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Hello, I hope that I am posting this in the right section, my apologies if not.
Around 3 years ago I developed a severe pain in my face, primarily my lower right jaw, spreading from the joint of my jaw down to the bottom of my face by my ear and all the way across and down to in between the bottom front teeth (affecting all my lower gums/teeth on that side as well) although sometimes I get it in the upper teeth, cheek and jaw, occasionally it affects my lower left as well (not at the same time). I went to my Dr after a couple of weeks as it had gotten too much to bare, the pain was on and off splitting pain for a minute or so then relief then pain then relief etc. The Dr said I had neuralgia and prescribed gabapentin 3 times a day. I took the medication and after a few weeks I felt better.
A few months later I went back to the drs but saw a different Dr, this was for a different issue, however she enquired as to why I was on gabapentin after explaining it to her, she said that it was unusual for someone of my age (18 at the time) to be on that kind of medication long term and told me to stop taking it and restart the medication each time my face flares up. So for the last 3 years that is what I have been doing. The pain will flare up, and as soon as I feel it I take the meds and after a couple of weeks it subsides again, the pain isn't usually as bad as the initial flare up, but each flare up is pretty taxing.
It flares up probably every couple of months, although that can alter to every few weeks or about a week or two after stopping the medication, sometimes it isn't too bad other times it is awful, I find that the cold/ draughts definitely triggers it so wearing scarfs and snoods is a must, its worse in winter, ice cream, cold drinks and really hot drinks can also trigger a flare up, so I use straws to drink most of my drinks which seems to help, also if I get the beginnings of a flare up and start to feel pain then using hot water bottles or those microwave animals (like with lavender) help.
I have been able to manage it okay for the last few years but I have been finding it harder as it distracts me and can limit what I do as for the moments of pain I usually stop everything, become silent and try to not be consumed by the feeling of a hot poker being shoved through my jaw or an almost itchy knife slicing away at my gums. Sometimes I have an ongoing pain for a couple of hours that is like a burning throb, it will get worse to a sharp throbbing burn then eventually stop. When the pain stops its almost euphoric. Then the entire area will often feel kind of stiff and strange but not painful.
A few weeks before Christmas I went back to the Dr as I had a flare up that just wasn't going, the Dr (a third different one) strongly disagreed with what the previous Dr said, saying I should be on medication full time and the constant on/off isn't good and it's why I'm not feeling much relief and each flare up takes so long to go, as it takes a little while to get into the system and shouldn't be used as an instant relief type medication. She said to take the gabapentin 3x daily for a month and if there were still problems to come back and the next steps would be taken with perhaps a referral to a neurologist.
The build up to Christmas was quite hectic for me, additionally I do suffer from a few mh problems and find that remembering to take medication can be a little tricky, usually I'll set reminders and have an app on my phone but with the intensity of the Christmas build up I didn't take them as regular as I should have. However the week before I really started so the last 2 weeks approximately I have been taking them regularly but it really doesn't seem to be helping, I've also used naproxen and co-codamol with very limited effects (they help any headaches/cramps but don't really help my face), the pain fades a bit but the last few days have been quite bad.
It's been waking me up and the pain is almost a constant throb for several hours then it will get worse then back to throbbing then worse burning then just throbbing then worse and then a sort of dull throb which slowly goes and turns into stiffness and then no pain, after this I feel kind of euphoric and spaced out, like I'm not quite connected to my body, I am not numb but I feel strange. Sometimes I'll be dizzy and light headed. Eventually it with go and for several hours I'll feel okay until it all repeats again.
Additionally I don't feel quite right within myself, I keep having dizzy spells when I stand up, especially when getting out of bed, I get regular headaches/migraines and I feel exhausted, my hands don't always work quite how I want them to like when I'm trying to use tweezers or pour something they will shake or if I'm typing I'll press the wrong letters either because my finger has twitced or I've meant to press a certain key in my mind but I've pressed a different one instead, I do a similar thing all the time when talking, I trip over my words and mix letters up, so I'll try to say something like 'little puppy' but it will come out like 'pittle luppy', sometimes I see like little spots in my vision like a flash out if the corner of my eye but when I look nothing flashed or like glitter is floating in the air like little spots. That only usually happens when I'm quite tired, but i do feel tired most of the time now, I also hear snippets of conversations in my head that don't make sense just as I'm falling asleep. I am also asthmatic and have IBS.
I keep trying to explain these away as just being tired or being anxious/depressed, my family keep pressuring me to get things sorted as they say its not normal/too young etc, I am not a big fan of the Dr and always worry they'll think I'm making things up or exaggerating, so I don't tell them everything just the main points, but they've been affecting me for over a year and I just don't feel right, I'm starting to wonder whether everything is connected and I don't really know what to do about it. I known I really need to go to the Dr and I'm going to try to go next week.
I'm sorry this was so long and I'm not really sure what I'm hoping to come out of this, but thank you if you read this all and I hope you're enjoying the season x
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