Re: Anyone ever been on Trileptal?

[Guest guest]

Zola wrote:

>I went to the pain clinic yesterday and was prescribed Trileptal to start

>with, although it's an anti-seizure drug, it can apparently be very helpful

>with what's referred to as neuropathic pain, pain that originates in the

>nerves themselves....

>...I thought I would ask if anyone here has been on it and if there was

>any weird side effects I should watch for.

Don't know anything about Trileptal. When I was given Neurontin (also

an anti-seizure med) for neuropathic pain (glossopharyngeal

neuralgia), all it did was make me sleepy -- and stop the pain! I

took it for only a few days, though, so it's possible I wasn't on it

long enough for " side-effects " (other than sleepiness) to show up.

Jane

[Guest guest]

Kassi wrote:

>Hehe. Did I have weird side effects...

>

>This is FAR from typical, but it made me so

>uncoordinated I could hardly stand up and

>walk...stairs were pretty much out of the question. Im

>a gymnast in my real life, so that was a bad thing.

>And I became the villiage idiot, couldnt even write a

>complete sentence. This was all made worse by the fact

>that I was sleeping about 16 hours a day, and wanted

>to sleep the other 8.

That's how I reacted to...oh, dear, can't remember the name. Begins

with D, I think. Back in 1975, I was put on an anti-seizure med after

a head injury. I fell down a lot, had double-vision, and generally

was non-functional mentally.

Jane

[Guest guest]

> Don't know anything about Trileptal. When I was given Neurontin

> (also an anti-seizure med) for neuropathic pain (glossopharyngeal

> neuralgia), all it did was make me sleepy -- and stop the pain! I

> took it for only a few days, though, so it's possible I wasn't on it

> long enough for " side-effects " (other than sleepiness) to show up.

I haven't been on Trileptal, but I know with Neurontin it made me

*very* much as if I was just shut down for quite awhile, and did that

every time I increased the dose, but if I stuck it out it just got to

where it is now, where it relieves neuropathic pain but doesn't really

wipe me out or make me unable to think. But those first several weeks

were very zombieish.

These drugs *are* overprescribed for *non*-neuropathic pain, though,

and that's something to watch out for. Neuropathic pain (which is a

kind that is usually *untreatable* by opiates or other traditional

painkillers) is the only kind of pain this kind of drug would treat.

In general I've found I'll know whether something's working or not

after awhile. I've been put on a lot of drugs involuntarily in the

past, or coerced into taking them when they weren't doing any good.

That felt *very* different from enduring some amount of mental

shutdown for awhile in order to get an effect that was *useful* to me.

So if after awhile all you're getting is side-effects that outweigh

the benefits, you're probably on the wrong drug. (That really goes

for nearly anything.) I know with Neurontin I had to wait probably a

couple months before the brainfog went away, but I don't know how that

is for most others.

[Guest guest]

> That's how I reacted to...oh, dear, can't remember the name. Begins

> with D, I think. Back in 1975, I was put on an anti-seizure med

> after a head injury. I fell down a lot, had double-vision, and

> generally was non-functional mentally.

Depakote, or Dilantin?

(Both of those did that sort of thing to me. In fact I think it was

Depakote that made me downright delirious, which led to a diagnosis of

psychotic behavior or whatever and led to the neuroleptics and stuff.

And when they tried combination of Depakote and Neurontin, I don't

remember much except that people said my eyes pointed two different

ways.)

[Guest guest]

At 04:56 AM 11/3/2004, alfamanda intoned:

>I haven't been on Trileptal, but I know with Neurontin it made me

>*very* much as if I was just shut down for quite awhile, and did that

>every time I increased the dose, but if I stuck it out it just got to

>where it is now, where it relieves neuropathic pain but doesn't really

>wipe me out or make me unable to think. But those first several weeks

>were very zombieish.

How long did it take to do some good? I've been without pain treatment for

almost three weeks now, just started the Trileptal on Monday. My doctor,

who had been treating me with a fairly low dose of opiods, retired, and the

guy who took over his practice didn't want to handle what he felt was a

" pain management " case. (It's the loose joints thing, which actually has a

name--Type III Ehlers Danlos)

My biggest gripe is that the treatment I was on worked, I wasn't on a lot

of it (three pills a day) , and I was perfectly willing to try other

treatments, I just wanted to stay on what I was on since it was WORKING as

we tried other things. Due to the current " war on drugs " climate, instead,

I was forcibly withdrawn from something I had been on for 6-8 years, and

now get to jump through hoops to prove all the other nice drugs, nearly all

of which I had already tried, are ineffective. I'm also going to have to

have some freak-out reactions to some of these drugs just to convince the

new doctors that I'm not hysterical nor am I exaggerating. Maybe I should

ask for a couple of the ones that I have tried and I know cause a

particularly peculiar effect just to prove the point...

