I'm finding less variation between good days and bad now. (They're all bad) Ok, not really...they're all...medium. The highs and lows are not as high, or as low.
When I was charting my pain a few months ago, well, the bad days were like skiing a double black diamond trail...now it's more like a blue run. Occasionally I'll even get an easy green and marvel at my good luck! And, by occasionally, I mean maybe once every 12 days. I attribute this improvement to the Lyrica.
Lyrica is helping to dull the pain in my face/upper teeth. I was RX'd 150mg/day, but since I am managing to cope at 100mg, I am holding there, hoping to do as little systemic damage to my internal organs as possible. I do notice blurred vision and vivid dreams (a known side effect of pregabalin and gabapentin), but consider those fairly minor side effects.
I don't know when I will feel like I can stop the meds. Not any time soon. Having been to all forms of medical experts and them all saying they can't find anything in my xrays, MRI's, etc, at this point I've resigned myself to just keep taking B vitamins, and hoping the nerve continues to repair itself in time.
I have had temporary crowns over my root canals for 6 months now, too scared to go back in and get permanent ones. No one's coming near these teeth. I haven't had a cleaning in a year, so I'm coming due for that, too. Yeah. Fat chance.
I feel pretty normal and not drugged. My heart is no longer racing nor do I feel faint like on the Pamelor (Nortriptilene).I'm not falling asleep sitting up as much. (And they think texting and driving is bad? Hah! Should see how it feels to drive on some of the drugs I've been prescribed. Not safe!!)
The tongue feels rugburned in a wide area most days; occassionally on a good/quiet day, it's just on the left tip. Klonopin puts the fire out, and, since this is an off-label use of an anxiety drug, I get the double benefit of reducing stress. Pain = stress = anxiety = more pain = more anxiety, and so the cycle goes. Sucking on a Klonopin for a minute, then spitting out, helps a lot, though it does make me sleepy. Wish I could suck on them all day, but I can't. I'd be like Rumplestilskin!
Has anyone found that any foods in particular help or hurt the burning?
Tuesday, September 28, 2010
Monday, September 13, 2010
Surgical options explored... and ignored
On NPR this morning they did a story about a blind man who'd had surgery to restore his eyesight. He was born sighted, but lost his site in a chemical accident at age 3. The result was, his brain was so trained NOT to see images, after 40 years, that even though the surgery was considered a success, and has worked for others... he still can't see.
Retain the brain. That's the key. But, his doctors didn't anticipate this, nor know how to resolve it.
That's what concerns me about those of us who've been living with this a long time. We have to stop the pain cycle to train the brain that pain is not normal. So if that means having to be on meds, so be it.
I'm hoping that this is the key to teaching my brain that my own body's signals are false, or at least to overlook them.
Living on Lyrica and Klonopin, with the occasional hydrocodone, is not a way I ever imagined my life. Ever. I used to avoid even taking Advil - now, I just laugh at them, (aren't they cute?) they're about as effective as a Pez would be to me.
I've heard about surgeries, laser treatments, etc... but every doctor since Pogrel says the results are poor and they don't recommend it for me. It is only recommended for those who have complete numbness. Even then, those folks might end up like me, with hypersensitivity and pain, once the nerve is reconstructed and sending signals again.
I have requested from my doctors thin slice MRI's, MRA's, etc... and been told there's really no point. I'd have to keep searching for new Neurologists to find someone to order and read one, and considering how expensive it is, even with insurance, that's just not going to happen. When I was originally misdiagnosed with trigeminal neuralgia, here are some of the treatments I'd come across; some of these are also being talked about for lingual and alveolar nerve injuries. But I keep being told "no".
I hope I'm not still blogging about this when I'm old and gray.
Retain the brain. That's the key. But, his doctors didn't anticipate this, nor know how to resolve it.
That's what concerns me about those of us who've been living with this a long time. We have to stop the pain cycle to train the brain that pain is not normal. So if that means having to be on meds, so be it.
I'm hoping that this is the key to teaching my brain that my own body's signals are false, or at least to overlook them.
Living on Lyrica and Klonopin, with the occasional hydrocodone, is not a way I ever imagined my life. Ever. I used to avoid even taking Advil - now, I just laugh at them, (aren't they cute?) they're about as effective as a Pez would be to me.
I've heard about surgeries, laser treatments, etc... but every doctor since Pogrel says the results are poor and they don't recommend it for me. It is only recommended for those who have complete numbness. Even then, those folks might end up like me, with hypersensitivity and pain, once the nerve is reconstructed and sending signals again.
I have requested from my doctors thin slice MRI's, MRA's, etc... and been told there's really no point. I'd have to keep searching for new Neurologists to find someone to order and read one, and considering how expensive it is, even with insurance, that's just not going to happen. When I was originally misdiagnosed with trigeminal neuralgia, here are some of the treatments I'd come across; some of these are also being talked about for lingual and alveolar nerve injuries. But I keep being told "no".
- Microvascular decompression - this is brain surgery to release pressure on nerve or blood vessels, they often insert a teflon pad to relieve compression
- Gamma knife - less dangerous, not an actual knife. Gamma rays are used to shrink the blood vessels surrounding the nerve. Biggest problem is probably that it's not always effective.
- facial nerve blocks - seem to give temporary relief, most insurance won't cover
- novacaine at ganglion nerve - temporary
- radiofrequency or glycerin rhizotomy- I think they identify nerves sending pain signals and cut them. Interesting thing here is that it targets nerves which, due to not receiving GABA, generate unusual electrical activity. Since I'm taking pregabalin, anything with GABA gets my attention; however, having my nerves permanently severed does not.
- Motor Cortex Stimulation- they put electrodes in your head
I hope I'm not still blogging about this when I'm old and gray.
Friday, September 10, 2010
The effect of emotions on pain
An observation. Yesterday was one of those rare days when I was so happy I didn't even notice any pain, though I was talking almost non-stop. I met with an old flame for lunch, and we had such a great time, I experienced a sense of euphoria and adrenaline for 4 hours straight as we ate and later walked around talking. However, not long after I left that environment, the pain resumed it's regularly scheduled annoyance.
I've been in happy moods before, but the pain still broke through. I usually have to put some medicine in my mouth to dull the burning, or can't completely smile on my left side because it aches. But this time - not at all.
Why do I feel it during the mundane, day to day stuff like working, driving, and caring for children, but not when my body and mind are chemically elated to a degree that overrides the pain and- most of all- can this scientifically cure us of our pain somehow?
So here is my question for those who may be in the medical field: how do we produce this artificially? Medical marijuana? I have no clue. I can't even pretend to be a scientist. I am merely pondering questions here since the wonderful world of the Internet allows me to do so with no one stopping me.
I also notice when crying the pain to be worse. But yesterday, I had a moment where I got pretty weepy as we shared some memories that weren't so happy (close relatives dying) but even then, no pain. That "euphoric" feeling still dominated over any other. If I could bottle it, trust me, I would!!
I imagine that's why they use antidepressants for nerve pain. We aren't necessarily depressed, but creating that little "high" just enough to better our mood a little, somehow dampens the pain. Doesn't eliminate it, just hides it for awhile.
Scientists are not sure how Pregabalin (Lyrica) works, other than it stabilizes electrical activity in the brain, keeping it from becoming overstimulated. Funny thing is, my brain was clearly very stimulated yesterday during our little nostalgia trip - trying to recall events and people, and the excitement of seeing someone you hadn't seen since you're a kid. Possibly even falling in love again. But love alone can't be enough to stop pain, lots of people are in love but still grapple with pain every day.
Still looking for that magic answer that will put a stop to the pain and let me go back to living life normally again.
I've been in happy moods before, but the pain still broke through. I usually have to put some medicine in my mouth to dull the burning, or can't completely smile on my left side because it aches. But this time - not at all.
