Hi, I’m currently using Nortryptiline for my TN1, but so far I haven’t had great success. I’m currently at 50mg a day and I increase that 10mg a week. Have any of you used these drugs and, if so, at what dose did you start seeing positive results?
I know the drugs are used to treat depression at much higher dosages (100mg+ I believe) but I’m not sure whether it’s worth continuing with them for nerve pain. The first Dr I saw said they usually don’t show results till about 30mg and a nurse at the practice is using 40mg successfully for ATN, but at 50mg I’m still seeing no real changes - should I have seen benefits by now?
Hi
For me at 10mg it helped but I needed to titrate up every week to chase the pain.After a month I was at 40mg and my hands numbed up at night.
The first med they had me try was cymbalta-which worked but left me a crying mess .
I think my waardenberg syndrome-which causes facial differences and hearing loss has done something to make these type of drugs not work for my mental health.
Or I am just weird.I am glad I have never needed them to treat depression.I would have been dead long ago.
I am an ATN person I have aches 24/7, and no two of us seem to be the same anyway, but I have been on Nortriptyline for 3 years. I started seeing some pain reduction in severity at 25mg, at 100mg I was basically pain free, but such a zombie I was worse at living my life, too tired to drive safely and sleeping 16 hours a day and still tired. So I reduced down to 50mg a day and added other meds (I’m still searching for a good option since most the Anti-seizures have done little to nothing for my pain with NASTY side effects) Currently I am taking 50mg of Lemotrigine with the Notrtip, but I still have low levels of daily pain, and I can’t raise without digestive problems.
I am not as experienced with TN1, and I know the anti Depressants can be less effective for most TN1s, but I generally recommend that people try to get to 100mg if they can stand the drowsiness before giving up on it.
Hi Ellen. Yes, I’ve had Cymbalta recommended to me (maybe by you?) I know what you mean about the side effects. That’s why I’m trying the anti-depressants, to try and avoid the side effects of anti-convulsants. But you just can’t get away from the damned things, can you? Amitryptiline caused really severe mood changes right from the get-go with me, so I changed to Nortryptiline, which was better, but doesn’t seem quite so effective on pain. Additionally, it makes me really drowsy, disrupts my sleeping (I can’t get up in the mornings) and constipates and bloats me (I look as if I’m 9 months pregnant! Not easy at 61!) Since I’ve gone up to 50mg I’m staggering around like a drunk. I’m hoping it will settle, but I am really dizzy all the time. I can live with the side effects if I get pain relief but that’s not happening.
However, on the upside, I seem to be less depressed! I’m not plummeting into black moods and seem to be handling life better. Of course, that might just be me getting my act together, because I’m not sure they could work on depression at such a low dose. Or maybe I was so acutely depressed even a little anti-depressant worked!
Thanks, Makebelieve. I’ve had gut problems with them too - thanks for reassuring me it’s not my imagination. I got bad acid reflux, which does seem to be settling, but the constipation and bloating isn’t - worst luck. I’ve made an appointment to see the doc and discuss dosing. I think I’ll probably try going up with them for as long as I can handle the side effects, but if I get up to the 100mg mark without success I’ll need to try something else. The one thing they did do was dampen down shocks, but the constant ‘sensitivity’ pain is there 24/7, and it’s very wearing.
Same ages US
I have lost so much weight.
I eat ice cream all day to put on calories.Not sure if it is because all the other snack food tastes bad-used to have a sweet tooth-but no more.
I guess that one got pulled.
keep smiling
Things have to get better and at least we are not 20
Ah, we’re obviously long-lost sisters, Ellen! I’m the opposite though, the depression makes me gain weight as I eat for stress relief/comfort. I’ve had to give up ice cream though as my ‘new’ TN is super-sensitive to cold. Even room temperature makes it hurt. I have to heat all my fruit or anything out the fridge and I can’t drink tap water. It’s weird because the first time I had TN it was heat it didn’t like. Now it’s cold. It is the weirdest damn disease ever. Even in the same person it expresses itself differently each time. No wonder they can’t understand or cure it. It must be like looking for a fairy needle in a giant’s haystack!
Nortriptyline helps me with burning but nothing else. It only works if I take 75 mg. I can only take that dose at night and a 25 mg in the morning. I was on 75/75 but a blood test showed it was damaging my kidneys so this is the most I can take. I only get relief from the burning at night which makes for a long day especially since nothing helps the stabbing and shocking. Please ask your doctor to run a Nortriptyline level on you just to make sure as you increase it. The highest dose is 150 mg per day 75/75. Take care! I hope it works for you! Amitriptyline didn’t help me.
I am currently taking 20mg am and 20mg pm. This is being used to treat my occipital neuralgia. It is a good supplement to the Carbamazepine which is the primary medication I use for the TN1.
Thanks for that, Skippy; you’ve confirmed something I suspected. Oddly enough today is the first day I got some noticeable pain relief with Nortryptiline. It’s bitterly cold here in Scotland today and I was dead chuffed to be outside without the whole side of my mouth firing up with ‘sensitivity’ (it’s like normal tooth sensitivity but worse, more burning and far more sensitive). When I came off the bus again and had been outside for about ten minutes I suddenly got a shock but there was no sensitivity at all. That’s the first time that’s ever happened, but it did make me wonder, not for the first time, if these anti-depressants help the burning background pain but not the shocks.
Am I right in thinking you take 100mg in total in a day now, but were taking 150mg at one point? I’m up at 50mg a day at the moment, but struggling with side effects. In particular, bloating which is painful and seems to be part wind and part water retention, and terrible ‘dizziness’. I have poor balance and find it hard to walk in a straight line. Yesterday I thought I might have to give them up, it was so bad. I also took a large dose all at once for the first time yesterday (40mg) - I’d split them into 3 doses prior to this - and got a racing heart as well. Did you have trouble with any of these side effects and did they settle in time? They also seem to be making me more prone to migraine - I always seem to have this problem, no matter what drug I use!
