Has anyone ever taken Tegretol? My doctor wants me to go on it. I want to know your experience with it. TIA
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Is it for pain relief? I was on it (as Carbamazepine) a few years ago in combination with several other meds. It didn't help me, but nothing except Ambien has ever helped me with pain, so I'm not the best person to go by. I don't recall any side effects, but I do remember that I had to chew it. It wasn't the worst thing* I've ever tasted, but I didn't enjoy it.
*The worst thing in the "therapeutic" category I've ever tasted was liquid Co-Q10. If anyone ever suggests it to you instead of capsules, just say no.PPMS
Dx 07/13
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thank you for the replies
I'm having dizzy spells along with a tinglin/electric shock feeling simultaneously for the last month or more. It started as 2-4 a day. Now its up to almost 30 a day and it happens when I'm driving. It literally lasts for 3 seconds and then I'm fine again. I had a brain mri and no new lesions.April
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I didn't know that Tegretol does all that. I started taking it for seizures. One day I had a seizure (scared everyone). So the neuro said seizures aren't from MS so they sent me for an EEG and they said there's nothing in my brain pointing to epilepsy. So then they sent me for an MRI and then said - Ohhh, Your white lesions are overlapping with your gray matter (something like that) so the MS was actually what caused the seizure but it really wasn't an MS problem. So that neuro panicked and put me on a high dosage of tegretol and I felt terribly sick and thought that was the end of me...
Well it finally worked it out and I took tegretol for 5 years. No problems except I think it makes you tired. (or maybe the MS made me tired ). So after 5 years with no seizures I stopped the tegretol and then 5 years after that I had a seizure. So back to tegretol. I stopped after 5 years but when I started taking ampyro to help my walking I went back to tegretol but only 100 mg/day.
I'm not in any pain (never was), so maybe the tegretol is what keeps me pain freeDx 1/86 at age 23
Copaxone 1993 - 2011 (except when I was pregnant or nursing)
Tysabri - 2011 - present
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I have found that the second generation Trileptal works much better than Tegretol. However, I became allergic to Trileptal (oxcarbazipine) Now I am back on Tegretol for Trigeminal neuralgia and seizures. Personally, it doesn't do much for me but help me sleep at night. I take other meds for seizures because it didn't help. For my TN I get steroid shots in my face and head.
It may work for you, especially since you don't know if you have MS or not. It is really good for peripheral neuropathy. Try it. If it doesn't work, ask for something else.
Side effects: None except drowsiness, but if I take it all day I get used to it. Now I only take it at night to help me sleep.
Good luck
LisaDisabled RN with MS for 14 years
SPMS EDSS 7.5 Wheelchair (but a racing one)
Tysabri
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Tegretol extended release vs normal tablets
Thanks for the info I've read in this thread..
Is it possible that the Carbamazepine ER formula could have different side effects than the normal release tablets? (Besides the method of release, I mean it's the same medicine and same dosage so shouldn't side effects be the same? Yet they're not, ugh!!!!)
I started taking Tegretol (carbamazepine) 100mg twice a day, for a week. That helped but I was tired, I'd rather be tired than go through the "brain tremors" not seizures, and flipping nerve pain to no end.
Then, I just switched to 200mg ER (extended release) to be taken only at night. I woke up swollen and have been agitated and miserable all day.
My doctor doesn't think it should be any different except the nature if the release, obv. but I'm a hot mess. All other things are the same and have been addressed, yadda...
Any info on this med dosage and ER tablets would be greatly appreciated!
P.S. Doctor and Pharmacist said the 200mg ER is a 24 hour release tablet. But the paperwork that come with the Rx say 12 hour. Anyone in the know?
This med seems to be the best choice out of all the other ines for me, so I'm trying to figure how to take it and not swell back up like a balloon. (I've worked sooooo hard to keep the edema down from all the absolutely necessary steroids in the past, I can't take welling back up again 😰.)
THANK YOU!!! 🎗🎗🎗There is always a rainbow!
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Hi Ikaika:
Originally posted by Ikaika View PostIs it possible that the Carbamazepine ER formula could have different side effects than the normal release tablets?
