Tegretol reviews and information please

I saw my first neuro today and he was baffled pretty much that other drs had tried me on neurotin and currently on lyrica. He switched me to tegretol starting at 100 mg three times a day. I go back in a month. Does that sound like the average starting dose? Does it work for you? How much are you currently on? How long did it take for you to notice positive changes? He said if I have no luck with tegretol next step ( just like my pain med Dr said) referral to neurosurgeon for possible gamma knife or who knows what. Please any feedback

300 mg/day sounds like an average starting dose. Some people need to be tapered up from that level to reach a therapeutic level in the bloodstream. I've talked with patients who were taking up to 1200 mg/day, some of them with significant side effects such as "brain fog" and sleepiness. Most will tend to notice a moderation of their pain within days of reaching that therapeutic level, sometimes sooner. A few will have allergic reactions. Your blood work should be monitored regularly when you are on any of these drugs.

Before you consider surgery, there are other drugs and combinations that might be considered: Trileptal, Baclofen, Phenyoitin, the tri-cyclic antidepressants like Amiatriptyline or Nortriptyline. Some patients do well on a cocktail of meds that includes a mild tranquilizer or muscle relaxant. Some do well with NSAIDS or opioids or even an anti-anxiety agent.

Be advised that Microvascular Decompression is widely considered to be the gold standard of surgical procedures for the type of TN that presents with volleys of electric-shock stabs. Pain will recur with Gamma Knife in 50% of successful procedures within three years. Neither of these procedures is as successful with patients in whom the pain has a constant 24-7 burning, throbbing, boring character ("Atypical" TN).

Note: I am a well read layman, not a medical doctor. You might want to read the material under the TN Basics tab in our menus, and discuss that info with your doctor.

Regards, Red

I also tried antitriptlyine ( can’t spell it) with no success. And I also take kolonopin and lexapro which hes leaving me on for now.

I’m pretty sure nvd is not something any Dr would do to me. I just want a neurosurgeon to do some kind of injection , compression , block something…I’m 28 years old I’m to young for all this meds stuff. I’m married I want a baby…how can I do that on these drugs? I’m so torn

I can't advise you on the potential interactions of drugs in pregnancy. But one lady who might be able to help is named Cindy Ezell. She's the patient representative for the US TN Association, and she had a daughter while taking Tegretol for her TN pain. She's also a former registered nurse, and very well grounded on patient concerns. You may contact her through the following page: http://fpa-support.org/contact-us/

Thank you red! You have a huge heart it seems you live your life to help others! Very rare quality! God bless you!

Thanks, Jennifer. I do what I can. My wife has managed TN for the past 19 years on medication, and I got into the field as a webmaster and site moderator out of a desire to help her and others who share her situation.

Go in Peace and Power

Red

Jennifer Muir said:

Thank you red! You have a huge heart it seems you live your life to help others! Very rare quality! God bless you!

Hi Jennifer,

I have been on tegretol extended release for 4 years now. That is a good dosage to start at. I have had good luck with it, although I have my flare ups every so often and I have to tweak the dosage until I feel better. I am on a total of 1200mg right now, but have been as high as 1800mg. I tried some other meds that did not help me so for now, the tegretol is my best friend!

I agree with Red that you should not jump to surgery if tegretol does not work. From my understanding of TN, we should try one or several combinations of medications before we even think of shots or surgery. I second Red's advice to speak with that contact if you would like to get pregnant.

Good luck!

My experience has been that Trileptal works better for me than Tegretal. Mostly because I have diminshed side effects. I don't remember how much Tegretal I was taking before switching to Trileptal. Prior to my MVD in 2/2014 I was taking 1200 mg of Trileptal 2 X daily. I was still having a lot of break through pain. Since the surgery I have gradually increased Trileptal to 600 mg twice daily. I have tried too many medicines to count. You might want to read the first 2 paragraphs here: http://trigeminalneuralgia-ronaldbrismanmd.com/MedicinesTrigeminalNeural.html to compare the two drugs. Lots of info about other drugs too.

You might already know that if you are taking the name brand these and many other anti-seizure meds you should be cautious about switching to generic. The same sometimes goes for switching from the generic to the name brand. You should now that government guidelines require generic manufacturers to duplicate name brand drugs within a range. They do not have to be exact copies of the name brand. That does not mean that only the color might be different. The active ingredients can and often are slightly different. And then you have the problem that pharmacies buy the lest expensive version of the generic when they order. A generic drug made by company A is not, necessarily the same as the "same" generic drug made by a different company. All made within guidelines but different. My niece is a pharmacist and she told me that she has patients that do better on generics vs name brand and some that do better with brand name vs generic. I do better with name brand vs generic. Probably more than you wanted to know .

