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Why You Don't Go Off of ACs Cold Turkey It Is Much Evilness Rate Topic: ***** 2 Votes

#1 Guest_Llamanator_*

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Posted 02 August 2005 - 05:55 AM

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.

#2 User is offline   AirMarshall 

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Posted 02 August 2005 - 10:53 AM

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.
** I am NOT a doctor or medical professional, just a lapsed biologist. Don't construe anything I say as medical advice. Consult your physician. **
dx: BPI, ADHD (inattentive), (anxiety), hypothyroid, severe sleep apnea, asthma, allergies, *New* Essential Tremor
Previous dx: BPII, depression
rx: 900mg Eskalith, Strattera 100mg, Cymbalta 60mg, 7.5mg Adderal, 25mg metoprolol prn, 112.5mcg Synthroid, Xanax XR 1mg prn
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#3 User is offline   seven 

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Posted 02 August 2005 - 11:29 AM

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

#4 Guest_Llamanator_*

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Posted 02 August 2005 - 01:18 PM

AirMarshall, on Aug 2 2005, 10:53 AM, said:

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.

Quote

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.


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How did you get treated? 


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


Quote

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.


Quote

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.


Quote

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.


Quote

A.M. pummeling with questions.


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


Take your damn meds,
Mimi

This post has been edited by Almighty Llama Mimi: 02 August 2005 - 01:20 PM


#5 User is offline   the_living_end 

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Posted 02 August 2005 - 03:35 PM

Kassiane, on Aug 2 2005, 01:54 PM, said:

AirMarshall, on Aug 2 2005, 10:53 AM, said:

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




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




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.

#6 Guest_Llamanator_*

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Posted 02 August 2005 - 04:30 PM

jerod23, on Aug 2 2005, 02:59 PM, said:

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.


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.


the_living_end, on Aug 2 2005, 03:35 PM, said:

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.


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

#7 User is offline   AirMarshall 

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Posted 02 August 2005 - 06:43 PM

**Would the Mods consider pinning this for posterity?? Since we don't have any wooden stakes for heads at the entrance.  :0

A.M.
** I am NOT a doctor or medical professional, just a lapsed biologist. Don't construe anything I say as medical advice. Consult your physician. **
dx: BPI, ADHD (inattentive), (anxiety), hypothyroid, severe sleep apnea, asthma, allergies, *New* Essential Tremor
Previous dx: BPII, depression
rx: 900mg Eskalith, Strattera 100mg, Cymbalta 60mg, 7.5mg Adderal, 25mg metoprolol prn, 112.5mcg Synthroid, Xanax XR 1mg prn
Keeping CrazyBoards Strong For Its Members.

#8 User is offline   crazynotstupid 

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Posted 02 August 2005 - 08:20 PM

AirMarshall, on Aug 2 2005, 05:43 PM, said:

**Would the Mods consider pinning this for posterity??   Since we don't have any wooden stakes for heads at the entrance.  :0

A.M.


Sounds like a good idear to me...

(Hmm, bloody heads at the entrance to every forum...well, at least the ones *I* mod anyways...  MWAHAHAHAHAHA!!!)
The woods are lovely, dark and deep.
But I have promises to keep,
And miles to go before I sleep
And miles to go before I sleep.
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#9 User is offline   MellowYellow 

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Posted 21 August 2005 - 03:57 PM

I got the worst delusional psychotic episode of my life after going off Tegretol cold turkey. It also happened to me after going off Depakote, once. I know a woman whom it happened to after going off lithium.

#10 User is offline   roxyhead 

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Posted 23 August 2005 - 09:58 PM

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!
Brain Cooties NOS - Keppra and Dexedrine make things better. Subthreshold bipolar? If so, doesn't bother me any. Basically a general subclinical spazz.

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#11 User is offline   platys 

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Posted 21 September 2005 - 12:36 PM

Quote

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.

#12 User is offline   Elwood 

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Posted 26 September 2005 - 02:33 PM

Quote

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.
No job. No car. No Life. No worries.

Dx: BP II
Rx: Paxil 40mg, Lamictal 150, Trazadone 150.

#13 User is offline   roxyhead 

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Posted 28 September 2005 - 10:43 PM

platys, on Sep 21 2005, 12:36 PM, said:

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.


I don't think missing Zoloft is nearly as likely to do that to you...unless you missed both, but you'd have to miss more than one dose of Zoloft more than likely to get the Pax-ill flu-like stuff and stomach upset, so that might be Neurontin, too.  Missing Keppra can feel like that, so it's a good guess missing Neurontin can, too.  When taking your meds regularly *doesn't* make you feel shitty, but missing them does, it makes it much easier to stay on them...  (former goddess of med-non-compliance here...why yes, 2 days is a perfectly adequate trial period for Effexor!  And one day's just fine for Risperdal, too!  <snort>)
Brain Cooties NOS - Keppra and Dexedrine make things better. Subthreshold bipolar? If so, doesn't bother me any. Basically a general subclinical spazz.

Most meds ever on at once: 9 + vitamins/supplements
Currently: 2 to 5, if I remember my puffer and need my PRNs
Average: 4
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#14 User is offline   susanlynn 

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Posted 06 November 2005 - 12:44 PM

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'.

#15 User is offline   charlie_ihsan 

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Posted 23 September 2006 - 12:40 AM

"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.
Been out of the system for a while, not sure what I got now!!
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#16 User is offline   Her Tommy 

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Posted 25 September 2006 - 09:37 AM

Just going down on effexor in too big a step (75 mg.) was enough to give me a fairly mild, but continually painfully headached for a full week.
At lower changes it didn't happen.

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#17 User is offline   wakko926 

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Posted 03 August 2007 - 03:46 PM

wakko wonders if that isn't maybe what caused her seizure last month at work?
Two can keep a secret if one of them is dead

#18 User is offline   firehorsie 

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Posted 21 June 2008 - 07:17 PM

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
Dx: BPII "subterranean" (no happy hypo), PTSD, social anxiety, GAD, PD w/o agoraphobia, chronic migraine, ADHD ///// New sx: autonomic twitching & finger movements, absence seizures, IQ from 140 to ~50 (half-joking), inability to type/communicate in writing (120wpm to <30 and inability to edit ...occupation: writer) ///// Current meds (ultra-ultra rapid metabolizer, fastest pdoc has ever seen): Cymbalta 120mg, Lamictal 450mg, Adderall XR 30 x3 (4 hour intervals); tapering Topamax from 250mg; prn: clonazepam, Axert, codeine 30mg [b]

#19 User is offline   resonance 

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Posted 21 June 2008 - 08:10 PM

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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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#20 User is offline   susanlynn 

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Posted 05 June 2009 - 02:09 PM

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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