Originally posted by Ikaika View PostDoctor and Pharmacist said the 200mg ER is a 24 hour release tablet. But the paperwork that come with the Rx say 12 hour. Anyone in the know?
Your doctor and pharmacist are correct that the ER formula has the capability of releasing something over 24 hours. But that doesn't at all mean that the tablets release a perfectly metered amount of medication that is exactly the same over 24 hours and that the med only needs to be taken once every 24 hours. (I can see how your doctor may not understand this, but your pharmacist should know better.)
The amount of medication varies over the 24 hours, and the level peaks in the blood somewhere between 3 and 12 hours (which could be why you're waking up swollen and puffy if you take it at bedtime). And that's why, in regular usage, the ER version is taken 2X a day instead of once -- because the peak level should be renewed every 12 hours, not every 24. The normal/conventional tablets peak at about 4-5 hours, and they're usually taken 4X a day to renew the peak level about every 4-5 hours.
Originally posted by Ikaika View PostThis med seems to be the best choice out of all the other ines for me, so I'm trying to figure how to take it and not swell back up like a balloon.
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Update from my above response about having reaction to tegretol and coming off it. I had a mild rash on my arms so stopped taking it. Took neurontin instead.
Eight weeks ago, I started having myoclonic seizures/ movement disorder. Got high dose steroids oral then one week later high dose iv steroids when the oral doses didn't stop them. Still had them.
So my doctor increased my neurontin and started me on clonazapam for seizures without effect. My doctor decided to try tegretol again since I only had had a mild rash. Seizures went away within a couple of days. Was so happy...
Well, two weeks later I got so sick. High fevers, rigors, increased liver functions, severe leg spasms, and more. Was hospitalized for a week. Multiple tests. No infection. The infectious disease doctors told me they have seen this with tegretol many times before. That I was lucky I got into the hospital when I did. Still trying to recover. Out of work eight weeks so far.
So no more tegretol for me. Off for two weeks now and no seizures yet. But just started having weird electrical sensations in my right arm which was happening when I had the seizures. Hoping hoping they aren't coming back.
Tegretol can do wonders but be cautious of its devastating side effects.
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I pray you are feeling better now! Some relief!!
Originally posted by AriD View PostUpdate from my above response about having reaction to tegretol and coming off it. I had a mild rash on my arms so stopped taking it. Took neurontin instead.
Eight weeks ago, I started having myoclonic seizures/ movement disorder. Got high dose steroids oral then one week later high dose iv steroids when the oral doses didn't stop them. Still had them.
So my doctor increased my neurontin and started me on clonazapam for seizures without effect. My doctor decided to try tegretol again since I only had had a mild rash. Seizures went away within a couple of days. Was so happy...
Well, two weeks later I got so sick. High fevers, rigors, increased liver functions, severe leg spasms, and more. Was hospitalized for a week. Multiple tests. No infection. The infectious disease doctors told me they have seen this with tegretol many times before. That I was lucky I got into the hospital when I did. Still trying to recover. Out of work eight weeks so far.
So no more tegretol for me. Off for two weeks now and no seizures yet. But just started having weird electrical sensations in my right arm which was happening when I had the seizures. Hoping hoping they aren't coming back.
Tegretol can do wonders but be cautious of its devastating side effects.
(Reason for my delay is I have been having a joy ride too, not. ER, concussion, new lesions, couldn't stand up, all that jazz...)
Anyway, I truly hope you have received some relief from the seizures and all of the symptoms. That is very difficult, and through your hardships you even toook the time to post on here and help me. May God bless you with His Favor tenfold and His Healing upon you.
I have since stopped the Tegretol. And started a medicine called Trokendi XR. I believe the generic is topirimate. I take a very small dose only at night and it helps so much with the tremors. I don't have any side effects nor swelling, just relief so my brain stops getting those surges at night.
Praying for you! Thank you again for your posts and information. Praying for everyone living with MS and these bizarre, challenging times. And praying for all the angels helping!!!There is always a rainbow!
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