I have had TN for some twenty years but with quite extensive periods of remission inbetween, on average a year to eighteen months.
Each time that I have a bout of TN it takes me quite sometime to get the balance of medication right, with no guidance from my GP.
In the past I have found that quite obviously a too low a dose does not work, but also that too high a dose appears to make the situation worse.
I have contacted the manufacturers of Tegretol who stated that they have no clinical evidence as to the appropriate dosage for TN as it is primarily a a medication for Epilepsy.
Any thoughts / advice that our members have from their own experience would be most helpful as on this occasion I just dont seem able to get the dosage right.
I was on Tegretol for 12 years until the MVD cured me 5 1/2 years ago. Taking too much can cause liver damage. You should be tested for liver damage while on tegretol, also stay away from booze.
My theory after many years is that just like with our varying / random sensitivities to cold, or touch, or stress, or operations, or luck, or foods, or the solar wind, or Kenny G, or whatever the latest thing we've fooled ourselves into thinking we see a pattern with, our sensitivity to Tegretol ebbs and flows too. No rhyme or reason. We have an electrical short circuit which behaves like the dashboard light in an old car. Slam the door and it goes off. Drive over train tracks and it goes back on. Sorry for the rant. My actual answer is that when I have breakthrough pain, it ignores all concoctions, all amounts. I've been as high as 1800mg a day and I don't know if it was any more helpful than 900mg would have been at the time, but maybe there's a placebo effect that takes some sting off? Just keep and eye on your liver. Good Luck.
Hi…I had persistent dyarrhea from only 400mg tegrotol…switched to Baclofen which seemed to work at 30mg per day. But then went to a physical therapist who discover a hard spot on left side of my face. She showed me how to lift and pull gently. I am off all meds…no pain. Feels miraculous.
I encourage everyone to explore non pharmaceutical options. They MAY work.
Best of luck
Juanita
20 yrs for me as well, diagnosed at 41. First tegretol until I was popping them like candy, then mvd. Immediately pain free for 5 wonderful yrs. Pain made its way back into my life, decided on gamma knife, pain free for 3 yrs., pain came back, another gamma knife. Pain free for three yrs. guess what? The warranty ran out again and I am bak on tegretol. I have learned to use sticky notes, laugh at my occasional " wrong word usage" and watch the liver platelet count as I once again pop the pink pills, and wait for break through pain to become too high to tolerate. This is an unforgiving, ugly, horrible beast we live with inside our heads and I am glad to know there is a place we can vent, cry, swear (or not), complain and hope with our fellow sufferers who we don’t have to explain how it feels. My best to everyone and their families who search for the answers to taming this unruly monster.
I totally agree with Scott, no rhyme or reason sometimes, but I just "Hold the Course" with Tegretol 400mg BID and then have added other medications. Right now it's Nortryptyline and botox. I first started Tegretol 8 years ago.
20 yrs for me as well, diagnosed at 41. First tegretol until I was popping them like candy, then mvd. Immediately pain free for 5 wonderful yrs. Pain made its way back into my life, decided on gamma knife, pain free for 3 yrs., pain came back, another gamma knife. Pain free for three yrs. guess what? The warranty ran out again and I am bak on tegretol. I have learned to use sticky notes, laugh at my occasional " wrong word usage" and watch the liver platelet count as I once again pop the pink pills, and wait for break through pain to become too high to tolerate. This is an unforgiving, ugly, horrible beast we live with inside our heads and I am glad to know there is a place we can vent, cry, swear (or not), complain and hope with our fellow sufferers who we don't have to explain how it feels. My best to everyone and their families who search for the answers to taming this unruly monster.
I am so sorry to read about the relapses you have experienced. I just had the MVD surgery 3 months ago - I know this is a bridge and no one knows how long it will be before a relapse - I enjoy every morning I wake up pain free.
Cindy, was there a reason you opted for the Gamma Knife over MVD the second time?
To Rosinka, different people are effected differently by tegretol, so what might be a dose with intolerable side-effects for one person may not be noticed by another. I know that I can take 400mg of tegretol and not have any noticeable side-effects, but if I approach a 800mg dose I feel scatter-brained. One time when I was first getting a handle on the condition, my dosage had gotten up to 1200mg and I had a severe reaction with double-vision etc.
