I've been told by a handful of Dr.'s that A.E.D.'s aren't addicting, unless they're a barbituent (spelling?) But just a week ago, someone who I'm just starting to date who also has epilepsy, said that there is a neurologist that told her years ago "If you go on medication (in this case he mentioned Dilantin, but also in general) you're never going to be able to get off of it because your body becomes dependant on it." Anyone else ever been told anything of the kind? I only had 2 or 3 blackouts as a kid (1 of which was caused by a misdirected dodgeball in class that hit me square in the head). In my Jr. year of H.S. I had a blackout in the middle of class after 7 years of only partials. My neurologist didn't waste any time shoving me back on Dilantin (of course not! -GRRRR!) and, unlike in early grade school, when my pediatrician took me off it after 2 years (I was on Phenobarbital before that) never made any attempt to get me off it in 15 years. I'm convinced that this is why whenever I've tried to back off of whatever it is that I'm on (currently Lamictal), I can go just so far and then that little extra pinch is too much and I end up having another one. I've been convinced for years (more so now given what I was told) that it's all because my body is so used to being "babysat" by these drugs, it's forgotten how to handle itself.
Medication addiction?
- Thread starter Jfpinell
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Even Keel
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Lots of people have gone off their meds. Many neuros say after being seizure free for at least 3 years, it may be appropriate to wean a patient off their meds. But it depends on the particular patient's situation.
The motto in here for going on or off drugs: Low and slow.
The body isn't addicted exactly, but it is acclimated towards it. It has to be withdrawn very slowly, in baby steps, or it could cause seizures. I'm particularly sensitive to that. Whatever my epi tells me to do (when going off a drug), I go twice as slow. Since Lamictal is my fifth AED, I've gone off quite a few, but was also ramping up on another med at the same time.
For info on going off meds, here's some reading:
http://www.australianprescriber.com/magazine/27/5/114/7/
The Treatment of Epilepsy in Remission (page 174+)
Withdrawal of Anticonvulsant Drugs in Patients Free of Seizures for Two Years
If you are interested in going off your meds, discuss it with your neuro. He'll figure out whether that may or may not be a good idea for you.
The motto in here for going on or off drugs: Low and slow.
The body isn't addicted exactly, but it is acclimated towards it. It has to be withdrawn very slowly, in baby steps, or it could cause seizures. I'm particularly sensitive to that. Whatever my epi tells me to do (when going off a drug), I go twice as slow. Since Lamictal is my fifth AED, I've gone off quite a few, but was also ramping up on another med at the same time.
For info on going off meds, here's some reading:
http://www.australianprescriber.com/magazine/27/5/114/7/
The Treatment of Epilepsy in Remission (page 174+)
Withdrawal of Anticonvulsant Drugs in Patients Free of Seizures for Two Years
If you are interested in going off your meds, discuss it with your neuro. He'll figure out whether that may or may not be a good idea for you.
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In March my Neurologist took me off both Keppra XR and Carbatrol ER for my VEEG. He just took me off Cold Turkey, he didnt wean me off. I went for 4 days with no medications, then was put back on Keppra XR but wasnt put back on the Carbatrol ER. The only difference Ive noticed is losing weight since not being put back on the Carbatrol ER. I didnt have any other symptoms that said my body was addicted to the medication. I was on Carbatrol ER for over 12 years.
msuder0583
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i know people are always posting links of studies and all this stuff which can be helpful, but its always nice to hear peoples' personal thoughts and opinions. my first anti-convulsant when i was diagnosed with epilepsy was dilantin, however i couldn't maintain a proper amount in my blood stream in order for it to remain effective. when i did the switch over to lamictal, i had to transition myself off the dilantin and add on the lamictal at the same time to prevent any kind of physical problems. and now im on lamictal, keppra and topamax. i don't really notice a physical addiction or withdrawl, however i do notice that if i run out or don't take it, i have huge panic attacks. right now i think its all mental. the only physical problems that would occur is a seizure if i don't take my meds. but if i ever do decide to go off any of the meds, i know that i will have to slowly wean myself off instead of abruptly stopping because it can cause complications
Billyboyboo
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I got addicted to Klonopin, and it's a Benzodiazepine.
I reached 5mg a day, and was told I could go to 20mg a day, but I could barely function at 5mg.
I had to start tapering it, it had bad withdrawal. I had a seizure in my mother's front lawn, coming off this stuff. At first I cold-turkied it, that was a no no.
Never cold-turkie a Benzo.
I was also cold-turkied off Tegretol, Neurontin, and a few others.
The most addictive med I was on had to be Klonopin, it took anxiety away as well.
Be careful coming off some of these meds. :twocents::twocents:
I reached 5mg a day, and was told I could go to 20mg a day, but I could barely function at 5mg.
I had to start tapering it, it had bad withdrawal. I had a seizure in my mother's front lawn, coming off this stuff. At first I cold-turkied it, that was a no no.
Never cold-turkie a Benzo.
I was also cold-turkied off Tegretol, Neurontin, and a few others.
The most addictive med I was on had to be Klonopin, it took anxiety away as well.
Be careful coming off some of these meds. :twocents::twocents:
msuder0583
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they say seizure meds can be used for anxiety and depression as well but they seem to make me more depressed and cause higher anxiety so i need to get anti-anxiety meds. now - those if i happen to use them more than what i should i may get addicted to
So what about the part concerning the Dr. who told the one I'm dating about "....never be able to get off of them"? I mean, I had no problem when my pediatrician took me off them because I was only on the stuff for a few years. But when I got stuck on them for 20 years straight. I'm really starting to think there may be more to that.
elizzza811
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I came off Klonopin pretty fast back in 2005, though I wouldn't recommend it. I think I was on maybe 2mg?...1 mg twice a day? Not exactly cold-turkey, but I weaned a 15-year benzo wayyy faster than I should've (maybe over a 2 week period?). Actually that's when this jaw-clenching began and I started having outright complex partials.
