I have only had TN for 3 months and was lucky to get diagnosed right away. While waiting for Tegritol to do its magic, I had 24/7 burning pain in my ear and intermittent shocking/stabbing pains in my upper and lower jaw. I still have slight burning and twinges of pain to different degrees of intensity so my question is, is it harmful to the nerve if I don't increase the dosage of Tegritol? I have a love/hate relationship with Tegritol and while I love that it takes most of the pain away I hate it's side effects. I can't drive or work and I am only on 400 mg's a day. My GP says I am a narcotic virgin . . . this is not the first time I have tried medication. When I went on Lyrica 3 years ago for Ice pick headaches I was a dizzy, forgetful mess. When I was on my first few dosages of Oxycotin for knee surgery I fainted and my husband said my whole body was jerking while I was out cold. I had 9 stitches in my lower lip from falling and have a nice little scar.
Anyway, if I can manage the pains with my current dosage for now am I harming anything?
Since you don’t seem to be tolerating the Tegretol well or getting appropriate pain relief, I highly encourage you to talk to your doctor about trying other anticonvulsants that may work better without the side effects that you’re experiencing now. I couldn’t handle Tegretol and about three or four others, but found a great deal of relief with Neurontin/Gabapentin. Sometimes it takes a lot of trial and error to find the right medications, combinations (medicine cocktail) and doses.
And yes, chronic, intractable pain can do additional damage to your central nervous system. It’s very important to get the pain under control.
Ask your doctor about Trileptal. It's known as Tegretol's cousin less the side effects. I hope it works for you. It's a good thing you're on such a low dose because that would make it easier to gradually switch to another drug.
Collette, Since you don't seem to be tolerating the Tegretol well or getting appropriate pain relief, I highly encourage you to talk to your doctor about trying other anticonvulsants that may work better without the side effects that you're experiencing now. I couldn't handle Tegretol and about three or four others, but found a great deal of relief with Neurontin/Gabapentin. Sometimes it takes a lot of trial and error to find the right medications, combinations (medicine cocktail) and doses.
And yes, chronic, intractable pain can do additional damage to your central nervous system. It's very important to get the pain under control.
I take Trileptal now along with Topamax for migraine preventative and Effexor for depression. I also now take Amitriptylene for the pain and Percocet as needed. When I do notice some pain that I can tolerate I guess you could compare it to a headache. When you can do that, in my opinion you can say... you have good pain control. When I take my percocet I don't get any pain but in between I may get some, but it's tolerable like 3 and under.
Thanks for the info. I don't see a neurologist until the end of July . . . wait times in B.C. are crazy. I can't take Neurontin, it gave me wicked headaches. I will look into Trileptal, but my GP will likely just tell me to take more Tegritol. I will take a 1/2 of Tegritol this afternoon in the meantime.
Collette, you're going to do whatever you decide to do, but I must in conscience gently warn you that taking less than the prescribed level of a medication is a great way to cause yourself deep trouble.
Likewise, a four-month wait to be seen by a doctor for effective treatment of agonizing pain is outright malpractice. If your so-called "free" health system can't do better than that, then you may want to consider sending the Province director of your health service a letter on lawyer stationary, informing him that your local neurology staff is committing such malpractice. Failing that, go to an emergency room or urgent care center, or find a private doctor or come south of the US border. We have waiting times down here too in rural areas -- but it's more likely to be a month than four months.
Not getting adequate treatment for pain may indeed (as Gloria says) cause lasting damage to the Central Nervous System, by allowing the buildup of toxic genetic mutations and chemical byproducts of chronic pain in the bloodstream.
Hi Red, It is a common occurrence here to have these wait times ... I agree it is awful and it causes more stress which no one needs when having an illness. I saw a neurologist 11 days after I was diagnosed, but I should have known why the visit was so quick because anyone that is decent here has a crazy wait time. I will not see her again because she would not order an MRI and she said drugs were the only option. My GP ordered an MRI but it will be at the end of July as well. I am not in agonizing pain anymore, I just have twinges throughout the day and sometimes they are about 10 to 40%. Only a few have stopped me in my tracks. I am finding that the burning is starting again but at a way less intensity. I am taking what the neurologist prescribed but I think that what worked for me 2 months ago is not now. Before the neurologist visit my doctor told me to increase my dosage to 300 mg twice a day, but when I tried it the first time, my heart beat really fast, full body sweat and I felt like I was falling off a building, like I was going to faint. I lied down and I didn't move for four hours. Needless to say, I stayed at my 200 mg twice a day. I would rather take the 200 mg dosages 3 or 4 times throughout the day than increase my dosage only twice a day. I am dealing with other health issues right now that seem to be over riding the TN problem. It is hard enough to deal with TN never mind everything else all at once. My life changed literally overnight. Thanks so much for your advice and concern.