Hi Patt, that’s very useful to know, thanks. I’d just been wondering about that very thing. As I just said to Skippy, I’m thinking Nortryptiline might be helping the background pain but doesn’t seem to be strong enough to stop shocks breaking through. I was wondering if you can combine both drugs safely. How much Carbamazepine do you take a day, and how have you found the side effects from taking the two drugs together?
Hey there! You are correct total of 100 mg daily (25 mg in AM and 75 mg in PM.) As for the side effects, I do have balance problems and dizziness. I haven’t been able to walk a straight line since I was a teen, when this started due to meds. As for your shock, I have anesthesia dolorosa meaning I’m numb from both my MVD when I was younger and gammaknife in 2014 but I have breakthrough pain. When I was a teen I had triggers for the shocks. Since I’ve been in my twenties, I get shocked all the time with zero triggers. The cold weather to me is the worst because of the wind too. You have it worse than me since I live in Alabama. Though currently we may be getting a dusting of snow tomorrow. Lastly, you mentioned your heart racing. You definitely need to tell your doctor about that. Amitriptyline did that me and you don’t won’t any medicine causing a fast arrhythmia. Take care…
Thanks, Skippy. I know what you mean about the dizziness. Drunken staggers (and severe bloating) have been the worst side effects with Nortryptiline. I thought it might be finally working when I had a very low pain day, but today it’s right back to its usual unfriendly self. I’m thinking I’m going to have to ditch it - the pain relief is just not there to justify the unpleasant side effects. This means it’s back to the anticonvulsants and all their horrors. It’s a real no-win game, this.
How unlucky were you to get this as a teen!? Can I ask what meds caused it? I’ve never heard of that happening.
Are you taking an anticonvulsant now?
Usually they say to have a mix.
I wish I could find an anti depressant to throw in the mix.I got my best no pain hours with the mix.
Maybe you could take a lower dose of the nortryptiline if you had gabapentin also.But it is all MAYBE.
There must be a way for someone to look at our blood and say you need a tad bit more of that and you are good.
As it is,it is a guessing game.
we ARE all different. how do I know? I had myself a dairy queen chocolate truffle blizzard one night and not only did my pain go away, but I thought I was high! lol.
I told someone about this and they said that sometimes cold can help with migraine pain, so maybe ice cream was having a similar effect. mind you, I can’t actually swirl the ice cream on my TN side or it will cause extreme tooth sensitivity pain which my dentist swears has a good root,etc, so I thought maybe it was the ice cold on the roof of my mouth that was making the difference. I can’t do this all the time, though, cuz I am already fat as it is (which I blame on gabapentin).
I am considering one of the tryptilines too, but I’m holding off on that until my (first) neurosurgeon decides on whether I would benefit from MVD. MVD is kind of yikes, but at this point I will try anything. it’s nice to see this post though, to see people’s dosages.
as far as I’m concerned, “side effects” are a non problem for me as long as I feel better in my head. I can take softeners if I need to poop, and since I haven’t had a drink in 17 years, being loopy is kind of fun for me hehehe
I actually use ice packs directly on the bad ATN side when it really gets going on me. I get enormous comfort from it. I assume it’s the numbing factor. That and I grew up playing sports and spraining ankles so emotionally ice packs make it all better for me!
You’d think, eh, Ellen? But medicine, despite all its advances, still has some stunningly ignorant areas, for want of a better word. It’s also been my experience that doctors are very lax at blood tests before or during treatment. It was always me who asked for blood tests during my time on Carbamazepine and they showed a steady decline in immune health and an alarming increase in things like anaemia and hypothyroidism. My doctor was never in the least bit fazed or concerned.
Ah, there will definitely be no drink for you if you adopt Nortryptiline, Egoiste. It’s got big warnings all over it about not drinking. I had a teeny glass of Baileys - and I mean teeny, because I don’t drink - when I was still on 20mg and that was hilarious. I got so drunk I looked as if I’d drunk the bottle! I found everything wildly funny. Worst thing though was I was still drunk the next day - no kidding. It would be a great drug to take as alcoholic - think of the money you’d save!
As for ice cream, I love the stuff but it is inedible for me now. I have to ask for no ice in drinks and can’t drink tap water or eat fruit out the fridge. I have to give everything two minutes on defrost to make it gently warm. The really weird thing about this is my first attack of TN was the opposite - it could cope with cold (just about!) but it loathed heat. Anything above blood temperature was excruciating. I had to let all my food sit for ten to fifteen minutes then eat round the edges of the plate! It is a real weird disease - make no mistake.
Arrrrrrrrrrrrrrrrrrrrrgggg, Azurelle! Even the idea of that makes me wince. You’d honestly think, listening to us all, that we had completely different conditions!
My new plan of action is to dose up on CBD-I have a legal script.I have been trying to vape-but I don’t like vaping-but the oils are brutally expensive.
So for the next 6 weeks I will vape or take CBD oil 3 times a day.I will put a bit of higher THC marijuana in to help with the nerve pain.But I do not like feeling stoned.
I will also interview a NUCCA practitioner tomorrow and try and get a neurologist not attached to a pain clinic for a second opinion.
Because I was already in pain management for my back-which got better while researching my face pain -I just ended up staying in pain management.Maybe someone outside of pain management will see something that others have not.
Electric woman-do you remember if something triggered this episode?I would royally t-d off-slaying the dragon-and then the damn thing waking up again.You need St.George out there sending that dragon back into it’s den