Now my plan is to stay on the drug, but cycle off when I don't have pain for a few weeks. Usually if I can get 6 to 8 weeks away my tolerance resets and it starts working well again for another 4 months.
I have tried neurotin and dilantin, but they do absolutely nothing for me.
A few reasons. One, due to the invasive-ness of the DMV. Two, you start getting scar tissue buildup that inhibits a second procedure. Three, it's hit and miss. For me they couldn't find the "notch, loop, knot," the offending nerve/vein culprit or whatever it's called, so they had to guess and they put the sponge at the base hoping it would work. It was a 50/50 shot. It gave relief for 5 yrs and for that I was grateful.
scott - i enjoyed your analogy. I don't even take tegretol (i'm on lyrica, topamax, and zoloft) but appreciated your words! That is a great way to "try" to explain to someone who has no clue what we go thru. thanks.
I have only ever used Tegretol for TN over a period of many years, on and off as the pain has come and gone. I have found it generally takes up to three weeks to feel fairly good pain relief, provided that during this time frame you work up to a reasonable dosage. If your doc is starting you on a very low dosage as some seem to do, like 200 or 300mg a day, I am pretty sure this is way way too low; for meaningful relief I have used up to 2400 mg per day, and even higher on extreme days, but try to slowly build up your dosage until you can feel some relief, with the overall idea of using as little medication as possible. On the higher dosage it is pretty standard to feel some brain fog, weight gain as the body becomes very sluggish, loss of memory - little things, lose track of dates and times and so on. I think the key things to think about are 1) Start with a low daily dosage and work it up to a higher dose over a few weeks until you feel relief. 2) If you find yourself with no pain, try to taper the dosage down again, slowly. 3) The overall plan must be to use as little med as possible, and in pain free cycles, to use none at all (or a very low maintenance dose as you choose) - personally I use no meds at all during pain free cycles. During prolonged use of a high dosage, I think it's recommended to have your blood checked, although I don't see how it helps actually, because even if the levels of whatever are extremely high in the blood, I am not going to go without med during a pain cycle - but you can apparently have liver damage from the high dose. Finding the right dose is very, very individual, all dependent on your personal level of pain and your body, so that's why the building up and tapering down is very important - you use that to discover your own optimal dose requirement at any given time. All the best.
I am off it now and taking amitriptyline 25 mg 3 times a day. I was taking 400 mgs twice a day but went off because I was falling alot. The amitriptyline is not quite doing the trick yet. Lots more breakthrough pain and then they changed my med for that as well because the FDA pulled it...too much acetaminophen in it...so what do I do, I just take the Norco and chase it with a 500mg tylenol because that combo WORKS. They won't like ti but I will not sit in pain when I know how to push it back. My guts are already a mess from years of pain management. Sometimes you just have to do your own pain management if you know what works. My thoughts are with you. Be sweet to yourself!
There is no Tegretol dose-specific information for TN. The best info you will find is ■■■■■■■■ mg/day (in divided doses 2-3 times daily) based on subjective pain relief.
Tegretol is a funny drug... I used it at first 200 mg 3X day (600 mg total), it was effective but I d/c'd it after 3 wk. due to lethargy and slow, slurred speech. The ravenous pain returned so I restarted Tegretol -- BUT this time, it didn't work -- I developed tolerance!
For those taking Tegretol for extended periods, in addition to liver function tests (LFTs) ask about complete blood count (CBC) -- this drug can lower white blood cells and platelets
If you are taking Tegretol please read the following ACCURATE information. Don’t just glance at it, really read it through so that you are informed about what you are taking…
“Trigeminal Neuralgia (SEE INDICATIONS AND USAGE)
Initial: On the first day, either 100 mg b.i.d. for tablets or XR tablets, or 1/2 teaspoon q.i.d. for suspension, for a total daily dose of 200 mg. This daily dose may be increased by up to 200 mg/day using increments of 100 mg every 12 hours for tablets or XR tablets, or 50 mg (1/2 teaspoon) q.i.d. for suspension, only as needed to achieve freedom from pain. Do not exceed 1200 mg daily. Maintenance: Control of pain can be maintained in most patients with 400-800 mg daily. However, some patients may be maintained on as little as 200 mg daily, while others may require as much as 1200 mg daily. At least once every 3 months throughout the treatment period, attempts should be made to reduce the dose to the minimum effective level or even to discontinue the drug.”