I came off the Klonopin fast though because doctors were treating me like a "doctor hopping" drug-addict, and the only reason I was doctor-hopping was because I had all these other crazy symptoms (gastrointestinal symptoms especially, and I suspect these are seizure-related now), and nobody was diagnosing me...they wrote 'psychosomatic tendencies' in my records.
I actually wonder now if the 'anxiety' they were treating was actually an underlying seizure disorder, because I've noticed my anxiety increases exponentially right before seizures? What's weird is that I often feel better after some of my seizures, at least temporarily, as if the seizure activity has corrected something? For instance, I have trouble sleeping, but nights I seizure, I actually feel like I sleep?
I came off the Klonopin fast though because doctors were treating me like a "doctor hopping" drug-addict, and the only reason I was doctor-hopping was because I had all these other crazy symptoms (gastrointestinal symptoms especially, and I suspect these are seizure-related now), and nobody was diagnosing me...they wrote 'psychosomatic tendencies' in my records.
I actually wonder now if the 'anxiety' they were treating was actually an underlying seizure disorder, because I've noticed my anxiety increases exponentially right before seizures? What's weird is that I often feel better after some of my seizures, at least temporarily, as if the seizure activity has corrected something? For instance, I have trouble sleeping, but nights I seizure, I actually feel like I sleep?
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Hi, Elizza,
Wow, the doctors are quick to pull out that psychological card when in reality, they just don't know what the answer is. So they blame the patient, say they are unbalanced. IMHO most docs unconsciously do it to cover their own incompetence. The good docs say, "I don't know what's going on, but lets cross this one more item off the checklist" and they send you to a shrink anyway. And they continue to persue other diagnoses or causes.
About seizures, tiredness, meds, etc. There's a saying. "Correlation doesn't mean causation." Just because two things happen together doesn't mean one thing causes another.
An example was what I thought was causing my headaches. Headaches and seizures always came together for me. I thought the seizures were causing the headaches. Not so. I was having seizures on a pretty regular basis back then, and also almost constant headaches. I've since found out they are completely independant, with one thing not causing the other, but possibly a third factor causing them both. There's still an outside chance my other neurological condition (IIH) is causing both the headaches AND the seizures. Maybe not, but maybe. We're trying to find out.
I sleep after a seizure, too. I don't think it's because something corrected in my brain, per se. I think it's because seizures wipe me out. I'm exhausted for a day or two, sometimes more if there's a series of seizures, one after another.
I'm with you on the anxiety. I feel creepy sometimes on and off for a whole day before I have a seizure. I also have another neurological disease, and when the spinal fluid pressure is going up in my skull I get a high level of anxiety. So if the fluid pressure in my brain (IIH) is causing seizures and anxiety, it's not the seizures causing my anxiety.... get the idea? It could be a totally different third unknown cause for you.
Do you keep a seizure journal? It's pretty important in helping to sort all this out.
Wow, the doctors are quick to pull out that psychological card when in reality, they just don't know what the answer is. So they blame the patient, say they are unbalanced. IMHO most docs unconsciously do it to cover their own incompetence. The good docs say, "I don't know what's going on, but lets cross this one more item off the checklist" and they send you to a shrink anyway. And they continue to persue other diagnoses or causes.
About seizures, tiredness, meds, etc. There's a saying. "Correlation doesn't mean causation." Just because two things happen together doesn't mean one thing causes another.
An example was what I thought was causing my headaches. Headaches and seizures always came together for me. I thought the seizures were causing the headaches. Not so. I was having seizures on a pretty regular basis back then, and also almost constant headaches. I've since found out they are completely independant, with one thing not causing the other, but possibly a third factor causing them both. There's still an outside chance my other neurological condition (IIH) is causing both the headaches AND the seizures. Maybe not, but maybe. We're trying to find out.
I sleep after a seizure, too. I don't think it's because something corrected in my brain, per se. I think it's because seizures wipe me out. I'm exhausted for a day or two, sometimes more if there's a series of seizures, one after another.
I'm with you on the anxiety. I feel creepy sometimes on and off for a whole day before I have a seizure. I also have another neurological disease, and when the spinal fluid pressure is going up in my skull I get a high level of anxiety. So if the fluid pressure in my brain (IIH) is causing seizures and anxiety, it's not the seizures causing my anxiety.... get the idea? It could be a totally different third unknown cause for you.
Do you keep a seizure journal? It's pretty important in helping to sort all this out.
Exactly what I just said a few minutes ago in "gotta' love those AED's" thread.....it's always the herb that interacts with the drug...not the other way around for some reason. Or to put it another way, Mother Nature is messing with us, not us with her. Hmmmmm....something wrong with that picture? Which one of us knows better what we're doing? Man lets his ego get in the way so often. *shakes head in disbelief* .....Sad. I mean, I was just as skeptical as the next guy when I first started getting into this natural stuff. All I ever heard were the snake oil stories from mainly the depression era. I grew up believing that we were given intuition to utilize whenever we needed it just as most believe today. But the more I get into this Eastern medicine, and the more it works, the more I'm starting to ask: Do we have the wisdom to know when to slow down, or perhaps even to back off when need be (or more accurately the willingness to put our pride aside and admit when we need to do so)? There was only 1 man who could walk on water..... Science is not better than nature. Interestingly enough, I even have an M.D. I know on a personal level intensely pondering much of what I tell her, and what she sees work on me.
