Lamictal (lamotrigine) withdrawal–important update

The post that gets by far the most hits on this blog is the one entitled “Lamictal withdrawal from hell.” The title of the post clearly attracts people when they do google searches. My post and Philip’s posts on Lamictal withdrawal at Furious Seasons (now available on this site) both have long ongoing commentary. People are struggling and don’t know what to do when it comes to Lamictal withdrawal.

Virtually all my physical debilitating symptoms can be traced back to when I first started tapering my 400 mgs of Lamictal. It was then that the crushing fatigue started, a couple of years ago. My situation is greatly complicated by the fact that I’ve come off six drugs so no one should generalize too broadly from my experience, but something should be able to be taken for those of you who are also having difficulties with withdrawal from Lamictal.

The latest tidbit in my withdrawal story involves both Lamictal and Klonopin, but has a very interesting detail about the Lamictal that anyone tapering from Lamictal and having difficutly might want to take note.

First you must know that it is taking every ounce of energy for me to write this. I remain very physically ill and weak. My symptoms are primarily physical and not mental in nature. The mental aspect comes from great frustration with my physical debilitation. I’m also really sick of writing about this crap, but I feel I need to share this bit of information. I can’t say how many more times I will write about the withdrawal journey from this side. I really hope to get to the other side (that is the drug-free side) and have something other than my arduous withdrawal journey to discuss.

In any case, I had managed to cut down to 2.5 mg of Lamictal after more than 2 years while sometimes taking breaks and getting off other drugs as well. I repeat, though that it seems my physical illness has always been triggered and made worse when I was withdrawing from Lamictal in particular. This is from a high of 400 mg and you can imagine most people and especially doctors would find it ludicrous that anyone be on 2.5 mg. Doctors in general have you come off the last twenty-five mg all at once and most will recommend you come off in a matter of a few weeks to couple of months from an entire 200 to 400 mg therapeutic dose. Some of us know this is insane and dangerous advice, though it may work for some.

I was also on 3 mg of Klonopin. I was sleeping good. Had been sleeping good since my crisis, after recovering from it and getting off all the extra meds I was on for 12 days. When taken for an emergency meds can be withdrawn very quickly and safely. It’s the long term use that gets us. In any case, I was sleeping a good and hard 7 to 10 hours of sleep for about 2 months.

I dropped the 2.5 mg of Lamictal 6 days ago. Lamictal makes me nauseas—extremely nauseas, even at this tiny, virtually non-existant, certainly small amount that any doctor would disbelieve could have any effect at all. Well I dropped the 2.5 mg figuring it was a small enough jumping off point. The nausea blessedly stopped. But so did my sleep. I didn’t believe it could be the Lamictal. I too, continue to disbelieve what is obvious, but so hard to grasp—such a tiny amount of drug having any significance.

I continued getting very sick each night—profound flu-like malaise, after taking the Klonopin in which I don’t start to recover until the next day. Though the Lamictal induced nausea was blessedly gone. Every night I have to go through the very painful ritual of taking a drug that sickens me profoundly because I learned the hard way coming off it too fast is worse. The Klonopin is toxic for me. The only way I felt better was that the nausea was gone.

So two nights ago I wrongly thought it was the Klonopin keeping me awake and not the 2.5 mg drop of Lamictal. I cut half a milligram of Klonopin from the 3 mg. This is a massive cut in the world of withdrawal. I don’t recommend it, but I’m doing what my guts tell me to do. And the Klonopin is making me damn sick…want to get the fuck off of it.

Granted my guts are not always right and in this instance they were only partially right and I needed my husband’s guts as well. I went four nights sleeping very little and my husband started telling me I should go back on 1.25 mg of Lamictal. I resisted strongly. Once I actually get off a drug I really don’t want to go what feels like backwards. One evening two nights ago exhausted and frustrated I said, “Fine, go get me the Lamictal.”

I took that 1.25 mg of Lamictal and the last two nights I’ve slept like a baby again inspite of tapering half a milligram of Klonopin. This is huge! Sometimes what feels like backwards is profoundly forward. If I sleep I can hope to heal.

So for anyone tapering Lamictal I want to caution you, if you are having troubles, know that it is possible that our bodies are so sensitive to it that 1.25 mg can effect us. Strongly. That means the whole taper must be approached with great respect for just how toxic and addictive this substance is. I might add that all psychotropic drugs can be like this depending on the individual. I’ve seen this sensitivity in my withdrawal groups with all drugs but it’s an individual thing.

And oh, yes, the nausea is back big time too. At 1.25 mg. For now I’ll take the nausea as long as I sleep.

Also, now I intend to work on the Klonopin which makes me sick and stay on the 1.25 mg of Lamictal for a while.

Best to all of you.

Please, if you are withdrawing from any psychotropic support your mind and body with things like diet, nutrition and meditation. Lots of other resources to help heal above in the drop-down menus at the top of the page

For those of you who haven’t been here in a while, please share your Lamictal stories from when you last visited. Thanks.

Oh…I should add…the mere fact that I wrote this is an indication that I am doing better…I’ve hardly been able to write for the last couple of weeks…and I feel energized for the first time in a long time too…baby steps….

Oh…final tip: I use 5 mg pediatric Lamictal pills and am now taking a quarter of one of them. That is how I manage to get a 1.25 mg dose.

Much more info: Lamictal Redux

About Monica Cassani

Author/Editor Beyond Meds: Everything Matters

76 Responses

  1. Aurora

    Thanks to your advice I’ve been tapering much more slowly, using pediatric doses. I’m down to 150 from 400 and it’s less hellish than it was when I followed my doctor’s advice and was coming down 25 mg every two weeks. Now I feel my way along and go down by 5 or 10 every 5-10 days depending on how I am feeling. But each step down I stop sleeping. I’m often up til 2 am, and I get shaky, skin crawly and agitated. Sometimes I fall asleep around midnight, but wake at 4 am with racing pulse, agitation and tense, jumpy leg muscles. I have to be careful about sleep loss because I have epilepsy and sleep deprivation can trigger seizures. I am also tapering down my dose of progesterone, which helps control seizures, but which has apparently also been boosting my cortisol levels sky-high–which adds to jumpiness, agitation
    and insomnia. Tapering progesterone is a huge deal, with even wider reaching effects, I think. Each step down on that results in some intense, usually brief, bouts of depression. I also just feel strange mentally– not quite hallucinatory, but things seem to echo strangely in my head. Hard to describe any more precisely. I’ve had a lot happen to my head– traumas, seizures, stroke, so it’s hard to say what causes what, but I’ve noticed this odd state mostly during different times of drug withdrawal.

