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Why You Don't Go Off of ACs Cold Turkey


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Guest Llamanator

I might as well post what happened when I withdrew from...

A whole 600mg/day of Neurontin. Cold turkey.

I had a partial seizure, folks. After watching a movie (The Island, since people seem to ask).

S.E.I.Z.U.R.E.

From withdrawing from a subtheraputic dose. As a non-epileptic.

So, YES, going off that "low" dose of your AC can cause problems. I'm grateful it was just a partial (or series thereof). It was caused by a faulty notification system within the pharmacy I get my scripts at, unfortunately. It took two days of withdrawal to cause it.

Not to mention the trips to the bathroom evey thirty minutes to lose my insides before the seizure.

These are powerful meds. Don't fuck with them.

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So some of that stuff on the PI sheet might be right after all?  Hmmm.

What was the seizure like?

How did you get treated? Did you go to ER?  Did the doc put you back on the Neurontin at same dose?

Anyone know whether a single event like this has any lasting effects or sensitivity?

A.M. pummeling with questions.

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Wow. I am impressed. I would never have guessed such a danger from going ct off so small a dose. And to think, I've toyed with the idea of skipping on my ac for kicks, just to test if I'm unproblematic.

DITTO all of AM's questions. Please do tell!

7

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Guest Llamanator

So some of that stuff on the PI sheet might be right after all?  Hmmm.

Most definitely. It's disconcerting how many don't believe it.

What was the seizure like?
I started getting very confused, and the world around me started to get an "unreal" quality to it. I got dizzy and couldn't keep my balance. I went to sit down. Shortly after, my head, neck, and shoulders did a "twitch buzz" for a second or two. After, I still had the before effects, got tunnel vision, and my speech was very slurred. I forgot how to talk multiple times. I drove back home (not alone, don't worry. a friend followed me home on the last stretch to make sure things were alright). I tried to kill a pedestrian and ourselves in the process, though. It took a couple of hours to recover, and I had a few more twitches and incidents of my eyes involuntarily rolling back in my head during.

The next morning, I was very fatigued, tired, rather confused, auseous, and my mood had changed from hopeless mild depression to cranky. The physical effects lasted most of the day.

How did you get treated? 

I didn't. Just went home so I could stay off my feet.

Did you go to ER?
Well, I was stupid to the point that I was on "home" autopilot and it didn't even occur to me. Didn't occur to my friends, either.

Did the doc put you back on the Neurontin at same dose?

Considering the pharmacy mixup happened when I got a new script for a dose increase, I went straight to 900mg. I'm a little out of it, but I feel much, much better.

Anyone know whether a single event like this has any lasting effects or sensitivity?
It can, depending on the individual. One of the *big* reasons why you don't mess with stuff.

Unfortunately, this is *not* my first seizure event on meds (off, I just don't get them). That put me at risk in the first place, along a history of weird or paradoxical reactions to baby doses of meds. It's likely that a bad reaction to another med started the fiasco. Never had any (other than a harmless febrile) before it.

It's one of those YMMV things that you don't want to mess with. It's my understanding that if you have one, if you're not careful, there is the possibility for more. That would be something better answered by some of the mods, in my opinion.

I don't know that much about it, and don't want to scare too many people.

A.M. pummeling with questions.

<{POST_SNAPBACK}>

It's fine. It's a good thing.

Take your damn meds,

Mimi

Edited by Almighty Llama Mimi
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Anyone know whether a single event like this has any lasting effects or sensitivity?

<{POST_SNAPBACK}>

Can we say K-I-N-D-L-I-N-G?

Guess what folks? Each seizure you have, regardless of cause, makes your neurons MORE LIKELY to follow that pattern--that is, to seize. That's why we keep telling you TAKE YOUR GODDAM MEDS, and if you are stopping an anticonvulsant, to do so in a reasonable manner.

Kassiane

<{POST_SNAPBACK}>

i really appreciate this information. i have wondered what could happen if i were to miss a dose because my pharmacy sucks ass.

im really sorry you had to live it, though.

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Guest Llamanator

As much as it sucked, Mimi got off fairly easy.  One day's worth of simple partials.

In Epilepsyland there is a lowerarchy of much worse flavors of seizures.

<{POST_SNAPBACK}>

I got off *really* easy. There are much worse things that could have happened. Like pants-pissing, rib-cracking tonic-clonic (or other generalized) seizures, or status epilepticus. This is somewhere in the crappy-but-I've-been-through-worse category. I can't imagine withdrawing from over double that.

i really appreciate this information. i have wondered what could happen if i were to miss a dose because my pharmacy sucks ass.

im really sorry you had to live it, though.

<{POST_SNAPBACK}>

That's why it's here. I'm a little shaken and kind of pissed (at myself and the pharmacy, which is usually awesome: 19 years and no mistakes).

Again, there are worse things. It's still rather scary, but usually preventable. I've had a few other seizure reactions to meds. Most of them could have been prevented by being more conservative on the doses and titrations. It was serotonin syndrome that started the seizure reactions for me.

I just wish pdocs in general realized how much of a problem it can be.

Wishing everyone well,

Mimi

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  • 3 weeks later...

I just got back from nearly two months away, and for about a week, starting a couple days before I left (sorta ran out a day or two before I picked up more) and the first few days I was there (7 hour time difference, 11 hour flight, left on wednesday, got there on a thursday, was up til past 4am, and slept nearly til dinner friday and saturday), I averaged about one 500mg pill of Keppra daily, instead of one twice a day...the night I got there, and when I was awake the next few days after, I felt stoned off my ass, but not in a good way.  Things were unpleasantly unreal (though strangely enough, after I had a vodka cooler the first night, everything felt more normal, until it wore off - as if there's some sort of continuum of chemical levels and wastedness with red on the edges and green in the middle), I remember everything that happened, but I was pretty stupid, couldn't tell you what/if I wanted to eat/drink/do, etc., plus the standard issue no drugs muscle twitches and weird feelings. 

