I can feel the faintest hints of pain in my teeth - and yesterday my lower teeth felt like they couldn't bite - like they were too weak
i'm worried i'm going to make it worse just by how scared i am of it coming back - i've had four good weeks, i know it can't last forever, it never does
i'm hoping it's nothing and it'll go away again - the fear is horrible
Hey all, do any of you suffer with pain in your fingertips? It feels like it's directly under my fingernails - and they get colder than my other fingers when it happens. the actual skin on my fingertip is also kinda numb
i don't wear polish, so its not anything to do with that
my fingertips were the first place my numbness spread from originally 7 years ago too
So, having had my MRIs last week, it's been confirmed that I don't have typical TN - there is no nerve/vein interaction, which is awesome.
The bad news is there's more lesions on my brain & spine than last time, so it's definitely MS - just waiting for my neuro appointment to confirm my doctor's diagnosis now.
My TN mega-flare is over, the prednisone made it go away, so I just have tiny ache in the cold, and tiny zaps that don't get worse, which is what amitryp has always done for my other nerve pain.
At least my stupid TN is quiet at the moment 🤞🏻 and I know that prednisone will shut it up if it happens again, and that my MRIs are in my health record, so if I get any more nerve pain or weird nerve symptoms I can go to the A&E and they'll know to give me prednisone due to all the lesions.
Finding it hard not to be sad today though, I did not expect so much to be found on my MRIs...
My amitriptyline isn't up to strength yet, so when I had a mega burst of zaps and just fell apart - heat wasn't working, cold didn't work, tigerbalm barely did anything - i took myself to the ER.
They felt sorry for me, knew I was in real pain, but basically couldn't help much. It immediately went to "is it dental"...
I went home with some Endone - which is keeping me from screaming basically - I can tell that it's buffering the pain, I'm just hoping it can last until my meds properly kick in, because this forking sucks.
I am currently down to luke-warm mooshy things and slightly cool drinks - I cant even eat porridge, or drink tea ☹️
While my meds slowly start to work off the back of a horrid flare - I am trying to analyse how I am feeling so I know what might be this and what might be something else...
I have noticed that just before a nerve pain surge (the weather is horrific at the moment, wild winds and rain on and off all day every day) hits me, my cheek bone is very sore to the touch.
I've had it confirmed that my teeth are fine, there's no abscesses or infection in my bones, sinuses are totally fine, this appears to just be on the cheek skin itself, but only over the bone.
The evil has receded to inside my ear at the moment... but I am alternating between TN style pains that just punch at me in a crescendo (and as one hit just then I realised that it hits me in the spot that feels tender to the touch) and the atypical constant burning crap.
I am feeling a little positive that I may get a diagnosis at the end of all of this messing around. 🤞🏻
Since my maxi-fac thinks I have some kind of auto-immune thing, he has put me on LDN & amitryptaline
Are any of you taking LDN?
So I currently have a non-diagnosis style diagnosis since my maxi-fac visit.
"atypical facial pain with multiple neurological symptoms"
... yay
next steps; brain MRI, full spine MRI, TMJ MRI & all the bloods
good things; all my dental work is excellent, no infections, no problems on any of the work done, "not consistent with TN symptoms"
bad things; still no idea what it is yet, or what causes it
neuro in a couple of weeks time, so I'll get all those done before then
My twinges started at 3:30pm, just gently - the air was getting colder, the wind kicking up...
I'm in between having stopped taking the tegretol and hopefully getting some amitryptaline from the specialist tomorrow - so all I have is paracetamol and some mobic left over from earlier...
then the rain started.
it's 6:30pm and my pain is climbing - from like a 1 to a 3 during the day depending on what position my head was in - to like a 7 right now, mostly in my bottom jaw (but it will shift around from ear to top jaw to temple)...
last night it didnt calm down until past 10:30pm... i had to take 15mg of mobic and some valium and i think tonight will be another valium night.
i really hope the specialist is worth it - an oral maxillofacial surgeon, who i hope has had some TN experience 🤞🏻
i get so sad and scared at night and feel like i'm trapped in this pain vortex... scared how high the pain will get each night, all i can do is just distract myself.
or try to.