Richard A. "Red" Lawhern said:
Collette, you're going to do whatever you decide to do, but I must in conscience gently warn you that taking less than the prescribed level of a medication is a great way to cause yourself deep trouble.
Likewise, a four-month wait to be seen by a doctor for effective treatment of agonizing pain is outright malpractice. If your so-called "free" health system can't do better than that, then you may want to consider sending the Province director of your health service a letter on lawyer stationary, informing him that your local neurology staff is committing such malpractice. Failing that, go to an emergency room or urgent care center, or find a private doctor or come south of the US border. We have waiting times down here too in rural areas -- but it's more likely to be a month than four months.
Not getting adequate treatment for pain may indeed (as Gloria says) cause lasting damage to the Central Nervous System, by allowing the buildup of toxic genetic mutations and chemical byproducts of chronic pain in the bloodstream.
Collette, Be careful to see if there is a score line in the tegretol pill. If it does not, you are recommended to not cut it. There is probably a warning sticker in the bottle. Plus, if there is a tiny hole in the side od the pill, don’t cut it. A pharmasist should be able to answer your questions. This is not the kind of med you can take an extra half and you’ll be good…like advil…no, to the contrary. This stuff is ROUGH on your liver, so great care must be taken, dear. This stuff almost killed me and some others on this site. You must get your pain controlled as a number one priority. Have you tried using epsom salts in hot/warm water and using a cloth to dab onto your face? Any topical gels given like lidocaine or ketamine? Does a heating pad help to break the pain episode? These all help me a little and sometimes a little extra help is enough to bring the pain down. Take care!
collette said:
Hi Red, It is a common occurrence here to have these wait times … I agree it is awful and it causes more stress which no one needs when having an illness. I saw a neurologist 11 days after I was diagnosed, but I should have known why the visit was so quick because anyone that is decent here has a crazy wait time. I will not see her again because she would not order an MRI and she said drugs were the only option. My GP ordered an MRI but it will be at the end of July as well. I am not in agonizing pain anymore, I just have twinges throughout the day and sometimes they are about 10 to 40%. Only a few have stopped me in my tracks. I am finding that the burning is starting again but at a way less intensity. I am taking what the neurologist prescribed but I think that what worked for me 2 months ago is not now. Before the neurologist visit my doctor told me to increase my dosage to 300 mg twice a day, but when I tried it the first time, my heart beat really fast, full body sweat and I felt like I was falling off a building, like I was going to faint. I lied down and I didn’t move for four hours. Needless to say, I stayed at my 200 mg twice a day. I would rather take the 200 mg dosages 3 or 4 times throughout the day than increase my dosage only twice a day. I am dealing with other health issues right now that seem to be over riding the TN problem. It is hard enough to deal with TN never mind everything else all at once. My life changed literally overnight. Thanks so much for your advice and concern.
Richard A. “Red” Lawhern said:
Collette, you’re going to do whatever you decide to do, but I must in conscience gently warn you that taking less than the prescribed level of a medication is a great way to cause yourself deep trouble.
Likewise, a four-month wait to be seen by a doctor for effective treatment of agonizing pain is outright malpractice. If your so-called “free” health system can’t do better than that, then you may want to consider sending the Province director of your health service a letter on lawyer stationary, informing him that your local neurology staff is committing such malpractice. Failing that, go to an emergency room or urgent care center, or find a private doctor or come south of the US border. We have waiting times down here too in rural areas – but it’s more likely to be a month than four months.
Not getting adequate treatment for pain may indeed (as Gloria says) cause lasting damage to the Central Nervous System, by allowing the buildup of toxic genetic mutations and chemical byproducts of chronic pain in the bloodstream.
Yes there is a score line and the doctor said if I need to take 100 mg in the afternoon to snap one in half. I can't have hot or cold things on my face. We have a wood stove and I can't open the door with out pain. The cold weather seems to be the worst trigger. I wear a tube if I go outside. Thanks for your concern. I am sorry to hear about your experience . . . very scary.
