I'm on fire today, sadly, after some of the best days I'd had since the beginning of this thing. Just another reminder that this isn't nearly over, and may never be. Unfortunately, my discomfort extends beyond the tongue (burning) to teeth and even cheek still aching. I realize that for most people, the tongue seems to be the predominant problem, I wish it was my only one... it is definitely the most unnerving!! The fact my symptoms are so widespread does make me worry more that the trigeminal nerve has been affected, and honestly, no one knows what lies ahead if that is the case.
I have slacked off on the B vitamins and acetyl Lcarnitine as I'm just plain tired after swallowing so many pills in the last 140 days, and stopped the cold laser treatments due to finances. I also haven't done acupuncture in a month, because the relief is temporary and insurance does not cover. I did start taking Omega 3 today but that is one big a** pill to swallow. Haven't had a chance but want to follow up on kritty's recommendation on mega dosing with vitamin C powder, just haven't known where to start, perhaps GNC or the Vitamin Store??
Seems the meds aren't even working at this point, the only real solution is topical benzocaine or Oragel several times daily. Passing this on to those who, like me, may be at their wits end when nothing else seems to work. I'm back to having trouble sleeping because I can't shut the fire off and my mind races.
Suggestions always welcome.
I used sleeping pills once in a while when I was at my worst. Do you get throbbing in the root canalled teeth? It was so bad for a while that I couldn't get up quickly without the heat beat in the teeth sensation. That's much better now.
ReplyDeleteI remember that beating feeling in the teeth! The root canalled teeth have stopped throbbing since the roots were removed, but they still ache...leaving me confused if this is yet another side effect of the injured nerve and not really so much about those two root canals.
ReplyDeleteOne thing that occurred to me is my dosing schedule; I don't take clonaz/Klonopin at regular intervals spaced throughout each day and maybe I should... I take it when I need it, which is typically between 2pm - 11pm but just how much pain I'm having varies, so I dose accordingly maybe .25 maybe .5, maybe twice or up to 4 times....
I try not to take it unless I really need it because it makes me sleepy; perhaps that approach is wrong, and I should take it at the same time each day, whether i need it or not. so it can "build up" in my system. I am also taking 20mg nortrip/Pamelor, every night, regularly.
Thoughts?
hi jane,
ReplyDeletei'm sorry to hear you're having a setback. i'm concerned by the statement that you're worried your trigeminal nerve has been affected. your trigeminal nerve *is* affected. the lingual and inferior alveolar nerve are collectively known as the mandibular nerve. this all falls under the umbrella of the trigeminal nerve. have you looked at the trigeminal anatomy? if not, it might be worth a viewing. if you know all this, i'll just shut up now.
you can get powder vitamin c at the vitamin shoppe or GNC. trader joe's has it too. nortriptyline 20mg is a baby dose. i also take it. 100-150 mg is the therapeutic dose for nerve pain. i was taking it at this dose when my pain was super bad; i have titrated down over time.
hope this helps. hang in there.
k.
Hi K,
ReplyDeleteI'm familiar with the trigeminal nerve - my concern is that one study found that injury to lingual or alveolar nerves could potentially become trigeminal neuralgia long-term, (which is nicknamed "the suicide disease" gee, how nice), since they are all interconnected, but I have not heard from anyone who this actually happened to, thankfully. My prayers go out to anyone who has TN.
I did up the dosage of Nortip. last night to 30mg. I am known to be a baby-dose type; highly sensitive to any medication, so I really need to titrate up verrry slowly. Your comments are always so helpful - thanks!
hi jane,
ReplyDeleteTN is typically from a blood vessel compressing the nerve where the nerve meets the brainstem. however, most doctors will begrudgingly admit they understand very little about the disorder. there is a lesser intense "atypical" trigeminal neuralgia diagnosis given out quite liberally, to the detriment of people like us, who are injured by injections, because the pain symptoms are very similar if not exacting to a degree. if you do not have electric shocking pain, you can likely be assured you do not have classical TN.
burning, aching, constant pain with numbness is trigeminal neuropathic pain. more difficult to treat, easier to get misdiagnosed as atypical TN by idiot dentists and doctors, and not amenable to surgery.
k.
