Hi, I’m looking for advice from anyone who uses, or has used, non-epileptic (non-anti-convulsant) drugs for their TN, especially TN1. I have been in a fairly long period of remission (over a year) but my pain is coming back. It’s inevitable, short of a miracle, that I will have to go back onto drugs sooner rather than later. I am now getting 2 or 3 shocks a day as well as the general burning/sensitivity.
When I had my first ‘attack’, which lasted about 14 months, I was on Carbamazepine, supplemented with Lamotrigine and Gabapentin to no great success. Unfortunately I had drug-induced-lupus with Carbamazepine, albeit verrrrrrrrry slowly! I’d rather not use it again if I can find something else that would work. I am thinking of Amitriptyline or Baclofen, although Baclofen seems to work best if it is used with Carbamazepine.
Has anyone used Amitriptyline or Baclofen on their own, or combined with something which wasn’t an anti-convulsant? Or have you used some other non-epileptic drug that has proved helpful? (I’ve seen anti-psychotics recommended too) I’d really like to hear from you.
My recent house move forced me to change doctors and only today I was refused the B12 injections that have been helping to keep me symptom free for over a year. Aside from being deeply depressing (and infuriating), it now leaves me with an even more pressing need to sort out alternative medication. Any help most gratefully received.
I have TN2 that response to lidocaine patch
Yes, a lot of people who have TN2 use Lidocaine quite successfully. Makes zero impression on type 1 though. Those shocks pay no attention to a little numbing!
I’m type 2, so my advice may be minimally helpful, but I have had so many reactions I have tried nearly all the medication options for TN. Nortryptiline/Amitriptyline were best for me, but made me very sleepy and I hear they tend to be less effective on type 1, but are probably still worth a try. I was on Baclofen for about 3 weeks, but it caused intense leg cramps before I got up to a functional dose and I was switched off. I have not been on it myself, but I have heard of people getting some pain control from Cymbalta, might be worth looking into. My #1 best pain relief was on Lyrica. It is an anti-convulsant, but it had a very different effect and feel from the other ones I tried. Unfortunately it also quickly made me the most depressed and suicidal I have ever been, so I always recommend it with caution, understanding many people will not have the reactions I did. Good luck in your search, finding good meds took me 3 years and I will likely still need to make adjustments forever.
Thanks, Makebelieve. I had a sudden-window doctor’s appointment so I had to make a quick decision and I’ve gone for Amitriptyline, so it’s comforting to see you used it successfully. Of course, our pain style is different so it may not work for me - we’ll see. I’m only getting a few shocks a day at the moment, as opposed to the full onslaught of my original ‘attack’, so I’m hopeful that maybe something a bit lighter like this will work. He’s started me on 10mg once a day - can I ask what your successful dose is/was?
I’ll look into Lyrica and Cymbalta - thanks for the recs. They’ll have different names here in the UK, but I’ll track them down.
Nice to meet someone else who had suicidal thought problems with an anti-convulsant (not nice for you though!). I had those too and while I was obviously (very) depressed when I was first diagnosed these thoughts were different. I tried to explain them to my doc and my partner, but I could tell by their expressions neither of them got it. I’ve always been prone to depression so I’ve had my share of suicidal thoughts, but they’ve always been logical, as in you generally sit and think yourself into a blue (or black!) funk and then have the equivalent suicidal thought of ‘Nobody loves me, everybody hates me, think I’ll go eat worms.’ With the drugs that didn’t happen at all. I’d just be sitting there, reading or playing Candy Crush or something, feeling relatively cheerful, all things considered, and I’d suddenly think “I should just kill myself. I should jump off the veranda.” It was always that, for some reason, jumping off my veranda (4 floors up). When I was alone in the evening I used to get really worried about doing it some evening just on impulse. That’s not an easy thing to explain to a doctor!
I have more atypical symptoms: A combination of burning and shooting pains. My effective medications are a combination of Tegretol and Nortryptiline.
I have a friend who has the classic TN (She has had it for 20 years)She also experiences some burning like you. She did find Nortryptiline quite useful together with Gabapentin.
She found the Nortryptiline helped improve the more burning pain.
It’s always nice to find someone who’s experience proves you’re not alone, and not crazy.