LyndaS said:
Collette, Be careful to see if there is a score line in the tegretol pill. If it does not, you are recommended to not cut it. There is probably a warning sticker in the bottle. Plus, if there is a tiny hole in the side od the pill, don't cut it. A pharmasist should be able to answer your questions. This is not the kind of med you can take an extra half and you'll be good...like advil...no, to the contrary. This stuff is ROUGH on your liver, so great care must be taken, dear. This stuff almost killed me and some others on this site. You must get your pain controlled as a number one priority. Have you tried using epsom salts in hot/warm water and using a cloth to dab onto your face? Any topical gels given like lidocaine or ketamine? Does a heating pad help to break the pain episode? These all help me a little and sometimes a little extra help is enough to bring the pain down. Take care!
collette said:
Hi Red, It is a common occurrence here to have these wait times ... I agree it is awful and it causes more stress which no one needs when having an illness. I saw a neurologist 11 days after I was diagnosed, but I should have known why the visit was so quick because anyone that is decent here has a crazy wait time. I will not see her again because she would not order an MRI and she said drugs were the only option. My GP ordered an MRI but it will be at the end of July as well. I am not in agonizing pain anymore, I just have twinges throughout the day and sometimes they are about 10 to 40%. Only a few have stopped me in my tracks. I am finding that the burning is starting again but at a way less intensity. I am taking what the neurologist prescribed but I think that what worked for me 2 months ago is not now. Before the neurologist visit my doctor told me to increase my dosage to 300 mg twice a day, but when I tried it the first time, my heart beat really fast, full body sweat and I felt like I was falling off a building, like I was going to faint. I lied down and I didn't move for four hours. Needless to say, I stayed at my 200 mg twice a day. I would rather take the 200 mg dosages 3 or 4 times throughout the day than increase my dosage only twice a day. I am dealing with other health issues right now that seem to be over riding the TN problem. It is hard enough to deal with TN never mind everything else all at once. My life changed literally overnight. Thanks so much for your advice and concern.
Richard A. "Red" Lawhern said:
Collette, you're going to do whatever you decide to do, but I must in conscience gently warn you that taking less than the prescribed level of a medication is a great way to cause yourself deep trouble.
Likewise, a four-month wait to be seen by a doctor for effective treatment of agonizing pain is outright malpractice. If your so-called "free" health system can't do better than that, then you may want to consider sending the Province director of your health service a letter on lawyer stationary, informing him that your local neurology staff is committing such malpractice. Failing that, go to an emergency room or urgent care center, or find a private doctor or come south of the US border. We have waiting times down here too in rural areas -- but it's more likely to be a month than four months.
Not getting adequate treatment for pain may indeed (as Gloria says) cause lasting damage to the Central Nervous System, by allowing the buildup of toxic genetic mutations and chemical byproducts of chronic pain in the bloodstream.
Anxiety can cause your heart to beat fast and cause you to sweat profusely. I am not saying that this happed to you. But it has happened to me before at different times when I least expected it. Even when I didn't know what I would be anxious about I had it sooo bad. Of course, it is controlled now with Effexor. Just thought I'd mention. . .
That is a good point. I had no idea that upping my dose by 100 mg would do that so I was not anxious about it. I only have that feeling when I am going to pass out which I have only done from medications like oxycodene and one type of dental freezing.
Collette
Min C said:
Anxiety can cause your heart to beat fast and cause you to sweat profusely. I am not saying that this happed to you. But it has happened to me before at different times when I least expected it. Even when I didn't know what I would be anxious about I had it sooo bad. Of course, it is controlled now with Effexor. Just thought I'd mention. . .
Thanks Min . . . the burning pain in my ear is getting stronger tonight so will go see my GP on Monday. Percocet/oxycotin(?) does not touch the pain for me. I will have to ask the doc about Amitriptylen. It is all such a trial and error.
Hugs,
Collette
Min C said:
Well I hope you do ok until you can see the doctor then!!!
Cleo, I'd like to see the reading references on Lupus and Tegretol. This is an association I have never seen in medical literature, and odds that high would normally have gotten any drug pulled from the market years ago. Tegretol has been in wide spread use not only for TN but for seizure disorder, for over 30 years.
One thing, you may need to tritate the pills and tritate up SLOWLY to the 600 mg if your system is that sensitive. So add 1/2 per day every 7 days until you are up to your 600 mgs a day. I found with Tegretol when I was on it, I had to increase dosage extremely, extremely slow.
I should note that my doctor told me to do this this way......... so as always, before embarking on messing with any prescriptions as they are prescribed, touch bases with your doctor. Can you call him/her with a question? That might be the best way to deal with asking about tritating.
Interesting study, Cleo. However, let's please keep this finding in perspective. The actual risk to TN patients for developing Lupus is much lower than "88%".
875 cases of Lupus in the UK were selected for study in a particular year period, out of millions in the UK national database of over 98% of the population. Among these 875 cases, 28 had been treated with Carbamazepine. Compared to a control group of people who had no history of autoimmune disease, the risk of developing Lupus while under treatment with Carbamazepine was a factor of 1.88 higher than would have been expected from random selection among the entire population.
To be very clear: the overall incidence of Lupus itself (all ages, all sources) is on the order of 28 per hundred thousand in the UK -- about double the incidence of TN. While the risk of getting lupus from treatment by Carbamazepine is elevated, the chances of having both disorders at the same time are tiny.