I’m recently diagnosed, been almost a week. I was prescribed gabapentin 300mg at night only. It seemed to help right away but wears off 5-7 hours later then my pain returns. My Dr told me to double the dose so now I’m on 600mg at night but it’s the same thing, wears off then I’m in incredible pain. I know I haven’t been on it long enough to work. But I’m in so much pain what am I supposed to do while waiting weeks to see if it works? I have another chronic pain condition interstitial cystitis a bladder condition so I understand the chronic pain thing but this takes the cake. It’s unbearable, I cannot sleep a wink. I haven’t slept more than 30min for days. My pain is worse at night, then I feel like it’s putting stress on my heart like my body cannot take this pain. I’m a mom to infant twins so I’m up all hours and this is making it beyond hard for me to function. Any advice would be appreciated, dosing on gabapentin ? Am I doing it properly? I’m afraid to be a zombie in the day because I have babies but only at night is that enough? Also will it kick in and I’ll feel better if I can hang in there to give the gabapentin a full try? Should I raise the dose? Another thing is when I feel awful in the middle of the night sometimes I’ve taken an extra 300mg dose at random times? Is that bad to stress dose?
When I started on gabapentin 5 yrs ago I remember noticing an improvement after about a week on it. Hang in there. It was almost a full year of constant pain before my primary doc gave me a trial to see if it helped.Everyone is different, so we are just sharing experiences here and it’s best to confer with your doctor if you need to make changes. Gabapentin works best when evenly spaced through the day, usually 3-4 times a day. That said, I have great difficulty sleeping as well, so I take the bulk of my dose at night. Going days without sleep is not good for you. Do you have someone who can help you with your twins at night? You may want to talk to your doctor about difficulties sleeping. He/she may give you something to facilitate a restful sleep.
The game changer for me was Nortriptyline, which knocked down the throbbing, stabbing headaches I got several times a week. Some were so bad I had to turn the lights out, shut down and ride out the pain. I kept reading testimonies from TN2 members about how much adding a tricyclic antidepressant to their regimen helped.
There is a thread here that (moderator) Red started a few years ago asking TN2 members what medications they have tried and what did/did not work for them. It’s worth reading to help guide you through this journey.
I am 25, a TNII/ATN sufferer for about 18 months now. I also didn't find good relief until I tried Nortriptyline. Gabapentin barely took the edge off, and then caused me severe short term memory problems on the second dose step, Lyrica was AMAZING for pain relief, but caused super depression and suicidal thoughts in me personally and is really expensive, Oxcarbimazipine made me horribly dizzy with out doing much for pain, I was on another one for 2 weeks but it caused horrible nerve pain in my feet and lower legs, I didn't like switching my face for my feet. So all in all I recommend trying to get on one of the Anti-depressants. That being said, stick with Gabbapentin until you can get into see the doctor. Some relief is better than none. My "solution" is 75mg of Nortrip. a day, three 25mg dosses, I still have daily pain, but it is muted to a point I can live with. I would pair it with something but every other drug I have tried had side effects I couldn't live with.
As for a little emotional support, I know how terrible the no sleep thing is when this pain is constant. It took 4 months for me to get a diagnosis. I would take near dangerous levels of Ibuprofen, bennidril and Vicodin all together, sleep for a groggy drugged 3-5 hours and wake to the sound of my own screaming or whimpering, that was all the sleep I got. I was a mess, physically and emotionally. Honestly I don't remember a lot from those months. It was just prolonged torture with no clue what was happening. I don't have kids, so I can only imagine how much harder caring for someone else would make this. The Diagnosis is the first step, so congrats on making it that far! :) Now you just have to hang in a bit longer and do your best to work with the doctors (This is rarely easy) to find what works for you. Each of us in on a unique dosage, and mix of drugs that helped us to some extent.