Don’t just assume your doctors or pharmacists are on top of everything…mistakes happen.
There is some misinformation in some of the replies posted here, so I encourage everyone to read the link.
Rosinka, TN as you know is ever changing and so you’ll find a myriad of doses and med combos because there is not ONE magic med or dose that works for everyone…
800 mg of Tegretol CR is what worked for me for the longest time…(200mg tablets, 3xday)
I have gone up as high as 1600mg but my pain was med resistant at the time.
I hope you have a doctor or neurologist who is able to help guide you with your med(s) giving you direction on how to increase your med, suggest new meds etc…
Hope you find relief soon, Mimi
Hi i have just been diagnosed with TN and I am very depressed. I work 10 hours a day in office and I just don’t want to leave it as I enjoy my work but TN has completely changed my life.Everyday is a challenge. I cannot let this take my guts out. Sometimes I cannot hear from my left ear.
Please help me in coping with this. Has anyone tried Homeopathy? It is very popular in India.
My dad was recently advised to take Tegretal (200 mg) for pain. However, everytime he takes it, he complains of dizziness and drowsiness. Due to that, he sleeps a lot. He cannot even walk properly while awake. Thus, I believe too much of anything is bad. Hope this helps.
I think you have to accept that TN changes your life, no matter how much you wish it wouldn't. The pain is inhuman and it really does have an effect, as well as the medication. It helps to prioritise your life - give your best time of the day to the most important things; it helps to understand that you might require more rest; it helps when you take charge of your medication and your options, and understand that knowledge about TN and all the meds and surgical options IS power, so read LOTS especially on this site to broaden your understanding of everything you're going through - and ask ALL the questions. Accept that a lot of the people in your life will not be capable of understanding what you're going through, but they may in time. Try to keep as many of your friends as possible. Tell them right up front how to handle you if you're having severe pain. I used to tell my friends to ignore my facial grimaces - they're involuntary for the most part, and your friends can't do anything about your pain - they just need to keep being your friend and not exclude you.
I have not heard about any homeopathic remedy being helpful, but I have tried Chinese medicine on the urging of a friend and it was a real waste of resources. My advice, stick to your anti-seizure med, avoid narcotics or any addictive substances, [I am not against smoking the occasional joint if it helps] and focus on getting your dosage of the anti-seizure right for YOU - we are all different in our requirements. Build up your dose and taper it back down until you get optimal relief with minimum side effects. Over time, if your TN persists or gets very bad, possibly look into MVD surgery; it has been far more successful than not I believe, but it should probably not be considered after you've tried other surgical options, so maybe think of it as your first surgical option. All the best.
Thank you to all of you who responded to my post, it has been most helpful not only in giving me a feel for how to deal with the medication but also to realise that I am not the only one suffering from this wretched condition.
One of the startling facts that I learned from one of you was the difference in the level of information given out to patients in the USA versus the UK by Novartis the manufacturers of Tegretol. The USA leaflet has far more detailed information about its use in treating TN. The UK leaflet is limited to one line.
I would have liked to thank you individually for your contributions to my request for help, suffice to say I am very grateful to you all for taking the time to respond and I wish you all as well as can be expected.
Tom AKA rosinka
Scott said:
My theory after many years is that just like with our varying / random sensitivities to cold, or touch, or stress, or operations, or luck, or foods, or the solar wind, or Kenny G, or whatever the latest thing we've fooled ourselves into thinking we see a pattern with, our sensitivity to Tegretol ebbs and flows too. No rhyme or reason. We have an electrical short circuit which behaves like the dashboard light in an old car. Slam the door and it goes off. Drive over train tracks and it goes back on. Sorry for the rant. My actual answer is that when I have breakthrough pain, it ignores all concoctions, all amounts. I've been as high as 1800mg a day and I don't know if it was any more helpful than 900mg would have been at the time, but maybe there's a placebo effect that takes some sting off? Just keep and eye on your liver. Good Luck.
