Is it normal for TN to breakthru w/ pain only a few days after titrating upward on Carbamazepine?

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Is it normal for TN to break-through w/ pain only a few days after titrating upward on Carbamazepine? It was pretty bad, last night-- I'd just raised dose on Wed; it took a few days to get used to lobotomy effects; effects better last night, but then, pain broke through, rather severely.

I have a bit of pain, now... trying to control it w/Tylenol and Fioricet. My PC doc put me on the Carbamazepine. I see him again on Tuesday.

I am beginning to wonder whether this is the drug for me...yes, I could go still higher (I'm only taking 600 mg. per day), but I become a vegetable for the first few days, each time-- and then, the pain breaks through again! Is this normal? I can't take most of those other drugs (have tried them before for other conditions, such as fibromyalgia and arthritis). All this is TN stuff is rather new to me; I haven't even seen specialist yet and been formally dx. (App't on May 1st). I have had this probably since October, but it only got super- bad the end of February; here it is, April (in October through January, I thought the pain was from two extracted, infected teeth).

(Also, the italicization and other word -editing things on that panel don't work on here, for me. )

Thanks!

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  • Posted

    Hi Linette. Sorry you are hurting friend. Unfortunately, as far as the Carmazapine or any other prescription drug or over the counter drugs like Tylenol, none of these are going to give you relief for long. I've had TN for past 4 years now, damage from repeated bouts of shingles on my face and in my eye, that damaged my trigeminal nerve. Narcotic pain meds gave me NO relief after my 2nd year having TN, which had me looking for other options. I'm using medical cannabis now and finally have relief from the pain. Hot compresses and heated rice socks help ALOT. Hope you are feeling better, friend. Take care

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    • Posted

      I understand. never thought i would EVER try medical cannibis . Still hard to believe at times but it has given me my life back. I know it's not for everyone though. As for the hot compresses, i keep several socks filled with rice, handy in a shoe box and wash cloths in a bowl. Whenever i am between doses, when i am having some pain, I hear both up in the microwave and alternate from moist heat to dry. Important that after you use moist heat compress from a heated wet wash cloth, use the rice sock as a compress to avoid your face catching a chill, bringing the pain back again and you back to where you started. Hoping this will help you. You take care, friend

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  • Posted

    Hi,

    Simply put, Yes! Unfortunately the nature of TN is that it is incredibly difficult to diagnose, treat and keep it under control.

    I'm at the end of a two and year period of continually upping the dose of carbamazepine and am currently taking 1400mg a day AND still struggling to get pain free. I have several difficult side effects from it and my sodium levels are low so my GP and I are reluctant to go higher. On the plus side I have now been started on Gabapentin to try and prevent the migraines that are triggered by the TN! It is beginning to have an effect on the migraines and the TN so fingers crossed 🤞 I'll have a few days or weeks with much less pain.

    Persevere with the carbamazepine and maybe you'll have more success than I have had. If you don't then perhaps consider Oxcarbazipine (I think that's the correct spelling). It has fewer side effects and is just as good. It is something that my GP and I have discussed.

    Best wishes

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  • Posted

    Two and a half years 🙄!! Damn predictive text! 🤣

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  • Posted

    Yes, I got it. I am having some problems typing on here, as well. : )

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  • Posted

    HI LINETTE

    I WAS DIAGNOSED IN 04 AND TOOK NEURONTIN FOR 2 YEARS THEN LYRICA UP TO NOW. LYRICA WORKED VERY WELL BUT I CHOSE TO HAVE DECOMPRESSION SURGERY IN OCTOBER AND I AM ONLY TAKING 50 MG DAILY. MY GOAL WAS TO BE LYRICA FREE, HOPFULLY I CAN ATTAIN THAT GOAL IN FUTURE. GOOD LUCK. MY SURGEON WAS AWESOME. GLAD I DID IT.

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    • Posted

      Hi, Carole,

      Thanks. I cannot tolerate either Gabapentin (Neurontin) norLyrica; took both for other pain conditions, years ago. Good luck with having had the surgery. I will probably have to do surgery, at some point. The pain is worse, today... it always seems to grow worse on weekends. : ( I am hoping I can still sing for Holy Week, but that will require a miracle, now. I am hoping this break-through pain is temporary.

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  • Posted

    Hello L

    Very sorry to read your post about trouble with Carbamaz. I’ve been through the mill with this TN1 saga so all I can do is maybe relate just a couple of points that may be of interest/use for you?

