Lamotrigine side-effects - get off it

[Mellismom]

Anyone with experience with getting off lamotrigine? Any complications? I'm going to do it slowly over six months and I take 300 a day, is that safe enough? It's because I have some side-effects but my doc wont believe me?

Like I feel a bit less happy, not so excited about things that I would normally be excited about. She says it can't possibly be a side-effect because Lamotrigine is also used for bipolar depression. Is it true it can't be possible? I thought it worked as a mood stabilizer in this context and should therefore also keep one a little "down" and not just counteract depressive feelings.

I'm more irritable, too, but she doesn't seem to take that too seriously either. She just says "okay" and the conversation continues like nothing.

I'm also more drowsy and distant (can feel that I'm "on" something) and there's no real reaction from my doc when I tell her about that.

Since I've been diagnosed with narcolepsy and now know that I'm only taking the medication for one small partial seizure a month I think it's a bit overkill, isn't it?

I've decided to get off the medication but my doc tried to talk me out of it. Her argument is that I have a bigger risk of getting a grand mal so it's better to stay on treatment. I said I'll be back if that ever happens.

I haven't had a grand mal ever. Would it have been best for me to have taken Lamotrigine as a precaution for about 15 years if I had known about E back then?

What is your experience with side-effects, do you think I'm right?

And what could be the consequences of stepping out of medication?

 

[Cint]

Different meds have different side-effects for everyone. I tried Lamictal years ago for my seizures. It didn't do a thing for my seizures, but it did elevate my mood. And yes, some of the same meds used for E are also used for mood disorders, and bi-polar disorders. As long as you go off the medication slowly, you should be ok. But don't be surprised if seizures do return once the med is out of your system. The consequences are the seizures could return worse than before.

 

[nicholas:)]

Firstly, I cannot recommend anything - I'm not a doctor so it is best to come to some arrangement with your doctor. Yes, Lamotrigine can be a mood stabilizer - so it may be responsible for your mood 'flattening' out. I came off of Lamotrigine after five days because visually things became too 'real', 'crystal clear', I became over alert to things, I felt people were physically too close - I wanted to push them away (claustrophobia) and I felt frightened and in a state of flight. I was taken off of Lamotrigine and put on Tegretol, also a mood stabilizer - it took five months of taking diazepam and eventually clonazepam to get me 'right', or as near normal as was possible for me.

From my understanding of mood stabilizers, they should prevent extreme highs or/and lows - on the right dose, for any given individual, one should still experience a range of moods without hitting top or bottom. That's not to say they prevent bad days or good days.

Lamotrigine suits some people and not others. Tegretol suits me but others cannot get along with it. We've all had experiences with doctors who prescribe one treatment and appear deaf to our concerns regarding it, and our pleas to try another. I have recently had this problem but after six months of persistence I have the result I desired. To my amazement, my doctor has listened to me. I was lucky to have a lead practitioner (mental health team) who told me that I was an adult and that if I was unhappy with my doctor's treatment I could write to her and express my concerns. I did write and nothing happened until months later I became unwell on the change of medication regime so after further consultation I got what I wanted. Yes, always write and make your concerns clear. Keep a diary of how you are feeling, how the medication seems to be affecting you, what you feel would make you feel better. They like it polite, formal and to the point. If you find you are getting nowhere, try another doctor - one you can talk to, one who will listen.

Just to finish, always be careful about coming off of a medication without your doctor's input. These are powerful drugs and need to be treated with respect. You may need to cut the dose by small amounts over several months. Then you may find that another drug may be required and introduced by increments over several months.

Anyway, good luck

 

[Mellismom]

Thank you both for your replies.

Cint: I still have some seizures just not as many as before Lamotrigine. In what way could they get worse and how often does it happen that they do? My doc didn't inform me on this. She only talked about higher risk of grand mal while stepping down. Nothing about the seizures could get worse afterwards. I know Lamotrigine works for bipolar. I was mostly wondering how it worked, to understand the doc's argument.

nicholas: Just what I was thinking about mood-stabilizer. And I'm thinking if the "mood-effect" is too strong on me that could be the reason I can't get to my "top of happy", right? What I don't get is why my doctor is so stubborn about this.

