Getting Off Lamictal/Lamotrigine

Recently a dear friend of mine went on Lamictal and her doctor told her getting off Lamictal would be easy because she was on a low dose.

I got worried because a number of my clients and colleagues have experienced hell (including seizures which they had never had before) getting off Lamictal (or trying to without success). It seems to be one of the harder drugs to withdraw from, so I wanted to make a post with the best info and resources I could find and ask you to post your own in the comments.

Here’s a quote from a forum on Lamictal side effects:

“When I went on it around two years ago, I thought it was just the right med for me. Now I’ve started to struggle. My short term memory has gotten so bad, it’s cost me two jobs. I’m always so dizzy, I feel as if I’ve had four or five beers. I’ve gone from the local Tabasco Kid to a diet so bland it would bore a baby. Go ahead and add in absentmindedness and clumsiness. Top it off with some plain old profound disorientation and major depression. In four or so months I’m a mess where I was a model.”

Here’s some info on breastfeeding while taking Lamictal:

“Lamotrigine (Lamictal) is being used with increasing frequency in childbearing women. We last reported on its use in of lamotrigine in breastfeeding women in 2005. At that time, several small studies indicated that lamotrigine was passed to infants through the breast milk in relatively high doses. Infant serum levels ranged from 23 to 50% of levels found in the mothers’ serum.

The largest study comes from Dr. Jeffrey Newport and colleagues and includes a total of 30 women taking lamotrigine and their nursing infants. The authors reported that milk/plasma ratios were highly variable, ranging from 5.7% to 147.1%. The mean milk/plasma ratio was 41.3%. This type of variability has been reported in studies of antidepressants and other medications in nursing infants, indicating that milk/plasma ratios may of limited utility in estimating the extent of exposure in the nursing infant.”

Here’s what Monica Cassani of Beyond Meds had to say when she was going through Lamictal withdrawal:

“I started the second phase of my Lamictal withdrawal three days ago. I was on 400 mg of it for many years. Several months ago I went off 200 mg of it. It was rough, but only in that I was greatly fatigued. Today, three days after cutting 25 mg from my still remaining 200 mg I am going ape-shit.”

Her post also has links to other forums and there are a lot of comments on her blog about Lamictal withdrawal, so I recommend checking it out.

Altostrata on the Surviving Antidepressants forum says this on her detailed page about getting off Lamictal (read her tips here):

“Like all psychoactive drugs, Lamotrigine can have withdrawal difficulties. Even doctors who are aware of withdrawal problems with other drugs can be surprised at how hard it is to go off Lamotrigine. As with other drugs, we recommend very gradual tapering at 10% per month, based on the current dosage (the amount of the decrease keeps getting smaller).”

Here’a another good page that addresses how doctors often downplay the severity of Lamictal withdrawal:

“My pdoc was trying to scare me into staying medicated.

He then added if I really wanted to come off of my meds, I could “just stop.”

WHAT?! My eyes flew open.

He stated he’d had patients who had stopped cold turkey without a problem. According to him, anticonvulsants don’t have severe withdrawal effects.

WHAT?! His advice just flies in the face of what most doctors recommend. In fact, quitting Lamictal immediately increases the risk of seizures, which is exactly what I’m afraid of.

Philip’s experience and Gianna’s experience along with the comments on each blog are proof that many people have experienced tremendous withdrawal effects from decreasing Lamictal’s dosage.”

Please share below if you have any resources, tips or experiences with getting off Lamictal. I never took it myself, but having a dear friend given this misinformation and a number of clients struggling with severe withdrawal or who feel they can’t even try getting off Lamictal due to the risk of seizures (when they never had epilepsy before) inspired me to gather some resources and start this conversation.

Secretly I’m hoping my dear friend will come off of it asap, but I didn’t want to belabor that point. We can’t always know what’s best for someone else or why they take psychiatric drugs that are dangerous. I can’t even know for sure whether someone is best off taking them or not, but I am passionate about people having accurate information to make an informed decision.

This information is also relevant to send to friends and family who might be pressuring their loved ones to take psychiatric drugs, with the best of intentions but a lack of information about the dangers.

I realize she has access to the same search engines I do, and yet…some people don’t necessarily know which keywords to look up to find the accurate information.

So this is a way for people (including my friend I care about) to have a bunch of information links in one place, so they can hopefully make the best decisions possible.

