Can Trigeminal neuralgia return?

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I had trigeminal neuralgia about 4 years ago i was treated with Tegretol and it worked, so have just forgotten about it!

This morning had a hit cup of tea and i have i have exactly the same symptoms! i am worried as i remember the pain?

Does it return? Will have to return to docs in the morning and hopefully they will give me some more tegretol. Until then what is the best pain killer?

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  • Posted

    There are a few medications for TN never pain but all are in the same family of medications. your doctor may try different names ( all basically the same medication but with slightly different compositions).

    you will need to tell them which one has the best , comparing the benefits to the side effects .

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  • Posted

    I have had severe tooth pain for 25 months. upper and lower jaw. Also head pain. have gone through all the tests. Neurologist says its not TN. ,but phantom tooth pain. I had all of my upper teeth pulled, and two of the lower pulled. No relief!!! I can get NO ANSWERS!! I TAKE SYMBALTA 30 MG. a day, and five tylenol. doesnt touch the pain. Iam in the process of changing Primary care DR. very discouraged !!! Ive never been on Tegretol, or any other med. for TN. Ihabe had other DR. tell me it is TN. dont know what to believe anymore!! Good luck to you. I know how painful, and emotionally disturbing this is. ❤

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    • Posted

      So sorry Janice. I am going through the same thing with most all my teeth. I keep pain in all of them top and bottom from about half way of my teeth forward. The jaw teeth don't seem as bad. Dentist I have been to say they can't see any thing wrong. I just went for a cleaning and I have no cavities. I have been having trouble for almost three years. I have been treated for TN with several different anticonvulsants, muscle relaxers and a few other things with no help. I have been to numerous doctors. The three neurologists I have been to: one said dental, one said TN and one said he didn't have a clue. I don't have the symptoms of typical neuralgia. I don't have phantom tooth pain. My teeth hurt and stay sore and hurt to the touch all the time. Right now I don't know what to do or who to go to. My gp has basically thrown it in my lap. He doesn't

      know what to do. I mentioned about going to the diagnostic center in Houston. I don't know .

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    • Posted

      Hello John,

      I have been through all kinds of tests. Neurologist told me the same. except he said Ihave phantom tooth pain. Since then Ive learned that is a go to response when they dont know whats wrong!!! I also had the problem left in my lap. No one can seem to help. my GP. has put me on lyrica. helps somewhat. need to have that upped. Ihave had this for two and a half years. Its horrible. pain is relentless!!! I even had most of my teeth removed, to no avail. Emotions are bad, had a breakdown last winter. Very hard to cope with anything now. I dont know what to do anymore. I guess just hope for a med., or a miricle.

      Best wishes to you.

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  • Posted

    Our Doctor said to take Tegretol 4 times a day, 7am 12pm 5pm and 9pm (every 5 hours) and to take them every day even when the pain stops, this works . Tegretol is Carbomazepine .

    I had typed prior to this one don't know if it went thru or not. I hate to say that this started in 2006 and has been on and off for all the years since. Moira.

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  • Posted

    Hello There,

    I'm so sorry you've experienced a return of T.N. Unfortunately , in many cases this does happen. I'm sure that you doctor can prescribe an increase in Tegretol. This is the most effective drug for T.N but if the symptoms get worse ask for an appointment with a neurologist who is the best person to advise about further treatment. I know this can be a very depressing disease but don't despair. In my opinion some people do have milder attacks. Try to stay positive and keep on top by asking advice from the professionals as much as you feel you need it.

    The Best of Luck with it. God Bless


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  • Posted


    Where to start? Yes, TN comes back, often with a vengeance. Sometimes it never comes back. More often than not the pain is far worse and more difficult to deal with each time it comes back.

    The standard treatment is carbamazepine, there are other options in the anticonvulsant category such as: Gabapentin, pregabalin and lamotrigine amongst others. Baclofen has helped for some. Low dose antidepressants can be of help too, such as Amitriptyline, nortriptyline and others. These types of drug block the impulses leading to the pain episode and dampen the severity of the pain respectively.

    To be blunt when the pain comes there is very little that most people have in the medicine cupboard which will help at all. Most prescription pain tablets have, at best, a dulling effect. Opioids are often ineffective. Sounds awful doesn't it? Well the truth is that it is awful, in fact it's a B'stard of of a condition!

    There are ways to help oneself, though. I use the hottest hot water bottle and put it directly on the site of pain. Some people use acupuncture, homeopathy, physiotherapy, avoidance of food types, dietary supplements, CBD oils and so on. The best thing, though, is to avoid your triggers. I appreciate that you're only at the outset of this condition and your triggers are not known to you just yet. We'll, there is a long list! Breezy weather, cold, fans wafting over the face, eating, talking, drinking, certain facial expressions, cleaning the teeth, shaving, showering, and so on. For some it's one or two things but for others there are many triggers. You will get to learn which ones as time goes on if you are one of the unlucky people who have the condition for a long time. You may be lucky and go into remission.

    The best advice I was given was to research EVERYTHING to do with TN, and to set an alarm to take the drugs on time every time. Carry them on you wherever you go!

    Wishing you well and good luck finding your solution 🤗

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