Best wishes.

Give tegretol a chance. 300mg is a relatively light daily dosage. Working with my neurologist, my script allows me to vary my dosage from 300mg a day when things are good and up to 1200mg a day when things get really bad. I also supplement with neurontin (up to 600mg a day when needed). I've been doing this for 12+ years and am a minimalist when it comes to medication. But it's a comfort to know I can ramp up for short periods of pain as needed, especially during the cold weather.

My experience with tegretol is that at the very beginning it helped me so much that I forgot about the TN, but to my dismay it stopped working for me. My Dr. Increased the dose to a very high dose and I was not able to tolerate it at such high doses. I loved the Tegretol. I have tried everything under the sun at this point and notbonebthing has worked for me. I am now on vicodin 10mg and low dose of Tegretol. I go see a neurosurgeon on this coming Tuesday. My neurologist has tried everything, ao now surgery… Good luck with it… I truly truly hope it works…

Well not even two full days in and I think the tegretol is really helping! Let’s hope it stays this way!

I was prescribed this right away from my neurologist. I was on it for nine days with little to no pain. On the ninth day I broke out in a huge painful rash. I also experienced serious brain fog while on the drug. It felt like I was going to have to choose between being mentally alert of have pain for the rest of my life. But ultimately my body decided it didn’t like it. However, it seems as though the majority of the people on here love it and it works for them. So good luck :slight_smile:

That is the same dose that I am on. Today is my third day and I started seeing improvement with my ear (ache) yesterday. I stayed home from work today as the medicine (I also started Lexapro 5 days ago) makes me somewhat loopy.

Now I feel like its not working…I’m so sick of all of this I feel like just giving up nothing ever helps me . maybe it just needs to be increased. What is a normal maintenance dose?

I don’t know. Neurologists started me on 100 mg three times a day. It really has helped but makes me very spacey. That feeling, I believe its supposed to pass soon though.



Richard A. "Red" Lawhern said:

300 mg/day sounds like an average starting dose. Some people need to be tapered up from that level to reach a therapeutic level in the bloodstream. I've talked with patients who were taking up to 1200 mg/day, some of them with significant side effects such as "brain fog" and sleepiness. Most will tend to notice a moderation of their pain within days of reaching that therapeutic level, sometimes sooner. A few will have allergic reactions. Your blood work should be monitored regularly when you are on any of these drugs.

Before you consider surgery, there are other drugs and combinations that might be considered: Trileptal, Baclofen, Phenyoitin, the tri-cyclic antidepressants like Amiatriptyline or Nortriptyline. Some patients do well on a cocktail of meds that includes a mild tranquilizer or muscle relaxant. Some do well with NSAIDS or opioids or even an anti-anxiety agent.

Be advised that Microvascular Decompression is widely considered to be the gold standard of surgical procedures for the type of TN that presents with volleys of electric-shock stabs. Pain will recur with Gamma Knife in 50% of successful procedures within three years. Neither of these procedures is as successful with patients in whom the pain has a constant 24-7 burning, throbbing, boring character ("Atypical" TN).

Note: I am a well read layman, not a medical doctor. You might want to read the material under the TN Basics tab in our menus, and discuss that info with your doctor.

Regards, Red

I am having a pretty awfu time of it. Diagnosed yesterday afer three weeks of other docs with other thoughts. Am on 300 MG Neurontin. Not helping yet, I hate to eat or talk. Have had a few crying jags-very unlike me. Pain is awful…




HopefulNDayton said:

I don’t know. Neurologists started me on 100 mg three times a day. It really has helped but makes me very spacey. That feeling, I believe its supposed to pass soon though.

300 mg of Neurontin is rather low, Holly. You'll likely need to be tapered up over a couple of weeks to some dose level above 1000 mg/day, to reach a therapeutic level in the bloodstream. My spouse is on 2700 mg/day and the max recommended dose is 3600. Unfortunately, many patients have unacceptable side effects before reaching therapeutic dose.

Hopeful, it can take up to a month to acclimate to any of the anti-seizure drugs. Try to be patient and let your body get used to the medication.

Regards both,

I should have said 300MG 3x a day…This is really hard. I am normally such a positive outgoing person…I fear what this is doign to me…