I had to stop taking the carbamazepine due to digestive grief, so my TN pain has been creeping back in as well as a flare of my MS symptoms due to the cold air at the moment...
I was just trying to distract myself from the mounting pain when my jaw went in to spasm and went from side to side twice.
Son of a banana
Now I have TN pain in my top and bottom left, and an aching joint on the right from the TMJD or MS related spasm I just had...
so. much. fun.
Do any of you have a time of day you dread?
My pain kicks in gently at about 3pm, and grows until about 7pm and stays that way until I manage to fall asleep, and then by about 5am it's gone for the day.
It gets dark quite early here, do any of you get worse in the dark?
So I have been suffering with horrendous lower GI distress since upping my Tegretol dose to 200 twice daily - and I was dealing with it since - I thought - my pain was receding...
I went to the dentist on Monday and had the evil tooth out - it turned out to have an infection in the root as well, so despite the agony of a flare and having a tooth out, I was happier all things considered.
It had receded so much today that I actually thought that I might be going in to remission.
Stupid me.
I had a little twinge in my other ear/joint/side... just a little one.
I go to bed, early as I have been lately, but my teeth all feel... sore, like I've been clenching my jaw, except I haven't.
Then I wake up with a searing pain in my not-normally-sore jaw, and now as I write this I have searing pain in my left hand side, and rising pain in my right hand side...
How much of this do I have to endure?
Just really wish everyone (ironically not doctors/dentists) would stop acting like just one more trip to the dentist and it will all magically be over... "you can stop taking those horrible tablets".
Telling me that specialists won't be able to find anything, or that it'll just stop hurting is why I don't share my feelings about stuff, or even talk about how shit the pain is.
If anyone in my life had this constant pain things would be very fscking different, but it's always just me...
Just so tired.
Had my last evil tooth out today, so that's the end of the dental excuses. I am glad it's out, but predictably my face is on fire and I hate everything and just want to cry... I know it'll get a bit better in time, but today sucks.
So, this flare has been going on for four weeks since my last dentist visit for a filling. He gave me dexamethasone to calm my jaw joint down - it was a glorious week of 6 level pain and thinking that my TN was calming down.
It wasn't. As I tapered off the dex, the pain became a 9, but I still believed I had two types of pain causes - the TN zappy nerve spasm pain and the ache from inflammation, an arthritis maybe as my cheek is swollen around my jaw.
Back off to the doctor I trot, hoping she will give me more dex - but no, it's bad for me due to blood pressure. However, I can take up to 400mg of the Tegretol. She tells me she believes that all my pain is the TN, and I get a new referral to a private health neuro this time, as the stars align and I can briefly pay for it.
Day 1 - first dose, I am a believer... for two hours, then it's back.
However, 4 days in of taking 200 twice daily and it is finally to a level where I am only feeling breakthrough pain at night but it's a dull ache and about a 6 down from a 9 and it only lasts maybe half an hour.
Also I found something that takes that 6 down to nearly nothing - tiger balm red, not sure you can get it there, but there will be some kind of liniment or balm that will do the same trick - it confuses my nerves I think. It needs to be the kind of massage balm that gives a hot feeling, I don't think the cold feeling ones will do the same trick.
The up/down side is that I now believe my doctor that all the pain is indeed nerve pain, not anything else, despite how much I want to believe it's just a temporary thing...it's not.
I have a tooth to be removed tomorrow, so my joint and my face are going to feel absolutely wrecked again for a week, but I am hopeful that with the dead tooth gone, maybe one source of pressure/inflammation on the nerve will be also gone. 🤞🏻
Hey all,
I just went up from 100mg "as needed" to 100mg twice a day for a while to 200mg twice a day...
Do any of you suffer from distress downstairs? waves vaguely towards lower GI tract - I've had IBS for decades but not quite this bad before.
Is it likely to be the tegretol? I feel like an alien has taken up residence in my lower intestines...