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
Monday, August 30, 2010
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.
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