    What’s helped me the most has been using herbal tinctures. Calamus root is used in drug treatment programs in Australia for withdrawal symptoms. It can cause nausea alone, but a dropperful of ginger tincture mixed with it has taken care of that for me. And then Oat seed tincture which is also calming for the nerves. I use valerian and scullcap to help me sleep, and sometimes I can get through a whole night. The valerian is strong and can leave me a bit dopey in
    the morning if I take it too late. FInally, I take St. John’s Wort for the progesterone depression. Works like a charm.

    All this makes it just about bearable, not easy. I have to keep balancing my really, really wanting to be off this stuff with both the intensity of the withdrawal symptoms and the risk of seizures. I started tapering in February. I’m hoping to be done by February, but I have a hunch that the last steps maybe the hardest and am prepared to extend into March or April if I have to.

    I want to validate your experience of very small amounts of drugs having a strong effect. I was prescribed Percoset for a severe shoulder injury. Following my very drug sensitive mother’s advice, I took 1/8 of a 5mg tablet. (The doctor wanted me to take 10 mg per dose!) The 1/8 tab was less than 2/3 of a mg. I was in a powerful narcotic dream state for a whole day after the first dose. The drugs we’re prescribed are so much stronger than we’re told, and we’re prescribed such massively overkill doses!

    I have debilitating fatigue anyway from long-standing chronic fatigue syndrome, so I don’t know how much lamictal withdrawal is contributing to the ups and downs of exhaustion, other than by depriving me of sleep. Hard to tell. I’ve gotten some relief from fatigue by taking eNADH. But it comes and goes.

    It makes a big difference to me to hear from other people going through this. It’s day to day horrible and I’m doing it alone. I can barely remember what it was like not to be in withdrawal. But knowing other people out there are also doing this and figuring this out as they go helps me recognize my own courage and endurance, for which I’m deeply grateful.

    Aurora

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  2. Thanks to you and Philip’s site for this crucial patient anecdotal story/stories; I’m about to embark on a 50mg Lamictal withdrawal in the near future. After being on it 2 years or so, I read all of these comments with much appreciation, as the ones who have suffered/traveled this road are the ones who really do understand and speak the truth.

    I hope you are soon off all meds and writing about it Gianna.

    ((HUGS))))))

    Stephany

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  3. Ana

    (((((Gianna)))))
    I’ve just read a comment you left on another blog.
    I’m amazed you are withdrawing Lamictal and Klonopin.
    Klonopin is very difficult to withdraw.
    I’ve withdrew Effexor alone for 18 months. I use to take 225 mg.
    When I was on 35 mg I thought: “-Well, it will be easier and easier now.”
    No. It was the worst part of the withdrawal. I should be on 35 mg for, let’s say, 6 months or more.
    Looking back I wish I had done it.
    I’ve cut this last dose in two and finally reached the end.
    After off Effexor life became impossible. I felt terrible. I had to have people in my house for the first time in my life.
    I had to go back to Effexor.
    I’m reporting my experience to you with this drug. I’m just saying it so that you can have an idea.
    Don’t you ever think that the same will happen to you.
    Perhaps just let your body adjust with this last dose longer.
    You did an incredible work already.
    I hope you find balance.
    Love,
    Ana

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  4. Doe

    Thanks for posting this. I want to echo what everyone else is saying about feeling validated by extreme drug sensitivity. It is helpful to know. I have this same sensitivity to seemingly micro-tapers that are hard for me to believe…so to hear other echo this helps me a great deal.

    Also, you tell people you are on this tiny dose of a drug and they tend to think “So what? It’s so little, what does it even matter?”.

    It matters. Somehow, for me, even being on a tiny dose of prozac still affects me profoundly. Even 5 mgs of prozac entirely zaps my sex drive and sensation, my state of mind, and I think contributes to a constant state of malaise….I’m used to feeling dizzy and tired a lot, and I don’t make big reductions.

    Cuts of only 1mg are WAY too steep for me, and I can definitely feel just a .5 mg reduction big time!

    Anyway, thanks to everyone, for helping me feel less nuts about the whole thing. That’s what talking about this stuff does.

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  5. Doe

    ps. I was on lamictal and various other “mood stabilizers” for about 2 years. It’s such a drop in the bucket compared to the ssri long term use, that I don’t remember much about them.

    I didn’t have as horrific a time getting off them, I think, simply because I wasn’t a long term user.

    However, I do remember how toxic I felt on those meds. I never felt more fucked up mentally and physically than when I took them. They made me much worse.

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  6. You make me thing I should write a blog for the opposite end of the spectrum, my battle with side effects for everything I took.

    The stuff they don’t tell us. I expect side effects, but beyond SSRIs I don’t even think of withdrawals. I am glad that so many people are being helped by you.

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  7. Roman

    I want you all to know that I have been off of Lamictal since last spring. You should know that Lamictal withdrawal is excruciatingly depressing. My depression continues today, but I push back hard. When I began tapering (too quickly, I might add) I was in tears A LOT OF THE TIME. Go very slowly with Lamictal tapering, EVEN IF YOU THINK YOU CAN HANDLE IT.

    I would suggest seeking help with a professional. If you are anti-doctor, see a therapist. And that doesn’t necessarily mean someone who will prescribe medicine. There are government funded programs where you can find counselors at no cost, AND they are not allowed to dispense medicine. I could give you information, but mine is only local.

    Remember that Lamictal is UNDERSTATED by doctors in its ability to cause SEVERE depression, when stopped being taken. REMEMBER THIS ALWAYS. It is the withdrawal that can make you feel suicidal–not necessarily you!

    I try to set goals for myself. For example: last spring I planned a trip to Holland. While engulfed in depression I purchased my plane ticket. I depart for Holland in 2 weeks. I’m still here, but I can’t tell you how many times I have wanted to “check-out”.

