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Doctors' Answers to "Frequently Asked Questions" - Tegretol

These comments are made for the purpose of discussion and should NOT be used as recommendations for or against therapies or other treatments. An individual patient is always advised to consult their own physician.

[posted 07/19/2000]
Question: How much tegretol is passed through breast milk? Does it affect the baby?

Answer: It is present although I do not have quantified data. You can check with the manufacturer,(Novartis 888-669-6682) but not recommended for nursing mothers.

[posted 07/4/2000]
Question: I am on Tegretol Retard (600mg/twice daily) and my partner is on antidepressants that should not be taken with Tegretol. Whilst of course she isn't on Tegretol, is there any danger to her if I take it (e.g. danger via sex, etc.)

Answer: No.

[posted 05/16/2000]
Question: I have been taking tegretol for 15 years now. I am 36 years old. About 5 years ago, I noticed a marked decrease in sexual appetite. That has steadily decreased since then. Is the tegretol having anything to do with it? I've had one seizure and that was 15 years ago.

Answer: If it was the Tegretol alone, it would have happened with the initial taking of the drug. This also assumes your blood levels have been checked regularly and are normal and your liver has not experienced any changes with the medication. The liver is responsible for the metabolism of both tegretol as well as your sexual hormones, changes here could theorectically cause this problem.

[posted 04/3/2000]
Question: i'm taking 1000mg tegretol per day for epilepsy. i have noticed
sexual dysfuncts. Aand an overall sense of feeling lethargic
all of the time. what can i take? any herbs? supplements?
please advise

Answer: First of all ensure that your levels are in the therapeutic range. If so, then there aren't many answers. Viagra can be helpful for the sexual problems. As to the lethargy, this will last as long as you are taking the drug. There are other medical options, discuss these with your md.

[posted 03/18/2000]
Question: I have read that when taking Tegretol you shouldn't drink
grapefruit juice. Is it okay to eat grapefruits or with that
also effect how your body absorbs the drug?

Answer: It is thought to affect the p450 system which affects the metabolism of the tegretol. If you eat regular amounts, it probably doesn't matter since your md will just adjust the dosage. Sporadic amounts could be a problem. Although this is to be considered, I have never thought it much of a clinical problem since the levels have to be followed(and the dosage adjusted) regardless of your diet.

[posted 02/7/2000]
Question: I have been on tegetol for five years and some I forget what I am suppose to be saying or doing.
I am wondering whether or not it is affecrting my memory as well as my speak.

Answer: Shouldn't be unless your levels are too high or you are experiencing toxicity. You need blood counts and liver functions. I'd check a B12 level and Thyroid also-common causes of decreased memory and not related to the tegretol.

[posted 11/23/1999]
Question: Had bad sinus infection a year ago. It resolved but facial pain stayed and never went away. Was on Neurontin. Changed to Tegretol 7 months ago. Now going on time released Tregretol - 800 mg a day. QUESTION: I have had a sensation of facial heat for the past eight months. Is this symptom known to be related to trigeminal neuralgia?? Or what? If I am on 800 mg of Tegretol now, and had failed Neurontin, if I get used to Tegretol, will I have to live in pain again?? Scary thought.

Answer: Usually tegretol will continue to work and you won't develop tolerance if the blood levels are maintained. The facial heat is probably the neuralgia.

[posted 11/11/1999]
Question: I had a successful removal of a left frontal beinign meningioma 16 months ago. After recovery I resumed smoking (2+ packs/day) and drinking moderatly to heavily
at night, daily, which is normal behavior for me. I recently had a mild seizure where I lost bladder control and was dis-oriented for approx. 45 min. My Dr. has
perscribed 200mg. of Tegretol 2X per day, and complete cessation of smoking and drinking. My questions are:
Is a lifetime of Tegretol advisable or overkill based on 1 seizure?
If I do take the Tegretol, can I drink. If so how much? Drs. opinions to me have varied from complete abstinence to a couple of drinks/day is okay.
What are the risks of drinking while taking Tegretol??
Am I at any greater risk from smoking, because of my condition, than any one else?
A 1 day post seizure EEG was done and a 30 day post-seizure EEG and annual MRI's perscribed. Are both necessary?
Do I really need annual MRI's? They have been suggested to determine if there is tumor re-growth. Wouldn't an EEG be sufficient?