Why do I feel it during the mundane, day to day stuff like working, driving, and caring for children, but not when my body and mind are chemically elated to a degree that overrides the pain and- most of all- can this scientifically cure us of our pain somehow?
So here is my question for those who may be in the medical field: how do we produce this artificially? Medical marijuana? I have no clue. I can't even pretend to be a scientist. I am merely pondering questions here since the wonderful world of the Internet allows me to do so with no one stopping me.
I also notice when crying the pain to be worse. But yesterday, I had a moment where I got pretty weepy as we shared some memories that weren't so happy (close relatives dying) but even then, no pain. That "euphoric" feeling still dominated over any other. If I could bottle it, trust me, I would!!
I imagine that's why they use antidepressants for nerve pain. We aren't necessarily depressed, but creating that little "high" just enough to better our mood a little, somehow dampens the pain. Doesn't eliminate it, just hides it for awhile.
Scientists are not sure how Pregabalin (Lyrica) works, other than it stabilizes electrical activity in the brain, keeping it from becoming overstimulated. Funny thing is, my brain was clearly very stimulated yesterday during our little nostalgia trip - trying to recall events and people, and the excitement of seeing someone you hadn't seen since you're a kid. Possibly even falling in love again. But love alone can't be enough to stop pain, lots of people are in love but still grapple with pain every day.
Still looking for that magic answer that will put a stop to the pain and let me go back to living life normally again.
Saturday, September 4, 2010
Getting off all meds was an epic failure :(
I've seen so many doctors and no one has had the perfect answer for me, so I'm learning as I go. I really have had to experiment. After a few days without Neurontin, the pain was just too much, very distracting and makes me not a nice person.
Since I am in this apparently for the long haul, I really have to find something to help cope with the pain.
So this week:
1. Eliminated Neurontin as Doc recommended. Hmmm pain seems worse.
2. Decided to give Lyrica another shot, but I realized the trick is to take the 50 mg at bedtime, so I don't get that loopy thing where I can't drive, etc... then I take 25 mg pills in the daytime and am titrating up. You really do build a tolerance this way. Recommended dose is 150 mg/day; I'm at 100 now.
3. Because they are capsules, I had to figure out on my own how to manage the dosing schedule, and ask my Dr for two Rxs: one for 25 mg and one for 50 mg. So far, I do think I'm feeling some reduced pain in my teeth and face. (I still have to keep a Klonopin on my tongue when the burning gets to be too much, maybe 1-2x/day.)
Downsides: Lyrica is expensive - over $2/pill with insurance and there's no generic; fortunately I was given samples at the Dr's office that will last me about a month. I'm still hoping by the time I reach a year the pain will be reduced to the point I no longer need this. But no one can predict.
I've read bad things about Lyrica, but then again have read bad things about every medication, including Neurontin. I'm noticing daily headaches lately - not bad ones - not like migraines or anything. Can't say yet if it is related to the Lyrica.
A physician friend tells me he has patients who love Lyrica, and some who hate it. He tries Neurontin first, though thinks Lyrica probably works better - but it's still new on the market, no one really know a lot about it. I'm just hoping this new med continues to help make the pain tolerable without me growing a third arm or something. ;-) His opinion on Lyrica is there are risks and benefits with every medication, you just have to decide if the benefits outweigh the risks.
Hope everyone is doing well and enjoying the holiday weekend...I am spending it with family, which is always a great distraction.
Update - the headaches are gone, and so is the rain we've been having - probably more related to weather than Lyrica. The tongue still burns as the day wears on, but if I could just keep the normal tongue of mornings all through the day I'd be soooo happy. What is the secret?
Since I am in this apparently for the long haul, I really have to find something to help cope with the pain.
So this week:
1. Eliminated Neurontin as Doc recommended. Hmmm pain seems worse.
2. Decided to give Lyrica another shot, but I realized the trick is to take the 50 mg at bedtime, so I don't get that loopy thing where I can't drive, etc... then I take 25 mg pills in the daytime and am titrating up. You really do build a tolerance this way. Recommended dose is 150 mg/day; I'm at 100 now.
3. Because they are capsules, I had to figure out on my own how to manage the dosing schedule, and ask my Dr for two Rxs: one for 25 mg and one for 50 mg. So far, I do think I'm feeling some reduced pain in my teeth and face. (I still have to keep a Klonopin on my tongue when the burning gets to be too much, maybe 1-2x/day.)
Downsides: Lyrica is expensive - over $2/pill with insurance and there's no generic; fortunately I was given samples at the Dr's office that will last me about a month. I'm still hoping by the time I reach a year the pain will be reduced to the point I no longer need this. But no one can predict.
I've read bad things about Lyrica, but then again have read bad things about every medication, including Neurontin. I'm noticing daily headaches lately - not bad ones - not like migraines or anything. Can't say yet if it is related to the Lyrica.
A physician friend tells me he has patients who love Lyrica, and some who hate it. He tries Neurontin first, though thinks Lyrica probably works better - but it's still new on the market, no one really know a lot about it. I'm just hoping this new med continues to help make the pain tolerable without me growing a third arm or something. ;-) His opinion on Lyrica is there are risks and benefits with every medication, you just have to decide if the benefits outweigh the risks.
Hope everyone is doing well and enjoying the holiday weekend...I am spending it with family, which is always a great distraction.
Update - the headaches are gone, and so is the rain we've been having - probably more related to weather than Lyrica. The tongue still burns as the day wears on, but if I could just keep the normal tongue of mornings all through the day I'd be soooo happy. What is the secret?
Monday, August 30, 2010
Now it's your turn
This blog is one of the few places I can talk about my injury, and have been doing so for 4 months now. It may seem that all I do is discuss meds, pain, and dentistry all day long, but in real life, actually, I rarely do. Do you?
In fact, I haven't even given my family the url to this blog. I can't discuss my pain at work or risk losing my (temp) job. I can't tell someone I don't know well (like a date), "hey guess what, I'm suffering a long-term injury and am almost always in pain!". I don't want to be a burden to anyone or seem like a freak. They've all got enough going on in their lives. Some are less sympathetic than others. They just don't know how to deal with it.
Everyone just assumes I'm doing fine now, because I've stopped talking about it so much, but this is still a daily issue for me. Every frickin' day. I don't want to sound like a whiner - I can't stand people who complain all the time - and really, how many times can they hear the same thing when they don't know how to respond or make it better?
So, I don't talk to anyone about it, really, except for the readers of this blog. So I want to thank you for reading, I want to encourage you to share your stories, because we all need an outlet or will slowly go crazy. Suffering in silence is no way to live; not for me, anyway.
Maybe you'd just like to get it off you chest how unfair it is that this happened to you, or ask a question, or maybe someone can help with a symptom you're suffering, or vice-versa. This is not a one-way street. Please add comment and include few details of how your injury happened and WHEN, and what you are going through now. Your age, country/state/province, would be helpful, too. There are different treatments and levels of understanding in the medical communities elsewhere. I know that here, in Florida, it's like living in a virtual medical knowledge desert.
Are you working? Are you medicated? Are you completely healed? Are you married/who is your support network? Have you been back to the dentist? Let me know.
If you click on "About Me" off to the right of this section, you'll see more of my background details. This might be a good place to comment and add "about you". Or you can just comment below this post. If you are concerned about revealing your identity (for reasons mentioned above), you can always post as Anonymous.
I also need to attract more readers to this blog...anyone with blogging experience who has tips on how to do that, please advise. There are more people suffering out there, and the more we know, the better chance we have of finding a solution for all of us.