    If you are depressed, I also recommend adopting a pet from your local pound. In most cases you have to sign a life contract with them that you will not abandon them. My cat Benji has been my saving grace, many times. I know how he depends on me every day. I’ve never seen a more co-dependent cat 🙂

    Adopting a pet holds you accountable to their life, as well as yours. And they just make you feel a bit better too.

    Good luck guys, and hang in there.

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  8. Dear Gianna,
    As always, I wish you the very best with your heroic journey. Once again, I find it so interesting that our bodies are wired so differently. As I’ve mentioned before, Lamictal was one of the drugs that I could taper off with no side-effects whatsoever. But then it never helped me either. And Klonopin had such a negative effect on me that I stopped taking it years ago.

    I have always felt there should be some database where we could all feed in information about the drugs we take and the effect they have.

    And I also believe that everyone who is studying psychiatry should read accounts like yours–and those of others–to understand the impact of these medications and the misery they cause.

    When I used to read books about psychiatric medication, I always wondered why the case histories were so positive, when the reality–for so many–is so very different.

    Susan

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  9. Beccs

    Hey all! First of all I’d like to thank everyone who’s posted their experiences on this site. It’s been a huge help to me to know that what I’m going through is “normal”. I was on 200mg of Lamictal for about 4 months. I was originally put on the Lamictal because my psychiatrist diagnosed me as having Bipolar Disorder. She also diagnosed me, in the same visit, as having Borderline Personality Disorder. I had never heard of Borderline before this, but after having her tell me about it I knew that it was what I had been suffering from. The Bipolar, however, never seemed to fit me. I had done research on it myself and could never convince myself that I met the “criteria”. After hearing about the Borderline and researching it I finally found a diagnosis that “fit” me. I met almost all of the criteria and when I read books about Borderline I felt like they had been written about me. My psych ended up telling me in a later visit that she suspected I may not be Bipolard at all, because the Borderline can often seem like Bipolar. But she still kept me on Lamictal. I purchased a Dialectical Behavior Therapy workbook, which has helped me make great progress in my quest to beat this. The meds never seemed to “control” anything. After much thought on my part, I decided to taper off of the Lamictal to see if I could function without it. I didn’t like the way it was making me feel. I felt “out of it” all the time. Also, it made me have trouble breathing and with any physical activity I felt completely spent. Something as simple as taking a shower would make me feel like I had just ran a marathon. I used to be a very active person..karate..working out..outside activities..and I was suddenly unable to do any of that. I know that it was the Lamictal because after tapering off of it I can breathe and be active again like I used to be. Although the months not being able to exercise did take a toll on my endurance. All that aside, I decreased the Lamictal by 50mg each week. I’ve been completely off of it for about 10 days, now. I’m feeling some of the withdrawal effects that have been listed by so many on here..fatigue, “haziness”, irritability and strange thoughts. I’m very thankful for this site because it is so informative and provides me with hope and support. I have also recently stopped taking my 25mg of Seroquel due to the fact that it makes me way too sleepy during the day, even though I took it at night in oder to sleep. I’m going to try 5mg of Ambien tonight, due to my inability to get “real” sleep since I quit Seroquel, in hopes that it won’t affect me as badly. I also want to address the statement about a tiny amount of a drug having such a big effect on your system. I know that this is true and I can relate. I’ve been on klonopin for several years to control panic attacks. I started on 2mg and now I’m down to .5mg. A HALF of a mg. I ran out of my klonopin at one point and decided that I’d try to go without it because, after all, .5mg isn’t that much. BIG MISTAKE. I had really bad panic attacks and night time was HELL. I couldn’t sleep because I was in a constant state of panic mode. I called my doctor to get a refill on my prescription a few days afte enduring that hell, and slept like a baby the very first night I took it. Once it got back in my system again I stopped feeling panicky. So I know all too well how such a low dose can have such a profound effect. I agree totally with you guys. Anyway, that’s my story and I hope that all of you continue to post to inspire and have nothing but success in your journeys!

    *Beccs

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  10. Froscha

    My pdoc told me a couple interesting things the other day about Lamictal. Or lamotrigine, by its generic name.

    He told me that even with generic drugs, there are differing qualities; so, a potential for different side-effects from company to company. He has had patients complain about feeling sick or “off” after getting lamotrigine from a different source. Basically, he told me to take note of which ‘brand’ of generics I get from refill to refill. We agreed it was a funny oxymoron.

    He also told me that going a day without your dose, then back on creates a dramatic shift in the bloodstream that will (likely) result in the horrible rash that some people experience as a matter of course with this drug.

    Fortunately I found a way to get my lamotrigine pre$cription refilled last week, so crisis averted!

    Also, when I complained (again!) about the stupidity of social assistance’s drug plan not supporting this drug unless you have a seizure disorder, I ‘joked’ that maybe they would pay for my drugs if I started having seizures after being forced by their policy to quit cold turkey. He was skeptical that a sudden stop on this drug could induce seizures if you did not originally suffer from them.

    It occurred to me he was being wildly optimistic. After the awful experience I had just dropping from 100mg to 75mg, I would not be surprised by anything with this drug. And certainly wouldn’t doubt the troubles people have posted here on taking very small doses.

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  11. Beccs

    Hey giannakali! I do agree that the Lamictal tapering probably could’ve gone more slowly. I actually thought that I was going at a pretty good rate until I found this site and started reading that people tapered over several months or years. I didn’t know that klonopin was considered to be that strong. I did research on it when I first started taking it but I don’t think I ever came across anything that compared it to valium..however that was a few years ago and I may just not remember. I always thought that Valium was way stronger than klonopin..guess I learned something new! I don’t plan on stopping the klonopin. At least not any time in the forseeable future. If I do decide to quit I’ll definitely be more cautious thanks to your info. I’m not by any means trying to discredit any doctor or clinic, but it was prescribed to me by my doctor at the MEA. I love my doctor there and he’s always steered me in the right direction, but unfortunately I don’t think he knows as much about certain meds as he should. Or if he does, he isn’t sharing the info with me. He was the first to diagnose me as Bipolar and he prescribed me Neurontin. He had me start at 300mg a day and over the course of one week I was up to 900mg a day. Talk about feeling “out of it”.. I think it’s sad that it’s so easy for psych disorders to be misdiagnosed, but then again, the spectrum of disorders out there is so broad it almost seems like a kind of “hit and miss” effort sometimes. Anyway, thanks again for this site and keep up the great work!