Another thing: When a medicine is tampering with your mood it could go both ways. Usually a medication that should, for instance suppress anxiety, does do that. But it can also have the opposite effect: It causes anxiety. (That's why I don't trust medicine that does anything to you mood)

I think I wrote it before but maybe I forgot. My plan is to get off it gradually over 6 months.

About changing doctor I don't even have a choice because she is getting a new job in a couple of months and I don't know the person who is going to follow up on me. I hope it's someone who listens. My current doctor has been helpful but all the way through tried to write my complaints about Lamotrigine off as something else.

 

[Nakamova]

Hi mellismom,

I'm on lamotrigine, and the side effects for me are minor and tolerable. I haven't noticed any issues with mood or drowsiness. Still, as Cint noted above, everyone reacts differently. And you definitely have the right to consider alternatives, including tapering off the med altogether.

A good neurologist would at least discuss other anti-seizure meds to try. It's worth getting that information in case you decide to stay on meds, or go back on them at some point. Perhaps you can eventually find a neurologist who will collaborate with you and be more responsive. I faced resistance from my neuro when I asked to decrease my dose. She insisted that I would have a seizure if I did so. I reduced my dose to 225mg, and I've remained seizure-free -- for over 6 years.

If you are determined to taper off of lamotrigine right now, the best approach to minimize the risk of withdrawal seizures and/or side effects is to go "low and slow." This means reducing in small increments, and staying at each level for at least a few weeks to give your brain time to adjust before stepping down to the next level. Depending on the form your pills are in, you may be able to razor them in half to get to a smaller increment. (That's what I did). It's a good idea to keep track of how you are feeling during the taper. If your seizures increase, you'll have a sense of how effective the med has been. Even though your neurologist may disapprove, it's a good idea to keep her in the loop if at all possible.

As for whether the Lamotrigine has been "overkill" for your partial seizures, there's no way to tell. And while untreated partial seizures can sometimes escalate to become grand mal seizures, there's no way to assess your particular risk, since each individual's prognosis is very different. You may have particular stresses or sensitivities that may raise or lower your seizure threshold.

Some folks have pursued alternative treatment approaches such as dietary changes or the use of cannabis paste. If you are interested in alternatives you can find threads discussing those approaches elsewhere on the site.

 

[AlohaBird]

Nak's advice is sound (as always )

That said, the bottom line is that it is your body and therefore your decision about how much if any medication to take.

Yes, it is always best to have a trusted partner in your neurologist when making big changes like this. However if your particular neuro is being difficult they need to be told firmly that they work for you, not the other way around. Invite them to be helpful or else get out of the way.

I feel lucky to have found a good neurologist recently but I went through plenty of the pill pushers who didn't listen to my concerns before I found him.


Just as an example of a successful medication taper. I recently got off of my Valproic Acid. I was taking 4 gelcaps nightly of 250mg each. The process was to cut back by one pill, 25%, then wait a whole month, then cut back one more, and so on. It took a while but it was worth it. No loss of seizure control.

There is definitely a temptation to chuck the pill bottles in a dumpster and run the other direction as fast as possible but that is not sensible.

Next I am going to work on my other med which come in tablets so I may do that a half pill at a time. One of these can help.

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[Carpentergirl]

Hi Mellismom! I hesitated to reply to your thread, because the more I read on, I think I'm realizing that the lamotragine is your main seizure control drug?? And that you are on a substantial amount....I can only weigh in on a few things here, because my lamotragine dosage was just an "add on" dosage...along with my Topamax...only 100 mg a day...BUT....I only took it for about 6 months, and I DID want to weigh in on the side effects, and let you know that I did have a few problems with it....