If you are looking for alternatives to psychiatric drugs here’s a post with 2 herbs and a supplement that I recommend. There’s a video as well as a blog on that post, where I explain the potential risks as well as many benefits of these alternatives.

If you want a longer list of things to try, check out this list of 111 Things to Try Before Taking Psychiatric Drugs. That one is my most popular blog. Who doesn’t want options? Stay tuned because there are a lot more than 111 too!

If you prefer video, here’s a video where I list the 111 things.

Recently I learned from a holistic health coach a bit more about amino acids as an alternative. They can help with withdrawal as well and are used at the Alternative To Meds Center in Sedona. I worked there when they were in San Francisco. They have an elaborate supplement protocol for withdrawal which includes a lot of amino acids.

The health coach I spoke with also informed me that psychiatric drugs actually have amino acids in them (as well as harmful chemicals)!

Best of luck in finding the options that are best for you, as there is not one thing that will resonate with or “work” for everyone.

There are many things that have helped many of us withdraw from psychiatric drugs, and many things that can help you improve your life without them, if that is your preference.

If you are getting off Lamictal or have experience getting off Lamictal or know others getting off Lamictal, please share your experiences in the comments so we can all learn from each other!

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14 thoughts on “Getting Off Lamictal/Lamotrigine

  1. Okay, you asked. Lamictal is NOT an antidepressant. It is a drug given for seizures, or sometimes for so-called bipolar. I was given it because they assumed I was “bipolar.” I was never “bipolar” if you even believe such a thing exists. If given for seizures it is sometimes given along with other seizure drugs.

    I was first given it around the turn of 1996 into 1997, this was because Tegretol did a number on me. The Tegretol level spiked so I was taken off of it right away.

    The main problem with Lamictal is that STARTING is scary. You cannot start fast, you must start slowly or you can get a very very bad FATAL rash.

    I do know people who literally had to get off Lamictal cold turkey. Because they had the rash. No problem whatsoever! I got off of it myself cold turkey, too. I didn’t notice anything. I went from 600 (toxic) to nothing and wow, I felt MUCH better, knowing I wasn’t gonna die, knowing that stopping the darned poison AMA I had saved my life.

    IF EVER you think you might have the rash you literally have to go to a doctor or even an ER if it’s a weekend. You have to go inpatient IF it’s positively the rash, because it can kill you. IF it is. And they do take you off cold turkey. They have to. Do you want to die or do you want to pussy-foot around with scare tactics from the online scare tactic communities?

    This is a dangerous drug! The only people who should be taking it, if anyone, are those who choose to take it and are fully informed people who are aware of the risks. I would not take it unless I had gran mal fall down seizures and nothing else would control the seizures. If you do, and you ever get that rash, you have to go to an ER and then get the rash treated so you won’t die.

    Sorry to be harsh but please no more scare tactics. The rash, which comes from the drug Lamictal and a few others, is much, much scarier.

    • Chaya says:

      Thanks Julie! Yes I know that Lamictal is not an antidepressant. For some reason it is still on the surviving antidepressants forum though.

      Thanks for sharing your experiences. I agree that if someone is having the emergency life-threatening rash they should definitely go off immediately. But if they aren’t, reducing gradually might be better in most cases. Even though you didn’t have the severe withdrawal a lot of people actually do.
      Thanks again!

    • Misty says:

      You shouldn’t down play bipolar for those of us suffering from it really pisses me off that you can say it isn’t real.. well for me it affects my whole life every second of everyday it also affects my family and anyone around me.. so if you don’t have it don’t down play it for those of us suffering from it.. fuck if I could get rid of it I would and if it wasn’t real then what the fuck am I suffering from.. my moods are out of control ups, downs, suicidal, manic then depressed.. don’t down play what you do not have.. you don’t know how hard it is to be bipolar so keep your ‘opinion’ about something you do not have to yourself thank you very much…. from someone who suffers greatly from Bipolar1 😉

  2. Adeli says:

    Hi Chaya,

    and what you think about

    all other medical specialties that are not Psychiatry?,
    do you think they are really helpful?

    Thank you,

    Adelina

  3. Adeli says:

    Hi Chaya,

    and what you think about

    all other medical specialties that are not Psychiatry?,
    do you think they are really helpful?

    Please, notification to me when you answer with a post!

    Thank you,

    Adelina

    • Chaya says:

      Great question Adelina. What kinds of medical specialties are you asking about? As for Western medical specialties, in the realm of allopathic medicine, I think some can be helpful in emergencies.

