This post on withdrawal symptoms gets more ongoing hits than any other post on my blog. People are searching. People want to know what to expect. They want to know if what they are going through is normal. They want answers that their doctors aren’t telling them.
I say in that post that I will try to write an update on mood stabilizer withdrawal once I got Breggin’s revised book,Your Drug May Be Your Problem, Revised Edition: How and Why to Stop Taking Psychiatric Medications
I’m sorry to say he does no further enlightening which I think is a damn shame and plain irresponsible on his part. If he’s going to claim expertise in the matter he should know more than I do at this point and it is completely unclear to me that he knows even as much as I do. I’m not trashing his book entirely–it’s still a good place to get some common sense advice, but it doesn’t always go far enough, especially in emphasizing how slow a taper might have to be specifically for people like me who have been on drugs for many years.
That may sound arrogant, but I do have direct and indirect contact with a couple of thousand people through my email groups and boards. I wish I had a way of interviewing hundreds of these people about specific experiences with specific drugs, but I don’t. So I’m stuck with what I’ve picked up here and there on this board and that and thus trying to make some sense of what I’m hearing in such a way as to pass something helpful onto people who read this site.
The only real bit of information I’m going to add today on mood stabilizer discontinuation is my experience with Lamictal withdrawal. I’ve come off of 200 mg of the 400 mg I was on. I did it in three months. It was one of the rougher periods of time I’ve been through since my withdrawal began. When I do the next 200 mg I will go much much slower.
What I experienced was a fatigue so giant it’s hard to express. Someone with severe chronic fatigue would understand. I could not walk for more than five minutes without sitting down. I could not drive. I slept long hours and laid down much of the day. I am not exaggerating. I did not know for certain what was going on but once the withdrawal was over the monstrous fatigue left me.
I still have a less intense fatigue that I’ve had since the beginning of all my withdrawals. And that seems a common problem. But I can drive again and exercise lightly. It seems from what I’ve gathered on the boards and through readers of this blog that this fatigue will pass at some point after the withdrawals are complete.
It seems from what I can tell about Lamictal is that some people do run into this problem, but others have experienced virtually no symptoms whatsover in coming off of it. So take this information for what it’s worth. One persons experience that might help explain someone else’s experience, but certainly not everyone’s.
Again I remind everyone, regardless of what drug you might be withdrawing from–there is no such thing as going too slow. I am currently doing a water titration with Risperdal. I’m cutting down by .0125 mg every couple of weeks. I’m on approximately 1 mg. Early on when I was on 11 mg I could cut down by .5 mg at a time once a week. As I got down to smaller amounts Ive had to go smaller and smaller as well as slower.
I’ve remained essentially stable. But this is only because I’m listening intently to my body. If one cannot do that and rushes the process instability is a real danger.
Patience is not one of my virtues. Perhaps this is what I was placed on this journey for.
Shauna,
I’ve not heard of lamictal causing electrical zapping—that is usually associated with SSRI’s. Have you gone off an SSRI recently?
the dr recently increased my lamictal and i am now on 100mg – my kids had the flu and i had the electriacl zappy feelings thinking it was the mild form of the flu. the zapping comes at night and i take the medicine in the morning. i am wondering if the zapping is a result of the medicine wearing off at night. im scared to stay on it and scared to go off it because of bipolar. the black depressions are not worth it nor the manias since i have no concept of time or concentration. i amlost impusively left my career because of the mood stuff….any suggestions?? Help!
Trisha,
lamictal withdrawals can be really awful. It’s taken me more than a year to get from 400 mg to 125 mg. You can look at the post below to read other stories of people coming off Lamictal…all I can suggest is take your time. And insist to your doctor that you be given time to do it. Decreasing in tiny tiny increments is sometimes necessary. I’m going to be asking my doctor for the childrens chewables next so that I can cut down by 5 mg at a time.
http://bipolarblast.wordpress.com/2007/12/20/lamictal-withdrawal-from-hell/
withdrawal effects from lamictal can be very severe. Some people are lucky and don’t have a problem.
I have been taking lamictal for almost a year for seizures and am having to come off of it. My dr. told me to just stop taking it..i wasnt having any side effects from it..so i didnt understand why i shouldnt taper off. I I have been taking 200mg. twice a day, so i decided to stop one dose a day and oh my god it has been the worst thing ever! I am so glad I didnt stop all together like my dr. said. I have had the worst agonizing migraine everyday all day for the last 4 days…that never goes away. i am taking my migraine meds and tylenol and nothing helps. I have had some shakiness in my body and I guess from the migraines, my ears hurt and even my face will!:) I get sort of dizzy. Its miserable and it makes me re-think of ever going on meds again. Now, i am having some stomach pains and a yucky feeling, is that part of it also?? I am just not use to any of this. Has anyone had severe headaches and stomach probs. before with it? Any other help or advice would be great!
thanks, because I am sufferin 😐 and it seems I’m OCDing more than I usually do… about like everything…
sometimes more harm is done with an intense withdrawal…it’s not about how long it takes…it’s about doing it successfully.