Be well. Have a great day. Know that you can always come here to blow off steam and no one will fault you for it or think you're a "whiner" ;-)
Jane
In fact, I haven't even given my family the url to this blog. I can't discuss my pain at work or risk losing my (temp) job. I can't tell someone I don't know well (like a date), "hey guess what, I'm suffering a long-term injury and am almost always in pain!". I don't want to be a burden to anyone or seem like a freak. They've all got enough going on in their lives. Some are less sympathetic than others. They just don't know how to deal with it.
Everyone just assumes I'm doing fine now, because I've stopped talking about it so much, but this is still a daily issue for me. Every frickin' day. I don't want to sound like a whiner - I can't stand people who complain all the time - and really, how many times can they hear the same thing when they don't know how to respond or make it better?
So, I don't talk to anyone about it, really, except for the readers of this blog. So I want to thank you for reading, I want to encourage you to share your stories, because we all need an outlet or will slowly go crazy. Suffering in silence is no way to live; not for me, anyway.
Maybe you'd just like to get it off you chest how unfair it is that this happened to you, or ask a question, or maybe someone can help with a symptom you're suffering, or vice-versa. This is not a one-way street. Please add comment and include few details of how your injury happened and WHEN, and what you are going through now. Your age, country/state/province, would be helpful, too. There are different treatments and levels of understanding in the medical communities elsewhere. I know that here, in Florida, it's like living in a virtual medical knowledge desert.
Are you working? Are you medicated? Are you completely healed? Are you married/who is your support network? Have you been back to the dentist? Let me know.
If you click on "About Me" off to the right of this section, you'll see more of my background details. This might be a good place to comment and add "about you". Or you can just comment below this post. If you are concerned about revealing your identity (for reasons mentioned above), you can always post as Anonymous.
I also need to attract more readers to this blog...anyone with blogging experience who has tips on how to do that, please advise. There are more people suffering out there, and the more we know, the better chance we have of finding a solution for all of us.
Be well. Have a great day. Know that you can always come here to blow off steam and no one will fault you for it or think you're a "whiner" ;-)
Jane
Saturday, August 28, 2010
The pain roller coaster
I have never been a fan of roller coasters, though I love amusement parks in general. Well I'm at the top of the pain cycle roller coaster vs. the bottom this week, and let's just say I'm not raising my arms with glee. So far the meds experiment is a bit of a disappointment- I've weaned down to 300 mg gabapentin a day (basically nothing) and been on anti-inflammatory Mobic 3 days (think: Naproxen, without the nausea)- I'm hurting more since giving up Neruontin after some pretty quiet days prior, but it could just be coincidence.
I'll give it a few more days, when I'm due for some more quiet ones; if they don't come, and the pain continues to build, I'll ramp up the Neurontin again. I was Rx'ed hydrocodone for pain but I take it by half in such small doses, it just gives a little relief and good mood for maybe 2 hrs at at time. I still have to turn to ever-expanding assorted varieties of gums, lozenges, dry mouthwash and, ultimately sucking on Klonopin, to put out the fire in my mouth all day long.
Something unusual and perhaps worth mentioning: the way the pain feels now vs. a few months ago differs. Earlier in this illness, pain jumped around more from one place to another, (ear, throat, head, teeth) now it's kind of all over. The sore cheek/buccal muscle/root canal pain, achey front teeth, sensitivity to sound, touchy temple, and burning tongue seem to now travel together and be related, hurting on the same days. Just milder all over and worse all over, depending on the time of day and the day in general.
At really bad moments I still apply lidocaine/oragel topically, down to 2-3x/wk from 1-2x/DAY, when I could barely speak without slurring like a drunk person due to the razor-like pain in my tongue. (So there is hope for you newbies!)
Unfortunately, after this amount of time, everything I've read indicates that some level of pain is going to be permanent for me. We'll see at the one year mark in December; it's incrementally less now (if you count increments in milenniums) but I haven't given up hope the trend continues.
The megadosing on Vitamin C has been tough because I need to mix the powder with orange juice with is very acidic for my tongue. So I've been sporadic in that. I can now tolerate the coldness of smoothies, so I try and get extra vitamins from my local Jamba Juice store when possible.
I have spoken with several Neurologists who were recommended by friends; problem is, no one has the foggiest what I am talking about with the Lingual Nerve. With the thousands of nerves in our bodies, seems med schools overlook that one. You'd think someone would come up with a continuing ed class to cover this problem.
(Trying to figure out how to add a site traffic checker but the widget failed. Trying again below. For anyone not bored enough to have left already!)
I'll give it a few more days, when I'm due for some more quiet ones; if they don't come, and the pain continues to build, I'll ramp up the Neurontin again. I was Rx'ed hydrocodone for pain but I take it by half in such small doses, it just gives a little relief and good mood for maybe 2 hrs at at time. I still have to turn to ever-expanding assorted varieties of gums, lozenges, dry mouthwash and, ultimately sucking on Klonopin, to put out the fire in my mouth all day long.
Something unusual and perhaps worth mentioning: the way the pain feels now vs. a few months ago differs. Earlier in this illness, pain jumped around more from one place to another, (ear, throat, head, teeth) now it's kind of all over. The sore cheek/buccal muscle/root canal pain, achey front teeth, sensitivity to sound, touchy temple, and burning tongue seem to now travel together and be related, hurting on the same days. Just milder all over and worse all over, depending on the time of day and the day in general.
At really bad moments I still apply lidocaine/oragel topically, down to 2-3x/wk from 1-2x/DAY, when I could barely speak without slurring like a drunk person due to the razor-like pain in my tongue. (So there is hope for you newbies!)
Unfortunately, after this amount of time, everything I've read indicates that some level of pain is going to be permanent for me. We'll see at the one year mark in December; it's incrementally less now (if you count increments in milenniums) but I haven't given up hope the trend continues.
The megadosing on Vitamin C has been tough because I need to mix the powder with orange juice with is very acidic for my tongue. So I've been sporadic in that. I can now tolerate the coldness of smoothies, so I try and get extra vitamins from my local Jamba Juice store when possible.
I have spoken with several Neurologists who were recommended by friends; problem is, no one has the foggiest what I am talking about with the Lingual Nerve. With the thousands of nerves in our bodies, seems med schools overlook that one. You'd think someone would come up with a continuing ed class to cover this problem.
(Trying to figure out how to add a site traffic checker but the widget failed. Trying again below. For anyone not bored enough to have left already!)
Saturday, August 21, 2010
Where does it hurt?
Curious to know where everyone else feels their pain - the same, or different area (Kritty mentioned the throat). For me, pain has is far worse in the central part of the trigeminal nerve, the maxillary branch (deep in the nerves of the upper teeth and extending into temple), than another other branch, with the addition of the burning tongue (lingual nerve) on the left side.
I feel like kind of like I've been hit just below my left cheek with an aluminum bat, and they stitched me up, but the bruising inside never went away. Random online research makes it sound kind of like the pain in my cheek is NICO, (Neuralgia-inducing Cavitational Osteonecrosis) caused by long-term infection and root canals in the area, or is this normal pain that accompanies everyone's lingual nerve injury? The dental docs just scratch their heads and say they don't see anything.
I'm supposed to return to the orofacial pain clinic for the handheld wand up against my upper gum where the pain is worst - it emits a tingling sensation which can be adjusted so that it's effective without being painful. A few of these treatments are supposed to help - I'm told it's helped others. It did seem to reduce pain for a few days following the original session. Anyone know anything about this treatment? It's $100 a visit - that's like $10/minute!
This is, again, being done at the only teaching hospital for Dentistry in my area. I have found no place else that understands my situation - I may as well be speaking Russian.
I've been doing more research on meds, as I am going to see the pain doc this week and the gabapentin just ain't cuttin' it at 500mg/day. Another $165 for the pain doc visit. Ka-ching.
The choice seems to be antidepressant or antiseizure.
Lyrica
Topamax
Elavil
Cymbalta
Amitryptilene...
the list seems endless, all with various side effects.
What has/hasn't worked for YOU?