Of course, in the meantime, I can't even take care of things around my

house, which before was something I could do even on my absolute worst day.

>In general I've found I'll know whether something's working or not

>after awhile. I've been put on a lot of drugs involuntarily in the

>past, or coerced into taking them when they weren't doing any good.

>That felt *very* different from enduring some amount of mental

>shutdown for awhile in order to get an effect that was *useful* to me.

> So if after awhile all you're getting is side-effects that outweigh

>the benefits, you're probably on the wrong drug. (That really goes

>for nearly anything.) I know with Neurontin I had to wait probably a

>couple months before the brainfog went away, but I don't know how that

>is for most others.

Well, it looks like I'm going paradoxical. The first dose made me sleepy

and dopey. I took the second last night and ended up wide awake for another

6 hours, with no pain relief whatsoever, I might add.

What causes this to happen to us? You know, I swear, sometimes I think my

immune system goes active against a certain drug and cleans it out, because

it will have no effect once my body decides what it thinks. This actually

happened with Celebrex--it worked beautifully for a while, then it just

*stopped* and no increase of dose made it work again.

I'll stay on the Trileptal for the simple reason that the only way the

clinic is going to believe it is to see it. I'm also going to see the pain

psychologist on my next visit. This part is going to be entertaining as

hell, as they have you try biofeedback and I used to play with that all the

time, to the point that I can slow down my pulse, change the temperature of

my extremities and lower my blood pressure if it's ticking up.

They don't believe that either, of course, but they will. I don't think

they've had much dealings with autistic hyperconcentration--but when they

see it, maybe it will help them to understand how it is that I know when my

blood pressure is up, which is another thing they didn't believe (it's a

side effect from one of the NSAIDs and I can feel it when it happens).

This is why I hate, hate HATE having to change doctors. You have to train

the new one because they have no idea what you are up against, and they

assume you don't know what the hell you are talking about until they see

it. (Like the time that an inhaler that was supposed to open my lungs

closed them instead--my allergist NEVER tried a new medication on me again,

and three years after the incident, could remember the name of the drug off

the top of his head because it had scared him so badly!)

I'm just so annoyed. I was supposed to start a new job that may have

ultimately got me off of disability and it's right out the window because

I'm not getting treated. I can't rely on my kids to keep up with things,

they are kids, and the house is turning into a pigsty before my eyes. I

don't feel up to doing anything, and I'm not taking any pleasure in things

I would normally enjoy because the pain is always there to ruin it.

Nothing is going to give me this time back. And that makes me very angry

indeed.

Z

" What are we going to do tonight, Brain? "

" The same thing we do every night, Pinky. We're going to try to take over

the world!! " ---Pinky and the Brain

Visit me at <www.zolaweb.com>!

ICQ#2048151

[Guest guest]

I wrote:

> > That's how I reacted to...oh, dear, can't remember the name. Begins

> > with D, I think. Back in 1975, I was put on an anti-seizure med

> > after a head injury. I fell down a lot, had double-vision, and

> > generally was non-functional mentally.

and responded:

>Depakote, or Dilantin?

It was Dilantin. Thank you.

Jane

[Guest guest]

> How long did it take to do some good? I've been without pain

> treatment for almost three weeks now, just started the Trileptal on

> Monday. My doctor, who had been treating me with a fairly low dose

> of opiods, retired, and the guy who took over his practice didn't

> want to handle what he felt was a " pain management " case. (It's the

> loose joints thing, which actually has a name--Type III Ehlers

> Danlos)

> My biggest gripe is that the treatment I was on worked, I wasn't on

> a lot of it (three pills a day) , and I was perfectly willing to try

> other treatments, I just wanted to stay on what I was on since it

> was WORKING as we tried other things. Due to the current " war on

> drugs " climate, instead, I was forcibly withdrawn from something I

> had been on for 6-8 years, and now get to jump through hoops to

> prove all the other nice drugs, nearly all of which I had already

> tried, are ineffective.

It didn't take *too* long to figure out that it was effective for

pain. Much shorter period of time than it took to be able to think

straight again. But what worries me here is that if you're on opioids

for pain, and those are *working just fine*, then anti-convulsants

will most likely *NOT* work.

