Hello! / Tapering off lithium / want support!

What a wonderful forum! Hello everyone.

Please forgive me because this is a long post. My name is Dyane and I'm the 42 year-old mother of two little girls, happily married for 14 years. I was diagnosed with bipolar in 2007 just two months postpartum. I have been hospitalized four times, I finally had ECT therapy, I have tried over 15 different drugs for mood disorders and I could obviously go on and on. The only treatments that have worked for me have been lithium and ECT. I grew up with a father who had bipolar as well. As a freelance writer I have interviewed such luminaries as Dr. Kay Redfield Jamison and Dr. Martha Manning.

After an enormous amount of deliberation and research, I decided to taper off lithium. I've taken lithium for 4 years and I currently take 450 mg/day. I was on 900 mg for the past couple years and over the summer I went down to 675 mg/day for a month, then down to 450 mg/day for the past month. I am feeling stable and I am sleeping much better with less anxiety. This is huge progress for me!)

Below is the advice I got from Dr. Liz Miller a couple days ago. She is the highly acclaimed author of "Mood Mapping", a renowned mental health advocate in the U.K., the subject of Stephen Fry's groundbreaking t.v. series "The Secret Life of the Manic Depressive" (on youtube now) She is also highly controversial and incredibly inspiring to me.

Dr. Miller was diagnosed with bipolar and she has been med-free and doing well for over 12 years. Her new blog is at www.drlizmiller.com.

I am seeking a support team with others who have bipolar and are tapering off lithium, if you are interested please PM me. I'd be thrilled to hear from you. I am also extremely interested in finding *success stories* about those who have successfully tapered off lithium. Thanks for reading this and take care!

From Dr. Liz Miller:

Hi Dyane,
Apologies for the slow reply – have been in China, and couldn’t access the website (thanks Google )

This is an article I wrote about coming off medication some time ago
http://bipolarassociation.blogspot.co.u ... ation.html

As far as reducing medication – it is important to get everything else right first. Medication should be the last thing to go, when you sorted out your environment, physical health, relationships, strategies and identity and hence learnt to manage your mood. At that point – who needs pills!!!

For my part, I take care of my diet, exercise lifestyle, relationships and am doing what I love! what more could I ask? I have been off meds for the last twelve years and never been happier or healthier!

Lithium gets in the clockwork! – it seems to work at the level of cell messenger RNA. J Baldessarini did some studies that showed if you stopped lithium suddenly – 85% had a further episode within 2-3 years, compared to 30% of a control group who reduced their dose more slowly over 6 weeks. It is interesting the long lasting effects of lithium. “Effects of the Rate of Discontinuing Lithium Mainte- nance Treatment in Bipolar Disorders” RJ Baldessarini, Journal of Clinical Psychiatry 57:441-8, 1996

Many people have successfully come off lithium. My view is that reducing lithium needs to be done very slowly. Taking it down by as little as 100mg a month depending on how sensitive you are to its effects.

Ask your psychiatrist what he would do if your kidneys failed? You are asking to do whatever that might be, before your kidneys fail – so that you don’t have to go through dialysis etc. A cardinal sign of impending kidney failure is getting up in the night to pass urine, because your kidneys are losing their ability to concentrate urine. If this is the case for you, you certainly must come off lithium.

In the meantime, concentrate on a healthy life and take your time to make changes!
The Icarus project is a great website and you may find this article helpful

http://www.theicarusproject.net/downloa ... ePrint.pdf

Best wishes

Dr Liz

Relax. This forum averages 1 reply to 50 views for new members.

I'm afraid there's no support to offer except to advise that you see your Dr. I am a person who can do well without medication for periods of time. However, I go to my medicine management appointments with my Dr. even if I'm not on meds, I always have starter packs and instructions for getting back on meds when I'm off of them, and I stay in touch with my Dr. I call in with the onset of mild symptoms and reaffirm my medication plan.

Yes, a person with bipolar disorder can be healthy off medication. It takes work. A lot of work, major life changes. It can take years to get to that point. For me it took 3 years. For happy bill, the other forum moderator, it took 4 years. It's always tentative as this is a chronic illness with no cure. Symptoms may return at an unmanagaeable level and medication may be required in the future.

I spent this summer off of medications, but opted to go back on one medication during winter because of my seasonal mood patterns. I plan to get help for my Dr. to come off of it in spring.