I feel like kind of like I've been hit just below my left cheek with an aluminum bat, and they stitched me up, but the bruising inside never went away. Random online research makes it sound kind of like the pain in my cheek is NICO, (Neuralgia-inducing Cavitational Osteonecrosis) caused by long-term infection and root canals in the area, or is this normal pain that accompanies everyone's lingual nerve injury? The dental docs just scratch their heads and say they don't see anything.
I'm supposed to return to the orofacial pain clinic for the handheld wand up against my upper gum where the pain is worst - it emits a tingling sensation which can be adjusted so that it's effective without being painful. A few of these treatments are supposed to help - I'm told it's helped others. It did seem to reduce pain for a few days following the original session. Anyone know anything about this treatment? It's $100 a visit - that's like $10/minute!
This is, again, being done at the only teaching hospital for Dentistry in my area. I have found no place else that understands my situation - I may as well be speaking Russian.
I've been doing more research on meds, as I am going to see the pain doc this week and the gabapentin just ain't cuttin' it at 500mg/day. Another $165 for the pain doc visit. Ka-ching.
The choice seems to be antidepressant or antiseizure.
Lyrica
Topamax
Elavil
Cymbalta
Amitryptilene...
the list seems endless, all with various side effects.
What has/hasn't worked for YOU?
Tuesday, August 17, 2010
Response
In response to Anonymous who replied to my previous post re: Pepper, etc., (I'm still having blogger problems, it wipes out any comment I try to post, yet lets me create regular posts. Bizarre. And very infuriating.)
Injury occurred prior to RCs when injection hit lingual nerve during fillings procedure; but having 2 RC's on same side soon after probably further irritated things. The area of the root canals is exactly where I still have the most pain (other than burning tongue) so your overfill theory may lead to something...what is overfill, exactly? How would I know if I had it and it was pressing on a nerve?
I have not found any practitioner who has any familiarity with my oral pain issue, other than the guy who I'm seeing that insists that Neurontin is the way to go, how is it known not to help oral pain? I'd be interested in seeing that research! God knows I don't need any more more drugs that don't even help. He originally had me on Nortriptiline which was a nightmare for me
Thanks for your input - tell me more!***********************
IN ANSWER TO YOUR RESPONSE - SINCE I CANNOT POST A #&*%ING COMMENT -
So if Neurontin x3 didn't work for you, what does? Are you, like many, finding relief with Topamax?
I do think Lyrica could help, it just scares me. I's tough enough getting through a workday already.
I've seen 3 neurologists and not one has any other recommendation. I feel like they are so used to deal with elderly here with diabetic neuropathy (like in their feet) that Neruontin is just standard.
However, the guy I'm seeing is at a teaching university, which should be cutting edge.
My original injection was shocking in that it felt very deep and I could feel cold liquid running into me. Most injections barely scratch the surface, more like a pin prick- uncomfortable, but not big deal - this was very different. I complained to the dentist, he just shrugged it off, like I was a cry baby.
Injury occurred prior to RCs when injection hit lingual nerve during fillings procedure; but having 2 RC's on same side soon after probably further irritated things. The area of the root canals is exactly where I still have the most pain (other than burning tongue) so your overfill theory may lead to something...what is overfill, exactly? How would I know if I had it and it was pressing on a nerve?
I have not found any practitioner who has any familiarity with my oral pain issue, other than the guy who I'm seeing that insists that Neurontin is the way to go, how is it known not to help oral pain? I'd be interested in seeing that research! God knows I don't need any more more drugs that don't even help. He originally had me on Nortriptiline which was a nightmare for me
Thanks for your input - tell me more!***********************
IN ANSWER TO YOUR RESPONSE - SINCE I CANNOT POST A #&*%ING COMMENT -
So if Neurontin x3 didn't work for you, what does? Are you, like many, finding relief with Topamax?
I do think Lyrica could help, it just scares me. I's tough enough getting through a workday already.
I've seen 3 neurologists and not one has any other recommendation. I feel like they are so used to deal with elderly here with diabetic neuropathy (like in their feet) that Neruontin is just standard.
However, the guy I'm seeing is at a teaching university, which should be cutting edge.
My original injection was shocking in that it felt very deep and I could feel cold liquid running into me. Most injections barely scratch the surface, more like a pin prick- uncomfortable, but not big deal - this was very different. I complained to the dentist, he just shrugged it off, like I was a cry baby.
Monday, August 16, 2010
Pepper & more - Kev are you still out there?
Cayenne Pepper theory
I tried to ask Kev how brushing his tongue with cayenne pepper worked out, but his blog will no longer allow me to post comments. (I thought maybe the problem was on my side, but have tried on 2 different computers - maybe he's chosen to no longer accept comments, as there are no comments from anyone else, either.)
The reason I bring this up is that I came down with a very sore throat this week - mind you I haven't had a cold in 3 years but have been run down lately - and when I read online about magic cures for a sore throat, guess what they mentioned? Gargling with cayenne pepper. Hmmm.
I didn't even like spicy foods much before I got this injury, and now it's almost unthinkable. So all this talk of pepper scares me. But does it really work? I'd give anything to stop the BURNING TONGUE, as I'm sure most of you would too.
The pain all over
Regarding the "spread" of the pain, I find that I'm hypersensitive throughout the entire trigeminal branch now, whereas in the early days of this injury the pain seemed to "jump around" more and change each day. Even if I scratch an itch on my cheek or remove eye makeup, I feel pain underneath. It's like I've got a layer of pain under everything - that's the nerves, I guess.
I no longer take any anti-inflammatories and wonder if I should? Clearly, the entire area is still not settled. Someone told me I need to get my 2 root canals capped, because until I do, I'll still feel nerve pain through there...really? I thought the nerves in the teeth were removed and the crowns were just to protect them because root canals weaken the teeth, and you don't want to lose them altogether. Anyone know?
I do see a marked difference when I first wake up in a quiet tongue, whether in the morning or from a nap - the burning is always less then. I have actually begun napping in my car during the workday because A. I'm freakin' exhausted and medicated and B. it helps with the pain. Just one more way people are going to start thinking I really am insane...if only they knew the pain I was silently enduring...
Now up to 500mg gabapentin per day (2 morning, 2 night 1 midday). I've gained some weight and feel hungry all the time; just a heads up for those of you who struggle with weight gain. Try to keep fruit and proteins around vs. chips and candy, because you WILL be hungry.
I don't get the massive headaches I once did - that was Hell. But I also don't feel much improvement since I hit about 7 months and I am still always looking for ways to avoid becoming a "lifer" with this pain. I have a new boyfriend, and he keep the music so loud in his car I can't stand it. I'm sure he thinks I'm very strange that noise bothers me so much. I haven't yet told him I'm damaged goods - suffering from a longterm injury that may never heal. That's sexy, huh?
I can carefully sleep on my left side now, but if anyone hugs me on the left side, or touches anywhere from my left side of my chin to the left forehead, I can't help wincing (which isn't very nice for the person nice enough to show affection!). My incredible, loving, happy children know to hug mommy on the RIGHT side only! They are literally the oxygen that keeps me surviving. I'm sending one off to college today and you may as well take my right arm - that's how much I'll miss her. And she's only going 1 hour from home! (tears)
Reality check
At the same time, while I whine about my suffering, last night I went to dinner (which I can mostly now do if it's not crazy loud) and they wheeled in a girl on a breathing tube. That same day, I stood in line at Walmart worrying about money, the folks in front of me had to put back 5 items so they could just afford diapers. A friend just found out he has cancer somewhere in his abdomen. This is the kind of stuff that kicks me in the ass about feeling too sorry for myself. I hope it helps you, too.
Comments?
