9,000 views for my “Lamictal (lamotrigine) withdrawal from hell” post

Update 11/2011 — the post mentioned continues to get more hits than any other post (ongoing). It’s now at 56,000 hits. Lamictal is still a mostly unknown horribly difficult drug to withdraw from. This is mostly because people taking it often stay on it or switch to another “mood-stabilizer” or anti-seizure med, meaning that withdrawals are mitigated by another drug replacing it. If one comes off completely withdrawal syndrome is often the result. MDs too often don’t recognize it as a withdrawal syndrome among those labeled with a psychiatric disorder and will replace it quickly with another medication rather than let the person heal from the drug injury.  (reached 100,000 now)

In just one year this post alone has had 9,000 views. It is the most viewed post on my blog. It often gets 50 hits a day and has gotten over 200 comments—mostly people freaking out as they withdraw in some sort of reckless fashion.

It strongly suggests there is a serious problem with Lamictal withdrawal for many many people.

I’ve been told that it was the Lamictal withdrawal that has brought about my physical demise. Something about it messing with my glutamine and glutamate cycle. That in fucking with that cycle my Klonopin became extra toxic and yet, double edged sword that it is, withdrawing from Klonopin makes me very ill as well.

So I remain on 2 mg of the 3 mg of Klonopin  I started out with and that continues to plague me. I remind you I am off all the other 6 drugs I was on. After 4 years of withdrawal. I took 2 years to come off Lamictal, but according to the person who offered the above theory I came off the end of  the Lamictal way too fast. And indeed it was that delightful ortho doc who cold turkeyed me off 55 mg of Lamictal and 3 mg of Klonopin who did this to me all at once at the end after doing everything by the “book” for so long. (what book there is—I’m being somewhat facetious as we’re all in the dark here.)

I must do more research and hopefully learn if there is a way to help this glutamine/glutamate cycle right itself. I’m actively pursuing a neurologist now. I consulted with my neuropsych doc and he has someone in Winston-Salem in mind. I’m terrified of anyone with an MD behind their name at this point. I’ve been screwed so many times, but I want to try to learn what the problem is even if I don’t choose to pursue how they would want to treat me. Medicare should pay for this too which will be a welcome change since orthomolecular psychiatrists generally don’t accept insurance.

I wonder about supplementing with glutamine as I used to for a while. I actually found it very helpful, but that was before I completed the Lamictal withdrawal and I don’t know if the damage was already done when I was finding it helpful. One of the multiple ortho docs I saw took me off the glutamine—another ortho doc had put me on it—bounce, bounce, all around.

I think it might be worth trying baby doses of it and seeing if it helps again. It was something I actually liked a lot but the doc I worked with who took me off it demanded obediance as they all seem to even as they lead you to illness as she did.

Though that is more common among psych docs in my experience.  Psychiatrists of all stripes seem to really be into control. I’ve not found that to be true of other docs to the same degree. Maybe this neurologist I’ll see will respect me if I refuse to follow orders. If not I won’t work with them long…that is if their orders involve taking the drugs that have sickened me and that is what I fear.

**I’ve posted another 83,000 word document with hundreds of comments by Lamictal users coming off. 

About Monica Cassani

Author/Editor Beyond Meds: Everything Matters

38 Responses

  1. Gianna,
    It wouldn’t surprise me at all if you were still going through lamictal withdrawal…I only took it for about six weeks but my psychiatrist cold turkeyed me off 100 mg/day when I got a rash…I was sicker than a dog for six weeks after that. I can only imagine how much worse it would be if you were on a higher dose for a much longer period of time. Checking into glutamine supplementation sounds like a good idea to me. Hang in there!
    Love,
    Jazz

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  2. suki

    Psychiatrists of all stripes seem to really be into control.

    Very much so.

    I read once the rate of non-compliance of psychiatric patients with their medications is about the same as patients with epilepsy or diabetes. About 50%.