1. Depression, distant personality, sharp demeanor
2. sharp pain in my right side of my abdomen off and on during the day
3. gained about 15 pounds in about 4 months
4. poor skin complexion on my face
5. rapid heartbeat/ anxious feeling in chest daily/always feeling uneasy ( this was the most noticeable one and annoying one, and finally the last straw for me, and what made me call the doctor, and ask to change to another medicine)

The other thing, I didn't have to taper myself off this medicine or anything because it was an "add" on medicine...I talked to my neuro about the side effects and we stopped it immediately and started vimpat with my everyday routine of Topamax,so I didn't have to worry about tapering off such a major dosage...

I just wanted to share with you my story about the side effects etc....so you would know that yes, this drug is not for everyone, and even at a low dosage...just 100 mg a day, it can have quite an effect....I wish you all the best in finding something that works for you...

 

[Mellismom]

I don't think I want to experiment with alternative treatment. At least not for now. Cannabis sounds a bit extreme.
Carpentergirl: I'm glad I'm not the only one who feels (felt) depressed and distant while being on Lamotrigine. Makes me feel that I'm probably right, and that the doc is probably wrong.

I hesitated when I was about to start on medicine last year. 9-10 years ago I had a terrible encounter with a psychiatrist and got misdiagnosed. I ended up taking Abilify, only 5 mg, and I almost comitted suicide being on it. For no reason.

This time I'm not going to do "whatever it takes" to get rid of this small annoying problem. In the beginning I thought it was going to make a big difference for me. What I discovered was that most of my symptoms had nothing to do with epilepsy, appearently I have narcolepsy too, and therefore the pills only helps on my smallest symptom.

Alohabird: How small can you make the pills with that taper?

 

[seagull]

I cut mine down by 100mgs I take 200 in morning and gone from 200 at night to a hundred.
I don't know if this anything but I got excruciating pain in arm that went up to shoulder so I put hot water bottle and Zacan cream on it woke up with serve burns which needed hospital care and most of upper arm badly scared and I felt nothing X-ray show severe arthritis rupture muscle I feel sort pissed off not be bothered and sweaty

 

[AlohaBird]

I don't think I want to experiment with alternative treatment. At least not for now. Cannabis sounds a bit extreme.

Alohabird: How small can you make the pills with that taper?

To me what sounds extreme is putting up with potentially lethal side effects from pharmaceutical meds. Using an herb that has been used by humans as medicine since before Hippocrates doesn't strike me as extreme at all.

I can see that you would not want to do anything that is against the law. Neither do I. Not sure where you live but the laws about medical and even recreational MJ are changing rapidly. You might want to see where your area stands on it.

The Holden's Hope paste that I am using is completely legal in all 50 states and legal to ship. The plant they make it from has a THC level low enough that it is officially classified as "hemp" instead of cannabis.


With a pill splitter like that it depends on how big the pill is to begin with. It also helps if the pill comes with a line across it. You can easily do halves of just about any pill and quarters of larger ones.

 

[seagull]

You can buy hemp seeds in health shop put on cereal taste nice no hallucinations or high effect also used to fling into police or court grounds often found growing around parliament where people so pissed with canbis laws.
At the moment I taking morphine and stuff stop vomitting which is better something like cannabis which going take pain and sickness away and worried about addictive side which worse morphine.
Please god wish it was legal cannabis I much rather be having that...IT VERY CRUEL the way law is about it.

 

[AlohaBird]

Seagull, that's awful. Morphine is indeed addictive. Those laws make no sense. They would rather have you doing an opiate pain killer than cannabis. Crazy.

Did you ever get in touch with The Holden's Hope people in Colorado to see if they could ship to you?

 

[seagull]

Yes I did and they helped me find a place in London..failing that I will buy the seeds coz that is legal see what happens.

 

[seagull]

The crazy thing you only have to walk into any garden and be plants that alkaline ...Wordsworth wrote poem little celdine has exact properties of opium poppy.he also gave it up used cannabis and that pretty good poetry

 

[Mellismom]

It's just that I've read a lot of articles about cannabis being bad even when it's used as medicine. Not like you get high or anything but that it could have some unwanted side-effects. Off course I haven't tried it myself so what do I know? Anyways it's totally illegal where I live so it isn't really an option.

