I am unable to take both tegretol and trileptal due to liver toxicity. Doctor says I'm one of a kind to be so sensitive to these two drugs. Just wondering if anyone shares this sensitivity and if you've found anything else that works without this particular side effect. I've been taking gabapentin since the beginning of this ordeal, but it is not effective alone, even at a moderately high dosage. The doc wants to "experiment" with some other drugs because he really has no clue what to do next. He is open to suggestions. Your input is most appreciated!
I'm quoting Red on here -- taking out those two meds - these seem to be some options depending on Type I or II
Anticonvulsant medicines—used to block nerve firing—are generally effective in treating Type I and some cases of Type II TN. These drugs include ------, topiramate, clonazepam, phenytoin, lamotrigin, and valproic acid. Gabapentin or baclofen can be used as a second drug to treat TN and may be given in combination with other anticonvulsants. Other "booster" medications include mild muscle relaxants like Flexeril, and low doses of tranquilizers such as Valium. Lyrica is effective in some patients.
Tricyclic antidepressants such as amitriptyline or nortriptyline are used to treat pain described as constant, burning, or aching. Common analgesics and opioids are not usually helpful in treating the sharp, recurring pain caused by Type I TN though many patients with Type II TN or trigeminal neuropathic pain do respond to opioids. If medication fails to relieve pain or produces intolerable side effects such as cognitive disturbances, memory loss, excess fatigue, bone marrow suppression or allergy, then surgical treatment may be recommended. In many patients, TN is a progressive disorder which may become resistant to medication over time, prompting the patient to actively seek surgical treatment.
Hope this gives you some guidance for your doctors -- they are sometimes clueless.
Only 12 in 100,000 patients per year makes knowledge scarce!
I had to be taken off Tegretol as it was having a detrimental effect on my liver. Also as my liver was under attack I suffered general poor health with many infections and periods of being unwell. I now take Gabapentin and luckily for me it manages me, sorry to read that is not the case for you.
If anyone else is reading this and it is worrying them, I would like to say that the reaction we both have had remains uncommon. It should not be a cause for concern for most Tegretol takers. Regular blood tests are recommended when taking Tegretol.
I tegretol gave liver and kidney damage to me. It was stop immediately because of this. Tripetal I was allergic to it and again therapy was stopped immediate. I’m lyrica right now at a higher dose. There side effects but nothing that will end up putting me in the hospital like the other two. Also I’m on an extended release opioid. I’ve tried multiple other drugs but my body can not tolerate them or give no relief. It is frustrating to find the right combo of drugs. My pain doctor is still adjusting mine and I suspect at my next appointment there will be more adjustments as my pain level is silly high. Look over the pain info page and I think there is a list of drugs for tn that might be helpful for you.
I got blood tests today...after being on Tegretol and Trileptal now for about 13 months... I had to ask for the tests! But I would not have known to ask if it had not been for the input of everyone on this site...THANK YOU so much for you invaluable information! I will update when I get the results (I take Trileptal 450mg twice a day with Tegretol up to 400mg as needed for breakthrough pain).