Lamotrigine - Long term effects

[Anna01]

Hello All,

I am looking for any information on the long term effects of lamotrigine on brain chemistry. I have searched all over the net and can't find anything beyond pretty basic info on possible side effects. I have been on lamotrigine for 15 years, since the age of 15.

I have small muscle twitches quite often and some memory loss. Childhood memories are very foggy. I also get a very noticeable spaced-out/disconnected feeling when I don't take my dose on time. I wonder what might cause this? Can my brain chemistry have been permanently altered to need this drug to be normally operational because I have been on it for so long, from a young age? Doctors have stated that it shouldn't have any psychological effects from missing a dose etc., but that doesn't seem to be the case.

I am having a hard time finding any detailed literature about possible long-term effects/changes in brain chemistry etc. I realize that it hasn't been studied much and is relatively new, but any tips on where to look would be greatly appreciated.

I would also love to hear from anyone else who has been on this drug since childhood and your experiences.

Thanks!

 

[Eibhlin]

I've replied to you on your other thread, but i've been reading a book on detoxing from medication, smoking, alcohol, sugar ... Anyways, the neurotransmitters can repair themselves when you are off the drug (basically, we're addicted whether we like it or not! ... i.e. our neurotransmitters have got used to it) with optimum nutrition. I had been worried also about the long term effects, but I found this book quite reassuring.

 

[epileric]

Anyways, the neurotransmitters can repair themselves

That doesn't make sense to me since neurotransmitters are chemical substances. How does a chemical need repairing or repair itself?

Secondly, from what I understand, AED's function by regulating the release of neurotransmitters, not by altering the chemicals (neurotransmitters) themselves.

 

[Eibhlin]

Correction - It's about rebalancing neurotransmitters and the brain repairing itself.

the book isn't about epilepsy medication, it's about medication and other substances in general. I'm saying I find it reassuring. I have to be positive.

that's the last time i'm ever giving any info to anyone, ok i got mixed up - yikes!!

 

[epileric]

Sorry, no need to be scared to give information just because I didn't understand.

All I needed was a little clarification.

 

[Anna01]

It's about rebalancing neurotransmitters and the brain repairing itself.

Our brains can certainly do an amazing job of adjusting to different states!

 

[Eibhlin]

Thanks epileric - I'm not going to give info when it's past my bed time so! I always mix everything completely up when i'm tired! That was a v public example! lol!

Anna01, yes it is amazing! The book explains about the different chemicals, all of which I knew nothing about. I'm assuming that the same sort of logic applies to lamictal.

We have been TTC for a few years, and I recently read in a book about pregnancy-related diet that nutrition and supplements can overwrite (can't think of the correct word!) the effects of any medication. Again, I'm hoping the same applies to lamictal.

onder:

 

[Endless]

I hate to be the wet blanket, but if your question was about long term effects of lamictal in general, there's no way to know. sometimes it takes decades to learn what a drug can do to the body. like thalidamide (spelling?), dilantin, or even some NSAIDS (anti-inflammatories) that can hurt a person's heart. It's one of the multiple reasons I'm afraid of our AEDs and wish i could stop taking mine.

 

[Eibhlin]

It's so true Endless, there is no way of knowing. All we can do is mind ourselves as much as possible and send positive vibes into the future. op:

 

[Jfpinell]

I've replied to you on your other thread, but i've been reading a book on detoxing from medication, smoking, alcohol, sugar ... Anyways, the neurotransmitters can repair themselves when you are off the drug (basically, we're addicted whether we like it or not! ... i.e. our neurotransmitters have got used to it) with optimum nutrition. I had been worried also about the long term effects, but I found this book quite reassuring.

There's a lot more that our bodies can do than we give them credit for. Because of the way things have been portrayed for the last few generations, we so often today have this idea that "if it didn't come from a lab, it's no good". We need more people in this country to start going the route you are and to stop with this idea that science and King Soloman go hand in hand, so to say. The question I've asked several people so far is "Are we messing with Mother Nature, or is She messing with us? Which one of us knows better what we're doing?"
By the way, that isn't 1 of the books by Kevin Tredeau is it?

 

[Anna01]

Hello Endless, Yeah my question was about the long term effects in general. I know that there isn't anything confirmed at this point, but thought perhaps there might be some studies that suggest certain things that I hadn't been able to track down yet.
I guess I am also curious about the process of the brain adapting to new chemicals.
Having been on lamotrigine since the age of 15, when the brain is still not fully developed, I was wondering if that might have affected the development of my brain in such a way as to make me dependent on it. Eibhlin's answer about the brain's healing powers upon detox from the medication does make sense to me. Although I'm not coming off the medication anytime soon, so the question is more hypothetical.
I'd be interested in finding out what book you mentioned regarding detoxing is too Eibhlin...