I recommend reading Peter Breggin’s book for detailed instructions on how to withdraw…you have done it dangerously fast.
You can bite the bullet and see what happens but I personally wouldn’t do that….
But do look at the book I recommended above (Joan Larson’s) that can help you feel better in any case…
good luck…
But I’m practically off the Lamictal, isn’t it good to stay off it so I can be off this horrible drug? I’m suffering but it’s like if I can just get off it the withdrawal will go away, won’t it?!
Paul,
If you can get your doctor to listen to you ask him to reinstate you on some Lamictal…you essentially cold turkeyed off. I recommend taking at least a couple of months to come off what you are coming off of (as far as the Lamictal goes) —you should taper in no more than 10% increments of current dose…so if you’re on 75 mg that means 7.5 mg. And then ever smaller increments as you go down. Your symptoms are not surprising and there is nothing you can do but reinstate some of the drug and come off more slowly or stick out the suffering for some indeterminate period. I’ve made a similar mistake with Lamictal in coming off too quickly (even though I’m still on 125mg—I was on 400…in any case I went of 50 mg about two months ago under the supervision of a doctor who didn’t know what he was doing and I’m still having a hard time. I will not reduce further until I am once again functioning normally and right now that looks like it might take a while.
Also you might want to look into diet and nutrition—books that can help you support your body for good mental health are on my “about” page—look at top of this page.
A good book to start with is Depression Free Naturally by Joan Larson…good for any mental health issue…not just depression.
I’m currently going off Lamictal, I was on 125mg at one time and I went down to 50mg on my own like a fool only to go back to my doctor and he put me back up on 75. However I couldn’t stand it anymore, Lamictal wasn’t helping me and I wanted to get off medications *Was also on Invega 6mg* so he put me on Lamictal from 75mg to 25mg for one week then a total discontinuation. Now is anyone still posting here that can help me with the symptoms I deal with? I feel like I’m going mad at times, very insecure, have to sleep in my mother’s room because my depression/ocd/anxiety is so much worse… this is day 12 without my usual meds and day 5 without ANY Lamictal… any help please? My AIM/AOL is PaulotheSpy. please help me.
Thank you Suzy!! It’s great to hear you feel good. After taking a 2 month break from decreasing Lamictal I’m back at it and I never stopped feeling bad. I gotta bite the bullet and get over it. It does seem that with the new doctor I’m seeing who is prescribing different stuff then what I was taking (vitamins and aminos) the intensity of the withdrawal is much less. I’m on day three of my first taper in 2 months. Last time day three was horrific so I’m cautiously optimistic.
Thanks so much for sharing your recovery story. Every time I hear one it helps. I still have to get off the tale end of a Risperdal withdrawal and 3 mg of Klonopin, so success stories keep me going!!
Congrats!!
Just wanted to give an update about my Lamictal withdrawal. After about five weeks of agony I started to feel MUCH better. Two weeks ago I decided to start taking better care of myself, eating more healthy food and taking a lot of vitamins. I read on another website that Lamictal can inhibit your body’s ability to absorb certain nutrients. I don’t know how true that is. All I can tell you is that I feel terrific! I have energy, I can think clearly, I am no longer having dizzy spells, and I don’t miss Lamictal at all. I don’t know if the withdrawal would have stopped sooner if I had started taking the vitamins sooner. I just know that I feel 100% better. The only bad thing is that I’m sleeping a lot more – the way I slept before I took Lamictal. Right after I started taking it two and a half years ago, I didn’t need nearly as much sleep. I was able to get right up out of bed every morning as opposed to laying there wanting to go back to sleep. I now struggle more with laying in bed and being tired in the morning. But that might just be because of my new husband sleeping next to me. 🙂 I hate to leave him. He’s a wonderful man who endured all of this with me. Without his help, I don’t know what I would have done. I definitely couldn’t have gone through that without someone around to take care of me.
Wow, Luann,
You made this comment just as I was posting on my latest adventure—Lamictal withdrawal. I’m so glad it seems to be going more smoothly for you. It’s true that it’s not so bad for everyone.
Anyway, welcome. It’s always nice to know that the info I have here is helpful in any way to anybody.
Using a compounding pharmacy for really small tapers is a brilliant way to go off these drugs if one can afford it. Good for you for figuring out to do that!! Most doctors have no clue that that is an option, or think it’s not necessary to cut down so slowly.
Thanks for sharing this information. I am tapering off Lamictal. I was on 100mg for 8 months and started having weird side effects – electrical jolts waking me from sleep and uncomfortable mouth and jaw clenching muscle spasms. I tapered down to 75mg for two weeks and am now at 50mg. I plan on going slowly and seeing how my body reacts. So far so good.