As far as pain relief from the Anti-Depressants, I got full pain relief at 100mg, but the brain fog and sleepiness were so severe I dropped back down to 50mg, 25 morning and night. Eventually I got tired of still being sleepy all the time so I dropped to 25 Nortrip (I switched to this one hoping it would make me less sleepy, it was the same) at night and added in Lamotrigine 25mg morning and night. I still have breakthrough days, but most the time the 2 together at relatively low doses keep me at an “ignore-able” level.
I know exactly what you mean about the difference between my “natural” depression and suicidal thoughts, and the drug induced version. When they put me on the lyrica I had been in horrible 24/7 pain, barely sleeping 3 hours a night, for 4 months. That torture left me pretty depressed and suicidal already. But it was more a desire to be free from pain than a true desire to die. And I could rationalize it away. “My family would miss me”, “I would be throwing away my future”, etc. But the funk that that drug put me into was so different. For the first time ever I could not make myself get out of bed, even to go to get food from the kitchen. I had to mentally talk myself into going to the bathroom. And every few minutes, “please let me die” “take all the pain pills” “just stop breathing” “death sounds so great.” I actually spent the weekend watching every movie, TV show, and TED Talk I could find that discussed depression and mental illness, I knew what it was but I couldn’t figure out why it was so bad, so fast. It took 2 days for me to make myself call my mom, (I lived alone at the time, which scares me to no end looking back) she suggested a drug effect immediately, looked it up and sure enough, it was one of the top side effects to watch for. I quit taking it on my next dose and 3 days later I was back to my “normal” depressed state.
That’s a really good thing to know, Clare, thanks. I’ve just signed up for a trial of Amitriptyline, which is like Nortryptiline (I think!) As I have predominantly high sensitivity with burning and the odd shock maybe Amitriptyline will prove to be useful in lowering the sensitivity and the sensation that it’s all just about to kick off! If it doesn’t I can always try Nortryptiline, so that’s another one to add to my cache of possibilities. The more the merrier; at least that way I feel I have options.
Ooh, 100mg is high. I know he said to me today that they’d go up to about 30mg before I’d get useful results (which does make you wonder why I’m on 10mg) but he said if you take it up too high it becomes unusable because of side effects - he mentioned dry mouth and eyes specifically. I thought it sounded a bit like Carbamazepine giving you Sjogrens Syndrome, which I got. At least I’ll be used to it!
You were lucky you could use Lamotrigine. I thought it was a great drug. I had it on top of Carbamazepine and I lost all my background burning which I’d never been able to get rid of. Unfortunately it soon became apparent it was giving me crushing migraines. I had it for 3 weeks, I think, then another 3 weeks withdrawal and I had a full 6 week migraine throughout it all. It was dreadful. I had the full monty: light sensitivity, nausea, motion sickness - even walking used to make me feel like vomiting. I can remember going to see a neurologist (who was a migraine specialist, ironically; she’d prescribed it) and she took me off it, most miffed that it was causing migraines when it’s used to treat them (trust me to have an opposite reaction!) But I was so ill from having been on a bus to get to the hospital I decided to walk home even although it was an hour and a half’s walk. I remember having to stop in the shade of some big trees because I was virtually blinded by the sunlight. I actually can’t remember any of the rest of that walk; I think my body shut down as a self-protective gesture!
And I had an aha moment with your “just stop breathing” - that was one of mine too: “I wish I could just die”. I remember having my first breakthrough moment that something weird was going on when I went through to make myself a cup of tea and I was zoned out, standing watching the little light on the kettle (simple pleasures) and suddenly thinking “I wish I could just die now”. It was such a flat experience, like I’d thought I should take the recycling out. I remember thinking 'Where the hell did that come from? That is so not normal" and I began to watch and record it after that.
And I loved your closing line “3 days later I was back to my “normal” depressed state” - very blackly funny, and so true.
That migraine sounds so terrible! I am sorry!
I tried switching fully to Lamotrigine and at 125mg a day I started to have nasty digestive issues. I’m lactose intolerant and it was like I was having nothing but dairy, when I wasn’t. Luckily once I dropped it back down to 50 a day my system started to normalize, it was a difficult 2 weeks to get it back down, after the 2 weeks it took to figure out it was a side effect and not some kind of infection.
Dark humor is my favorite, I think living with pain does that to you.
