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.
Jane, thanks for keeping this blog. I was following Kevs blog also, but as you know he has stopped. I was injured 8 weeks ago and deal with alot of the same issues. I want to let you know that following your blog helps me and to realize that I'm not the only one with this, even though I can't find a single person I know who has ever had this happen. So thanks again for keeping this blog it has helped me ALOT! Maybe from time to time I could comment on your stories with you and we could go back and forth. Thanks, Dean
ReplyDeletegoodness, does this post resonate with me.
ReplyDeletei don't have any burning, but my injury spread to the upper and lower branches and i have an ache which can vary in intensity. i tried to wean off one medication (nortriptyline) and the pain increased. i had to go back on and cried in defeat. i am at 11 months. if i am at 11 months and need to go back on meds, i doubt i am ever going to be at a place when i can get off meds.
i have to fly for my first time since this injury in september. i am petrified. its only 2 hours but i have no idea what to expect. i was curious if i should overdose myself on topamax and nortriptyline but then i wondered if it would even matter.
how was your pain on the plane? was it only during the descent? what about takeoff? what was it from 1 to 10? poor jane! i can only imagine.
did you have an injection to your lower or upper jaw?
k.
Dean, wonderful to have you onboard. Sorry to hear of your injury. We may be a small group, but can totally relate to what has happened to you. Please feel free to describe your condition and how you're handling it, comment on postings, and use any tips that may help in your "recovery"....I hesitate to use that term because although each of us feels better now than we did, we have yet to see what 100% recovery looks like.
ReplyDeleteKritty,
ReplyDeleteTakeoff was fine, but I felt intense pain that no amount of meds or alcohol could relieve for the last 45 minutes of the 3-1/2 hour flight. If you can tough out that last part (try to pre-medicate) you will be ok. The good news is that the return flight was uneventful compared to that nightmare.
The novocaine shot (Carbocaine) that started all this was in the lower jaw behind my back teeth, but I have since felt pain in the upper teeth and tongue, due to the crazy trigeminal connection of nerves.
hi jane,
ReplyDeletefirst let me say i responded to your benzo question in kevs blog under the maverick posting.
thanks for the info about the flight. i am not thrilled. its only 2 hours, but intense pain for any amount of time sucks. i wonder why the return flight was less painful...maybe you were at a lower altitude.
the pain you are feeling in other branches may be due to the chemical spread. it is not unusual you would have pain in the tongue; this nerve is connected to the nerve you got the injection into. the upper jaw pain is sometimes a physicochemical phenomenon which happens with chemical injuries. pogrel writes about it (kev might have his paper linked to his blog, if not, i'll send it to you.). for me, the pain did not start in my upper branch until i used a TENS unit on my face. what an idiot. : )
i think you should get a thin slice MRI/MRA (say thin slice to your neuro) to rule out a compression. just to be safe this injection didnt kick up a pre existing neuralgia. did your neuro do this?
my pain has spread into my ear. sometimes it goes down the front of of throat and under my jaw. it's all connected, i am certain.
RE: TENS, I did electro acupuncture and laser in the face; do you think that could have hurt more than helped the situation by spreading the pain around??
ReplyDeleteI did get a (very expensive) MRI (though didn't know to ask for thin slice) and was told there's nothing wrong other than some scattered "white matter" they thought was harmless and could be related to migraines (but I rarely get migraines)
The description of your symptoms sounds so like mine - I used to get that exact pain in the throat and ear more often, now it has moved into teeth, cheek and head. Ugh! I feel your pain!
laser not likely causing it, that's just light; electro acupuncture? couldn't say. what does it utilize? if it's anything like TENS, it is a possibility.
ReplyDeleteconfirm with whoever ordered your MRI that it was thin slice. you did not mention an MRA so this is less reassuring. scattered white matter can be nothing or something, it depends on your symptom manifestation. are you seeing double, losing sensation, etc? then it's likely nothing. white matter can be age approrpriate, but it can also be related to the blood flow in the brain, another reason to get the MRA.
get another MRI with MRA when your insurance will cover it (call your insurance to find this out); a thin slice. tell them you want it done with a trigeminal protocol. get a neuroradiologist to read it. or send me the radiology report and i will read it.
did you ever have numbness?
k.
jane, what was your flight route? did the pain stop when you landed or did it last for the rest of the day?
ReplyDeleteMESSAGE FROM JANE -
ReplyDeleteFolks, I have been unable to post new entries, the blogspot site has made some kind of change to logins/accounts and is not recognizing me nor allowing me to modify the blog; I keep getting password resets and it won't accept the new password I just created, repeatedly... I got an email from them that this is a known problem with a help desk ticket already open.
I think with blogspot you can email me privately or tell me not to post your comment, but send your address so I may respond.
We do also have a Facebook page, search on lingual nerve or dental disaster or Jane Fisher and it should be found. You can create an alternate ID if you don't want to post all your personal family stuff, etc... on that FB page. I will get back online ASAP. Meanwhile, thank you kritty for your continued advice- wonderful.
THANKS ALL! Jane
I'm at exactly 11 weeks post-injury today. My lingual nerve on the right side was damaged by an anaesthetic injection, and I've had a numb tongue and no sense of taste on that side since then. I was horribly depressed for a couple weeks after the injury, but decided to give it time. After 8 weeks and no change, I started to sink back into depression mode.
ReplyDeleteAs much as I appreciate blogs and forum posts by other sufferers, I try to avoid everything on the subject because it just make me feel worse. I've read all the journal papers and know that most injuries are resolved within 8 weeks, and while healing can occur for 3-4 months, absence of progressive improvement is a pretty bad sign. I know they don't do surgery for this type of injury, so I'm stuck with whatever healing my body can muster. I'm running out of hope, and it really bothers me.
I suppose I should feel "lucky" I don't have the neuropathy that seems to accompany a lot of these injuries.