They treat *different types of pain*. Totally different. I took

opiates for pain after surgery, and they didn't work on my neuropathic

pain any more than Neurontin worked on surgery-related pain. Somehow

it would probably be best if you acquired a doctor who understood the

meaning of real pain management and didn't acquiesce to this " well it

's opiates so it's bad so I'd better prescribe something that doesn't

even *work on the same kind of pain* because it's more politically

correct to have people on anticonvulsants " garbage.

I know people with *both* kinds of pain who take *both* Neurontin and

opiates, but in that case it's because they *really do have

neuropathic pain on top of the other kind*. If they took just

Neurontin (or other anticonvulsants) it wouldn't work.

Different types of pain. Anticonvulsants and opiates are *NOT*

interchangeable, and I'm pissed off at your doctor just thinking about

this.

[Guest guest]

At 09:11 PM 11/3/2004, alfamanda intoned:

>It didn't take *too* long to figure out that it was effective for

>pain. Much shorter period of time than it took to be able to think

>straight again. But what worries me here is that if you're on opioids

>for pain, and those are *working just fine*, then anti-convulsants

>will most likely *NOT* work.

>

>They treat *different types of pain*. Totally different. I took

>opiates for pain after surgery, and they didn't work on my neuropathic

>pain any more than Neurontin worked on surgery-related pain. Somehow

>it would probably be best if you acquired a doctor who understood the

>meaning of real pain management and didn't acquiesce to this " well it

>'s opiates so it's bad so I'd better prescribe something that doesn't

>even *work on the same kind of pain* because it's more politically

>correct to have people on anticonvulsants " garbage.

Well, here's the thing, seriously. They see a middle-aged woman coming in

and complaining of serious pain. She looks normal, maybe a little

overweight. They don't yet have the records (they should soon, it's just a

matter of transferring them). She says she was on opiods and does provide a

pharmacy record, but her main diagnosis is fibromyalgia from way back in

the day before her now-retired rheumatologist realized she had Ehlers

Danlos. She warns them that she is prone to strange reactions to medication.

They HAVE to check it out. There is truly no choice. They can't afford to

lose their status as a pain clinic for one person who might just be some

kind of a junkie.

Fortunately, they are thorough. I am arranging to get my Aspie diagnosis to

their pain psychologist. The doctor who diagnosed me had a great deal of

respect for me and what I had accomplished despite tough odds, and it

showed in the letter he'd sent to the rehab office.

>I know people with *both* kinds of pain who take *both* Neurontin and

>opiates, but in that case it's because they *really do have

>neuropathic pain on top of the other kind*. If they took just

>Neurontin (or other anticonvulsants) it wouldn't work.

>

>Different types of pain. Anticonvulsants and opiates are *NOT*

>interchangeable, and I'm pissed off at your doctor just thinking about

>this.

The doctor I saw went as far as to say that once everything was checked

out, if the therapy had worked and I'd been stable on it, that they would

likely just put me right back on it.

As I said, they are over a barrel too. Since they prescribe so many opiods,

they have to watch it, they really do. Our lovely DEA is prosecuting

doctors who aggressively treat pain, even when experts agree that the

treatment is completely appropriate.

They will get to know me, they really will. They will see why my former

doctor trusted me, and the few times I needed an increase in dose (I think

three times over the whole course of treatment), I went to him promptly and

we discussed it. Twice, the dose went up due to surgery and increased

tolerance, which is to be expected.

It may turn out that they treat me MORE aggressively. This would be

welcome--I had entirely too many bad days when I couldn't do my physical

therapy due to the pain. If I can get more active, I'll lose even more

weight and that will help the pressure on my joints immensely.

The thing that has me so mad is just that I have to go through this. It

wasn't like I expected to be prescribed the opiods indefinitely, but I

don't believe that it was unreasonable of me to want to continue the

effective therapy while we tried other things.

I just took my third dose of the Trileptal about an hour ago. As you can

see, I am far from out of it--looks like it's going to make me HYPER! LOL!

They will be able to see this when I go in at the end of the month, it will

be obvious, and they will begin to believe and not think I am

overdramatizing, as some doctors have until I have done cute things like

stop breathing on them. (No, really. He had me on the breathing meter and I

went from the high 90s of possible lung capacity to like 15% in about ten

seconds and it scared him SILLY. He never tried anything new on me again)

I'm just so miserable that I want to scream. I try to do some of the dishes

and I end up in tears of pain. I had a BIG day today, I got a load of

laundry done. W00t. This is how I want my life to be, that I sit in a chair

or lie on the couch all day except to try to do a chore. Right?

I hope we get this all straightened out soon. I'm starting to drive MYSELF

nuts. Grrrrr.

Z

INTP

Generation X

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