We definitely are on the same page, here...I went through electrode testing and brain scan to rule out TN. The Cleveland Clinic Neurologist kept insisting I had Atypical Trigeminal Neuralgia, though I kept saying, but I don't get any electrical shocks, and nothing medically has happened other than the dental visit, but ATN was her diagnosis.
ReplyDeleteShe was incredulous that I wouldn't just accept that, but this was all too coincidental immediately following dental work...plus once I started looking into the brain surgery recommended for TN I was like, oh, helll nooo!
Anyway, I finally found the expert at a teaching hospital, who did more testing, and confirmed my own lingual nerve injury diagnosis.
30mg nortriptyline has been giving me random dizzy spells, makes my mouth dry as the desert upon waking. I can't believe the dosage is normally over 100mg!
Did they try you on Neurontin as well? Just wondering how it compares.
Neurontin is also known as gabapentin. It made me a zombie, I couldn't even keep my eyes open.
ReplyDeleteHello fellow injured, I came across this blog tonight and thought i`d say i live with the lingual nerve damage 7 years almost. My aching was burning, electric shocking sensations on my numb tongue with a constant tight vice like feeling along the lower jaw. i had decompression of the lingual nerve in 2005 and it was what helped the most. My advice to you all is that you need to stay persistent within the dental community and don`t let them brush you off to a nuero or a shrink. I was never diagnosed with TN but a neuro diagnosed me with BMS one time. I tried every drug known for nerve damage the first 2 years with no relief in sight.The surgery was my last resort. I have not had any electrical burning shocks on me tongue causing me constant agony for about a year now. I am starting to get my life back and i hope you all will someday soon.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteThanks for your post, and welcome! Interested in hearing more: who did you find to do the surgery? I've been warned it could make things worse, so my orofacial guy did not want to go that route, so I'm wondering who guided you through that process (since, to your point, the dental guys give us the brush off, or just look at us blankly).
ReplyDelete7 years is such a long time -I am happy you found relief finally (do you feel completely normal now?) and grateful for you sharing your story with us....was it microvascular decompression?
I've also read about gamma knife surgery (using laser, less invasive but not always successful) but not sure insurance plans cover these things here in the states for such an unknown thing as lingual nerve repair.
I still search all day every day for something to stop the burning and pain. My pain is no longer electrical feeling; it has settled now to deeply in the nerves in the left teeth, mouth, but topical burning on the tongue. Fewer headaches, no more earaches and the throat is fine.
But my face hurts to the extent that I still don't sleep well and am considering all possible options for pain relief.
Many thanks in advance for add'l info
I just read some more of your postings and notice you are in Fla. You may want to contact Alan Kelman DDS for an opinion on your condition. You need to see someone who specializes in nerve repair. Nerve repair is not for everyone but that's the only way to see the extent of the damage and where the damage is located.
ReplyDeleteI had my repair surgery done in up state NY by an OS named Sal Ruggiero DDS MD. It was decompression of the lingual nerve not micro-vascular nor gamma knife. stay away from the lasers is what i was told,it could make things way worse.
I am not 100% better and never will be but the relief is tremendous at this point. My burning is not topical it is deep within the tongue with topical numbness.
A mixture of drugs can help reduce the intensity of the burning but nothing gives complete relief is what i found. You have to keep a certain level in your system at all times, sometimes double on really bad days.
Hope this info helps you some and you continue to heal without surgical intervention.
