Hi, I've just come off Lamotrigine due to unmanageable side effects and am looking for a new drug to help my TN1. I'm currently on Tegretol (600mg) and that works well up to a point, but I have a lot of residual mouth pain (interior) that displays itself as tooth 'sensitivity'. It's very uncomfortable and will only get worse now that the weather is changing.
I am still currently persecuted with bad headaches (I've only been off Lamotrigine 4 days) so I will have to wait till the side effects settle down, plus I desperately need a break from them anyway as they made me miserably ill. But once that's settled I want to try adding in something else to see if I can get my mouth more comfortable and functional (I cannot eat on the TN side at present).
Is there anyone out there who has TN1 or similar mouth pain/sensitivity who could suggest a drug that might work/be well tolerated?
I know this last one is really tricky since everyone is different (most people can tolerate Lamotrigine - I couldn't even tolerate 25mg!), but I will happily take any suggestions - even If it is just for 'most popular'. I'm particularly looking for a drug that doesn't list headaches or nausea on its 'most common side effect' list. I just couldn't stand any more of that!
If it’s burning mouth pain…I am taking amitriptyline for it. and well really teeth pain in general. The burnin is so bad I don’t notice the rest of what’s goin on, but the amitriptyline makes me better!!!
Hi Kc, I saw your post on commonly used meds a while back, but it more or less contained all the anti-convulsants in use currently! Plus some pain meds as well, I think, which are no use to me at all. It felt too general to be really useful at the moment. I was really looking for something more specific for use in TN1.
It's really annoying - a while back I came across a pie-chart showing the most popular anti-convulsants with all their percentages of use, but I have NO idea where I saw it now. I've been everywhere, trying to find it. Oh how I wish I'd kept it. I figured that if I could find it, I could simply work from the top and make my way down through it - it would be as good a place to start as any!
Yours is a great list, but it's actually too comprehensive to help me make a decision. Unless, of course, I simply stick a pin in it. But if you have a different list from this one, yes please, I'd love to see it.
Hi Min, no, I don't get burning pain. Mine's feels like tooth sensitivity, to hot and cold, and sweet sometimes. It feels like it's 'lit up', hyper alert to temperature changes (and breezes). Lamotrigine worked really well, albeit briefly, but it made me so ill I couldn't stick with it long enough to get useful results.
Min said:
If it's burning mouth pain...I am taking amitriptyline for it. :-) and well really teeth pain in general. The burnin is so bad I don't notice the rest of what's goin on, but the amitriptyline makes me better!!!
Oh wheres the list of favourites,i couldnt see them,or am i having a blonde day. I would like to see the list as my teeth are affected,flippin eck,i'd do anything for my teeth to feel normal for one day. If they felt normal,i think i'd feel normal (forgotton what it is). I have ordered 2 things now,nerve fix and emla cream. heres hoping for relief............
Hi Barbara, I know exactly how you feel. Because my TN dulls down to 'tooth sensitivity' when on meds, my doctor, dentist and even neurologist don't really treat it that seriously. I've taken to referring to it as my interior mouth pain to discourage them thinking it is somehow normal. I can't remember exactly where KC's list was now. But it's on the discussions, about 3 or 4 pages back. If you just start at page 1 and go through them, you'll find it quickly enough.
But I'm curious, what is "nerve fix" and "emla cream"? I haven't heard of either of those.
barbara said:
Oh wheres the list of favourites,i couldnt see them,or am i having a blonde day. I would like to see the list as my teeth are affected,flippin eck,i’d do anything for my teeth to feel normal for one day. If they felt normal,i think i’d feel normal (forgotton what it is). I have ordered 2 things now,nerve fix and emla cream. heres hoping for relief…
I am on Tegretol 800mg slow release and have recently added Baclofen, 25 mg daily, to try and manage the internal pain. It has made a small difference. I am tolerating it well. I am extremely med sensitive and even after 2 years I still struggle with mental dullness and dizziness. I would rather have that than pain though. I wish you all the best with your meds and hope this results in many pain free days ahead.