      They also have their use at times in extending life (not necessarily the quality of life, and not necessarily in the best way, though).

      Sometimes medications are helpful due to the placebo effect and/or collective belief, both of which are very powerful.

      Most medications come from herbs, amino acids or natural substances that are chemically synthesized.

      There certainly is still a time and a place for aggressive medical intervention, such as in emergencies.

      It also depends on the person, their beliefs and their intentions (as well as the doctor’s).

      I haven’t found most Western medical specialties to help me in the long term with any health issues (besides Western herbalism and naturopathy), but have found a few that have gotten me through emergencies or very acute situations such as having an inhaler for an asthma attack.

      Then there are “alternative” specialties such as herbalism, Chinese medicine, Ayurveda, and even naturopathy (which could be considered allopathy/Western medicine) which have helped me more on a consistent basis. Homeopathy can also be useful for certain things, for some people.

      Let me know if this answers your question! Thanks!

      • Adeli says:

        Well, for start I’ll tell you that for my experience with Generalistics doctors and specialists with who I have treat (neurologists, ear´s specialists, specialists in muscles and bones) always attributed the side effects that cause psychiatric medications in my body to psychosomatic of the own patient not to the drugs…, although there was physical evidence that drugs affected (because there was no such physical evidences before taking these medications,!) , they prefer to ascribe such ailments to the psychosomatic that admit that they are due to the drugs themselves, although in previous medical history of the patient (previous to taking psychiatric medications I want to mean) just have visit doctors a few few times in many years; for example, I will tell you that psiq drugs caused me much stiff muscles throughout the body and especially on the back, and there a herniated cervical and too much tension and pain in the head that the Generalistics, specialists in bones and neurologists have never recognized is due to psychiatric medications…

        Generalistics and specialists don´t want to make specialised proofs to confirm lesions in organs of the patient due to psychiatric drugs, both also refuse again and again no proof, simply saying to the patient that everything is psychosomatic… and after years asking to make you proofs to show the evidence if it comes out positive…¡ for them never was due to psychiatric medications!(it was my case with cervical herniate) The generalists and the specialists that I have treat do not trust what the patient and former psych patient tell and this also ends up losing confidence patient in them, it is finally mutual lose confidence…, already do not trust each other.

        I asked for your opinions about specialists because soon I should visit a cardiologist (feel long ago that my heart was very affected by psych medications, with pain almost all days, continuously, although the doctors always told me not to worry me at all… and just their indifference caused me more damage). I will go to a cardiologist soon but don’t think take medication if he or she prescribe it to me, my experience with the medication is needed more medication if I start with one and more and more damages in body…, because they always create side effects, “arrange” one thing and spoil others… and more since I took psychiatric drugs I think that I am more intolerant to drugs medications, probably by intoxicating by years rather than allergy… ( I consulted allergologists also about that!) For example, after psychiatric medications they gave me antihistamines for three weeks and I had more reaction even in my skin, after only two days taking them I had to withdraw them!.

        With regard to products of herbalist, despite the low energy after taking psychiatric medications I am pleased, for example, have never taken ginseng (not all persons working in herbalists know advise well because they do not know exactly how psychiatric drugs affect the nervous system…); It is also not advisable to follow friends recommendations even if herbalists have only natural products…, for example tryptophan, someone recommended me for my “depression” but gave me vomiting at the second day and recently I discovered that me was not maybe depressed but (although people perceive it as well) but the Serotonin Syndrome which produced me the psychiatric medications took by years as most of medicaments I took were Selective serotonin reuptake inhibitors (SSRIs), precisely, what I have is serotonin high and not low. Therefore I do not need to increase my serotonin levels (but clear, this I have realized over time and by experience because no doctors has told me that and they haven´t wanted to do analysis of neurotransmitters during taking psychiatric medications or after). By this I mean, if we do not know very well what psychiatric medications have produced in our body…, we must be careful with herbal medicines also!, I think…

        Now I am rooting for good and real food for recover and prevention, and maybe I prefer a surgery in a single organ body with a great age than take medications that are hurting me more organs on an adult but young age even…, but maybe with time I will change opinion, but for now this is what I think based on my experience just to now! Sorry for mistakes with my English, hope you understand my basics ideas in this text! Best wishes for you with your recovery,

        Adelina

        • Chaya says:

          Thanks Adelina! I totally get what you are saying here. The denial on the part of medical professionals has been very frustrating for so many of us. I think herbs and natural products can help (as well as good food of course), but you are right. We all react differently, and just because something is natural, doesn’t mean it can’t cause problems. That has happened to me as well, but I have also found some natural supplements and herbs that do help. It is also a constantly evolving process and can be frustrating for sure.
          I wish you the best!