Please help me! I received 2 fillings upper and lower left jaw a week ago today. After the two fillings I'm feeling throbbing lower jaw pain and numbness on the left side of my tongue with taste loss as well. I have had many fillings done before but not from this dentist all times before I was fine the next day. I confronted my dentist today and he claims he may have hit the nerve in the tooth he filled thus killing it and then requested a root canal?! I told him that I disagree because when he tapped on my teeth today I didn't feel pain. I also don't feel that the tooth would have affected me losing sensation or taste in my tongue. I am going to get a second opinion from another dentist tomorrow. Also any pain meds that I take don't help! I am on Prozac for depression and anxiety but the pain is making is so much worse! I have thoughts of suicide because I just want the pain to stop but nothing is helping me! I need a proper diagnosis but how do I know if it's a nerve or
ReplyDeleteThe tooth? HELP! PLEASE
Cause my tongue to be numb and law taste!
To our new poster - I am so sorry for what you're going through - we've all been there- but the good news is we all survived (though it seemed doubtful at first). I agree that dentist sounds whack, if that's what he really meant, it makes no sense.
ReplyDeleteAre you using OTC pain meds? Those were were useless for me - I only found relief through a cocktail of hydrocodone, klonopin and, finally, Lyrica 150 mg/day. With that said, I still feel pain every single day, just dialed down a bit.
I wish I had all the answers. There are no quick fixes! This thing takes time and patience. I can only suggest you read through these pages as there is some good information. I am still suffering a year after injury, but it is not nearly as bad as the first few months. Please keep us posted. Where do you live?
I think it is very difficult to accept this at first and you kind of have to go through a grieving process on two counts - one that you will be stuck with this uncomfortable pain and two that you can't get any justice for it. One thing I did realize is that I had to let that go and settle into a new existence - yoga and zen philosophy helped with that a lot. I think ice and heat help with the aching - I also think hot foods for whatever reason - yo have to take care of yourself - get the right vitamins and get out of any depression because that will only cause you to focus more on the physical pain and what you've lost. The mouth is one of the senses - so it's natural that this is very disturbing new feeling to adjust to - nerves do grow and in many this isn't permanent - and in most it will improve to some extent so there is hope. As far as the anger over the dismissal from the medical community it is something you will have to let go because the anger won't help you heal.
ReplyDeleteHow does everyone deal with the work aspect feeling miserable and trying to appear fine? I don't want to start announcing my constant chronic pain to which they may seem whiny or incapable of doing the job , but I also don't want to seem like I have an attitude. I have Lingual nerve damage on left and right causing ATN and burning mouth. 7yrs ago wisdom tooth extraction - stopped seeing doctors and stopeed reading about cures when i realized noone and nothing could help it only depressed me. I find sitting at a desk or computer anything causing facial or neck pain seems to trigger it severly. Constantly fighting the pain. I tried gabapentin (did nothing but turn me into a zombie) and b-12 - have there been any new developments I may have missed - muscle relaxers help ease the muscles around the nerves and ease the pain a bit - but doctors seem to think everyone is an addict - even people with severe pain who have a tendency to ration themselves so the effects of the drug will remain strong. Ridiculous. I've lost all faith in doctors. Just have to live with the felling that my tongue was scraped to death on pavement and all my teeth are being drilled at once - life is full of surprises i guess and incompetent oral surgeons who are allowed to butcher people day after day with no checks.
ReplyDeleteTo the above poster - I agree on all accounts. Dr's make you feel like an addict, when you are doing your best to take the minimum necessary just to cope. The tongue scraped on pavement describes it to a Tee. To this day, I cannot lie on my left side because it feels like I was punched just below the cheekbone (upper molars).
DeleteRe: work, I agree it is definitely made worse by sitting at the computer and being tense. Right - you can't come off sounding like a whiner, they still expect you to get your job done. People don't appreciate how hard it is to focus when you're in pain, and the fact you can't tell anyone about it makes it worse... But you can vent here! We get it.
There are so many new people joining this blog every week, it makes me think this is much more widespread than doctors would like us to think. There are no regulations in place, no accountability...I spoke with 6 lawyers, who all said "it's a risk of any injection". What are we, in the dark ages? They haven't come up with a less risky form of treatment?