I tried to ask Kev how brushing his tongue with cayenne pepper worked out, but his blog will no longer allow me to post comments. (I thought maybe the problem was on my side, but have tried on 2 different computers - maybe he's chosen to no longer accept comments, as there are no comments from anyone else, either.)
The reason I bring this up is that I came down with a very sore throat this week - mind you I haven't had a cold in 3 years but have been run down lately - and when I read online about magic cures for a sore throat, guess what they mentioned? Gargling with cayenne pepper. Hmmm.
I didn't even like spicy foods much before I got this injury, and now it's almost unthinkable. So all this talk of pepper scares me. But does it really work? I'd give anything to stop the BURNING TONGUE, as I'm sure most of you would too.
The pain all over
Regarding the "spread" of the pain, I find that I'm hypersensitive throughout the entire trigeminal branch now, whereas in the early days of this injury the pain seemed to "jump around" more and change each day. Even if I scratch an itch on my cheek or remove eye makeup, I feel pain underneath. It's like I've got a layer of pain under everything - that's the nerves, I guess.
I no longer take any anti-inflammatories and wonder if I should? Clearly, the entire area is still not settled. Someone told me I need to get my 2 root canals capped, because until I do, I'll still feel nerve pain through there...really? I thought the nerves in the teeth were removed and the crowns were just to protect them because root canals weaken the teeth, and you don't want to lose them altogether. Anyone know?
I do see a marked difference when I first wake up in a quiet tongue, whether in the morning or from a nap - the burning is always less then. I have actually begun napping in my car during the workday because A. I'm freakin' exhausted and medicated and B. it helps with the pain. Just one more way people are going to start thinking I really am insane...if only they knew the pain I was silently enduring...
Now up to 500mg gabapentin per day (2 morning, 2 night 1 midday). I've gained some weight and feel hungry all the time; just a heads up for those of you who struggle with weight gain. Try to keep fruit and proteins around vs. chips and candy, because you WILL be hungry.
I don't get the massive headaches I once did - that was Hell. But I also don't feel much improvement since I hit about 7 months and I am still always looking for ways to avoid becoming a "lifer" with this pain. I have a new boyfriend, and he keep the music so loud in his car I can't stand it. I'm sure he thinks I'm very strange that noise bothers me so much. I haven't yet told him I'm damaged goods - suffering from a longterm injury that may never heal. That's sexy, huh?
I can carefully sleep on my left side now, but if anyone hugs me on the left side, or touches anywhere from my left side of my chin to the left forehead, I can't help wincing (which isn't very nice for the person nice enough to show affection!). My incredible, loving, happy children know to hug mommy on the RIGHT side only! They are literally the oxygen that keeps me surviving. I'm sending one off to college today and you may as well take my right arm - that's how much I'll miss her. And she's only going 1 hour from home! (tears)
Reality check
At the same time, while I whine about my suffering, last night I went to dinner (which I can mostly now do if it's not crazy loud) and they wheeled in a girl on a breathing tube. That same day, I stood in line at Walmart worrying about money, the folks in front of me had to put back 5 items so they could just afford diapers. A friend just found out he has cancer somewhere in his abdomen. This is the kind of stuff that kicks me in the ass about feeling too sorry for myself. I hope it helps you, too.
Comments?
Tuesday, August 10, 2010
Back online with updates and greetings
Hello all and thank you for your patience as I've grappled with my blogger issues. I still can't add comments to posts, but now can post original posts. Crazy, I know.
Dear Kev- how'd it go with the pepper treatment? Any luck?
Dear Anonymous @ 11 weeks - I hear ya. I feel at this point as though I've plateaued and there won't be any more improvement after 8 months.
But you are still early on, relatively, in your healing after 11 weeks, and could still get slightly better. In all honesty I don't know if you'll ever be completely normal the way you used to be. I feel I won't.
re: depression, we've all been there; I hope following this blog helps to lighten your mood, there are some great people here with wonderful tips and suggestions. Hang in there - you are not alone! We get it!
I am still hoping someone will find this blog and post that they are *completely recovered* - how long it took, and what steps they took to get there. Meanwhile, if we keep putting our collective heads together, maybe we'll figure it out on our own.
Saw the neuro; again said topamax is really for migraines and wants to just increase the dosage of gabapentin and continue the clonazepam for burning. Result has been more sleepiness (though I can function) and still have burning. Super nice guy, but geez, is that the best he can do?!
He also used the TENS unit on my gums and I must say I do feel some relief in my cheek, though my teeth still ache and tongue always burns. He wants me to do a series of these treatments in next few weeks (not covered by insurance of course). I mentioned kritty's remark that seemed to spread the pain and make things worse, he just said "that shouldn't happen".
Dear Kristin - When landing in Chicago I was fine once on the ground. When back in Florida I had no landing trouble at all, really. Maybe it's the thin air we have at sea level.
Dear kritty- if you like write me at smr2121@excite.com for private messaging - your input is invaluable. I could use a referral to someone close to me. I'm obviously not getting the ultimate care available at present.
How's everyone doing this week? I am popping those lozenges and gum like M'n'Ms to try and douse the flames in my mouth.
Dear Kev- how'd it go with the pepper treatment? Any luck?
Dear Anonymous @ 11 weeks - I hear ya. I feel at this point as though I've plateaued and there won't be any more improvement after 8 months.
But you are still early on, relatively, in your healing after 11 weeks, and could still get slightly better. In all honesty I don't know if you'll ever be completely normal the way you used to be. I feel I won't.
re: depression, we've all been there; I hope following this blog helps to lighten your mood, there are some great people here with wonderful tips and suggestions. Hang in there - you are not alone! We get it!
I am still hoping someone will find this blog and post that they are *completely recovered* - how long it took, and what steps they took to get there. Meanwhile, if we keep putting our collective heads together, maybe we'll figure it out on our own.
Saw the neuro; again said topamax is really for migraines and wants to just increase the dosage of gabapentin and continue the clonazepam for burning. Result has been more sleepiness (though I can function) and still have burning.
He also used the TENS unit on my gums and I must say I do feel some relief in my cheek, though my teeth still ache and tongue always burns. He wants me to do a series of these treatments in next few weeks (not covered by insurance of course). I mentioned kritty's remark that seemed to spread the pain and make things worse, he just said "that shouldn't happen".
Dear Kristin - When landing in Chicago I was fine once on the ground. When back in Florida I had no landing trouble at all, really. Maybe it's the thin air we have at sea level.
Dear kritty- if you like write me at smr2121@excite.com for private messaging - your input is invaluable. I could use a referral to someone close to me. I'm obviously not getting the ultimate care available at present.
How's everyone doing this week? I am popping those lozenges and gum like M'n'Ms to try and douse the flames in my mouth.
Friday, July 23, 2010
Unpredictability
Well, I've had some good days recently (300 mg daily of Neurontin may be to credit for that) but the bad ones still occur, and the feeling of powerlessness really gets to me - it doesn't matter what important event I have for that day, I can't control when the pain will hit. This injury doesn't care if it is someone's birthday party, or an important job interview, or even my daughter's graduation. It just strikes without warning, and I can't will it away. In fact, it ironically seems to ramp up exactly on those occasions, as if it knows I've got something important I wanted to feel good for!
This always happens after several quieter days when I start to think I am finally recovering. Then, bam! The pain then reappears... kind of like something hot pressing deep into the nerves of my face from my left cheek to ear, from the inside of my mouth/head outward. I know that probably doesn't make sense to anyone but I am always struggling for ways to describe accurately the feeling.
The toughest time I've had recently has to do with air pressure - once last week during a plane flight descent for landing, when I was really suffering and could do little about it, and again today, with the barometric pressure dropping due to tropical storm Bonnie (I live in Florida).
The good news is, the good days are better than they used to be.
I am sorry to see Kev's blog end, and hope I can take the baton adequately.