I also suffer from the teeth sensitivity. In fact, when my attacks start, I feel like I need root canals in several teeth. When I first started suffering from TN1 in 2006, I had three root canals! So most of my pain refers in my teeth. My successful cocktail is Tegretol, Neurontin, and Cymbalta.
Nerve fix is a natural tab i saw recommended somewhere,im not sure if it was on here as the brain is quite fuzzy of an evening (all day really,im being kind to myself). Apparently it takes the pain away,ive never tried it,but got it off amazon,and i think i see some on ebay,some say good,and very good,some say didnt work.But then we are all different,some can take anti seizure pills,some cant.Anyway i will give it a go.The emla cream also was recommended,it 'numbs' the face and is usually used for people with needle phobia,its an anaesthetic.I got mine off chemist direct,however i did get e mail to ask why i wanted it ,i did say facial pain,but chemist wanted more detail,all i can give is facial pain,so am not sure if it will be sent. I want one pain free day,of course,i want lots of them,but just 1 day for now would be very welcome.I havent tried my cymbalta yet. I am not sure to take in evening and risk being awake as apparently makes you fidgety,or take in the morning with my nortriptyline and risk being tired,trouble is i drive alot. Ponders,someone else can friggin drive. I just want the pain from teeth to gooooooooooooo
Woman with the electric teeth said:
Hi Barbara, I know exactly how you feel. Because my TN dulls down to 'tooth sensitivity' when on meds, my doctor, dentist and even neurologist don't really treat it that seriously. I've taken to referring to it as my interior mouth pain to discourage them thinking it is somehow normal. I can't remember exactly where KC's list was now. But it's on the discussions, about 3 or 4 pages back. If you just start at page 1 and go through them, you'll find it quickly enough.
But I'm curious, what is "nerve fix" and "emla cream"? I haven't heard of either of those. barbara said:
Oh wheres the list of favourites,i couldnt see them,or am i having a blonde day. I would like to see the list as my teeth are affected,flippin eck,i'd do anything for my teeth to feel normal for one day. If they felt normal,i think i'd feel normal (forgotton what it is). I have ordered 2 things now,nerve fix and emla cream. heres hoping for relief............
Nerve fix came from e vitamins.com,but am sure i tried amazon,but they wouldnt send to me,perhaps its cos im in the uk,and they are meds.......
Woman with the electric teeth said:
Hi Barbara, I know exactly how you feel. Because my TN dulls down to 'tooth sensitivity' when on meds, my doctor, dentist and even neurologist don't really treat it that seriously. I've taken to referring to it as my interior mouth pain to discourage them thinking it is somehow normal. I can't remember exactly where KC's list was now. But it's on the discussions, about 3 or 4 pages back. If you just start at page 1 and go through them, you'll find it quickly enough.
But I'm curious, what is "nerve fix" and "emla cream"? I haven't heard of either of those. barbara said:
Oh wheres the list of favourites,i couldnt see them,or am i having a blonde day. I would like to see the list as my teeth are affected,flippin eck,i'd do anything for my teeth to feel normal for one day. If they felt normal,i think i'd feel normal (forgotton what it is). I have ordered 2 things now,nerve fix and emla cream. heres hoping for relief............
I sometimes am so sure its my teeth that are the issue,but when i press or touch them,i dont have actual pain in them if that makes sense.They feel 'icy' and sensitive,and like my gums ache,and the jaw aches,but its always my teeth.
Stefanie (Rice) French said:
I also suffer from the teeth sensitivity. In fact, when my attacks start, I feel like I need root canals in several teeth. When I first started suffering from TN1 in 2006, I had three root canals! So most of my pain refers in my teeth. My successful cocktail is Tegretol, Neurontin, and Cymbalta.