    What strikes me is that it would be unheard of for a physician to deny treatment or care to someone with these illnesses because they don’t take their prescribed medications as ordered. Such a physician would be sued into oblivion at some point.

    But it’s common practice to hold the withdrawal of treatment over a psych patient’s head if he or she refuses to toe the treatment line. I’ve walked away from a couple of those.

    While I’m here, is this blog strictly anti-psych? Another Furious Phil, or is there some substance here? Thanks for stepping out, G.

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  3. Amy

    Hey, I’m working with a doc right now on the glutamine thing, he suggested a book called “The Shwartzbein Principle”, might be worth a look although given the time you’ve been going through this it may have already been explored. Not sure, figured it was worth suggesting, at least…

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  4. Sherry

    Gianna,
    Just curious as to why you tell these control freak docs anything. I pretty much think of myself as case manager and the docs as consultants. They haven’t earned my trust, quite the opposite. I do a lot of research, then decide what the best path is. If it disagrees with someone whose input I desire but who shows signs of being a control freak I simply don’t tell them what they don’t want to hear. It’s not as if the docs pay a whole lot of attention to med interactions, frankly. Again, quite the opposite.

    I don’t mean to say I withhold tons of information. But I do not reveal anything I suspect would touch off someone’s control issues if I still want to use that person as a consultant. So I’m curious why you tell someone you’re experimenting with glutamine if you suspect it would piss them off. Or why you would refrain from trying it if you had found it helpful in the past. After all, you know when the prescribe meds haven’t helped. Why wouldn’t you be able to use the same protocol to make that decision on your own about the glutamine?

    At this point in my life I don’t feel I owe doctors anything. They’ve made a ton of money over the years wrecking my life. I do ask opinions, but test them out with my own research before deciding what to do. I don’t trust any of them enough to tell them the whole picture. That’s my business and my responsiblity, not theirs. I have to live with the results, not them. I wish I’d figured this out years ago.

    Best wishes in whatever you do. I’m not suggesting you–or anyone else–follow my lead, just curious since you trust your self in so many areas.

    I’m also amazed at the docs you manage to dig up. In awe, actually.
    Sherry

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  5. Amy

    Gianna,

    Have you, or anyone else, ever had issues coming of Cymbalta and/or trileptal? That’s what I’m on, working my way through various chemicals in my usual routine and weeding out those I can. Quit smoking (!) in December, cut back on caffeine, can’t address sugar yet, but I wonder if I’m potentially facing serious issues when I address the meds aspect of my chemistry. Ideas, suggestions?

    Thanks tons,
    amc

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  6. Amy

    Glutamine is one of the amino acids used initially to help restore an over-taxed adrenal system, and she recommends taking it (at least this is what I’ve understood from my doctor, and bear in mind it’s somewhat translated and diluted by the time the info gets to you.

    Probably not going to feel comfortable messing with my drugs for a bit, going to try and get better nutritional discipline going first, as well as a bit more physical activity. Doing slow, non-cardio things such as t’ai chi and strength training first, that’s helped quell depression for me in the past. So far my bipolar hasn’t had drastic physical effects, and as I’m a Pilates instructor and my boyfriend is a martial arts teacher I am hoping to not be physically destroyed when I go off my meds.

    We shall see, and thank you so much for sharing everything you do! Looking at all this it seems a somewhat herculean task to me, but I really appreciate the resource you provide and link to.

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  7. Amy

    Good point, I hadn’t connected the fact that I can’t control the nerotoxin damage by trying to use exercise. Typical me trying to find a way around what I can’t control using the things I can control, ah well. Only been on Cymbalta a bit more than two years, but I do need to be realistic about the possible effects.

    Eek. Maybe I need to think about doing this sooner. I can’t do it without the people closest to me being supportive, though, I got into this whole mess by hitting rock bottom (as most do) when I didn’t reach out for enough support and tried to do everything solo. Having someone with some degree of medical experience and/or knowledge at least being aware of what I’m doing is important to me, although I am extremely skeptical that the doctors I’ve dealt with are the be-all and end-all for my particular situation. I’ll listen, filter what they say, and base my decisions on the parts that I feel are relevant.