This always happens after several quieter days when I start to think I am finally recovering. Then, bam! The pain then reappears... kind of like something hot pressing deep into the nerves of my face from my left cheek to ear, from the inside of my mouth/head outward. I know that probably doesn't make sense to anyone but I am always struggling for ways to describe accurately the feeling.
The toughest time I've had recently has to do with air pressure - once last week during a plane flight descent for landing, when I was really suffering and could do little about it, and again today, with the barometric pressure dropping due to tropical storm Bonnie (I live in Florida).
The good news is, the good days are better than they used to be.
I am sorry to see Kev's blog end, and hope I can take the baton adequately.
Monday, July 12, 2010
An open question for Topamax users
Spoke to my orafacial pain Doc today, who said he didn't think Topamax would help, though I've heard from several of you that you DID find relief so I want to pursue this. His questions were what does it help with, specifically -
neuropathic pain? Tongue burning? Face hurting? Teeth aching? migraine headaches? etc... any info you can provide? You can also email me privately if you choose.
Any help you can give would be much appreciated so I can get him to write a script and give it a try. The gabapentin seems to have very little side effect, as I'm taking a very low dose (200mg/day) but I still am in a good deal of pain every single day, and want to explore anything that's been working for others!
In terms of drug interactions, I still use Clonazepam for the burning tongue but spit it out vs. swallowing it for a more topical than systemic effect. I am meeting with the dentist who did this to me today. I'm now at seven months post-injury and counting. How's everybody else doing?
Thanks.
neuropathic pain? Tongue burning? Face hurting? Teeth aching? migraine headaches? etc... any info you can provide? You can also email me privately if you choose.
Any help you can give would be much appreciated so I can get him to write a script and give it a try. The gabapentin seems to have very little side effect, as I'm taking a very low dose (200mg/day) but I still am in a good deal of pain every single day, and want to explore anything that's been working for others!
In terms of drug interactions, I still use Clonazepam for the burning tongue but spit it out vs. swallowing it for a more topical than systemic effect. I am meeting with the dentist who did this to me today. I'm now at seven months post-injury and counting. How's everybody else doing?
Thanks.
Monday, July 5, 2010
Giving Neurontin another shot
I weaned off the Nortriptilene (Pamelor) because, although it helped me sleep, it was making me feel dizzy, my heart race, and a few times I felt very close to passing out.
I still had that old prescription for Neurontin (Gabapentin) sitting around, which is known to help nerve pain, so I thought I'd give it a try and see if it made a difference. I do think it has helped. The problem is that it becomes less effective the more you take it, so you have to keep increasing the the dosage.
I took 100mg @ bed time for the last 4 days, then today had to add a second 100mg around 3pm when I just couldn't deal with that deep burning feeling like someone's boring into the nerves of my upper jaw, where the root canals were done (which possibly further upset the already inflammed nerve).
I would give anything just to be able to lie on my left side, chew on my left side, rest my hand on my chin, wash my hair without any sensitivity, and feel 100% normal again, but the teeth pains don't seem to be improving any more. I've plateaued.
Burning has increased after a few day quieter days, too, but the weather front that just came through could definitely be a factor. I'm just glad I am feeling better than I was during months 1-5 of this injury. I continue taking the B complex daily and C powder almost every day, though it's tart - I mix with watered down OJ or cranberry juice so as not to irritate the burning tongue; little tough to take so I have with breakfast. And of course clonazepam usually twice a day for the burning tongue.
How's everyone else doing?
I still had that old prescription for Neurontin (Gabapentin) sitting around, which is known to help nerve pain, so I thought I'd give it a try and see if it made a difference. I do think it has helped. The problem is that it becomes less effective the more you take it, so you have to keep increasing the the dosage.
I took 100mg @ bed time for the last 4 days, then today had to add a second 100mg around 3pm when I just couldn't deal with that deep burning feeling like someone's boring into the nerves of my upper jaw, where the root canals were done (which possibly further upset the already inflammed nerve).
I would give anything just to be able to lie on my left side, chew on my left side, rest my hand on my chin, wash my hair without any sensitivity, and feel 100% normal again, but the teeth pains don't seem to be improving any more. I've plateaued.
Burning has increased after a few day quieter days, too, but the weather front that just came through could definitely be a factor. I'm just glad I am feeling better than I was during months 1-5 of this injury. I continue taking the B complex daily and C powder almost every day, though it's tart - I mix with watered down OJ or cranberry juice so as not to irritate the burning tongue; little tough to take so I have with breakfast. And of course clonazepam usually twice a day for the burning tongue.
How's everyone else doing?
Wednesday, June 30, 2010
We now have a Facebook page
Please add Jane Fisher - Lingual Nerve Injury to your friends - have found some new people this way who may have information to share or be helped by this blog.
Friday, June 25, 2010
Foods that help stop the burning
Sometimes you crave certain foods when you are feeling down (comfort foods like ice cream) or dehydrated (grapes, watermelon) or pregnant (um, I have no explanation for that one!), I have noticed I feel regular cravings for foods that temporarily cure the burn.
Interestingly, these are some of the same things that are recommended to stop the burning of hot peppers or spicy food. The capsaicin in peppers is an alkaline oil, and needs to be counteracted to stop burning. Foods that do actually help temporarily stop the burn without the need for pharmaceutical intervention include:
Sugars- Bananas, apple slices, marshmallows (the big kind), dairy products
Fats - spoonful of peanut butter, cheese, cheesecake and chocolate milk (a 2-for-1, sugar and fat) Well, I never promised you'd lose weight with this injury.
Starches & Carbohydrates - bread, tortillas, rice, mashed potatoes, cornbread
Acids - lemons, lemonade, oranges- while these may burn themselves,, their interaction with spicy foods cools the burn
What makes it worse: alcohol, soda pop, salty chips, dry mouth, very cold water.
I read on another site about the brave guy who ate hot peppers for two weeks straight and states he's finally cured himself of the burning. I am way too much of a wimp to make that attempt, but if it has worked for you, I'd love to hear about it.
I hear there are also capsaicin "candies". Oh, joy, I can't imagine the feeling of sucking on that all day. The theory with this therapy is that the use of these hotly spiced candies depletes the substance P, which is the neurotransmitter for pain. The active ingredient is cayenne pepper. Curiously, capsaicin is also thought to be an anti-inflammatory. Hmmm.
Testing this theory (which you know I can't resist,) I had tortilla soup today and, I must say, afterwards felt a markedly reduced pain sensation of the tongue for a little while. Wonder if I have the cojones to do this every day for 2 weeks, and if it will "cure" me? Stay tuned....
Interestingly, these are some of the same things that are recommended to stop the burning of hot peppers or spicy food. The capsaicin in peppers is an alkaline oil, and needs to be counteracted to stop burning. Foods that do actually help temporarily stop the burn without the need for pharmaceutical intervention include:
Sugars- Bananas, apple slices, marshmallows (the big kind), dairy products
Fats - spoonful of peanut butter, cheese, cheesecake and chocolate milk (a 2-for-1, sugar and fat) Well, I never promised you'd lose weight with this injury.
Starches & Carbohydrates - bread, tortillas, rice, mashed potatoes, cornbread
Acids - lemons, lemonade, oranges- while these may burn themselves,, their interaction with spicy foods cools the burn
What makes it worse: alcohol, soda pop, salty chips, dry mouth, very cold water.
I read on another site about the brave guy who ate hot peppers for two weeks straight and states he's finally cured himself of the burning. I am way too much of a wimp to make that attempt, but if it has worked for you, I'd love to hear about it.
I hear there are also capsaicin "candies". Oh, joy, I can't imagine the feeling of sucking on that all day. The theory with this therapy is that the use of these hotly spiced candies depletes the substance P, which is the neurotransmitter for pain. The active ingredient is cayenne pepper. Curiously, capsaicin is also thought to be an anti-inflammatory. Hmmm.