Answer: Most physicians would put you on seizure medications at least six months following this surgery to avoid exactly the problem you describe. You will need to be on Tegretol for a long while, some would advocate forever, certainly at least a year. Once your Tegretol levels are stable and there is no evidence of liver toxicity you can start 1-2 drinks a day watching your liver functions to ensure there is no liver toxicity. You are describing a potential lethal situation(untreated or unresolved seizures) don't take these lightly. They need to be suppressed. Your doctors are right on target with the MRI and EEGs. The risk of Tegretol is on the production of White Blood Cells(which need to be checked occasionally) and liver toxicity.

[posted 08/16/1999]
Question: I am a 29 year old female recently diagnosed with sensory seizures. I am currently taking
100mg tegretol three times a day. Is pregnancy an option while i'm on this medication? How high is the risk of birth defects
with this drug?

Answer: Tegretol can clearly cause harm to a fetus. There appears to be an association between in and spina bifida, not a good drug with pregnancy.

[posted 08/9/1999]
Question: I am using Carbamazepine 200 mg - 3 tablets a day since
September 1997.

Is there any other alternative medicine to cure Trimenal
Neuralgia pain.

Answer: This is the first place to start and usually works, if your blood levels are where they need to be. Have these been checked? Dilantin is sometimes of help or seeing a pain specialist for ablation of the nerve itself.

Tegretol and Hormones? [posted 1/14/99]
Question: What effect does tegretol have on hormones? I was taking a very low dose and my period virtually went away (I'm not complaining), but I wanted to know more about this.

Answer: None that I'm aware of.

Tegretol [posted 1/7/99]
Question: I am a 36 year old female bipolar who is currently taking 600 mg of tegretol (along with 50 mg zoloft) for the disorder. Is it commonly prescribed for bipolar or is it an off use?

Answer: Helps many patients, but not FDA approved. However, we use this drug for lots of non-FDA approved indications.

Tegretol & Weight Gain [posted 11/25/98]
Question: My daughter started taking Tegretol 100mg 3x a day in April of 1998, three months later her Dr. switched her to Tegretol-XR 200mg 2x a day. In the last 6 months she has put on 17lbs. Is  this from the Tegretol? She is 12yrs. old. Thanks

 Answer: Possibly, have you checked serum levels? On the other hand, girls tend to add a lot of weight just prior to the start of menses, usually seen at age 12.

How to Cease Medicating with Tegretol [posted 11/25/98]
Question: I am a 39 yr old female who had one seizure 1/98. Subsequent tests resulted in locating a meningioma on the central nervous system which caused numbness on the left side of my entire body. Carbamazebine/Tegretol was the final medication I was able to take after trial and error. I now take 400mg daily. The majority of the side effects came and went and I am doing very well on the drug. My question comes with the weight gain. I am very petite in size and have put on 12lb. resulting in a 2 clothing size gain. I have been told that the medication has caused a metabolic change and there is nothing I can do and the weight will not be lost. Could the medication be effecting something else? Is there any hope of regaining my previous weight and size?

Answer: Not a usual reaction with Tegretol, but does occur. However, the mechanism appears to have something to do with hunger control and not metabolic changes. Most weight gain due to medications will slowly improve if the medication is removed. Have your tried neurontin?

Tegretol & Determining if Seizures Will Occur [posted 11/6/98]
Question: I am a head injured hemiplegic who has been taking Tegretol 200 mg. 5x a day for approximately 9 yrs. How bad is this for my system, especially my liver? What about getting off the medicine after all this time? Is it true that the only way to know if I can is if I don't have a seizure as I wean myself rom the daily dosage?

Answer: It can cause liver problems, but usually won't if monitoring of liver functions is done occasionally. As to getting off, it would depend on what your EEG looks like. If you still have spike activity, I think it would be futile. However, if the EEG is normal or nearly so, you might be able to stop the Tegretol. It would depend on how frequent the seizures were and your previous EEG, but, possible. Discuss this with your neurologist.

Tegretol Time Release
Question: I have been taking 400 mg Tegretol XR every 12 hours for one month for treatment of temporal lobe partial complex seizures. I notice that about an hour before my next pill I have symptoms of confussion, balance, and feel like I did before going on the medication. My doctor says that the levels should stay the same and there is no way I should feel this difference. Is it possible that the time release pills are putting more medicine in early on and insufficient later?

Answer: Test the level at that time.