 

[AlohaBird]

That's too bad that where you live they haven't yet "seen the light". Perhaps a vacation to Colorado is in order........? I hear "medical tourism" is becoming a big thing there.

The thing about modern day cannabis is that it has been selectively bred by several generations of stoners to have higher and higher (no pun intended) levels of THC. So, anything that you would by "on the street" is probably going to be that variety.

It can actually be bad for epilepsy. I have read (but never experienced) that high THC weed smoked in a large volume could cause a seizure in some people. I don't know how true that is or how many people it applies to. (Personally I go into anaphylactic shock if I eat a Kiwi fruit. Everybody is different.)

The nice thing about dispensaries is that they have the different strains all presented in a cabinet in glass jars with labels telling you exactly how much THC and CBD are in each one. From what the dispensary workers told me, they are getting more and more requests for the more medicinal variety, with the high CBD level and minimal THC, so they do stock that kind.

If you did get something "on the street" you could not be sure what levels you were getting and so I would advise caution and not overdoing the quantity imbibed until you were comfortable with it.

 

[seagull]

It's just that I've read a lot of articles about cannabis being bad even when it's used as medicine. Not like you get high or anything but that it could have some unwanted side-effects. Off course I haven't tried it myself so what do I know? Anyways it's totally illegal where I live so it isn't really an option.

You could say that of anything for instance paracetamol and aspirin proberly one dangerous things you can buy over dose on that and that's it no getting back..Everything bad for you if taken out of context.Queen Victoria took it everyday lived ripe old age

 

[Mellismom]

I didn't mean "of the street" cannabis. I don't know much about it either way. I just remember the articles were about medicinal cannabis and how it was bad for you even as a medicine. But hey, I don't say they're right, I'm just explaining why I thought it was "a bit extreme". And true, everything causes different reactions. I have allergies as well.

And actually I think it shouldn't be that easy getting any kind of medicine that could kill you. One of my best friends throughout 10 years shouldn't have had that access a few months ago... So, unfortunately, I know all about over-the-counter medicine.

 

[SantanaJ83]

Regular EEG's but Neuro doctor insists that I have epilepsy

So in January 2017 I had the first seizure that I've every had in my life. I was rushed to the hospital and the doctor automatically put me on Dilantin. This was pretty much an assumption that I must be epileptic because I had a brain injury 10 and a half years ago. After the brain injury I was put on Dilantin for precautionary reasons and after about a year, i requested to be taken off because it made me feel like crap and after being weened off of the medication I was fine. Anyways, when I switched Neuro doctors he switched me to lamotrigine and I had a seizure in the process of switching and then a few months later I got sick of medication so I just abruptly stopped and I had another seizure about 5 days after stopping (I shoulda researched before abruptly stopping) (my fault). My dose is only 25 mg (one pill) twice a day. When reading about other people and their bout with epilepsy, they were taking doses of 200, 300, 400 mg or more. I talked to my Neuro doc about applying for cbd oil but he pretty much dismissed that immediately, saying "oh that must be your Facebook opinion" (i haven't had Facebook for 3 years). Just some info for all of you out there, Big Pharma pays doctors to push pills. My current Neuro doc made an extra $10,350 last year simply by pushing pills. Regarding side effects of cbd oil, there are maybe 5 total, none of them being life threatening. Whereas with all of the opiates there is a laundry list of possible side effects and the possibility of it killing you. I wish the best to all of you and I hope that you all get proper treatment.

 

[Mellismom]

SantanaJ83
I know, doctors are just giving pills in any possible situation.
I got off Lamotrigine - slowly - about 1,5 years ago. I felt much better afterwards and I haven't had more seizures than before I got off it. Either it really isn't epilepsy or it is not the medication for me. My sleep doc believes it could all be my narcolepsy instead.

Anyways, I'm not gonna be on some medication that makes me feel like crap because of something I may or may not have and something that might could happen but never has before just to "be safe".