Testing this theory (which you know I can't resist,) I had tortilla soup today and, I must say, afterwards felt a markedly reduced pain sensation of the tongue for a little while. Wonder if I have the cojones to do this every day for 2 weeks, and if it will "cure" me? Stay tuned....
Tuesday, June 15, 2010
Newly injured or not, I feel your pain
I have so much empathy for some of those who've been suffering with this injury for years. I cannot even fathom going through this for another month, much less years.
While this horrible pain has caused immeasurable disruption to my life, I sometimes feel I really have no right to be complaining "only" 6 months after my injury, when there are others out there who've been suffering (often in silence) for years.
I do all this complaining, whining and "kvetching" not just to vent, blow off steam, and commiserate with my fellow sufferers, but also to hopefully exchange positive advice on finding relief.
My brain is in a constant battle with itself these days; I spend half the time feeling hopelessly, "I just want to feel normal again!" and the other half thinking how lucky I am just to be alive, and to quit complaining already. It's not cancer, after all. It could be worse. But that doesn't mean it doesn't still suck.
Can you relate?
Some of the really long-term sufferers can be found on World Law Direct, if you are morbidly interested in hearing their stories. I am. I am always interested in anyone's story, especially those who've eventually recovered. It gives me hope, that as I sit here typing, my mouth in "flames", the side of my face and my temple still aching, I know that someday, this WILL get better.
While this horrible pain has caused immeasurable disruption to my life, I sometimes feel I really have no right to be complaining "only" 6 months after my injury, when there are others out there who've been suffering (often in silence) for years.
I do all this complaining, whining and "kvetching" not just to vent, blow off steam, and commiserate with my fellow sufferers, but also to hopefully exchange positive advice on finding relief.
My brain is in a constant battle with itself these days; I spend half the time feeling hopelessly, "I just want to feel normal again!" and the other half thinking how lucky I am just to be alive, and to quit complaining already. It's not cancer, after all. It could be worse. But that doesn't mean it doesn't still suck.
Can you relate?
Some of the really long-term sufferers can be found on World Law Direct, if you are morbidly interested in hearing their stories. I am. I am always interested in anyone's story, especially those who've eventually recovered. It gives me hope, that as I sit here typing, my mouth in "flames", the side of my face and my temple still aching, I know that someday, this WILL get better.
Saturday, June 12, 2010
At 6 months, starting to feel like a "lifer"
PERMANENCY
After reading that if you aren't healed in 3 months, chances of this being permanent are likely, I must say at this point, I am one of those victims, but I still hope in time things fade more, as they have for others. Everyone feels pain differently though. Everyone's story is slightly different, and each, so unfortunate. It really helps to hear from others who've been though this, for me at least.
Funny thing about this injury, it is maddening trying to figure it out. On the one hand, I still have pain from simple things like putting on sunglasses - when the frame crosses over my left temple, I wince- still, 6 months after injury. But the chewing on broken glass feeling subsided long ago, never to return, however was replaced by other annoying symptoms - all less painful, but painful nonetheless.
The stinging now is sometimes at the left tip of tongue, but generally it's the overall rugburn more all over the middle of the tongue. The teeth ache and sometimes smiling still hurts.
It is hard to go about life cheerfully and I can't help but look around sometimes at all these people who don't realize I"m in pain, but I can't keeping whining about it all the time. I think, how lucky they are to lead these "normal" lives without their mouth on fire all the time...they have no idea...
TRIGGERS
I already have low blood sugar issues, so notice it is a really BAD IDEA to go hungry. But, I hate to eat when my mouth is quiet in the morning. So I put it off...until I'm ravenous, and the pain fires up right along with the hunger. Sugar may be a culprit, but not nearly so much as STRESS. That has to be the #1 thing. I feel the least pain when I'm so sleepy I'm nearly dozing off - the nerves must just be so relaxed at that point.
I am STILL having pain in my root canals months later, and was told by my latest endodontist this is not normal, so I am going back to the endo who did the first root canal next week. I was told not to have crowns put on til everything "settles"...LOL...can they possibly understand how "unsettled" my mouth is, and has been, for months on end? I don't know when I will ever be able to finish this dental work, and am just trying to be very careful not to chew anything sticky or have anything on the left side of my mouth.
I still haven't found a job, in spite of many close calls and promised offers. My daughter is starting college, so I've been wrapped up in those events, and the stress of having your firstborn and best friend leave home is overwhelming. Trying to act happy and positive around her, but sometimes I can't hide the sadness.
Keeping busy is a distraction, but I am still having to take at least one vicodin to get through the day or I am a bitch on wheels, because of the pain. I'm in big trouble as it seems that prescription runs out sooner than I will recover, and doctors don't like to write prescriptions for narcotics.
ADVICE
I was told by yet another attorney that this is the risk you take any time you get an injection, and though she greatly sympathizes with me (she really does), you cannot sue for malpractice just because the dentist is a jerk, who wouldn't admit he'd caused the injury, nor treat it, in fact, may have even sent me on a wild goosechase trying to keep me of his back, until I realized it was his fault. I plan to call him and meet with him, if he'll agree to it, to show him the stack of medical bills and 2 gallon sized bag of meds, so that he should know what he did. I don't know why, I just think it will make me feel better. By the same token, that meeting will be so stressful for me, I just know it will be a horrible day of burning tongue. And so it goes...
I'm taking a little Advil as the endo recommended it as anti-inflamatory, as well as daily doses of vitamin B in the methyl form (because it absorbs better but, of course, is more expensive than the cyan version). That attorney I mentioned spoke with a dentist friend of hers, who knew of lingual nerve injuries, but had only caused 2 in his 40 year career, and he recommended going back on the B for nerve healing. I don't see any change yet. If I could afford the laser, I'd go back to that, because I do think it was helping.
After reading that if you aren't healed in 3 months, chances of this being permanent are likely, I must say at this point, I am one of those victims, but I still hope in time things fade more, as they have for others. Everyone feels pain differently though. Everyone's story is slightly different, and each, so unfortunate. It really helps to hear from others who've been though this, for me at least.
Funny thing about this injury, it is maddening trying to figure it out. On the one hand, I still have pain from simple things like putting on sunglasses - when the frame crosses over my left temple, I wince- still, 6 months after injury. But the chewing on broken glass feeling subsided long ago, never to return, however was replaced by other annoying symptoms - all less painful, but painful nonetheless.
The stinging now is sometimes at the left tip of tongue, but generally it's the overall rugburn more all over the middle of the tongue. The teeth ache and sometimes smiling still hurts.
It is hard to go about life cheerfully and I can't help but look around sometimes at all these people who don't realize I"m in pain, but I can't keeping whining about it all the time. I think, how lucky they are to lead these "normal" lives without their mouth on fire all the time...they have no idea...
TRIGGERS
I already have low blood sugar issues, so notice it is a really BAD IDEA to go hungry. But, I hate to eat when my mouth is quiet in the morning. So I put it off...until I'm ravenous, and the pain fires up right along with the hunger. Sugar may be a culprit, but not nearly so much as STRESS. That has to be the #1 thing. I feel the least pain when I'm so sleepy I'm nearly dozing off - the nerves must just be so relaxed at that point.
I am STILL having pain in my root canals months later, and was told by my latest endodontist this is not normal, so I am going back to the endo who did the first root canal next week. I was told not to have crowns put on til everything "settles"...LOL...can they possibly understand how "unsettled" my mouth is, and has been, for months on end? I don't know when I will ever be able to finish this dental work, and am just trying to be very careful not to chew anything sticky or have anything on the left side of my mouth.
I still haven't found a job, in spite of many close calls and promised offers. My daughter is starting college, so I've been wrapped up in those events, and the stress of having your firstborn and best friend leave home is overwhelming. Trying to act happy and positive around her, but sometimes I can't hide the sadness.
