[MelodyL]

Hi all.

Really need your input here.

Alan just came home from the Neurologist and he had been given a prescription for generic Trileptal which he filled.

So he walks in the door and says "I will start taking Trileptal".

I immediately said "well, that's an anti-seizure drug and you know what happened when you went on Neurontin, and Lyrica, you got DEATHLY sick. He had gotten fevers, bad body aches (like a flu). And just to make sure it was the Neurontin, we waited a few days, he took it again, and the same thing happened.

And just to remind you all, when Alan took Celebrex, he was hospitalized with a BODY RASH, his face blew up and I read up and that's Steven Johnson's syndrome right? And he was told to never take Celebrex or any Sulfa drugs again as long as he lived.

So I just went online and read about Trileptal and found that in some cases it results in Steven Johnson Syndrome (some people have had to be hospitalized).

Now when the neurologist (I wasn't there by the way), when she prescribed this Trileptal for him, he told her about the Neurontin and Lyrica reactions (but he didn't tell her about Celebrex) because he doesn't know to tell her this.

She said "This is not like Neurontin or Lyrica, you can try this"

So I just want to know, SHOULD HE TRY THIS PILL.

The bottle says: "OXCARBAZEPINE 150"

I know there are risks with any drugs, but look what happened to him when he took the Celebrex and he had this big rash and his face blew up, and when he took Neurontin or Lyrica he got so sick.

I would appreciate any information.

I told him "you are not taking ANYTHING, until I run this by the people at Neurotalk"

Thanks much

Melody

[mrsD]

Hard to predict an allergic reaction.

So what is this supposed to do for him? Is it for pain?

[MelodyL]

Originally Posted by mrsD

Hard to predict an allergic reaction.

So what is this supposed to do for him? Is it for pain?

Yes, she prescribed it for neuropathy.

Melody

[daniella]

Hey Mel how are you?
Anyhow my pain doctor was going to try this for me and the pain if neurontin did not work which it is not but have not tried the trileptal.
I am not sure about side effects though. Is that a low does to start off with? If not maybe talking to the doctor about starting slower in case of similar happening. I can understand the fear about similar happening. I rarely here of people on this med for pain so it is interesting your husband was suggested it. My mom is on this med by her psychiatrist and finds it helpful. I know that is different but in the start all she had as side effects was she would feel groggy and could not drive for a few hours after taking it.
Sorry not more help. Hope you are doing well

[glenntaj]

--certainly has a different mode of action than Lyrica and Neurontin, much more in keeping with other drugs in the anti-epileptic class. For one thing, it is metabolized by the liver, like most drugs, not the kindneys, as are Lyrica and Neurontin--in fact, it was engineered from carbamazepine with some subtle chemical changes to make it easier to metabolize in the liver and keep the side effect profile down compared to carbamazepine, although the side effect profile is not unfamilar to those who use anti-seizure drugs (central nervous system downregulation leading to dizziness, drowsiness, etc.). Increased sun sensitivity has also been noted--again, not uncommon in that drug class.

Alan is a big guy, so the dose seems reasonable--all I can say is if he takes one, keep a close watch on him, and make him report what he's experiencing over the hours.

[nide44]

Originally Posted by glenntaj

........Alan is a big guy, so the dose seems reasonable--all I can say is if he takes one, keep a close watch on him, and make him report what he's experiencing over the hours.

I got the impression that he was an average size guy, maybe in the 180 lb class, or less. Dunno why, but that was my impression.
Mel, what is Alan's size?

[MelodyL]

Originally Posted by nide44

I got the impression that he was an average size guy, maybe in the 180 lb class, or less. Dunno why, but that was my impression.
Mel, what is Alan's size?

Alan hasn't weighed 185 in YEARS. if you want to see him I just videotaped him singing at the computer. He's about 237 now. He is about 5 foot 11 because he has shrunk a bit. Thank goodness he still has a sense of humor because he makes me laugh all the time.

http://www.youtube.com/watch?v=2LqikvJLgMI

Because of his foot ulcer, he does not exercise (I always tell him "you can do weights") but it falls on deaf ears. I cook healthy but he sneaks when I'm asleep.