Should I Start Taking Tegretol for Shingles?
Question: I am 62 years old, and I have been diagnosed with Shingles. The doctor prescribed Zavirox, Ultram and 1400 mg ibuprophen per day. Also, I presently take Synthroid, Accupril,Premarin, and Voltarin on a daily basis.I have been in extreme pain on my rightside. I have recently experienced more of a rash which has covered my face and neck and several patches on my right side--basically in a belt at the lower rib cage, behind my right shoulder and another belt extending from the breast to the back. My first attack goes back years. The pain has been recurrant, but not always with so much of a rash. The doctor suggested that I might consider Tegretol, but I would need to be monitored by a neurologist or an internist. Since Tegretol is an anticonvulsant drug, I am wondering how does this help Shingles? Any information you can provide is appreciated.

Answer: Well, tegretol might be of help;but, I would try Zostrix cream first. Available OTC in .025 or .075. Start with the .025-apply it to affected areas twice a day(once a day the first week if it stings too much). It will take 3-4 weeks to work, so don't give up on it. But, tends to be very effective and without the side effects of tegretol.

Tegretol & Short Term Memory Effects
Question: I am 25 years old, i take Tegretol-xr/600mg twice a day for mild seizures, for the Most part it has been a wonderful drug with few side effects. However, i Feel my short term memory has been lacking (those are the only words i Know to use). Have you heard of this before and do you have any suggestions?

Answer: I assume that your drug levels have been checked and are in the correct range? If so, I'd try other drugs. Your short term memory can be tested quantatively before and after discontinuing the Tegretol to see if there is any effect.

Carbamazepin (Tegretol)
Question: I had Bell’s Palsy 5 years ago and I have recently had some pain around my nostril expanding deep into my cheek bone. Also, my left eye has been drooping and watering. My gp prescribed carbamazepin, three times daily. I am unsure about this medication since pharmacy printout states it is an anti-convulsant. Do you recommend I continue to use this medication?

Answer: Tegretol is commonly used for other conditions other than seizure disorders. In particular, a condition called Tic douloureux caused by 5th facial nerve pain. If this is what he/she is treating you for it is the drug of choice. It certainly sounds like this from your description and is probably not related to the previous Bell's Palsy. I'd probably keep on it, but it sounds like your communication with your physician is less than perfect.

Question: My mother is being treated with chemotherapy for breast cancer. She also takes Tegretol. Lately she has been dizzy and off balance. Could this be that the Tegretol is not mixing well with the chemo drugs. I would like to know if there are any negative interactions.

Answer: I'll need to know more specifics concerning her chemo. But, I'd check her Tegretol levels closely.

Tegretol weaning
Question: My daughter was recently diagnosed as having had a partial complex seizure. This diagnosis was made about a week after the seizure, and she was placed on Tegretol. About 10 days later she developed an allergic reaction. She began to develop a rash and her lips began to swell. At this point she was taken off all medication. About 4 days later she had 2 seizures during the day. These seizures were her first since the initial seizure (1 week unmedicated and 10 days on Tegretol). She has since been put on Dilantin and has had no further seizures or allergic reaction. Is it possible that the sudden discontinuation of the Tegretol triggered the seizures? Is there anything else that can be done when an allergic reaction is seen?

Answer: Stopping the Tegretol didn't cause the seizures-- her basic problem did. When someone has a seizure disorder it will usually initiate seizures until a drug reaches appropriate levels and suppresses the seizure focus. When one has trouble with a seizure drug it is common to stop the drug and allow it to "wash out" of the system prior to starting a second drug. This is to prevent confusion when the second drug is started as to whether they symptoms are due to the first seizure drug or the second. It is common to have several seizures as one searches for the appropriate drug at appropriate levels(to avoid toxic reactions).

Question: I have taken phenobaritol-dilatin for the past 25 years for seizures. I am currently taking Tegertol-xr(since November 1996). My adverse symptoms seem to be nervousness, nausea, vomiting, and hyper verbal activity. I think that I am acting differently, but most of all my family members thinks that I am also different in my behavior-- especially in my rapid speech. The only other change in lifestyle is that I stopped smoking in march of 97. Would this contribute to nausea & vomiting? What is the difference between Tegertol & Tegertol-xr. There was no noticeable differences when I was taking tegertol.