    Firstly and very importantly, everyone is different wrt their responses to drugs. It is not unusual to break through with any of these drugs. In my case I couldn’t take any of the ones listed by you and others on here, the only thing that worked was Carbamaz. Like you I titrated the dose regularly depending on how bad my symptoms were. After about 2 years I was in 1600mg per day - I could still function very well, no significant side effects other than a facial skin rash. Even then I had amazing terrible breakthroughs.

    Nothing really positive happened until my neurosurgeon put me in for a high resolution MRI scan and yippee!!!! there it was, a branch of the cerebellar artery compressing the root of the trigeminal nerve. That gave clear diagnosis of TN1 and so a whole raft of possibilities became available. We discussed in detail and because of the clear clinical and MRI diagnosis, went for the MVD operation. I was still on industrial amounts of Carbamaz and to be honest I would have done anything to stop the pain, even having complete resection of the nerve which would have caused facial paralysis.

    Anyway, the op was a great success, never looked back since then. Weaned off my drug over about 2-3 months and to be honest was pain free from the moment I recovered in the ward. Had very minor twinges as things settled down but by 3 months absolutely nothing. Got my life back.

    I think you said you were having some more clinical investigations very soon. Would highly recommend MRI to sort out your diagnosis once and for all. I see you’ve got a couple of other “whammies” which are obviously not helping (OA and fibromyalgia) but they should respond to some of the non-steroidal anti-inflammatories independently of any help from Carbamaz, which I’m not sure would do anything for those things.

    Good luck with your further investigations and I hope you get some good diagnosis and therapy options.

    By the way, don’t know anything about you of course, but please remember that age has nothing to do with suitability for surgical intervention. I was 69 when my MVD was done.

    Cheers

    Big D

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    • Posted

      Big D,

      Thank you for your reply. I have never heard of Carbamaz! Are you in UK or US (or where?) But I will tell you that the local CVS doesn't like to stock Carbamazepine very much; they have been giving me half my script... and have already switched manufacturers on me... I think I like this batch, better!

      I cannot take anti-inflammatories either-- I take some other stuff... I have asthma and stomach issues, too.

      It is good to hear that you had the MVD at age 69; I keep reading about "good candidates", and so forth. Well, we'll see.

      Just out of curiousity, how did you get away w/ 1600 mg. per day? I mean, did doc and pharmacist agree? Well, you don't have to answer that one.

      I am feeling much better, today! In fact, I was able to sing w/ my choir at church, today (didn't think I'd be able to). It's amazing how this pain can wax and wane so suddenly.

      Well, dinner time.

      Happy Palm Sunday for those of you who are doing Holy Week.. pre Easter greetings; happy Pesach in advance, too (for those who are Jewish),

      L.

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  • Posted

    Hello!

    I'm in UK and Carbamaz is just a typing abbreviation for the drug. My neurosurgeon monitored my doses of it and supported me titrating it to gain the best effect. I'm a big bloke and so could tolerate the high doses. But I still had breakthroughs.

    I'm in UK and had MVD in March 2017 at Addenbrookes Hospital Cambridge.

    Keep in touch

    Big D

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    • Posted

      Hi, Big D... I see. Thanks for the explanation. Well, I am in US, and the so-called health care system is a MESS! So I really don't know, at this point, what they will recommend-- or what my insurance will cover. From what I've heard, I do think you all have a better system, over in UK.

      I see my PC Doc tomorrow; no doubt, I will have some "baseline" blood tests. The pain on Carbamazapine for me does seem to wax and wane, but for the most part, it deadens it; all I feel is pressure (except for occasional "break thru pain"-- which is almost as severe as what drove me to take Carbamaz, as you put it, to begin with!). I am a bit worried about that, but I think I may be exacerbating it by tweezing facial hairs (blush). Or perhaps the pain would've come thru, anyway? It's hard to tell. I am doing much less of the tweezing; it's a bit of a nervous habit, at this point-- I should be way beyond vanity. I will have to ask doctor about this, but I keep forgetting.

      I should have caught the "Carbamaz" as an abbreviation. Duh.

      (And, does anyone care whether this Yank spells it "thru" or "through"? LOL.)

      L.

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  • Posted

    Nope, not at all / we can work out what each of us means!

    USA and GB are two countries separated by a common language (George Bernard Shaw, 1942).

    But we get on fine!