    Slow and cautious seems to be the way to go for all of us, no more jumping off cliffs for me, at least.

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  8. My head hurts reading about this. I cannot believe our society accepts and promotes this toxic junk as the normal way of healing.

    Actually, since I know the world is mostly insane I can believe it.

    I hope you are feeling better.

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  9. Anonymous

    Hey Amy. ill try to make this quick as my last message to you just got erased. my boyfriend’s going through lamictal withdraws right now. he’s been trying to get off it for the last few weeks by reducing his doses every 2 weeks. i dont know what his original doses was but it couldn’t have been more than 20mg as he’s been trying to get off of it just these last 4 weeks (winter vacation from school). right now he’s on 5mg per day and last week he was on 10mg per day so i know he’s trying to cut it off by next week when he goes back to school. he’s just been so tired and sleeping so very much when he’s’ naturally a very hiper guy who takes seroquil not only a mood stablelizer but also so he can sleep because of his insomnia. i can see how he’s hating the withdraws but he’s willing to do it because he hates evenmore the way the medication makes him feel like a slave to it. i wasn’t all that scared or honestly even concerned about it because i thought he knew what he was doing since he’s been self-diagnosing himself for almost a decade now. but now that i read this blog and a few other websites to just get some info on lamical withdraws im understanding more that i need to help him…let it be with this diet by introducing more glutamine into it or maybe exersizing with him. if there’s any type of advise you can give me Amy it would be really appreciated.

    Anonymous

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  10. I’m just so sorry to hear you’re not feeling well. A little scared by the lamictal withdrawal, as that’s one of the meds I’m on (100 mg). I also take klonopin, only once a week, though. I’m too scared of addiction to take it more than that.

    But mostly what struck me is your physical well-being. I hope you feel better soon. *hugs*

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  11. When I’m locked up, they give me Ativan to take me off meds.

    I actually wrote a much longer comment, but deleted by mistake. Lucky you!

    In losing the comment, I peeped on your video link, so I am going there next.

    I’ve been reading a lovely book by Barbara Kingsolver about living off the local land. I rushed out and ordered sixty dollars of Heirloom plants.

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  12. Shelby

    Understand the reasons behind trusting/not trusting doctors. In the past I’d mention having been on psyche drugs the doctors all assumed ANY physical problems were simply all mental. The Catch 22 scenario.
    I thank you for your blog. It lead me to other blogs and I learned so much on the real effects of psyche drugs.

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  13. Sara

    I do really worry that it’s the Klonopin addiction that’s making you ill, perhaps exacerbated by the Lamictal withdrawal it’s true. I just wonder why one goes off something like heroin cold turkey but tapers so slowly off a benzo. I still don’t really understand continuing to take something that’s harming you so much. I’m really not trying to second guess you here, please understand that, just trying to understand. I know that one would have to be under constant care and supervision to get off rapidly and that there would be lots of physical effects but how is it different from heroin or one of those “hard” drugs — do you know? Thanks if you have any explanation.

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  14. Anonymous

    Hi Amy. thanx for the response. Im still trying to see about how it is i can possibly help my boyfriend with the lamictal withdraws. can you give me any advise you would’ve wanted your loved ones to have received when you were going through your withdraws? he’s mood swings are getting worse and he doesn’t see it. I asked him about his medication yesterday and he told me he was on 100mg per day just 3 weeks ago and his now cut down to 25mg per day so i know that can’t be good. any books you could possibly clue me in would be awesome to.