Thank you to tortoise 11, our moderator, and also to kovertkatie for your kind words of wisdom today - sorry to get agro, tortoise 11 - I think I've been cruising WAY too many mental health forums (i.e. Icarus Project etc. ) and I get dejected from no replies, as you can tell. My Mom has borderline personality disorder and I'm sorry that you have to deal with that, and I hope you are doing well with all my heart. I would prefer a live support group but that won't work for various reasons - I actually founded our local DBSA (Depression & Bipolar Support Alliance) chapter here that is still going strong, but I am no longer involved with them...I really appreciate what you both wrote here - it means a lot to me. More than you know.

Yes, kovertkatie, I am doing my homework as much as I can, anyways, and sadly, my psychiatrist is not aware of my decision. My therapist, who I see every week, knows everything, and she is there for me - it's definitely not an ideal situation but we have safeguards put into place and a plan of action should things go awry. You're probably wondering why I don't see another psychiatrist, but I can't for various reasons...he's a good guy, but frankly, he has some major problems that I have come to realize, and I no longer trust his judgement about my momentous decision. He has been put on probation by our Medical Board for prescribing patients to many meds and not charting accurately. :( I am also keeping a meticulous journal as suggested by Dr. Liz Miller in her book "Mood Mapping" and I'm very organized about this whole enchilada. Thanks again for what you wrote about keeping you updated! That makes me smile...

Like I mentioned, I'm on a quest to find others who have successfully tapered off lithium and thought I may find people here who have been through it or currently going through it. That's the primary reason I joined this forum. Miraculously, I've been feeling really great ever since I started tapering -- not hypomanic, just great, and I apologize for my pesky attitude. I'm glad to be here. It's wonderful to get replies from you on the same day I post, compared to all the other sites I joined recently - this is the best site so far for positive support! So thank you and I look forward to checking back in here and making some connections....take care!!!

I'm glad you have someone (your therapist) who can evaluate your mood periodically. Moods have a way of creeping up and screwing with our judgement before we notice symptoms. :/

Exercise is wonderful for regulating sleep and controlling mood. I hope to get back to working out soon. I really have no excuses since I *can* work out at home. I just don't like to. I haven't renewed my gym membership for a while.

I'm glad you have safeguards in place.

Hi there everyone. This is a follow-up to what "Muskingum" wrote - I am Muskingum/ Dyane Leshin-Harwood. I had closed my account here and I had to re-open this one.

Unfortunately things did not work out for my lithium tapering experiment. As I approached being 100% med-free, I relapsed in which I became acutely manic and then I went into the opposite direction and was suicidal. I had to be hospitalized for 3 weeks in the summer of 2013, and elected for bilateral ECT. To say this was all a nightmare is putting it lightly. I'll never get those weeks back with my young children. I'll be paying off hospital bills until I meet my maker, as my health insurance sucks.

I now take 900 mg. lithium, an MAOI called Parnate (which worked in combination to finally alleviate my medication-resistant bipolar depression) and Seroquel for sleep. I work out almost every day and eat as well as I can.

As a freelance writer for the past 17 years, I couldn't give up my dream to complete my book which was in progress when I relapsed. "Birth of a New Brain - Healing from Postpartum Bipolar" is halfway complete, and I'm a contributor to Stigmama.com, a great site about mothers, mental illness/wellness & stigma. I blog at proudlybipolar.wordpress.com

If I could do it over again, I would not have tried this experiment. It works for some people, but I paid too high a price and I could never in good conscience advise anyone to taper off lithium.

take care,
Dyane

i have been mostly med free since november and never felt better. i had a horriable experience after 6 yrs on zoloft and then put on too high a dose of prozac. besides which i developed an allergy to it. so i decided to try med free. i use a low dose of st jons wort as needed and take buspar also as needed only. sleeping great too. when you start having sleep issues its time to worry.

Hi everyone. I'm new to this public forum stuff but I would love any tips as I am about to lower and soon get off my lithium as I can't handle my speech problems and not being able to say words.. I work in a call centre which makes this very difficult for me.. I do like the fact it helps me keep stable with my mood but the side effects really get to me. I would love any info or tips on how to tackle this. I do have lots of support but I hate drowning everyone with my problems all the time.

Thanks everyone.. all the info i have seen has helped with my decision.

xx

I do only take it at night and have done for the last how ever long. I'm fine with not taking it I just don't want to get any nasty side effects from dropping it or go into any manic states as it is my mood stabilizer.


Thanks for your tips thou.. it does make me like a zombie, i want to be on something else or nothing.

i agree you may need to replace it with something else. being manic is no fun.