In contrast I was on Zyprexa a few years back and had to use a special pharmacist to mix a solution that would allow me to taper from 2.5mg down to 0 over an 8 month timeframe. Zyprexa withdrawals threw me into a total anxious mood. I couldn’t eat, sleep, or be in a business meeting without having massive panic attacks. I’d neve had those prior to tapering off Zyprexa.
I was put on Zyprexa by my family doctor when I told her that I was stressed out at work. I had to go to a psychiatrist to get off of it. These meds are very powerful and not to be taken lightly.
Suzy,
I definitely recommend reinstating the drug. Going cold turkey with lamictal can cause SEIZURE. It’s downright dangerous to do it cold-turkey. You don’t have to reinstate all of it but try half and see if you stabilize in a couple of days. If not reinstate 3/4. Even if you have to reinstate the whole thing you CAN come off of it wisely once you’re stable. Don’t mess around though and take some immediately.
And you will need a doctor who can prescribe while you taper off the drug. Try to find one who will cooperate with you and taper by no more than 10% of current dose at a time. Take at least a week between tapers more if you’re feeling weird.
Educate yourself on how to support your body through diet and nutrition too. Please look at my about page on the top left hand side of this blog. There you will find books written by professionals which I am not.
Suzy,
Don’t know what type of insurance you have, but maybe you could try one of these places for a practitioner –
American Association of Naturopathic Physicians
http://www.naturopath.org
International Society of Orthomolecular Medicine
http://www.orthomed.org
American Academy of Environmental Medicine
http://www.aaeonline.org
American Holistic Medical Association
http://www.holisticmedicine.org
National Association of Nutritional Professionals
http://www.nanp.org
These organizations have search engines – depending on your state, the naturopaths may/may not be able to help – may not be able to ‘prescribe’, but the others are often MD’s and/or DO’s, and should have a license to prescribe a small amount of lamictal to help you taper.
Best of luck,
Stay STRONG,
Duane
Suzy,
You’re right – it’s not your ‘disorder’ coming back – it’s the fallout from getting off the meds cold-turkey.
I made this mistake myself – a long while back.
If it’s not too late, maybe you could find a doctor to help you taper – maybe someone else with more experience in doing it right can help you (I did it wrong).
I wish you the best – you were wise to get off the meds, but may still need help – but, it’s not your ‘disorder’, it’s the withdrawal – you have to continue to know and believe that – most doctors will not tell you the truth – about all of this…..
You’d have to find the right doctor to work with you, and others who have done it right.
Duane
I was on 200mg of Lamictal for two years. Three weeks ago, on November 19, 2007, I went off of them completely, cold turkey. I know this was NOT advisable by anyone, but I have wanted to go off of this drug for a long time and I could not find a doctor who would help me taper off by decreasing my dosage by 10%/week. The doctor who originally prescribed the medication is now deceased. I won’t go too much into the particulars of why I want to go off of the drug. Basically, I don’t think I need it and the only reason I didn’t go off of it earlier was because of the horrible withdrawal symptoms I always experienced when I tried. My husband and I had the week of Thanksgiving off (it was our honeymoon – God bless this wonderful man). We decided that I should just go cold turkey and get all of the withdrawal out of the way, however painful it may be, instead of going through weeks of torture. I knew I could only do it by taking time off of work and having someone to care for me. There were days when I was almost immobile. I was just wondering if anyone out there has experienced Lamictal withdrawal from going off of it cold turkey. I can find very little info on any of the message boards. One post I found said that the symptoms would go away after about a week. It’s been three weeks now and I’m still not feeling right – and no, it’s NOT my “disorder” coming back. I just don’t feel right in my head and I can’t explain it. I definitely am not thinking as clearly as I should be. Will this ever stop???
I love your message board!!!
i still take lamictal and if i miss it one day, i feel absolutely and totally insane. can’t drive, can barely walk.. bad news.
i hate being dependent on it.
Gianna, you just gave me an idea for my next film project! Right now i am interviewing people about their recovery stories, but next I can interview people on their psych drug withdrawal stories. I’ve seen a few video diaries of people coming off these drugs, but I can see how a DVD compiled with these stories could help so many more people. Wow … I am getting excited just thinking about it! How about an interview when I start this project? Actually I’ll start it next month when my friend from MN comes to visit. Her story needs to be told. I would love to interview you, too!
I got the Breggin book years ago and returned it. Like you, I knew so much more just by reading withdrawal accounts on the internet.
With respect to protracted antidepressant withdrawal symptoms, paxilprogress.org has a thread titled “researchers….” with something like 60+ withdrawal accounts (lists of symptoms). See the link below.
Fatigue is a very common symptom. In early withdrawal I distinctly remember spotting some delicious salsa in my fridge. I was hungry and it looked so good. I stared at it for a couple of minutes and just walked away because bending over to pick it up took too much energy. My fatigue has improved but it’s still bad. My energy is pretty low and when I do even light housework for 20-30 minutes I get really tired and have to rest for about an hour.
http://www.paxilprogress.org/forums/showthread.php?t=20079