Ask your doctor about amitriptyline. I had same problem gabapentin wouldn’t just help me alone then my doc added amitriptyline 25 mg a night and that completely helped my pain and today I have been pain free for almost a year. Try the combination. I was at my wits end. It will get better I promise
I think your problem is thatYou are only taking it at night. You are suppose to take it in 3 doses a day… I first started out low per my Dr. I take at around 8 am 1 pm and 5 pm. I have worked myself up to 800 mg at each of those times also per my Dr. Hang in there I know how horrible it is. I’m type 2 myself…been a year…finally found relief. I take the gaba kolonopin trileptal and recently added nortriptalyn. You will be tired but your body will adjust. I think you need to add another medication. Just my thoughts on my personal battle
itwouldntbemakebelieve said:
I am 25, a TNII/ATN sufferer for about 18 months now. I also didn't find good relief until I tried Nortriptyline. Gabapentin barely took the edge off, and then caused me severe short term memory problems on the second dose step, Lyrica was AMAZING for pain relief, but caused super depression and suicidal thoughts in me personally and is really expensive, Oxcarbimazipine made me horribly dizzy with out doing much for pain, I was on another one for 2 weeks but it caused horrible nerve pain in my feet and lower legs, I didn't like switching my face for my feet. So all in all I recommend trying to get on one of the Anti-depressants. That being said, stick with Gabbapentin until you can get into see the doctor. Some relief is better than none. My "solution" is 75mg of Nortrip. a day, three 25mg dosses, I still have daily pain, but it is muted to a point I can live with. I would pair it with something but every other drug I have tried had side effects I couldn't live with.
As for a little emotional support, I know how terrible the no sleep thing is when this pain is constant. It took 4 months for me to get a diagnosis. I would take near dangerous levels of Ibuprofen, bennidril and Vicodin all together, sleep for a groggy drugged 3-5 hours and wake to the sound of my own screaming or whimpering, that was all the sleep I got. I was a mess, physically and emotionally. Honestly I don't remember a lot from those months. It was just prolonged torture with no clue what was happening. I don't have kids, so I can only imagine how much harder caring for someone else would make this. The Diagnosis is the first step, so congrats on making it that far! :) Now you just have to hang in a bit longer and do your best to work with the doctors (This is rarely easy) to find what works for you. Each of us in on a unique dosage, and mix of drugs that helped us to some extent.
I wouldn’t make believe you said you space your nortrip out…I take 50 mg at bedtime…I thought it was notorious for making you tired and should be only at bedtime…but I am curious as to spacing it out might help me too. What times do you take it during the day? Does it knock you out? Thanx
Jennifer, I take my Nortriptyline at night as well. Between the nortriptyline, gabapentin 1200 mg and Flexeril for my back, I am able to sleep.
TN2 was a difficult diagnosis to take, especially so little is known about it and finding the right treatment is so much trial and error. I've had TN2 for 18 months. It look me about 6 months to find the right combination of meds to find significant relief. I'm now 95% pain free. Hang in there. Like others, I have to take meds more than once a day. It takes some getting used to but if I take the meds with coffee, that keeps the lethargy away. I tried gabegpentin but didn't stick with it because it made me feel intoxicated. Nortriptyline made me constipated which was awful. I now take Trileptal - 150 mg. twice a day, Baclofen - 25 mg twice a day and Lamictal - 200 mg once a day. I also get acupuncture treatments once a month which made a tremendous difference for me.
I would suggest reading a book called "Striking Back!: The Trigeminal Neuralgia and Face Pain Handbook". It has a ton of great information.
Don't give up hope! Reach out whenever you feel overwhelmed or want additional suggestions.
I would agree with the comments about nortriptyline. I am type 2 and it helps me a lot. I take it at bedtime, usually 120 to 130 mg. I did work up to that dosage gradually. It does help me get some sleep which everyone needs to handle the pain.
I would also ask your doctor about Gralise, which is time release gagapentin.
There is a starter pack that is available and it gradually increases the dose until you reach a therapeutic level, which is 1800 mg. The very best thing about it is that is is taken once daily with your evening meal. It helps me on most days. There are still days once in awhile when none of the meds seem to help, But thankfully that is not very often, and you I are a tough situation being a new Mom.
