Face pain getting worse

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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

2 likes, 11 replies

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11 Replies

  • Posted

    Hi Charr

    Wow! I feel really sorry for you. Unfortunately it's not unusual for TN sufferers to get this at a young age. I used to think it was just for old people, like myself. Although I'm now retired I've had TN for over twenty years.

    I know exactly what you're going through, with most of your symptoms, as everyone is different, but I feel some of it is the side effects of your Gabapentine. I was first put on Tegretol and had a pattern of 9 months pain, 9 months remission. Then I had a lovely 6yr gap. But when TN returned I could no longer take Tegretol because I had bad side effects. The Dr tried me on Two other tablets, one being Gabapentine, and again bad side effects, one being when I stood up my legs buckled, then I had to sleep for 2 hrs for it to subside. I'm now on Pregabaline. But I'm stationary at 50mg twice a day at the moment, as the dosage increase has to be taken gradually, the extra increase started to give me side effects so I'm stuck on 50mg. It only takes the edge off the pain, so I have to top up with Paracetomol. When my TN came back last yr I was ok on 200mg. But not this time around and my pattern is all out too.

    In my personal opinion Tegretol is the best, although not everyone can take them without problems. For me I was as sick as a dog, but once they settled into my bloodstream I was fine. I felt no pain and only had drowsiness at night.

    If you're still concerned request that Neurologist just to rule things out. Even go to the dentist just to get the all clear. Go back to your Drs and discuss your medication, as you are getting side effects and taking other medication with it, whereas you may be lucky enough to take just one medication.

    I also agree with your third Dr you should be taking them regularly not just as a pain relief at that time.

    Let us know how you get on, we're all here for you. Good luck.

    Kind regards

    Gloriana

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    • Posted

      Thank you for your reply sorry I haven't replied sooner I haven't been feeling too great. I had never even considered side effects of gababentin so thank you for your suggestion. I'm going to try and get a drs app tomorrow I am also going to have to go to the dentist, I have quite a severe phobia of the dentist so I'm going to go to the drs first and then see what they say. It doesn't quite feel like my normal flare ups as the pain is constant for a few hours with sharper pains that only last a few mins at most so its fairly new to me. Thank you for your help, I'm sorry to hear that you're in pain I hope something can help xx
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    • Posted

      Hi,

      How  are you getting on?

      I know what you mean re dentists. I don't particularly like them either. When I asked for them to check my right lower teeth, as I was getting a shooting pain straight across them, that felt like toothache in all of them. But the X-ray was fine. I carried on with Paracetomol but that pain has stopped now. I've also stopped the Lyrica I was on yesterday as I didn't like the side effects this time around. I'm now waiting for the worst to happen before I can see my GP. 

      How how did you get on with your Drs Charr? Has he referred you to a neurologist or given you alternative medication?

      Chat to you soon.

      Take Care xx

       

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  • Posted

    Hi Charr,

    I'm sorry you have suffered so.  I hope a remedy is found for you.

    I would like to share my experience with gabapentin.

    I have severe arthritis in my whole spine (neck to tailbone).  It causes constant severer pain in the back, neck, shoulders and into my legs, and I get bad headaches centered at the back of my head/top of the spine.  I was put on gabapentin three times daily by my VA doctors.  It did not help all that much but some.

    Meanwhile I began to have mind/memory/communication/emotional problems.  I thought maybe I was getting alzheimers early, it was so bad.

    After a couple years on gabapentin I met a guy my age that saw my symptoms and shared with me that he too had had those mind/mental problems until he got off gabapentin .  He quit cold-turkey - which a person on gabapentin is not suppose to do.  His mind/mental problems quit after getting off gabapentin .

    So, I did the same thing as an experiment:  I tapered off gabapentin and after being off it for a month or so found my mind/mental problems went away.

    When I hear of someone on gabapentin and I think my testimony will help them I share that getting off gabapentin helped my mind - in a major way.

     

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    • Posted

      Thank yuou for your reply, I'm sorry to hear that you are in pain. Like I mentioned in my reply to Gloriana I didn't even consider side effects to gabapentin, and I certainly didn't know they could cause things like that so thank you so much, I must admit I was also quite worried about talking about it to a Dr as I was concerned I either wouldn't be believed or it would be shrugged off as another mh thing. I do sometimes feel like I'm losing my mind and people have commented on things, so thank you for sharing your experience I will definitely mention to my Dr that I'm worried I may be having side effects of the gabapentin. Thank you for your help, take care xx
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  • Posted

    I am completely shocked that you have suffered for so long and seen three different doctors without any of them immediately referring you to a neurologist. You really must go somewhere else and insist that you are given such a referral immediately. Gabapentin is not for everyone. There are many useful drugs and several types of procedures of operations which may help you. If possible, take a male friend or family member with you as I have found that (unfair/wrong as it is) doctors take more notice if there are two people at the consult and at least one of them is male. Please do this as soon as you are able. You have been suffering long enough because of doctors who have not taken the time to be thorough and take you seriously enough
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    • Posted