Answer: What have your blood levels been doing? If they are higher, its probably the new tegretol. If the same probably not. However, you can see fairly easily by switching back to the old tegretol for a couple of weeks.

Question: The drug Tegretol was given to a friend of mine after neurosurgery for base of the skull Meningioma. She presently has Lupus and results of a recent blood test showed antinuclear factor positive. What does all this mean? Is there a connection between the various elements?

Answer: Tegretol is an anti-seizure drug often prescribed after brain surgery to prevent any subsequent seizures due to irritation of the brain with the surgery. It is usually tolerated well, but blood levels are very important as is checking the white blood cell levels which it can occasionally effect. Sedation, itching, and liver toxicity are the most common effects seen in my patients. Antinuclear antibody(abbreviated ANA) is a diagnostic test for Systemic Lupus Erythematosis. It is also elevated in other connective tissue diseases-- like Rheumatoid Arthritis. There are some drugs that can cause the body to produce these antibodies(called drug induced Lupus). These include procainamine, isoniazid, hydralazine, methydopa, quinidine, interferon, some birth control pills, chlorpromazine, etc. Tegretol is not usually on this list.

Question: My 17 year old multi-handicapped son has been on Tegretol for about 10 years. He has been seizure free for the past five years. He was taken off Tegretol the second week of December. On Sunday, January 5th, he became very anxious, belligerent, hyper, verbal, paranoid, complained of severe stomach pains and had trouble breathing. This behavior is totally out of character for him. He is the most easy going, sweet natured and joy to be around child you could ever have. Everyone who knows him is worried to death over his totally bizarre behavior. Does he need to go back on the Tegretol? Is it not only a seizure medication but also a calming drug. Could you offer any suggestions?

Answer: Tegretol has many uses other than seizures. It is used in chronic pain, for example. I am not aware of the "calming" effect other than the normal mild sedative effective of the drug. It may be that he is having temporal lobe seizures which produce behavioral changes. You might discuss this with his physicians and see if a re-trial of the medicine would be in order. You do not mention why he was taken off the medication.

Question: Why would someone be taking Tegretol?

Answer: Tegretol was initially an anti-seizure drug. This is still its main use. However, it is also used in chronic pain syndromes, migraine headache prevention, and facial pain syndromes. These are not all FDA approved but clinically used commonly.

Question: A patient is taking 900 mg per day of Tegretol (300 mg every 8 hours). The patient is a 25 year old female who has been seizure free for seven years. It has been recommended that she go to 800 mg per day (400 mg twice per day) of a newer version. Is there a newer version that allows for twice daily dosage vs. the old three time dosage? Is it proven and successful? What allows the change from 900 mg to 800 mg?

Answer: The issue is the drug level not the oral dosage of the drug. I'd be aware of her current level (obviously successful) and try to maintain the same level with the new medication. Tegretol lasts a long time when ingested and decreasing the frequency is helpful in compliance.

Tegretol Withdrawal
Question:My husband, at the age of 57, suffered a first seizure and was put on Dilantin after extensive testing that included CAT scan, EEG, x-rays, etc. The side effects he suffered were so intense that he was switched to Tegretol. This made little difference in the symptoms he was experiencing. He stayed on anti-seizure medication for 17 months, until he made the decision on his own to wean himself from it. He was not able to get any guidance for this procedure, and carefully reduced his levels over a two month period until he stopped taking Tegretol. He has been off of the drug for just over a month and still suffers withdrawal symptoms (primarily dizziness and drowsiness). How long can he expect to experience these feelings? When can he expect to feel normal again?

Answer: The symptoms of the Tegretol should be gone within 10-12 days after stopping. There is no withdrawal phenomenon with Tegretol. It may be that this is one of the manifestations of his seizure disorder.

Question: I am a diabetic patient, oral only as of yet. I have recently experienced some numbness in my hands and/or tingling in my forearms. My doctor proscribed Tegretol, 200 mg 2/daily. I concerned with everything I have read about Tegretol, numbness, etc., isn't what it is suppose to fix, not cause? The pharmacy filled the proscription with the generic, of course, I am unfortunately a member of a HMO. I am also concerned as I have had, and do have problems with my back and neck, disc problems, etc., but the Doctor said we should try the drug and said that an MRI was probably not needed. Are there any real problems with the drug? I do take Pravachol 10 mg, Glucophage 500 mg 2x/daily, Glucotrol XL 10 mg 2x/daily, Zantac 300 mg 2x/daily, and codeine with tylenol for pain sometimes.