I hate to do this… my upfront disclaimer is that everyone is different and you just never know how a med will work for you… that said, please be aware there is something called Cymbalta Withdrawal Syndrome (this is the American FDA name for it). In a certain percentage of people, I want to say less than 20% who take it, Cymbalta doesn’t work well but trying to come off it is worse than being on it. You never hear about this until it starts happening to you.
I was on Cymbalta 30mg 1x daily for 3 months and it took me 8 months to titrate back off it the withdrawal was so horrible. It took at grand total of 14 months for for withdrawal issues of leg cramps, brain zaps, vertigo, and fatigue to resolve. For about 3 months I went upstairs by sitting down and scooting, my hips hurt so much I couldn’t make the step up.
I AM NOT SAYING THIS WILL HAPPEN TO YOU!
I’m an odd duck and I know it, meds tend to work extremely well on me in extremely low doses but it’s double edged sword, if it works well it really works, if it doesn’t work it really doesn’t work.
I’m suggesting you look at how well you do on meds in general, research Cymbalta carefully, and if you decide to give it ago (after all, millions of people do just fine on it and it’s been wonderful for them) please start at the lowest possible dose, working your way up super slowly and stay tuned into your body.
I have never, ever had withdrawal issues from any med like I had from Cymbalta and certainly none that lasted for months after I stopped taking it. Just be aware!
You’re so right, Makebelieve, it’s the Joan Rivers theory: some things are just so tragic and grotesque you’d go mad if you didn’t laugh at them!
Thank you, Azurelle - that heads up is most appreciated. As I’ve mentioned elsewhere I had ‘drug hypersensitivity syndrome’ with Carbamazepine, which was really more like Drug Induced Lupus. I also can’t use Aspirin or Ibuprofen and had to give up Codeine after I lost my gallbladder (that’s sounds like I misplaced it in a supermarket!) because it was causing Sphincter of Oddi Dysfunction. I can’t use Elastoplast and once made myself really ill by taking a single dose of Tramadol (why people try to ‘score’ that from doctors, I’ll never know) so I have a bit of a drug sensitivity myself; the warning is very useful.
If you decide to go on the Nortryptiline or the other one Amitryptiline and you are sensitive please increase the dose very slowly like 2.5mg increase every 3/4 days. That’s what my Neurologist recommended. You will feel sleepy too but what’s new.
You soon adjust. Unfortunately For me I can’t go above 25mg or my heart races too much like 120 beats per minute sitting down. I don’t want to go on beta blockers. A few people experience this as a side effect.
Thanks, Clare; I’ll remember that. I went for Amitriptyline, but I forgot to ask the doctor about increasing the dose so I’ll probably just stick to 10mg a day for the 28 days I have my prescription for. I’ll see the next doc about putting it up if it’s not working. He actually told me it takes about 30mg to see results so I don’t know why he’s started me on 10mg. I assume maybe to avoid or minimise side effects.
I agree, don’t go up in dose too quickly, or the side effects will be very uncomfortable. But they will fade with time. Many people do have good results with lower doses, so I think it is worthwhile to try and find the lowest dose that might give you relief. I was on amitrypiline (and other TC ADs) for many, many years (before I had ATN), I actually think the withdrawal from that drug was what started the ATN. Hope it works for you!
Thanks, Ziggy. I took my first dose last night, at bedtime as instructed because “it might make you feel drowsy”. It didn’t. I lay awake with my usual insomnia, so that was a disappointment! However, it did make my heart race like the dickens. I felt like I’d had a cup of espresso before bed. And I’ve sat on the sofa all day today, in my dressing gown, trying to stop myself nodding off - I suspect that’s the “drowsiness” right there - damn it. Why can’t it show up when it would be useful rather than trash my energy the next day?
You might want to play with the dosing time. I found that I would go through a period of rapid heartbeat, then get sleepy about an hour later. Eventually I did have to quit amitryptiline due to it turning paradoxical and giving me severe insomnia. This seems to be more common on lower doses.
I have to tell you my dad’s favorite saying, “you gotta laugh or you’re gonna cry”.
I think you’re right, Ziggy. Just up, at noon, because I couldn’t get myself awake, yet I took the dose at 2 am - ‘just before bed’ - and was still wide awake after 4 am, so obviously the making you drowsy thing isn’t happening for about 8 hours for me!