    The main thing is that you get a clear clinical and MRI diagnosis- only then can you start the road to pharmacological and/or interventional therapy. Good luck and keep us informed of progress.

    Big D

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    • Posted

      What a kind reply, Big D. Thanks.

      I don't know about an MRI, as I had brain MRI not long before all this began (for migraines; saw a neurologist around the same time). Then about a year later, had this occur. However, the neurologist wasn't helpful re: migraines, and we did not get along. But the point is, I don't know if insurance will cover yet another MRI-- unless they can focus only on Trigeminal nerve, perhaps? Also, I had just had sinus CT scan, back in January.

      (I suspect there is a connection between perceived migraine and TN?)

      We'll see what my PC Doc and the Specialist have to say.

      Also, I accidentally chewed one of the Carbamaz tonight as I was taking it-- (ER, but not a capsule). Will I turn into a pumpkin? LOL.

      L.

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    • Posted

      You'll know if there's a problem when hair starts growing out of your eyes. i chewed a carbamaz once and nearly became a European (we've no idea who we are at the moment and even the Scotts are thinking of leaving UK again after the complete fiasco of Brexit). So, I may become English in a few months!

      Good luck with your endeavours ( or endeavors, for you, I suppose).

      Cheers

      D

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    • Posted

      Hi, Big D,

      LOL! I am sorry I didn't see this, before; I was busy singing the Easter Triduum. . that was the only thing on my mind, plus trying to get my apartment cleaned.

      As it turned out, mildly chewing the Tegretol (Carbaz) didn't do anything of which I was aware. But Holy Saturday, I had some mild breakthru pain-- into Easter Sunday. It is gone today, though (Easter Monday).

      I don't know if your situation is worse with Brexit, or what is going on here (US), but... well, I guess I shouldn't discuss politics. Don't get me started! : ( (Impeachment, or not?)

      Well, I guess that's all for now. Oh: and I did have blood tests-- and passed with flying colors (colours?) I was surprised! It's amazing what the human body can go thru... btw: "thru" is not the usual USA spelling: it's normally "through". I'm just lazy. : )

      L.

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    • Posted

      Hi,

      I noticed your comment about perceived migraine and TN. I thought I'd mention that 'tic migraine syndrome' was suggested as a new headache type in 2004. TN attack occurs followed by a migraine some time later. This, in my case at least, then triggers further TN attacks over the next few days up to a week or so. It can occur in the presence of existing TN.

      Gabapentin is the drug of choice to prevent the migraine aspect, it also helps to reduce the TN attacks in conjunction with carbamazepine.

      Happy reading!

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    • Posted

      Hi, Susan,

      That is very interesting.

      In my case, the migraine that I got seemed to occur BEFORE my first TN attack (though I have had migraines since age 10, and possibly TN from before...). But I mean, the massive migraine after my tooth broke and before the first noticeable, horrendous TN attack. I thought I broke my tooth, but also had that weird electric shock; then went to sleep and awoke having to vomit (for 3 hours); then, the pain. So I am not sure if it is quite the same thing, but yes, I'm sure there may be a correlation. In fact, I think the facial specialist I will be seeing on May 1st (1st May) has published something about a connection between migraine and TN? We'll see; I plan to ask him about this. Thanks for your reply.

      As for Gabapentin, I used it for other conditions years ago; had akasthenic reaction the last time I used it. So I doubt that they would prescribe it for me, now.

      L.

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    • Posted

      Hi,

      I hope you had a good result from your appointment.😊

      I've had migraines, or rather I had them until I had a hysterectomy with removal of the ovaries too, and they were almost always hormone related. They stopped for about 4 years. As for the TN, well having thought about when the pains started it would seem that it's been about 14 years but got hugely worse about 2-3 years ago. So there's been a bit of cross over time wise with the TN and early migraine headaches. The main difference is that these migraines in the last year and a half are waaay worse than before. I get the weak and feebles, follow by vomiting and then the throbbing ache about 2-4 hours after an epic TN attack. And then, coz I'm just so darned lucky (😅), its the week or so of gradually peaking migraine, tailing off and going away all accompanied by more TN attacks. It's a laugh riot as you can imagine! 🤣 🤣 😏😢😢😢

      I must admit it was a relief to find the article about tic migraine and then to show my GP, who has been amazing! 😊

      Gabapentin has made a difference but I know many people find it causes a lot of trouble. You can perhaps suggest Pregabalin, it's more expensive but effective with far fewer side effects.

      Best wishes and best of luck.

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