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  12. Shelby

    Just a note to say HI.
    It’s hard going when coming down to the last of these drugs.I remember all the sleepless nights when going off the drugs.
    There is a rainbow waiting for you. You’re almost there.

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  13. Sloopy Cowbell

    Yours is an amazing journey, Gianna!

    I used to groan with embarrassment when I heard people calling themselves Psychiatric Survivors, and describing at tortured length their battles against powerful drug addictions.

    I used to think they were self-obsessed, weak-willed fuss pots. Now from my own personal experience, and from reading your own story, I can fully understand..

    So glad you’ve got your sleep back.. a good night’s sleep is one of our most prized possessions! Dosed up zombie dozing is no substitute!

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  14. Just know I'm with you...

    I’m going to semi-‘out” myself. I used to be a pharmaceutical sales rep and worked for (guess who??) Glaxo Wellcome. I never sold Lamictal but did sell Wellbutrin SR. One thing everyone needs to realize is that, when doing a drug study, the goal of the study is to measure and ‘prove’ certain endpoints. There are many, MANY studies that never see the public forums because they didn’t prove the endpoints they set out to prove. This also means that any negative effects observed during the study also never see the light of day (unless they show up in another study as well.) Side effects are measured during the study. If someone dies during they study (even if they get hit by a bus- i.e. totally unrelated) they are considered a death in the statistics of the study.

    Pharmaceutical companies do not do studies on the withdrawal effects of the drugs they produce. Quite frankly, they are not interested. They do not make money or gain any benefit from a study(ies) of this nature. The only time a pharma company would be interested in these data is when they threaten the viability of the drug on the market.

    So, my friends, we are the ‘throw-aways’ of the drug companies. We don’t matter. After all, we don’t contribute to their bottom line anymore. Best of all (for them), it’s almost impossible to prove that their drug is responsible for the “so-called” withdrawal effects we say we’re going through. Our stories are what are called ‘anecdotal’ evidence. Definition: based on personal observation rather than systematic scientific evaluation. We all know how much power ‘personal observations’ are worth to the world- especially those which come from the documented mentally ill.

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  15. Beccs

    Thanks for the post! It’s sad that drug companies can sleep at night doing that to people..but I guess the money’s just way more important. And to be honest, I trust the opinions of most of the people I’ve met on these forums more than I do the “big” companies.

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  16. Jan

    Gianna:

    I have been reading about how the last, small doses when tapering a med seem to be the absolute worst in regards to withdrawal. And knowing how sensitive our systems become after being on these meds, esp. several at a time, I am wondering about something that may be what is going on with me. I noticed you telling someone that .5mg of Klonopin is not a small dose which makes me wonder about the amount of Tofranil I was on while also on .25mg clonazepam and 750mg Depakote. After having gotten off of the clonazepam and then the Depakote, I was still on my continued dose of “just” 10mg Tofranil. I then began to taper off of that. Here’s my question: Could that 10mg of Tofranil still have been a “large” amount for me given the fact that I am now super-sensitive and been on these other meds, too? I have likened 10mg of Tofranil for me to the equivalent of 100mg or more for someone else. I hope I’m not screwed up in the way I’m looking at this.

    Jan

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  17. marie

    dear giannakali:

    thank you for your website. it’s great! i stumbled upon it today. i was looking for a info regarding lamitcal w/drawal. i’m down to 150 mg from 400 mg. i’m afraid to tell my doctor i want off of it…because i know it won’t go over well. anyway, i tried to taper by 25 mgs 2 years ago and it was bad. so i stopped. this time, i’m tapering by 50 mgs, every 2 wks, and as much as it hurts right now, it’s better. although i do feel like there is a vice on my head as i type right now. also, today is my last day on klonopin. tonight and tomorrow morning should be interesting. i have been on both for 11 years. my drs. really pushed me to get off klonopin. they both said the long term effects are not good for anyone (memory loss, etc.)., but they want me to stay on lamictal, but i know this drug is not good either. i want to be drug free. i want to see a natural doctor now. thanks again, your website is so helpful…the information is great for me and people like my family. i hope this paragraph makes sense to you all, because right now i’m finding it hard to even type…i’ll check in – in a couple of weeks when i’m on 75 mgs….and continue, this feels like a support group, and yes, there is a rainbow at the end, i will get there. : ) (today: very foggy, 1st time nauseous, real bad headaches, can’t concentrate, vice on head!). marie

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  18. Jan,
    I think you’re looking at it just about right…

    10 mg Tofranil is the smallest dose it comes in, but it can be very powerful for some people…

    I never tolerated tricyclics so I don’t have much experience with them, but I can tell you very low doses made me very sick from the get go so I can extrapolate from that that it is potentially very powerful….

    anyway, I really don’t have the answer for you but your theorizing sounds completely reasonable to me. Ultimately we have no hard facts about our experience…we can only observe and come to reasonable approximations of what is going on….

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  19. Jan

    Gianna:

    Thanks for your input. As much as I hate to hear that Tofranil made you sick, it’s also very good news because it means I am on the right track in thinking a little bit was just horrendous for me! I am really struggling with feeling like I will never get better, and I have read on a ‘Protracted Withdrawal’ list that this is definitely one of many of the symptoms. I feel very hopeless today. Simply put, I need reassurance that I’ll get better some day. It’s very scary.

    Jan

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  20. Jan

    Gianna:

    I do comb through the recovery stories. I have to do more of it at this point. It would be great to have an actual recovery group, live and in person, right here. There is a Depression Recovery group nearby and I have been considering it; I’m hoping maybe somebody there is going through withdrawal.

    I’m glad I have company (not that I want anyone to be going through hell).

    Jan

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  21. Froscha

    There is a book I just started reading about the entire family of anti-depressants, called “Prozac: Panacea or Pandora?” by Dr. Ann Blake Tracy. Tracy has been an expert witness on the dangers of these drugs in US courts and seems credible if occasionally self-aggrandizing.