I kind of agree with you, Min. I have no rational reason why, but I've always felt it would be good. However, I went to the neurologist today, which was a complete waste of time - in the proverbial way, I might as well have asked the cat - but she's decided to try me on Gabapentin. I had fancied that as my next drug of choice, so I'm going to go with that. Have to start somewhere. But I definitely have amitriptyline as my next port of call if Gabapentin doesn't work. Just have to think of a convincing argument for the doctor, one that doesn't involve me saying' It just feels right.'
Min said:
I still think amitriptyline is worth trying for teeth sensitivity.
Hi Patty, I was very interested to hear you are using Baclofen. I just looked it up and I see it's a spasm relaxant. I'm having tremendous problems currently with a stiff neck, which I think is playing no small part in these migraines the Lamotrigine has created. I might ask my doc if I can try that if the headaches persist.
I feel you as regards the meds sensitivity. I've been on Tegretol for quite a while now and I still stagger about like an old drunk, and the overwrought emotions it seems to create are dreadful. I don't know whether it's depression with the illness or entirely drug induced, but I frequently feel bizarrely suicidal. I have a paranoid fear that some night I'll be on my own and just get one of my mad suicidal urges and throw myself off the veranda!
I'm too embarrassed to bring it up with the doctor because it's hard enough being taken seriously with a 'real' problem without introducing 'crazy' to the mix. I saw a neurologist today and it made me more depressed than when I went in. If she's not laughing at me for wanting better investigations, she's telling me 'good luck with that' when I ask about getting an MVD operation on the NHS (I'm in the UK). She is not good.
Patty said:
I am on Tegretol 800mg slow release and have recently added Baclofen, 25 mg daily, to try and manage the internal pain. It has made a small difference. I am tolerating it well. I am extremely med sensitive and even after 2 years I still struggle with mental dullness and dizziness. I would rather have that than pain though. I wish you all the best with your meds and hope this results in many pain free days ahead.
Hi Stefanie, it's always cheering to meet another sufferer on the tooth front. All my pain is inside my mouth and doctors seem to be of the impression that TN is in your face, so mine is somehow not authentic, or it's a lesser symptom. But just from being on this forum, I've discovered how very common the whole tooth thing is. When you consider that one of the tell-tale signs is that TN sufferers often go to their dentist first, why are doctors so surprised by this? It's true what they say, it's a greatly misunderstood disease.
I don't know Neurontin and Cymbalta, so I'm just going to look them up - thanks for those. I know it doesn't mean much when drugs are good for one person, but it kind of gives you some ideas to play around with. The doctors aren't doing too well with their suggestions so far!
Stefanie (Rice) French said:
I also suffer from the teeth sensitivity. In fact, when my attacks start, I feel like I need root canals in several teeth. When I first started suffering from TN1 in 2006, I had three root canals! So most of my pain refers in my teeth. My successful cocktail is Tegretol, Neurontin, and Cymbalta.
Good luck. Hoping for pain free days for all!
Hi Barbara, I had a look at Nervefix. It's a homeopathic remedy and I don't believe in those, so even if it did work, it wouldn't for me because of the nocebo effect, i.e. I don't believe they will work, so they won't! You should be able to get the Emla cream here from your doctor though. I discussed it with mine but we decided against it because all my pain is inside my mouth, so I got Lidocaine gel instead. It turned out to be Iglu, I think it's called. It's for mouth ulcers. I was most disappointed! I haven't used it yet. I can't see it helping somehow, since my pain always feels like it's in the tooth itself, going down into the nerve. But who knows, I may use it in winter and find it priceless!
I know where you're coming from with wanting the tooth pain to go. I haven't eaten on the right side of my mouth (the TN side) since my pain started. It's annoying, to put it mildly. And I am not looking forward to winter. I haven't had this during a winter yet (mine's started in Spring), so I am dreading dealing with cold winds and temperature changes. They were bad enough in Spring. I think it's going to be mugger's balaclavas.