 

[k2s4ever]

Catch 22 as if a medication keeps the seizures at a minimum, they're preventing THAT form of damage to the brain.
It's a toss-up. I actually just started generic Lamictal several weeks ago, so I'm on the starter dose with no side effects thus far, but also absolutely doing nothing to help my olfactory/gustatory auras which have increased. I'm hoping a dosage increase will help, but I know Lamictal has to be titrated up carefully. I see my neuro this week. As for muscle twitches-that's why I had to be taken off Topamax. Was on it for 4 months and had awful facial twitches, facial muscles I didn't even think of going all wacky, even ones almost on the inner eyelid making me feel like I had a tiny worm in there-too bizarre for words. And completely stopped once I was off of it. I was a little nervous that the tremble below my lower lip was going to continue as it took a little longer to go away-about 2 days once all the medication was out of my system. The others started markedly decreasing almost immediately, and were gone within 24 hours of the last dose.

 

[Blue Cat]

K2s4ever - good luck with the switch to generic Lamictal. Be aware of which manufacturer you are taking. I was initially transitioned to Torrent brand - an Indian mfgr. After 7 years sz free I had one 3 months later, and after they doubled my dose, another one after 1 1/2 years. I insisted on switch to Teva brand (mfg in US) and have had no trouble with that, but Kaiser is not going to have that available anymore so I told the doc I wouldn't agree to going back to Torrent and he's going to let me go back to brand Lamictal. I know it's on other threads, but the fillers can be different which can affect things. I know my plasma levels were ranging from 6 to 18 on the Torrent, whereas I'm keeping a steady 12-13 now. I hope you have a better experience. I know not everyone has this problem.

 

[Anna01]

k2s4ever, those facial twitches must have been very frustrating, I hope the switch to lamotrigine goes well! I have had a very good experience with it for the most part. Much less side effects than the Valproic Acid I was put on when first diagnosed. The twitches are just small muscle twitches mostly in my arms and legs, but hardly ever noticeable to anyone but me. I've never gotten auras before my seizures and don't know anything about lamotrigine's effectiveness preventing them - but I hope it works for you!

 

[Eibhlin]

Jfpinell, it's a different author - I pm'd you the title.

I do think that medicine definitely has it's uses. I know that Lamictal got me through college and alot of work-related stress ... I guess it helped me to get where I am. My epilepsy was fully under control for many years before I started to reduce - it was actually the neurologist who suggested it. It took me 2 yrs to take the plunge though as it is a risk!

I agree with what you say about how our bodies can do more than we give them credit for. You'd probably be interested in craniosacral therapy - I found it amazing, but there's something for everyone.

Sleep-deprivation, lack of food, stress, and flashing lights are seizure-triggers, but, for me, I'm in a better position now to ensure I have adequate sleep, eat regularly, and avoid conflicts as much as possible (or tune out if not possible!). It is difficult though to avoid the flashing lights. I now look like I'm playing peek-aboo alot!

 

[Jfpinell]

Jfpinell, it's a different author - I pm'd you the title.

I do think that medicine definitely has it's uses. I know that Lamictal got me through college and alot of work-related stress ... I guess it helped me to get where I am. My epilepsy was fully under control for many years before I started to reduce - it was actually the neurologist who suggested it. It took me 2 yrs to take the plunge though as it is a risk!

I agree with what you say about how our bodies can do more than we give them credit for. You'd probably be interested in craniosacral therapy - I found it amazing, but there's something for everyone.

I just started seeing someone with epilepsy (Don't ask me how, but she has a Class A CDL!) She said that a neurologists told her once that if "you go on medication you're never going to get off of it" I wonder if that's the reason I can't fully back off of this darn stuff without having another one. My herbalist does cranial, massage, Reki (sp?) and other stuff like that in addition to the herbs. I go through even a half hour of that....hold on...time elapsed 17 seconds. Chalk up another success for my lavender oil preventing another seizure!! (Darn, I LOVE this stuff -It's NEVER out of arm's reach! It stays in my pocket all day with me!) Where was I......even a half hour of that cranial stuff and boy can I tell the difference! I've said for years the way I see it, if GOD meant for man to be sustained on drugs, He would've made pills grown on trees.
Another question.....can loss of balance or lightheadedness or that "floating" feeling (like coming down in a fast elevator) be caused by Lamictal? I've been on it for about 9 years, so it should've resolved itself by now if it was something that happened until your body "gets used to it".