    What’s scary is, as ‘Just Know…’ touched on, the number of trial results that were discarded — “oh, those deaths aren’t relevant!” and then, the number of wrongful death trials in which Eli Lilly settled out of court with gag orders on the families. (She digs out and documents everything!)

    Since Lamictal and other anti-convulsants aren’t included in the edition I’m reading, not much of this is still relevant to me (or this thread, uhm), but I often think, “*$#%, if only I had known this when I was first put on anti-depressants.” Still, I wouldn’t be on anti-seizure meds today if not for that first mind-altering prescription.

    It’s horrific that this is the standard treatment model for depression and so-called bipolar disorder.

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  22. Just know I'm with you...

    Froscha,

    Please be aware that multiple studies on ALL drugs (all classes, all indications) are buried in-house for one reason or another. It may be for a reason as simple as the fact that it didn’t show enough efficacy.

    The other edge of this sword is the fact that all of these drugs do work well for some people for some indications. Lamictal is indicated for seizure reduction in patients with specific seizure diagnoses. It’s now (as we all know intimately) being used heavily for other indications for which it was not studied. They went back and got the bipolar indication after it was being used heavily for bipolar, not before.

    There are some drugs which, although really bad (cause death) for some people, literally can save others or allow them to lead somewhat “normal” lives. Sometimes, these drugs are pulled off of the market because of the death rate but are then sometimes put back on the market under ‘orphan’ drug status (meaning they are the only option for…whatever…) Awareness MUST change in regard to how horrible some of these drugs (like Lamictal, IMO) can be but we all do need to remember that there are those ‘orphans’ out there who can’t survive without them.

    Just a thought for the day…

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  23. Froscha

    I don’t disagree with the notion that -some- people may not be able to function without some of these drugs, but rather it’s the wholesale lie that conceals those many who are not helped or react badly, sometimes extremely so, which I’m objecting to. Some of the discarded studies that Tracy recovers seem to indicate a very troubling trend in negative responses, and of these some were deliberately shielded from the appropriate government bodies even under request.

    I’m not sure from your tone if I gave you the impression I think -all- drugs are evil for all people, or if you were directing your comments at the whole thread. If the former: My outrage isn’t a symptom of alarmist, conspiracy theorist all-or-nothing thinking but rather a fresh reaction to learning how avoidable so much of the suffering of users and their families could have been.

    The key phrase was “the standard treatment model” as opposed to a last resort when a drug is, or should be known as, a potentially dangerous agent.

    Apologies if I’m misreading a “now, now” tone that isn’t there or directed squarely at me. I blame the PMS. Or the drugs. Or whatever. 🙂

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  24. Marie

    Gianna,

    Thank you for the input and caring. I’m now off Klonopin completely and I’m down to 75 mg of Lamictal for the next 2 weeks. Yes, tapering is …very… difficult, but I worked through it and I’m fine now. Although my head feels fuzzy and I have a hard time concentrating, I’m really okay, and I know I’ll get through it. I workout everyday (almost) and I eat really well, and in bed by 9 or 10. So I’m taking care. Thank you so much for the support. I saw my dr. 2 weeks ago. I told her that I lost a couple nights of sleep coming off Klonopin – she wrote me a prescription for Risperdal. She loves to write prescriptions! The patients waiting for her always fall alsleep in the waiting room – or seem too. I’m seeing her tomorrow to let her know what my plan is, because I just couldn’t tell her last time. It just wouldn’t come out. Hope it goes well. I’ll check back later.

    Marie

    Like

  25. Just Julz

    Thank you Gianna for documenting everything that you have been going through. It is a great help to so many of us, as you can see by the number of ongoing comments. I appreciate it all so much, from everyone.

    I am taking Lamictal, and Klonopin, and have just gotten off Reglan which I needed to take with Percoset after a hip surgery. I felt that my doctors didn’t give me the information I needed when prescribing these meds, and even today, my psych told me there were no known withdrawal symptoms with Lamictal. What BS! I wanted to hand him your web address right there and tell him to brush up on some real life stories.

    He is willing, however, to support my reduction in dosing of Klonopin, which I started taking to recover from withdrawal from the Reglan, which sent my into some pretty bad depression and suicidal thoughts/despair, etc. It has been a very messy couple of weeks, and hope that I can decrease the Klonopin reasonably quickly, without too many depressive affects to myself or my dear patient husband. The Dr. is also supportive of my reduction in Lamictal, though he clearly doesn’t think it is necessary. I think he should try taking it sometime.

    One thing my regular DO has me taking is SAMe, and I have been taking it for years. It seems to be the best thing for me, or so I think. I understand that it could cause more rapid cycling, or more hypomania, but really, at this point, I could do with some joy, elation, and productivity. As an artist, these drugs have been absolutely killing my creativity. I am so looking forward to becoming a whole me again.

    Does anyone have any information about how to find a holistic/naturopathic psychiatrist? I really think that is the direction I need to look, and am at a loss. I don’t want to be forever at the mercy of a dr. who doesn’t look outside the box

    I hope the best for you too, Gianna, and for everyone else who has shared their stories. I send BigHugs to all who need them, and hope we all find peace in our bodies, and peace in our minds.

    Julz

    Like

  26. Just Julz

    I just called a friend and she gave me the name of someone she works with who has a more natural approach, that she knows and trusts, and hey, they also do insurance! Also found someone through Google who is a holistic naturopathic psych who takes everything into account: nutrition, lifestyle, life stressors, including of course, everything med or diagnosis you’ve had thus far. Whew, and they are both in the same area, though about 80 miles away. I’ll try them anyway- calling first, interview, and then a visit. I have hope!

    Thanks again for being here for all of us. Your journey has really highlighted how different each of us are, and how much we all need to support each other by sharing information.

    Have a good night!

    Like

  27. chris

    Hey everybody thanks for all the info.

    So I’m seeing my Pdoc on tuesday and I’m going to begin my withdrawl. I’ve been on 250 mg of Lamictal for a bit over a year now for a psychotic episode. I didn’t hear too many stories here about people who had full blown psychotic episodes, but I’m assuming some have. Lamictal was so shitty to get on just b/c how long it took, but all my intense psychological pain/suicidal thoughts subsided and have not returned since I’ve been on it.