I don't like feeling that fucked up, so I've been very careful since then to make sure to not forget to take them somewhat remotely close to on schedule, and once everything got stable again, they've been pretty good to me, no confirmed reports of me doing things I don't know I'm doing/saying or swearing other people didn't say things to me that they did when they were right in front of me, in the last month and a half I could count the number of twitching/strange feelings/other weird stuff incidents on the fingers of one hand, which, even though they're not big disturbances, is a rather significant difference from a few a day.  So for the moment, I'm happy, except with the price, and don't want to go off my Keppra cold turkey or otherwise!

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  • 4 weeks later...

I started getting very confused, and the world around me started to get an "unreal" quality to it. I got dizzy and couldn't keep my balance. I went to sit down. Shortly after, my head, neck, and shoulders did a "twitch buzz" for a second or two. After, I still had the before effects, got tunnel vision, and my speech was very slurred. I forgot how to talk multiple times. I drove back home (not alone, don't worry. a friend followed me home on the last stretch to make sure things were alright). I tried to kill a pedestrian and ourselves in the process, though. It took a couple of hours to recover, and I had a few more twitches and incidents of my eyes involuntarily rolling back in my head during.

That's a seizure?  Eeek.  That makes me think of the last incident I had when I missed some doses of Neurontin (I'm on 3200 mg a day) due to a mail order pharmacy incident (I should just pay extra to fill it locally). I was sitting at my desk, and suddenly, it was like my head was not attached to my body.  I don't think my speach slurred, but I couldn't feel my legs, and my eye sight got real fuzzy.  Walking to the train to go home, I couldn't feel the ground.

And then, of course, came the crankiness and stomach upset later. That's really scary.

Of course, now I"m trying to remember if it was a Neurontin missing moment, or a Zoloft missing moment.

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was sitting at my desk, and suddenly, it was like my head was not attached to my body.  I don't think my speach slurred, but I couldn't feel my legs, and my eye sight got real fuzzy.  Walking to the train to go home, I couldn't feel the ground.

That happens to me pretty regularly, but not when I miss a dose of Neurontin.  Come to think of it, it usually happens about 3-4 hours after I take a dose.  The slurred speech was real obvious to others at first, but that seems to have passed.  The dreamy feeling with the blurred vision happens all the freakin' time.  Former p-doc was pretty sure that those are panic attacks and GP agrees, so I haven't gotten too freaked out about the feeling itself.  I'll definitely be looking out for it next month, though, when new p-doc with new Dx for me starts messing around with my meds and dosages.  I'll coun't on my wife to know when it's bad enough to get me to the ER or whatever.

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  • 1 month later...

After decreasing my Tegretol by 100 mg daily for two months, and changing my mind, it took me two more months for my system to ramp back up to the effects of the prescribed dose. What are my priorities in this life?  I guess listening to some doctors' orders, having screened out other doctors'.

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  • 10 months later...

"Zoloft more than likely to get the Pax-ill flu-like stuff and stomach upset"

I dropped Zoloft because I hit a manic and I-didn't-need-any-meds-to-make-me-a-real-person-blah-blah-blah and I went crazy. I don't remember most of it, but it involved a lot of screaming then a lot of crying and back and forth and I tried to kill the bf at the time (too bad I didn't succeed) and all sorts of lovely stuff. I saw all sorts of weird shit, too.

That's when I learned that meds should be weaned on and off, and docs should let you know what you do. heh.

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  • 10 months later...
  • 10 months later...

This is what I'm experiencing now going off Topamax, and I'm tapering off 250mg (too quickly, I realized, so I went back up, which helped a little). The "unreal/stoned-in-a-bad-way" part especially sucks (worst brain mud ever). Seizures not as bad as Mimi described. Mine are eye clenching, muscle twitching and hand movements (they look like Parkinson's). And I'm stoopider than I suddenly became after 9mos of wonderfulness on Topa. Trouble typing, too, getting my brain and hands to communicate, though that's improving. Also have had migraine for three days, but that could be the crazy-ass weather patterns here at the moment.

I understand what Kassi said (each seizure kills some brain cells), but I don't think I've had enough or bad enough ones to make me this out of it. I just want my thinking back.

(If you saw my post elsewhere, I'm here to hear about a variety of experiences)

Thanks,

FH

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I don't think I've had enough or bad enough ones to make me this out of it

While you wait until they get "bad enough", you are giving yourself brain damage that makes you more likely to have more, and worse, seizures later. I'd like that to be scare tactics but it's a shitty consequence of the way brains work.

There is NO NEED for you to do this to yourself. Your doctor can help you work out (or should already be helping you work out!) a tapering schedule that will help you safely stop the topamax, and help you work out what you'll be replacing it with.

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  • 11 months later...

I'm down a third from my non-epileptic tegretol dose. And, yes, my typing does seem a li'l crappy sometimes.

I'll see the psychiatrist today. Wonder what he'll say about my losing my job- so much I don't know. How my manner is, what my job loss report says.

My jobs program wants me to start work soon in a very limited function- finally earning less than minimum wage. It will be strange to go back there as a consumer, not as a staff like the last time I worked there, even though I was a consumer before, also. I guess I just need to be myself.

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