    Greatly appreciated,

    Anonymous

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  15. lea

    Hi i’m on 400mg of Lamictal and i want to get off of it in a short period of time. I just cut back to 200mg two days ago and feel fine. I want to have a baby and we were starting to try until i found out how hard it might be to get off of this stuff. Are people able to get off of ot easily ever? I’ve been on that and seroquel and wellbutrin for 2 yrs. I’ve stopped the other two about week ago. Any thoughts? thanks

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  16. I was taking 100 mg of Lamictal and after about 6 months developed blurry vision, reading/writing/typing problems and started to feel outside of my body. It was very scary. After doing some research I found out this can happen with Lamictal. I had a starter pack lying around so I put the 25mg doses together and did two weeks of 75 mg and then went down to 50mgs. The weird symptoms subsided and now I’m doing pretty good. I didn’t notice any particular withdrawal effects.

    I’m something of a hypochondriac and getting online can actually be dangerous because I’m suseptable to suggestion. I’m posting this for other hypochondriac types for the purpose of saying: just because other people have horrendous withdrawal symptoms doesn’t mean you will. Some people do go through hell, reading the stories on this website proves that, but that’s not a given in your situation. I withdrew from 100 to 50 mgs within two weeks and was okay. Some are more sensitive to chemical changes than others.

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      1. Good point Gianna. I was actually really afraid because of what I had read on the internet to withdraw from Lamictal at all but given the hell I was going through I had no choice and I’m just thankful the disturbing symptoms subsided and I wasn’t sent reeling by withdrawal.

        Now, Zyprexa withdrawal after 6 months was a different matter all together. I couldn’t sleep, had weird numbness and hot and cold feelings in my hands and feet and in general was going pretty crazy. It was awful but nowadays I’m doing okay. That was all back in September. I’m also free from the small amount of Xanax I was taking.

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  17. Ellen

    I began disconuing Lamictal last week. I was on 300 mg/day and am not taking 250mg/day. I thought I was beginning to lose it until I stumbled upon this site.

    My symptoms have been extreme anger toward my husband and, sometimes, my daughter. I have also felt incredibly uptight. The one upside has been an increase in energy, but that also means I am not sleeping well. I feel manic, but the reason Lamictal was first prescribed for me was to decrease depression. My psychiatrist cannot decide whether I have Bipolar Type II or not; this is after 10 years of seeing me as a patient.

    I think it’s time to find a different psychiatrist!

    Thanks to everyone who posted their reactions to Lamictal withdrawal. It’s helpful to know that I’m not the only one whose has suffered from these effects.

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  18. marigold

    Ellen~

    I also joined found this website due to my bad experience with withdrawing from lamictal. As Gianna says over and over, her lamictal post gets the most hits but i haven’t yet found someone else whom is having the increased energy and insomnia and was originally put on this for depression-this is my story completely!

    I am not sure if you joined this website or not so you may not get this. I’ve posted many times about my continuing experience with lamictal withdrawl (started in jan.) here so i won’t repeat myself but i am still ahving the awful insomnia…anyways if you come upon this i would love to hear your story and how you are doing. Take care.

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  19. Mafk

    You talked about klonopin – man, this is bad. I’ve been on Klonopin for over 10 years and trying to get off of it. I don’t think I ever will. I am taking gaba (from GNC) to help me get over the withdrawal symptoms – it seems to be working.

    SEO Columbus

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  20. Matthew

    I recently responded to similar post about Lamictal withdrawal on this website and was asked to clarify how I came off. This is specifically a response to Jeffrey.

    I don’t know why comments were disabled for that thread because this is all very important and everyone needs to know that they aren’t alone and it does get better as it has for me.

    Anyway to quickly go over my dosage — When starting I worked my way up to 300mg which is the only dose that stabilizes my moods, but did dumb me down and killed my creativity. As an art student I needed to regain it so I tried to stop cold turkey. 3 days later I was “dizzy” and strange but restarted and instantly felt normal.

    Months later during Christmas break I dropped my dose to 225mg and started Vyvanse at the same time. I don’t know if it counteracted the dizziness, but I felt no change going from 300-225mg. The break ended so I stayed at 225mg.