    It’s nice that my Pdoc is ok with tapering off, although he also doesn’t see a need for it. I’m going to do it very slowly. Was thinking 25mg every month, possibly every 2 months. Basically until I feel withdrawl effects have subsided at that level. I’m trying to eat well/exersize/sleep well too.

    Well good luck to me and I hope you all take good care of yourselves. – Chris

    Like

  28. chris

    Nice, so much info on that page that I’ll be sorting through throughout this process. Just great. And I’m leaving to see my Pdoc right now and I’m just gonna to try and go down to 200mg over winter break. I had been at 200 before and only went up to try it out and thought it might have been a little better. But anyways I’m working on all the underlying stuff too with my therapist and breaking a lot of bad habits.

    I’m not going to be hasty with this considering all the factors and how I wanna get it right the first time.

    You really are amazing with all this stuff and it is greaty appreciated.

    Like

  29. Tia

    I was aware that Paxil had some wicked withdrawal symptoms because I’ve tried to before, but I was not aware of SE from Lamictal withdrawal.

    Few things I wanted to mention… kind of random (I think it’s my brain!).

    I stopped taking Lamicatal because of $$ situation and we now have no insurance (yes, I know, not smart). Still taking Paxil. AND (and this is the biggie), I quit smoking – yay.

    So. Been having an off & on hard time w/no smoking, relapsed and had a couple. I have also been having those… head buzzes, ‘spinning’ – effects that I now know are from withdrawing from Lamictal (I had them with Paxil, couldn’t take it!).

    My point is — I have been so caught up in the smoking withdrawal, that even though I concluded that the ‘head rush’ stuff was from no Lamictal, I tolerated it because I really was too preoccupied with the smoking/not smoking. So I’ve been off of Lamictal (300 total) for 3 wks now.

    Main BIG concern now is my total lack of motivation & energy and my inability to concentrate to do work. I have my own business which is hard enough as it is to self-motivate and get busy, let alone having this total blah feeling.

    BUT, is that from the Lamictal or not smoking? Or the preoccupation with sneaking a cig – “should I or shouldn’t I…”

    GEEeesh! What a mess.

    Bottom line, I can live with the withdrawal (head stuff) symptoms, but I really really can’t afford to be so tired and *blah*…

    Sorry if I’m rambling now, but I’m confusing myself! We have no insurance at all, so I won’t be ‘consulting’ with any docs.

    Thanks for listening Gianna!
    🙂

    Like

  30. Tia

    Gianna,

    I did in fact read every comment in this thread. I read that some have had and are still having a very difficult time withdrawing from Lamictal. I also read from a few who had a pretty easy time of it.

    I think it will be ok… the worst is over?

    I do have a very good relationship with my doc and will definitely email her about what has transpired.

    Thanks for your feedback Gianna.

    Like

  31. Deborah

    Hello all and thanks to everyone for sharing their stories regarding this drug. I’ve been on 300 mgs since 2001 when I was diagnosed bipolar ll. At the time I certainly had the symptoms, but this diagnosis was very common with this particular doctor in this particular hospital so I question it in an overall sense. We were told never to go off of the meds lest we end up back there eventually. At that time I was on 8 meds when I was released from the hospital. Now I am down to my last 2, having just recently tapered off of prozac. That took a while and I only told my doc after I did it. He cautioned me on just stopping prozac but never mentioned anything about Lamictal withdrawals when we talked of going off of that one too. I’ve been off of prozac long enough to know that the problems I’m having now have nothing to do with prozac.

    I really had no intention of going off of Lamictal, thinking if I kept one or 2 meds I would surely prevent the promised return to the hospital, but just recently I was reading about the connection of Lamictal and headaches. I had daily headaches that often grew into migraines. I was popping advil and migraine meds every day. When I did a google after a friend suggested it could be some of the drugs I was taking I was astounded to see that there were many people who complained of daily headaches and migraines when taking Lamictal. So I thought I would experiment by taking a bit less of it. I dopped 100 mgs. Here I am. I had no idea that doing this would casue such an incredible change as to make me believe that I am indeed in need of this drug. But also, after checking on withdrawal symptoms I came across many blogs where people were describing the same feelings and mood swings that I’m having too.

    At this point I’m not sure if I should dose up to relieve the crying jags and depression, or if I should just bite the bullet and wait it out. Since there seems to be no info on how long this lasts, it’s just up in the air for me. I’m seeing my doc next week, but today I called him to get info on what I’m feeling. I’m sure that I’m just going too fast, but wouldn’t it be great if doctors told you just how dangerous it would be to just stop them when they know you have a tendency to do just that? I mean, I’ve learned not to be my own doctor here, but isn’t this what this guy does for a living???

    Anyway, thanks for everyone’s comments, they have really helped me today. On the up side, almost no headaches for a week and no migraines yet since tapering down.

    Like

  32. Deborah

    I guess I did forget to put the amount of time I’ve been tapering 100 mgs. I do forget some things, am a little disoriented and work has been surreal. It’s been about 8 days now. I did not really pay attention to the calendar since I had no idea what I was in for.

    I do remember going up more slowly though. I think it was by 50’s or maybe 75’s. I’m better tonight except I feel like going to bed early. Hugely unusual for me being since I’ve been a night owl since infancy. Poor mom.

    Thanks Gianna. You’re doing great work. It’s so helpful to know we’re not alone in this.

    Like

  33. marigold

    Well, thank-you for this wonderful website. I have been on lamictal for supposed bipolar disorder for 1 1/2 years now. 100 mg for the majority of it, i couldn’t tolerate the higher dose. I moved to a new city with a new dr. and he thinks i may have been misdiagnosed due to being put on lexapro (was a bit hypomanic after being put solely on that and then diagnosed as bipolar after a very qucik fill in the blank questionairre) for a severe clinical depression after alcohol poisining one night 2 years ago.