      Thank you for your reply, unfortunately that is what my drs are like, you only have 15 mins and they are usually so busy, I don't like to make a fuss so i know that doesn't help in my treatment. The second and third ones I saw aren't regular Dr's at my local surgery they are locums, the second one I have never seen again but the third is quite nice and a really good Dr from the few times I've seen her, unfortunately going to another surgery isn't too easy as most of my local ones are quite heavily oversubscribed. I'm going to try to get an appointment with the same dr tomorrow and will take my mum, she can be quite demanding haha so hopefully that will help. Thank you for your help xx
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  • Posted

    Hi,

    Sorry you've had so much pain, especially being young. I'm an old bloke so it doesn't really matter too much. I've had TN on and off for over 20 years. Suddenly got this pain and doctor put me on Tegretol. Old story. After 6 months of no pain this year I thought I was cured  but no chance. Christmas Eve had the worse bout, took Tegretol and Lyrica but no relief. Even tried Panadol. Went to the dentist and had an injection - pure bliss for a few hours.So at the moment I'm not taking anything pretending nothing is wrong and shutting myself in my room drinking with a straw, with PC and TV. It only hurts when I touch my face or try to talk and eat although seems to be spreading to my right eye and ear. I'm surprised you haven't mentioned surgery. At your age that's the best option isn't it?

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    • Posted

      Thank you for your reply, pain at any age matters, I'm really sorry to hear that you are in pain, I hope something can be done to help xx

      Nothing concrete has ever been mentioned tbh, I went to a Dr 3 years ago after quite severe pain for a fair while, cried all over him rolleyes told him I really couldn't cope, was told its neuralgia given a prescription for gabapentin, told if it didn't ease off in a few weeks to come back and that was the end of it. I've never seen a neurologist or a specialist so surgery (or any other treatment) hasn't been discussed. I'm hoping the Dr tomorrow will be able to give me some kind of help. That k you again for your help, take care xx

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  • Posted

    HI, 

    A lot of your symptoms sound so familiar. I had a tooth extracted and after it was pulled  I had horrible pain in the tooth in front of the one that was extracted. Long story short, I ended up having  3 teeth extracted.  It has been a financial and emotional nightmare. The pain is exactly as you described. I have sharp porcupine needle like pain in my gum, burning sensation and one of my teeth is completey numb (feels like permanent novacaine is in there). It feels like that 24/7. The pain comes and goes daily.I am now having problems on the other side of my mouth and the dentist wanted to crown those teeth, which may end up with them being pulled. Now, I know enough to get a 2nd opinion before they are tampered with. 

    I saw my neurologist and she diagnosed me with  trigeminal neuralgia. Immediately she put me on tegretol 3 x a day(titrating up to that dose). I still feel the pain but it is less. I also take Lyrica for other nerve pain but that may also help.

    I do feel that these medicines should be taken daily at the same time in order for them to work most effectively.

    The tegretol makes me super tired though and I gained quick weight around my waist.  I wish I wa snot so tired. This is the kind of pain that truly takes over and people do not see it so they do not understand. My neurologist feels the trigeminal nerve was damaged during the extraction. i seem to have it daily with no relief. I am also starting to notice a drop in the side of my face where the back teeth were extracted.I can not put dentures over the gums because they hurt so much.  I have had this for 10 months now . I see my DR. again soon and she may increase the dosage I am on. 

    I wish I had a good dentist that was aware of this disease and it;s implications. I am trying to figure out what triggers this. (hot, cold,? ??, eating,?).

    It is a difficult thought to imagine that this pain will continue. Has anybody had TN and then did it stop  over the years?

    Charr, I would definetely recommend a neurologist who is familiar with this disease and who is consistently your doctor. Good luck!!

     

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    • Posted

      My mother had Tn which was triggered by a dental extraction in which the nerve was damaged. The Neurologist back then put her on Tegretol but after a while he said she would need an operation. She had the Op which I think was an MVD which he said would last for 5 years no pain which it did. After the 5 years she started getting the pain back again and he said she was now too old to have another MVD (over 70) so he did a different procedure which I dont understand exactly but I have copied from the net a description for you. "Glycerol injection is similar to PSR in that a hollow needle is passed through the cheek to the nerve. The needle is positioned in the trigeminal cistern (a fluid-filled area in the ganglion). Glycerol is injected into the cistern to damage some of the trigeminal nerve fibers that produce pain. Because the location of the glycerol cannot be controlled precisely, the results are somewhat unpredictable.

      Glycerol injection provides immediate pain relief in 70% of patients [2]. About 50% of patients experience pain recurrence within 3 to 4 years. As with PSR, partial facial numbness is expected and complications are similar.'

      When she had this op it gave her a fair bit of pain releif for about 3 years and then she was  back on Tegretol again. After that she moved in to live with me and for the last 6 yrs of her life was on 500mg Tegretol twice a day plus Baclofen which was not perfect pain relief but she said it was okay most of the time. She stayed in bed a lot.

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