    Summer break hit and I took the opportunity to try going down more. My doctor gave me the Ok to drop 75mg every week. There was no change with the first 75mg drop and was at 150mg. After a week I continued on to 75mg and within 3-4 days felt mild dizziness and a disconnect that had a fairly short duration, abut a day. I dropped the last 75mg and with the second day felt increasing dizzy. The next morning I woke up with a fever, sweating, increased heart rate, very dizzy, uncoordinated, muscle twitching, “electrical” sensations behind my eyes and my head and had the most painful headaches I’ve ever experienced. I started hallucinating and feeling “strange”. After hours of research I came across a symptom known as depersonalization. This is spot on to what I felt when I say “strange”.

    These were unbearable so I went back up and reached 150mg and within 2 days felt normal. I went down to 125mg and felt a very mild dizziness, then realized I ran out of the drug and couldn’t get more in time so I had to take 100mg for a day then had none to take the next day. I got frustrated and having known I was capable of feeling better(I thought I had permanent damage) I stopped all of it.

    I believe the depersonalization was a result of the hallucinations. I didn’t see people or hear voices but things were distorted. Moving objects had trails behind them and I saw afterimages, or imprints of things(similar to looking at bright lights then looking away and seeing spots) It felt like I was wearing glasses with too strong of a prescription too. I felt pressure in my head, but it wasn’t pain like a headache. I was very photosensitive and squinted alot because everything was 10 times brighter. I felt like I was floating around, and sense of touch was “off” like I was in some virtual reality simulation. Sounds were muffled and had a tunnel effect. I had to watch TV with the volume very low because loud sounds were painful.

    I didn’t have emotions other than fear and panic. I couldn’t cry, get angry, feel sad or remorse. I got angry once during this phase though because of a conflict with a neighbor and felt extremely homicidal and of course suicidal. I’ve always had a very strong ability to rationalize situations and that’s the only thing that stopped me. And to be clear I wasn’t suicidal because I was depressed. I was suicidal out of panic and wanting to end the sensory changes. At one point I considered that I was already dead, or had lost my soul which I don’t even believe in normally. GRAPHIC —- In all honesty if I had access to a gun I would have thought nothing of using it on myself and emotionally it seemed as easy as taking out the trash. The reason I didn’t consider other methods is because I didn’t want to screw myself up more by nearly dying and having permanent damage. I wanted to know for sure it would end. —- If you feel this way then you need to stay strong and remember that this is something in your brain and will go away and suicide will affect your family and friends, even if you cant comprehend sorrow at the time, try to remember what its like and wait the urges out. Please if you have access to klonopin or ativan TAKE IT. If not go to see if the they can give something like it at the hospital. It doesn’t take away the hallucinations be it helps the panic.

    In my case the first 2-3 weeks I felt I was IN hell, not “going through hell” as many say. My house felt “evil”. At the 4th week my mind was exhausted and it was getting very hard to rationalize that this was a reaction to a drug and unusual thoughts such as being without a soul or in another dimension seemed less strange to me. I felt myself slipping into insanity I guess. It was the final obstacle because I started feeling better each day after that. More grounded, more real. Still disoriented but as the days went on they became “dizzy spells” however I woke up with massive panic attacks for a few days. Things quickly improved after that. I feel as close to normal as I’ve been in awhile. I can function and my quality of life is back to normal. I don’t feel like the same person but not in a bad way.

    Now, the most important thing is recovery and coping and this is how I did it. I watched nothing but comedy, I explained what I felt to friends and family. They are very supportive. I too initiative made lifestyle changes such as SETTING SCHEDULES. I can not stress how important positive thinking and structured sleep and meal schedules are. Eat clean, healthy foods. Exercise. I don’t care how bad you feel, lift weights or run. Start taking a multivitamin and fish oil. All of these things saved my life and sped up my recovery. Good Luck

    if you have any other questions email me at icedearth156@hotmail.com

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