    Nonetheless, i hate all these meds, i weaned off the lexapro last August which wasn’t too bad. I have been tapering my xanax for panic disorder very slowly and am for the most part down from 1 mg to .25 mg most days. I was getting tummy problems this january and migraines worse than they’d ever been and decided i was so ready to be done with lamictal (although i was hoping to get off xanax first, but thats been very tricky). My dr, at the end of Jan told me to drop from 100mg to 50 mg, i seemed more tired and the headaches started (pretty constant for 2 weeks) and was very fatigued!

    Then my dr, on March 7 told me i could just stop and the xanax too at the same time, but that seemed like too much at once so i listened to my gut and only stopped lamictal (the pharmascist later told me this was a wise choice-it would have overloaded my system). I went from fatigue and groggy to super energy girl, my head was like buzzing and i had trouble staying still for too long. Within two days, insomnia started….and this has been my huge battle. HUGE. The migraines did immediately subside:) (but they have since returned, with the lack of sleep i suppose and stress). So i am trying to not take too many meds, but to funtion i have to take tylenol and midrin as needed for my migraines and benedryl to sleep (which helped two or three nights to get a good six hours of interrupted sleep but has worn off and not really working – i am only taking one benedryl though). Last night i crocheted and tried to get myself all sleepy, my body gets sleepy but my mind is just wide awake, and i finally fell asleep after laying there for an hour (11:30), to wake up at 1:30 am (this is normal lately) BUT could not fall back asleep. HAVE BEEN UP SINCE and i don’t even feel sleepy, i just feel, like fine and kinda groggy (i’m sure it will hit late in the day).

    After reading all of your stories and talking to a pharmascist i see that my dr did not wean me slow enough, but i’ve been off it now for 24 days and gotten through some of the really rough physical stuff in the beginning. My dr. has prescribed me trazadone to sleep but i DO NOT WANT MORE HARDCORE MEDS. But, i am also aware i need sleep to function and take care of me and my 4 year old. My family has no idea how hard this is, they are like just be tough, tough it out. They have always said these statements to me throughout my years of struggling with depression/anxiety.

    I don’t know what to do to get some sleep. Take more benedryl? Take the dr’s prescription? Try melatonin again (haven’t tried it in a few years)? Get back on lamictal? Does anyone have any wise suggestions? Has anyone been here and done this and can tell me this is normal b/c i feel like its ME that is an insomniac and kinda sad the past week.

    Thanks for this wonderful support board:)

    Did anyone else feel increased energy immediately and insomnia upon coming off of lamictal? The energy has gotten less over the weeks but its still like i have this newfound energy. I am so scared that this is hypomania and i am going to have to be on drugs forever, ugggghhh.

    Like

  34. Brenda

    I was put on Lamictal 6 weeks ago by my PCP. This after being in the hospital for 5 days, the docs there said I was having migraines, this was no migraine. the day after my release I began seeing “firings” in my eyes, sparklers, lethargy, numbness in my face, lips and tingling in my tongue. My speech was slurred and I was in a wheelchair. My PCP decided that neurons were firing crazy in my head/seizures so he put me on Lamictal, got up to 100 mg. I still cannot focus well with my left eye so I went to a Neuro opthalmologist. He said everyone has speculated about my condition up to this point and he wanted to get to the bottom of it. He sounded so convincing. He told me that no one is sure I am having seizurs so stop taking the Lamictal and Klonopin and have an EEG with photic stimulation. I have been drug free 2 days. I slept like a baby the first night and woke up with an adrenaline rush and took a walk, on the way home I felt like I was trudging through knee deep water. Last night I felt I was detoxing. Hot, cold, hot cold. Dreaming weird dreams, shaking, cramps or seizures, I’m not sure. I have to wait until next week now to get my EEG and this is killing me. Thanks for all the support you have given, as you can see, tapering has to be much better than going cold turkey. I guess this doc is a quack as well!

    Like

  35. Mathew

    I stopped a generic Lamictal about 5 weeks ago. I’ve taken it for about a year and at one point I was taking 300mg. It killed my short term memory and concentration. I dropped to 150 mg and felt disoriented so I increased the dose on my own as I wasn’t able to function at all for that weekend. I felt better at 225 mg. I used this summer break to discontinue the med as I didn’t feel the stable mood I had felt on 300 despite the side effects. I went down 75 mg a week, but at zero I felt incredibly confused, fever, migraines, mild and occasional twitching, sensory problems, ect, ect. I immediately told my doctor and he said it was withdrawal seen in some people taking antidepressants, but I’m not on antidepressants. He hadn’t had or heard of any users experiencing it with Lamictal. Even so he compared it to being on LSD and after reading many descriptions this really does feel like a “bad trip”. I have been taking ativan for the panic. I was strangely unemotional aside from fear until about 2 days ago. I began feeling intense emotions. Good and bad. I felt that I was making big improvements but now feel like I’m getting worse. The major problem has to do with senses. Trails behind moving objects, brighter lights, sensitivity to flashing lights(sometimes painful), noticeably increased intensity of colors and sounds, sounds have an echoed or tunnel quality. It’s an overall dreamlike feeling and I cant quite describe it accurately. I do know I can’t drive or carry on with normal living. School starts in august and I have to get better before then. Not only is it exhausting to deal with but I cant imagine carrying on normal responsibility while feeling so impaired and uncoordinated.

    Can anyone please help me? I’m going to ask my parents to see a neurologist because my Ativan only suppresses my panic, the dreamlike feeling has to stop before I can focus on emotions and reality in general. I’m afraid I’m going to have to restart the drug which I’m terrified of, but I can’t comprehend being impaired permanently.

    Any advice is welcomed. Diet, lifestyle changes, ideas of what is happening from a scientific stand point…anything. Thanks and I’m sorry for anyone that has to experience these things. These meds are too dangerous and the worst part is the severity isn’t explained beforehand. Or at least nothing was explained to me aside from the rash.

    Like

  36. I have been recovering from Paxil withdrawal syndrome for 4.5 years. After what seemed like slow but steady improvement in many awful symptoms, two years ago my recovery took a turn for the worse and I completely lost the ability to sleep.

    I was very fortunate in finding a doctor here in San Francisco who recognizes and treats damage from psychiatric drug. Basically, antidepressant withdrawal syndrome causes hyper-reactivity of the glutamatergic system, producing symptoms of hyper-arousal, anxiety, panic, depression, etc. He uses Lamictal to reduce glutamatergic activity.