I guess I'll go out and buy benadryl and sit next to him if he takes one of those pills tonight.

What the heck is this drug supposed to do for neuropathy anyway? Stop the burning.?


Thanks everyone.

Melody

[MelodyL]

Hi Daniella:

I'm doing fine except for my arthritis and scoliosis which flares up when the weather goes nuts. Yesterday I did not know it was going to rain and the pain between my shoulder blades hit me like a ton of bricks. I just moved very carefully. I don't take anything not because I'm a martyr but because I never know when it's going to strike and it does pass. I do very well it hot hot hot weather. I could walk forever in hot hot hot weather. When it's 97 outside I'm a new person.

I don't like cold. I found out I had scoliosis years ago when I would get this pain between the shoulder blades and I went to my doctor and I said "why do I get this pain every once in a while". He sent me for an upper back x-ray and I saw the x-ray on the screen and the technician said to me "you do know you have scoliosis, right?"

I said "I have what??" Then I looked at my x-ray and saw the curve.

I said "oh that's scoliosis".

Nothing can be done at my age so I just take care of myself, walk as much as I can and I live with it.

Best I can do.

Can't wait for summer. I shine in the summer.

Melody

[echoes long ago]

personally i wouldnt try the anti seizure drugs before first trying amitriptylene or wellbutrin, both of which helped with burning and throbbing pain for me. Anti seizure drugs have more serious side effects for me such as being totally out of it, forgetful, dizzy etc. to me, anti seizure drugs which can cause seizure themselves arent drugs to be taken litely, unless really necessary.

[MelodyL]

Originally Posted by echoes long ago

personally i wouldnt try the anti seizure drugs before first trying amitriptylene or wellbutrin, both of which helped with burning and throbbing pain for me. Anti seizure drugs have more serious side effects for me such as being totally out of it, forgetful, dizzy etc. to me, anti seizure drugs which can cause seizure themselves arent drugs to be taken litely, unless really necessary.

He tried amitriptylene about 9 years ago when he was suicidal from the neuropathy pain. I'll never forget what happened. The pain was gone. He was delighted. He said "oh my god, I finally found something". Then the itching began. He said "oh my god, this is worse than the pain", and Nothing is worse than that pain right?

So he never took amitriptylene again. He then went on the fentanyl patch but you can go just so high and then he had to be tritrated down, he went into detox, they threw him out of detox telling him he had no drugs in his sysem, he then told them. "Are you serious, I walked in here wearing a 25 Fentanyl patch", and they said "well, it didn't show up on your screening tests". Then he was told that there is a separate test to detect Fentanyl in the body. The lady who admitted him into detox (at the hospital), well when he told her "I'm wearing a fentanyl pain patch", she said "What is Fentanyl"

So after being in detox at the hospital overnight, they discharged him, and he spent the next 5 days in bed detoxing off of the 25 of the Fentanyl. He said "I'm never going through that again as long as I live"

So here we are many years later and this man has tried Elavil, Neurontin, Lyrica, Fentanyl, vicodin, Ultram, WHATEVER??? and everything has some side effect that he can't stomach. He has also tried Tens unit too!!! And he used to cut up the lidoderm patches and wrap little ones around each toe. Helped for a while but not for long. He no longer does this.

I asked him last night "Are you going to try this pill?" and he said "Not on your life"

So he'll continue to put on the Lidocain ointment on his toes and use the Bio-freeze on the feet and anything else that is not a pill.

Here's hoping that SOME DAY, someone invents an anti-burning med for people with severe neuropathic pain. He says it gets worse when the barometer changes. Hey, when the barometer changes I can't walk, my arthritis is so bad. But give me 97 degree weather and I can dance.

And I remembered to ask him "what about your results from the last MRI of your back, what did the neurologist say? "he said "I was hoping you wouldn't ask" I looked at him and said "what did she say?" and he said "Well, she said "Oh, your MRI is around here someplace, I haven't looked at it yet" I just looked at him. I should have gone with him. This also happened 3 months ago at his previous appointment.

Now I just found out that there is a big SPINE center 5 minutes from our house. I'm going to go look it up and phone them and see if they take our insurance.

Can't hurt.

Melody