 

[Anna01]

Another question.....can loss of balance or lightheadedness or that "floating" feeling (like coming down in a fast elevator) be caused by Lamictal? I've been on it for about 9 years, so it should've resolved itself by now if it was something that happened until your body "gets used to it".

Not sure if it is the medicine, but I get vertigo at times. It tends to come and go for a month or so then disappear again...

 

[Jfpinell]

Not sure if it is the medicine, but I get vertigo at times. It tends to come and go for a month or so then disappear again...

Can I ask what yours is from?

 

[Eibhlin]

Yes, I know that floaty feeling. It feels like the ground is moving or something, and then just goes away again ... so maybe that's the same as vertigo. It could be the Lamictal, that's the issue - it's hard to know if it's the medicine or the epilepsy.

I've found that everytime I'm reducing (takes a few months to feel fine each time), I get that floaty feeling, but it's when I am going to sleep. It's weird, especially this time, but I had read that it gets harder with lower doses. It's like I'm zooming out and then back in again, very hard to describe. It feels almost out of body ... like I'm going up in an elevator really fast, then back down quickly (thanks for the elevator example!).

Lol re drugs and trees! I don't agree with your girlfriend's doc - maybe you need to reduce more slowly? I must get lavender oil - I always thought that was to be avoided for anyone with epilepsy. Yes, the cranio is great, I think the success of all these alternative medicines depends on the practitioner, glad you found a great one

 

[Jfpinell]

very hard to describe. It feels almost out of body ... like I'm going up in an elevator really fast, then back down quickly (thanks for the elevator example!).QUOTE]

I'm getting that right now sitting here again....GRRRR! I just thought....maybe I should take a job as an elevator operator (does that still exist today?) then I'd have an excuse! *giggle* This is why I don't trust being alone (it does throw my balance off trying to walk) and why I had to break down and get some at-home care. (Even though some people in the family are questioning my need for it!) GRRRR! I'd like to say exactly what I think of their attitude so often about me, but there are probably ladies and children out here! I mean, I don't like being in the tub alone in case, and some other issues without going into detail *AHEM* I need help with lately. What's SO annoying is the stuff I had been trying to do for years (I've had my heart set on our local volunteer F.D. ever since I could literally walk, I LOVED the police courses I was in....) now THIS! On top of it all, I still really get no support or encouragement from family -at least not much- I get the feeling they STILL after 40 years don't get it, or WANT to get it. (I hate to say, I really think it's the latter, because I don't believe for 1 second that everyone at home is THAT dense or stupid to not understand.)

[QUOUTE]Lol re drugs and trees! I don't agree with your girlfriend's doc - maybe you need to reduce more slowly? I must get lavender oil - I always thought that was to be avoided for anyone with epilepsy. Yes, the cranio is great, I think the success of all these alternative medicines depends on the practitioner, glad you found a great one

Well, I will say that when my pediatrician took me off the meds. I was on for 10 years (6 years Pheno. and 4 Dilantin) I was just fine, had no problems going off, and was just fine until my Jr. year. Then my neurologist shoved me back on Dilantin -without any second thought what so ever- and made NO attempt to get me off of it in about 15 years. I'm dead convinced that that was the big issue....my body by then was so used to being "babysat" by drugs, it forgot how to handle itself. Now I can back off JUST so far, and then that tiny little crumb more...I have another one. (I have actually used a knife and shaved a bit of dust off a tiny bit more every few weeks.....THAT'S how slow I go! But still, just that tiny little bit more and boom. I'm convinced that's how addicted (or call it what you will) my body is to that darn stuff. This is why I'm so against this modern medicine way of thinking that "if it didn't come from a lab, it's no good"...drugs and surgery don't get to the reason WHY something is wrong....you don't have seizures because of a lack of A.E. drugs, any more than you have a headache because you have an asprin deficiency or an upset tummy because you have a lack of "pink stuff" in you. As I've said a hundred times here, drugs cover up symptoms, they don't get to the root of WHY something is happening. Everytime you get sick -anything from a simple allergy to full blown AIDS or polio or anything in between, your body is out of balance somehow and your immune system is 1 of the FIRST things that gets compromised. That's why I made the comment of GOD and pills growing on trees. Funny yes, but SO true, as far as I'm concerned.