    (Details of my treatment are in http://paxilprogress.org/forums/showthread.php?p=571032#post571032 , read posts since January 2008.)

    Because Paxil withdrawal syndrome made me hypersensitive to neuroactive drugs, I gradually worked up to 1.07mg Lamictal and took that for about a year and a half, partially as a compounded liquid. (I was also taking 9mg Lyrica at night to initiate sleep, minute amounts of doxazosin to reduce adrenaline, and 2mg melatonin at sundown every night.)

    Now, in the last leg of my recovery, my body is rejecting the drugs. I stopped taking Lyrica with no problem. Tapering Lamictal has proven to be difficult. Too high a level in my body is keeping me awake. I have found I need to drop by less than .05mg at a time or I get symptoms of extreme irritability, weepiness, depression, and insomnia. These, I believe, are symptoms of glutamatergic rebound.

    I am now down to .52mg Lamictal. I am dropping by a few milligrams per day to stay ahead of the insomnia. This doesn’t always work, but I am avoiding the more severe withdrawal symptoms.

    Like

  37. Also, in recovering from psychiatric drug withdrawal, I want to recommend taking fsh oil. Fish oil aids neurological function in general. Make sure you are taking enough — at least 1000mg EPA per day. This is usually 4-6 capsules. Take with 400IU vit E per day, preferably mixed tocopherols. The vit E helps the fish oil to work.

    As in anything, try a small amount of fish oil first. Withdrawal makes our systems hypersensitive. Few people are hypersensitive to fish oil, but it can happen.

    Like

  38. Courtney

    I really wish I had known about this before or I would have been more vigilant. I have been basically in pure hell, which looks like it won’t be ending soon. I knew I was getting low on medication, but, as my very recently made ex-boyfriend was the one who would bring me my medication, I did not realize I only had 2 days of medication left on Friday. I haven’t had any of my medications since my last dose Saturday because my pharmacy is closed over the weekend, and I feel like I am going completely insane. I am on 400 mg of Lamictal, along with 5 other medications. My mood has become completely unpredictable, I am snapping at every thing going on around me, I feel as if I am not in my body, I start crying at everything then feel numb, I’ve become completely paranoid and was convinced for an hour yesterday that there was someone in my apartment and became obsessed with locking every door to my living room and making sure not even an inch was showing through the curtains because I started hallucinating that there was someone on my patio looking in. I can’t eat or sleep (every time I try to at least nap I start screaming and shaking until it wakes me up, and I’m drenched in sweat, I’m literally not even tired because I’m more afraid of sleeping). They told me they would have all my medication today but then called me late yesterday evening to tell me they won’t have it until tomorrow. I don’t even have the energy to call around to pharmacies in the area to see if they carry all my medications in stock so I can get them immediately and I’m so afraid to talk to other people that I can’t imagine calling so many places. I can’t trust my own thoughts, to make sure I’m ok I’ve been staying in my living room, barely even noticing the tv is on. I can’t afford to go to the hospital right now, so I just have to suffer until I can get my medication. This is an absolute horror story for anyone who is thinking about going cold turkey

    Like

  39. Jeffrey

    Hi
    This information is great! I have been on 100 milligrams of lamictal (for bi-polar symptoms) for a couple years. I want off. About ten days ago I went down to 50. That is when the insomnia began. Then 4 days ago I decided to go cold turkey. I am irritable. The first couple days i was so depressed that suicide sounded good (ideation only, not even close to doing the dirty deed). I get real shaky inside and low energy. I have snapped at my wife and daughter. I feel like I am in a dream state. However, the symptoms seem a little better than they did the first couple days. I don’t feel that I am in danger of any kind of seizure or anything. But, THIS IS NOT VERY FUN!
    My question is: If I decide to bite the bullet, how long will these symptoms last? If they were even, say 50% less severe, that would be much more tolerable. Is there anyone who has all the way come off this drug? What am I looking at here?
    I mean, when I read this and other blogs it seems like nobody mentions when the withdrawals end. If I knew say in three weeks I would be better, I could grit my teeth but …?
    Any help would be greatly appreciated.
    Thanks so much.
    Jeff

    Like

  40. Jeffrey

    Thanks for the advice and yes I am going to come off this – that is not debatable. Still greatly appreciated. I am taking it again and yes you are very wonderful and beyond knowledgeable. Let me get this right, because even after reading all the back and forth stuff, it is not clear. Are you saying I could die from quitting after taking 25 mg? Or are you suggesting to stay on 25 for a long time then quit, or are you suggesting to cut the 25 in half and then quit . . . and then I won’t die. And the second question is how long after you finally quit do you feel like crap? And is there still a possibility of death? And has anyone actually reached that point of being completely off this crap and done with the withdrawals?

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  41. Jeffrey

    I have a couple questions for Matthew. First of all, I sincerely hope you are feeling better now.
    You said you went down 75 each week – was this rough? What dosage did you go down to
    before you actually quit? And how were you feeling at that last dosage before you quit?
    And, just to clarify, are you saying that you quit completely 5 weeks ago and you are still feeling really bad?
    Thanks so much for the info.
    Jeff

    Like

  42. Jeffrey

    Giannakali;
    Thank you. I will get the book and taper more slowly. Do you know if detoxifying fasting or liver cleansing would help the process of withdrawal? I also have an acupuncturist who actually cured me of my, so-called, bi-polar symptoms with a technique called NAET (cant recommend it enough – miraculous – my wife and daughter are also thrilled – check it out with a google search), and this acupuncturist told me she can help me through the withdrawals. Do you have any experience or heard of anyone using acupuncture? I already supplement with all the omegas, B12, multi B’s, etc. They have been a God send while treating my symptoms etc. And of course exercise.
    Also, do you think eating better etc makes for less extreme withdrawals?
    Anyway, can’t wait to read the recommended book – I will get off this poison!
    So, one more question – it seems from these entries that when going down real slow you still get the lousy feelings? Am i wrong – in other words, why not bite the bullet after 25 mg’s rather than taking it down to say 2.5 mg’s, if you get the same foul reaction. Or, am I mistaken (hope I am), and is it extremely easier to do it the very prolonged way?
    Again thank you.
    Jeff

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