Keeping busy is a distraction, but I am still having to take at least one vicodin to get through the day or I am a bitch on wheels, because of the pain. I'm in big trouble as it seems that prescription runs out sooner than I will recover, and doctors don't like to write prescriptions for narcotics.
ADVICE
I was told by yet another attorney that this is the risk you take any time you get an injection, and though she greatly sympathizes with me (she really does), you cannot sue for malpractice just because the dentist is a jerk, who wouldn't admit he'd caused the injury, nor treat it, in fact, may have even sent me on a wild goosechase trying to keep me of his back, until I realized it was his fault. I plan to call him and meet with him, if he'll agree to it, to show him the stack of medical bills and 2 gallon sized bag of meds, so that he should know what he did. I don't know why, I just think it will make me feel better. By the same token, that meeting will be so stressful for me, I just know it will be a horrible day of burning tongue. And so it goes...
I'm taking a little Advil as the endo recommended it as anti-inflamatory, as well as daily doses of vitamin B in the methyl form (because it absorbs better but, of course, is more expensive than the cyan version). That attorney I mentioned spoke with a dentist friend of hers, who knew of lingual nerve injuries, but had only caused 2 in his 40 year career, and he recommended going back on the B for nerve healing. I don't see any change yet. If I could afford the laser, I'd go back to that, because I do think it was helping.
Wednesday, June 2, 2010
Eeeerily quiet, but why? Just freakin weird.
Wish I could say "hallelujah, I've found the answer!" But no. Just the least amount of pain I've had, maybe since this thing started; I was probably a 4-5 in pain all day, except a few choice moments when I talked too long on the phone and had to grab water several times. I've taken a couple ibuprofen the last few days, other than that, I'm taking a fish oil pill now daily plus the traumeel and lymphomycite or whatever the heck it's called - it's for healing. Haven't had laser in weeks or acupuncture in months. Had a glass of watered-down wine last night with dinner.
When I found myself getting stressed out talking to the unemployment bureau, yet again, about why they still won't pay me any benefits, the tongue started to burn - I consciously tried to calm myself down by reminding myself that I'm so much better now. It's like a mantra I repeat when the burn gets going.
With all due respect to the Beatles..."it's getting better all the time...better/better/ better" Though, truthfully, it's hard to convince myself of that more often than not. I've been feeling that I've plateaued, and will be like this, with those evil bad days coming back every few days, forever. But today was a good day. A really good day. How to bottle it - wish I knew.
And now, for the TMI portion of the blog, (fair warning for those that don't want to know), last time I had my period I got a wicked migraine and was waiting for it to happen again this month. Instead, it arrives and I get a day of greatly reduced pain. No clue why. But I will continue analyzing the cause and effect to see if I can determine how we can all live at no more than this level of pain always.
When I found myself getting stressed out talking to the unemployment bureau, yet again, about why they still won't pay me any benefits, the tongue started to burn - I consciously tried to calm myself down by reminding myself that I'm so much better now. It's like a mantra I repeat when the burn gets going.
With all due respect to the Beatles..."it's getting better all the time...better/better/ better" Though, truthfully, it's hard to convince myself of that more often than not. I've been feeling that I've plateaued, and will be like this, with those evil bad days coming back every few days, forever. But today was a good day. A really good day. How to bottle it - wish I knew.
And now, for the TMI portion of the blog, (fair warning for those that don't want to know), last time I had my period I got a wicked migraine and was waiting for it to happen again this month. Instead, it arrives and I get a day of greatly reduced pain. No clue why. But I will continue analyzing the cause and effect to see if I can determine how we can all live at no more than this level of pain always.
Sunday, May 30, 2010
And back to burning again...
The pattern continues of 2-3 good days, 2-3 bad -- repeat. Very predictable, though I naively still keep expecting the good days to stay good and not revert back. Call it naivete or call it positive thinking...I haven't given up hope. I can't.
The various aches and pains about the left side of my face and head are getting better, and I can again do little things like apply makeup over my cheek and bend over to put a towel on my head after the shower, with only a little pain. Still have the lingering soreness of the new root canals, but I've even started carefully chewing on the left side at times - very carefully.
The tongue burning still after nearly 6 months drives me crazy because it is so constantly distracting, and nothing seems to make it go away on the bad days. Makes me feel I have no control over this thing. Blogging about it is a good release, that is one thing I can control. To me, this is really important, or else it all starts to feel out of control, scary, and hopeless. That's not a good place to be.
The various aches and pains about the left side of my face and head are getting better, and I can again do little things like apply makeup over my cheek and bend over to put a towel on my head after the shower, with only a little pain. Still have the lingering soreness of the new root canals, but I've even started carefully chewing on the left side at times - very carefully.
The tongue burning still after nearly 6 months drives me crazy because it is so constantly distracting, and nothing seems to make it go away on the bad days. Makes me feel I have no control over this thing. Blogging about it is a good release, that is one thing I can control. To me, this is really important, or else it all starts to feel out of control, scary, and hopeless. That's not a good place to be.
Thursday, May 27, 2010
Shhhhh....
...I'm almost afraid to say this out loud, I don't want to jinx it, but as soon as the uncontrollable fire came yesterday, it went away today. I woke up today feeling surprisingly well...as the day progressed, still good...hmmmm...even on into evening and - wow, this is really an improvement! Back down to rugburned feeling.
Like, I didn't even get relief yesterday after two whole 500 mg vicodin, .75 Klonopin, and a Cosmo cocktail for good measure (the last one suggested by my son, who I think was going to punch me if I said one more time "my mouth is on fire!" I don't drink much these days.) But today - I didn't have to take any of that; I did, because I am testing a theory. I took .25 Klonopin 3x spread out throughout the day, to see if having a stead stream of it would make a difference. But I couldn't tell because I was already having a good day anyway. Won't I feel silly if all this analysis and experimentation is a waste of time, because none of it has any effect anyway.
I did take 2 ibuprofen both yesterday and today for inflammation, which I don't usually take, as well as extra doses of the two homoepathic meds, plus brought back the Alipoic acid/acetyle pill (one), and added one Omega 3 to the mix. Too soon to tell if any of that could really have quenched the fire so randomly.
I am thinking less and less that particular foods (sugar) has anything to do with it, because on good day I can get away with a lot; on a bad day, NOTHING gives me relief, no matter how bland. But I do think caffeine, being a stimulant, is an obvious nerve trigger, so I do avoid that. Other than that, heck if I know!
Up too late again tonight, but at least this time it's not from the pain. 1/2 an ambien is in order.
Like, I didn't even get relief yesterday after two whole 500 mg vicodin, .75 Klonopin, and a Cosmo cocktail for good measure (the last one suggested by my son, who I think was going to punch me if I said one more time "my mouth is on fire!" I don't drink much these days.) But today - I didn't have to take any of that; I did, because I am testing a theory. I took .25 Klonopin 3x spread out throughout the day, to see if having a stead stream of it would make a difference. But I couldn't tell because I was already having a good day anyway. Won't I feel silly if all this analysis and experimentation is a waste of time, because none of it has any effect anyway.
I did take 2 ibuprofen both yesterday and today for inflammation, which I don't usually take, as well as extra doses of the two homoepathic meds, plus brought back the Alipoic acid/acetyle pill (one), and added one Omega 3 to the mix. Too soon to tell if any of that could really have quenched the fire so randomly.
I am thinking less and less that particular foods (sugar) has anything to do with it, because on good day I can get away with a lot; on a bad day, NOTHING gives me relief, no matter how bland. But I do think caffeine, being a stimulant, is an obvious nerve trigger, so I do avoid that. Other than that, heck if I know!
Up too late again tonight, but at least this time it's not from the pain. 1/2 an ambien is in order.
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