping the 30-minute treatment), but an hour of blessed relief is nothing to sneeze at!
Note: it is VERY IMPORTANT to be cautious when using TENS on the face/neck -- my PT said not to put the pads on/above the base of the skull, because you can send fairly powerful electrical impulses into your brain (he used the words "fry your brain," although I think that was probably somewhat humorous hyperbole.) So, while safe for use on the neck, don't fall victim to the temptation to try a TENS electrode on your face or head!
With this discussion I don’t think we have covered all that much considering how much TN has affected our lives.
I don’t really know that I always do DEAL with my emotions. My emotions about this journey are always in FLUX.
Yesterday I wrote about anxiety but today I’d like to mention that I sometimes feel “unreal” as in I don’t “f*#¥ing” believe that this is happening. Is this really MY stinging burning buzzing stabbing head? Is this really true?
Along with the pain I am suffering severe financial and professional loss. In a moment by moment kind of way I can “deal” with this aspect of my life by the drawing practice I mentioned above, being with my friends and children, playing the piano, whatever. But when I step back to wonder about the BIG PICTURE business, I just feel such a vacuum of fear, sucking me away. I really don’t know how to deal with that. The little daily things in my life I can see, but the future is, well, something so scary I don’t even have a word for it.
I hate the unpredictability of it too.
I recently had the worst series of attacks I’ve ever had with my TN. I had multiple and prolonged electric shocks, while I was driving home from work and while I was trying to get more Tegratol into me. (I suffer over two zones, the upper and side of my face.)
Since then I haven’t been near the car or work (I work as a post person the the UK). Although i did attempt to go into work the following day in a very dizzy state thanks to overdosing on the Tegs. My boss wouldn’t let me out of the building to work but I did drive to the Doctors in this state, i couldnt see straight but hey I was in no pain. I am currently on a cocktail of additional drugs but only 900mg of Tegratol. I am still wobbly but ok.
I have an appointment (my first) to see a neurologist next week but I am still a bit unsure about my options. At the moment I am of the opinion that he can cut out what wants to hell with the consequences as long as I am in no pain.
I don’t know how good an option surgery is but I struggle emotionally,as I’m sure most do, knowing you are going to dependant on drugs for the rest of your life and worrying if your system will get used to the drugs to the point you will be increasing it constantly. I hate pain! My love goes out to you all.