barbara said:
Nerve fix is a natural tab i saw recommended somewhere,im not sure if it was on here as the brain is quite fuzzy of an evening (all day really,im being kind to myself). Apparently it takes the pain away,ive never tried it,but got it off amazon,and i think i see some on ebay,some say good,and very good,some say didnt work.But then we are all different,some can take anti seizure pills,some cant.Anyway i will give it a go.The emla cream also was recommended,it ‘numbs’ the face and is usually used for people with needle phobia,its an anaesthetic.I got mine off chemist direct,however i did get e mail to ask why i wanted it ,i did say facial pain,but chemist wanted more detail,all i can give is facial pain,so am not sure if it will be sent. I want one pain free day,of course,i want lots of them,but just 1 day for now would be very welcome.I havent tried my cymbalta yet. I am not sure to take in evening and risk being awake as apparently makes you fidgety,or take in the morning with my nortriptyline and risk being tired,trouble is i drive alot. Ponders,someone else can friggin drive. I just want the pain from teeth to gooooooooooooo
Woman with the electric teeth said:
Hi Barbara, I know exactly how you feel. Because my TN dulls down to ‘tooth sensitivity’ when on meds, my doctor, dentist and even neurologist don’t really treat it that seriously. I’ve taken to referring to it as my interior mouth pain to discourage them thinking it is somehow normal. I can’t remember exactly where KC’s list was now. But it’s on the discussions, about 3 or 4 pages back. If you just start at page 1 and go through them, you’ll find it quickly enough.
But I’m curious, what is “nerve fix” and “emla cream”? I haven’t heard of either of those.
barbara said:
Oh wheres the list of favourites,i couldnt see them,or am i having a blonde day. I would like to see the list as my teeth are affected,flippin eck,i’d do anything for my teeth to feel normal for one day. If they felt normal,i think i’d feel normal (forgotton what it is). I have ordered 2 things now,nerve fix and emla cream. heres hoping for relief…
Hi again.Yes i get it that you dont wanna try herbal stuff,i prefer to try them as i dont like 'proper meds',however nortriptyline at the time saved my life really.I dont really want to add proper meds,but i have cymbalta to try,its the tooth thing,drives me bonkers.I bought emla cream today,not tried it,i did order it off chemist direct but they declined to send it as it was being used for 'needle phobia' and to stop feeling the needle going in.Not tried it yet.I always wait till i get home before trying anything new,it kind of makes me feel safe (wonders if we have all developed those ways)The winter last yr brought me to my knees 'almost'.It wasnt even that bad either,but i was newly into my new found pain,and hadnt started pain meds,so for 3 months i was getting through the day without nortriptyline,and only took paracetomal and other pain relief,i dont remember getting relief though.I bought a scarf,closed car windows where the draught would hit my right side,and had a microwave wheat bag. I also had IGLU like you,i found it to be of no use,but again i was at a stage where i didnt know what this pain was,my gums hurt,i wanted it to stop,i guess it did mildly. Have a go,but its odd ,its like a waxy consistency,maybe i put too much on.You could try clove oil directly on teeth and gums,now that does help,but its horrible,but it did soothe if only for a bit. I am finding out new things on here daily,so am glad i found this site.
Yeah, winter - I quake with dread. I try to remain upbeat about it, and remind myself I'm on Carbamazepine, and I haven't (really) had an electric shock since I started it, even on a measly 200mg, but I just know it's going to be harder. since I stopped Lamotrigine, the pain has got worse inside my mouth again, so I'm not exactly thrilled at facing cold winds, icy rains and huge temperature changes indoors/outdoors. But hey, these cyclist face mask things look like a good option, and they might give me some street cred, especially at 57!
I 150% understand why you don't want the hard drugs. They are ferocious and not to be joked around with. So far I've had no luck getting to a high enough dose of anything to be helpful - side effects always floor me, and I'm fairly resilient. I've had everything from the aforementioned splitting, life-ruining migraines to crazy hallucinations, and a million other nasties besides. Nope, if there was a natural cure I'd be jumping at it, but I fear this disease is too damaging for gentle resources.
and well really teeth pain in general. The burnin is so bad I don’t notice the rest of what’s goin on, but the amitriptyline makes me better!!!