      • Adeli says:

        The subject of the side effects of psychiatric medication affected me also in another sense: I loved and respected so much Medicine and Nursing as professions before I had taken this medication…(even I had thought study them one day because they were always my great passions in life!), but to discover how are medical patients unnecessarily medicated has made me lose faith not only in Psychiatry but even in Generalistic Medicine and other specialities that I knew a little due to the large number of side effects that I experienced and for that the many many visits I made with different doctors of different specialities. So the effects of the medication have affected me twice, affected to my health and to my professional vocation, and that for me is too much…

        • Chaya says:

          That makes a lot of sense Adelina. I had the thought awhile ago that psychiatry is a very very extreme version of the “isolating of parts” that goes on in mainstream medicine. Perhaps it is here to show us the damage of isolating our body parts or brain chemicals from the rest of our beings to such an extreme as to call every emotional “deviation” from conformity a “disorder” to be drugged.

          I think our bodies and emotions speak to us, and as much as possible, listening with curiosity and openness is the way we learn and get to know ourselves and find our path and meaning in life. Certainly there are emergencies where a quick intervention can be the way to go, but much of the time we can actually listen and tune in with what our bodies and feelings are saying, and how they might be guiding us.

  4. I’m sorry people have had such bad experiences with coming off lamyctol. I was put on it after having a seizure from welbutrin, and told it would stop any further seizures which I never have had because it was welbutrin related, but also help with mood. Which it has and has increased over the past few years. I’m not sure what does I’m on but it’s working. So hopefully won’t have to come off it any time soon. I’ve heard about the rash and so happy I did not have that!

  5. Rose Courts says:

    From Rose Courts: I was very fortunate in that I did not experience withdrawal from Lamictal, even though I was on-and-off with it for a few years (I was also trying to quit my meds long before I actually succeeded in that). I did stop for good when I went back on it for a few days and then got a rash. I didn’t wait around to see if it was actually Stevens-Johnson Syndrome; I quit completely and never went back on it.

    It was lucky that I did not experience seizures from withdrawal. At the same time that I quit Lamictal completely, I also quit Gabapentin cold-turkey, and I did experience minor seizures from that. I wish I had known then what I know now about self-care to mitigate withdrawal symptoms. I would advise anyone who is going off Lamictal to

    1) temporarily change to a ketogenic or at least Paleo type of diet. Sometimes children with Epilepsy are prescribed the ketogenic diet to stop their seizures, and it works! A diet high in healthy fats and low in sugar/grains helps repair the brain and nervous system fast.

    2) Take natural supplements or herbs that work on the GABA system (which Lamictal also does): GABA (amino acid blend), pure Cannabadiol (CBD), Valerian Root, Kava, or 300-500mg magnesium (citrate or malate). Inositol (sometimes called Vitamin B8) at a high dose is also excellent for anxiety, though it works more on serotonin than GABA.

  6. Hibari says:

    I am currently withdrawing from Lamictal after successfully withdrawing from Remeron 6 months ago. The highest dose I have been on with Lamictal was 200mg and now I am on 16.50mg. I’m sorry to say it has been a brutal withdrawal. I feel scared (crying and despair) and sick (nauseau, headaches, dizziness) most mornings, which does ease as the day goes on.

    I started withdrawing from this medication in July of 2015 and it is taking me this long. I do worry that I won’t get off and it is only faith that keeps me going because it has been exhausting. I probably won’t be off of it till the Spring (hopefully). I do acupuncture, take a limited amount of supplements and try not to panic about this process on a daily basis.

    The reasons I got on these meds in the first place (only 10 months of each till I started to taper) was due to grief and exhaustion leading to depression. I had never been on meds before and even had Clonazapm thrown in, which I took for a year before weaning off. I do get support from Surviving Antidepressants but not many people are on the Lamictal wd path. I also have read Gia K’s/Monica’s Beyond Med posts but again the Lamictal comments are not current or active.
    Thank you for letting me post.

    • Chaya says:

      Hi Hibari, I got your email and edited this for you so your email address is no longer posted. Did you try to edit it yourself and were unable to? Thanks so much for your comment. I think it will help others! And good luck, sending you best wishes in your withdrawal and recovery!!!

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