There are wonderful and helpful people in this group, and I am sure you will get some great input.
shadow2 said:
Jennifer, I take my Nortriptyline at night as well. Between the nortriptyline, gabapentin 1200 mg and Flexeril for my back, I am able to sleep.
Hey Jennifer,
I haven't had too much trouble with it knocking me out. It makes me a little spacey, but then so does the pain... I am also a chronic Insomniac so actually being on an all day dose of the Nortrip helps me to sleep a real 8+ hours at night, which I have rarely done most my life. I may just be a special case. I initially started just at night, but then we went to morning and night, and now I have added the midday dose with out a serious increase in sleepiness, but I might be a special case. It may be worth a try, if your doctor is ok with it, you can always switch back if you need to. I'm glad you have made some progress, you've been in my thoughts a lot. *hugs*
Thank you so much. I really am doing much better. Thank god. I thought there was no hope in sight …but finally it came. I may try 25 in the am and 25 at night or maybe even 25 in am and 50 at night. My Dr said she has patients on as high as 100 mg. I just work with my gp now ( internal medicine) as well …so obviously people she sees are taking it for many different reasons but going from Dr to Dr became way to much so I am just sticking to her …and I’m honestly doing great 
…hope you are too!!
All the meds give me horrible memory problems but I’ll take that over the pain any day…my Dr is hoping the nerve will eventually calm down in time and that I can ween off certain meds little by little…but I wouldn’t want to even attempt that any time soon…I JUST found a combo that tremendously helps…took a year.
It took me almost a year to get livable too, and one of the ONLY things I remember well from last year is that feeling of hopelessness when your 4th drug combination fails and you have been in unbearable pain for 8 months straight. My GP has also been my best doctor, I can't get in more than once every 6 weeks with the specialists, and that is just too far apart when I NEED changes weekly. Hang in there everybody.
I am glad you are doing better Jennifer. Its good to hear!! :) I am doing good with Gabapentin in the morning and Amitriptyline 75 mg at night.
gabapentin worked for me initially, but then I kept having to increase the dose regularly until I could no longer take it. I was switched to amitriptyline, & it provided substantial relief. Keep at your doctor until they find something that works. And don't hesitate to look for a doctor that has more experience with TN or chronic pain, if necessary. Some docs are better than others at this task.
Did you stop or wean off the gabapentin before starting the amitryptiline ? Also how long did you give the gabapentin to work? Then when you started the amitryptiline, how quickly did it start working?
mrl said:
gabapentin worked for me initially, but then I kept having to increase the dose regularly until I could no longer take it. I was switched to amitriptyline, & it provided substantial relief. Keep at your doctor until they find something that works. And don’t hesitate to look for a doctor that has more experience with TN or chronic pain, if necessary. Some docs are better than others at this task.
Lyss, I am on gabapentin and nortriptyline, also a tricyclic antidepressant. Unfortunately, often gabapentin has to be gradually increased to continue effectiveness. We kept upping my gabapentin and I found more relief when we added nortriptyline to the mix.
There is no need to stop gabapentin (obviously very gradually wean off) before adding one of these tricyclics. Many people find them very effective when taken together.
I weaned off it, but fairly quickly (just a few days), since it was no longer effective. The amitriptyline helped me within a matter of a few days; maybe a week at most. But remember everyone is different. Results vary widely. You may have results quicker, slower, or with a different drug. But I know a number of people with TN2 have been helped with amitriptyline or nortriptyline. They are old-school antidepressants that have been found to be effective on pain pathways. I wish you the best.
I appreciate all the information in this discussion. I was just diagnosed with TN yesterday. I'm on Gabapentin 100mg 3 times a day and can't tell it is working yet. But just on the 2nd day and from some of the posts above I see I will have to give it some time. I found that holding water in my mouth for a little bit tends to calm the pain down for a short while then I swallow or spit the water out. I'm looking forward to the meds working better in controlling the pain better.