Answer: The peripheral neuropathy of diabetes mellitus usually occurs after 15 or more years of diabetes. There are many reports of neuropathy occurring before this time, but that is a good start. Also, the neuropathy of diabetes begins in the feet and is not felt in the hands until the numbness extends to the knees or thereabouts. If you have numbness in both the feet and the hands simultaneously, I strongly doubt that this is neuropathy of diabetes mellitus. I’d ask for a neurologist’s opinion on the matter.

Tegretol - Drug Interactions
Question: My son is taking Tegretol for his epilepsy and he has a throat infection. Is there any drug interaction when he takes Cefzil?

Answer: Tegretol(carbamazepine) is a drug used mainly in seizure control. It has several potential interactions including phenobarbital, dilantin, primidone, coumadin, doxycycline, theophylline, haloperidol, valproic acid, cimetidine, erythomycin, propoxyphene, isoniazid, fluoxetine, calcium channel blockers, and terfenadine. I know of no special interaction with the cephalosporins, and cefzil in particular.

Tegretol - Generic
Question: Is there any difference in generic Tegretol and the brand name product?

Answer: Tegertol is a drug used mainly in seizure disorders. It is also occasionally used to treat chronic pain and certain types of facial pain. I haven't seen a major difference in seizure patients treated with tegrotol. This drug has drug levels available and keeping the drug in the therapeutic range seems more important than the manufacturer. However, I have individual patients who seem not to tolerate generic, either with different side effects or with lack of efficacy. I would ensure that your pharm deat keeps the same manufacturer and notify you of changes. This seems to affect how drugs are used more than whether they are brand name.

Tegretol - Allergic Reaction
Question: My doctor prescribed medication for me to keep my moods in control. I have broken out in a red rash all over my entire face that resembles a sunburn. Could this be attributed to the medication, Tegretol? Could a lesser dosage help?

Answer: Tegretol (carbamazine) is a drug used in treating seizure disorders and trigeminal neuralgia. Because of it's unusual ability to treat trigeminal neuralgia, it is often used in pain clinics for different chronic pain syndromes although the strict FDA guidelines are for treating only trigeminal neuralgia. This is common practice of most physicians to use known drugs in less than "strict" applications if they work. The unfortunate part of Tegretol is its side effects. It needs to be watched extremely closely with regular blood tests and close monitoring. The most serious effects are its effect on white blood cells, platelets, and liver function. Use with other drugs, particularly dilantin, coumadin, certain antibiotics, theophylline, cimetidine(Tagamet), and calcium channel blockers have been reported to drastically affect the serum levels. Severe dermatologic reactions such as Stevens-Johnson Syndrome and Lyell's Syndrome can occur with this drug and have caused fatalities. Consequently, skin rashes are not taken lightly while on Tegretol. Also, the drug levels appear to have little to do with these dermatologic reactions. Unfortunately, there is no similar drug to try - it is in a class by itself.

Question: Tegretol & trauma induced Trigeminal Neuralgia

I'm interested in the treatment protocol and/or effects from above treatment.

Answer: Trigeminal Neuralgia is pain along the distribution of the trigeminal nerve. This is usually to the front of the face. This disorder is initially treated medically with carbamezepine, but there are surgical options. A recent study in the New England Journal of Medicine showed great improvement with a brouical approach. This should be discussed with a neurosurgeon.

Tegretol and Phenergan
Question: My son is taking Tegretol for his seizure. He has a cough. Can he take Phenergan (promethazine vc) for his cough. Is there drug interaction if he takes both of these medicine ? He's 6 years old.

Answer:Tegretol(carbamazepine) is a drug that is mainly used for seizure control. It also is used to treat a condition called Trigeminal Neuralgia which is pain from one of the facial nerves. It is commonly used by physicians in chronic pain syndromes with mild success-although not approved for this indication. Tegretol levels need to be followed closely due to the toxic effects of this drug at higher levels. Toxic effects are impairment of levels of consciousness, cardiac irregularities and neurologic symptoms. Other side effects not so related to blood level are decreasing white blood cell counts and various severe skin disorders-both of which can be fatal. The drug should not be used with the class of anti-depressants called MAO inhibitors as well as tricyclic anti-depressants. Other drugs like phenergan are not a Specific problem if the drug level is checked regularly.

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