April 18, 2006

Me, To Take Meds Or Not To Take Meds?

So help me figure something out. As I posted a way back, my psychiatrist has used the term “recovered” to describe my current state. I am dubious of such terms, as they imply the completion of a journey and I am never quite sure when a journey is truly over and another one is beginning. But I feel damn good these days—not in a euphoric sense, but in a very level and stable way. Aside from a couple of short-lived blips, I have been in great shape psychologically since last August when I kicked Geodon to the curb. I know how to manage the blippy episodes and have never found a med or combination of meds that prevent them 100 percent. Hell, not even 80 percent.

So my doctor and I are considering taking me off meds altogether—a rare day in psychiatry! He broached the possibility with me six weeks ago and, ever since, I have been turning the possibility over in my mind.

Can I make a go of it without meds? Or is this a foolish experiment? And: If I do well without meds, am I still bipolar? And would that make me the poster child for the psychopharmacological revolution, or not?

After all, I’ve taken 18 of the 30 psych meds available for bipolars over the years and have found almost all of them wanting either in efficacy or in side effects. But for 17 years, I have taken my meds without fail even when they were failing me. I am not exaggerating—even when Prozac and Seroquel were giving me grief, I took them and went to see my doctor and laid it out for him. My one experience without meds came three years ago and lasted for four months. Other than that, it’s been all-psychotropics, all-the-time.

But here I am, doing damn well—and crossing myself as I write that—and wondering what’s next. My feelings are neutral at this point. I am only taking Lamictal these days.

So if it were your life, your body and your soul, what would you do? Let me know soon. My appointment is on Thursday.

And, by the way, who the hell ever said I don’t post positive shit around here?

Posted by Philip Dawdy at April 18, 2006 12:10 AM
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Comments

Philip,
Ask yourself why you started meds in the first place. What came first, symtoms or reactions to meds some doc placed you on, then responded with another med to take care of that reaction? Did you have bipolar symtoms that took you to a doctor? basically, answering that "Am I bipolar?" question. I have a friend who has had major success on Lamictal as a stand alone medication, and says it won't work that way while on Antipsychotics, thus you kicking Geodon out, could be while Lamictal did its deal.
My daughter, who is 18 story for anyone who needs to hear it, to help answer the "should I take meds or not question."
Last May 2005, a smart, honor roll student, was told she was PDD. (Pervasive Developemental Delay)'high functioning autistic, The Bill Gates Asperger's crowd "will love you at Microsoft" since she was doing so well in her Digital Imaging class at school, she was told this release of freedom from 6 years of med taking by one doctor. She was elated! Imagine, taking meds since age 11 and being told you are not bipolar! no more meds! She counted down the days on a caledar to the last pill. She came off of 2 mood stabilizers and 1 antipsychotic. She had rough periods each time a dose was decreased, but it would smooth out and we all thought, OK, just medication withdrawal agitation and feeling crappy, but the light was at the end of the tunnel! when that last pill was taken the angst would be over. The last day of the last pill, (this took all summer)she attended the Humane Society Volunteer picnic, what a great day. She took the last pill and threw out the daily pill container she used for 6 years. Ten days later, while on a ferry trip across to her favorite place, Poulsbo, she wanted a cookie from that great bakery there. I looked over at her, and asked her what she wanted, and she looked confused, lost, and I knew. I asked her if she was okay, she said no, she needed to go to the hospital, "it feels as bad as the first time Mom, like when I was 11". Shit! She drifted away before my eyes, those were the last coherent words. She also said "There goes my trip to Montana." She could feel it coming, on the heavy grip of psychosis that appears to not want to leave her now. She has come home 2 times since Mid-August, both times, still unstable, and this last and most devastating time, was clear that we had all seen her come in and out of lucidity, like an Alzheimers patient, enough where the docs and us thought she was good to go, and wow after being gone since August, we were excited beyond words. She clearly wasn't back. She was home for 11 days and is now back in yet another hospital. I saw her yesterday, and she is now listing names of her pets ,right down to Gerbils we had years ago. It is like her brain short circuited. She is on mega doses of antipsychotics, she has taken ,and trialed at least 20 or more meds herself, and the only one not ever offered to her is Lamictal. She was excited to go off of her meds, she thought her future was so bright, she was entering her Senior year in high school, wouldnt have a late start accomodation anymore, and could "be like everyone else." She made the decision on her own, offered by the docs and discussed with us, her parents, I read to her things about withdrawals, etc and asked her if she wanted to go for it (removal of meds)and she made the choice on her own. Now she cannot sign papers, she looks lost and confused, or is agitated and says wild stories, all mixed in with pet names, etc, short circuited. What happened? did she need meds or not? is this tardive (permanent)psychosis from being on and not being able to go off of Zyprexa after 6 years? no one knows. What is she ? no one knows. No one, meaning 4 psych hospitals, and about 7 psychiatrists, all now call her complex.
So, Philip. You are asking the question many people ask. Am I better because I am better? or is it my meds making me feel better? Am I bipolar or not? Oh we were prepared for my daughter to become that poster child for no meds needed she did so well the first few months, her doc called it "remarkable". She read 5 books a week, was more social, it was like she was handed over a new life. Then she crashed. She crashed big, and fast. My personal opinion: stay on the Lamictal. One way to look at it: you feel great, you look great, youre working, functioning, and Lamictal isnt hurting? right? stay on it, and basically be safer than sorry. Shit, I don't want to see you go down for the count. I can only say this, because my wonderful, happy, funny and talented daughter is sitting in a psych hospital, and doesnt speak. She was diagnosed bipolar from the beginning. Now where will this end for her. She has missed every Holiday , including her 18th birthday, since August 2005, she never got to that goal of school "like everyone else" off meds and free. One night in a hospital, she looked at me, and said "I'm still a free spirit, aren't I Mom?". "Yes, you are.". Well I just had to drive past her favorite Wild Horses National Monument by the Gorge, and I drove alone. I looked up at the horse statues, tall on that bluff, and said outloud, "yes, you are still a free spirit.". I want her back. I never knew how bad coming off of meds could be....once in a while, she looks at me and says "med wash". I say back, "looks like it didnt work." She is so smart, read the fine print online re: side effects of all of her meds, etc. Life has risks. We take chances, and the choice is yours. I wonder instead of being a poster guy for being off meds, why not be who you are and show 'em how great life can be managed on meds? That is what the world of Tom Cruise's needs to hear, and hell, you write about it for a living, imagine the endless possibilities. I seriously want to know if you embark on this med free journey, I will be there if you need someone.--Steph

Posted by: Stephany at April 18, 2006 10:25 AM

Try to make a go without it. You have your psychiatrist's phone number. Try life without these drugs. I am on the reverse side of the spectrum, having just been diagnosed Bipolar I on Friday and hate hate hate taking these pills. Try and let us know.

Posted by: Lily at April 18, 2006 12:55 PM

Stay on the Lamactil. It's working. I've been on every kind of psychomed (and ETC for that matter) for over 14 years now. Either nothing worked or I was miserable sick. I've gutted it out on nothing more than 1 mg klonopin at night for many years. Finally, at my suggestion, my shrink tried Ritalin (though the bastard takes credit for it and any other thing that goes right in my world, but that's another rant). It helped...a lot. I won't go off of it no matter how bad the press gets. I've tried meditation, accupuncture, massage, supplements, yoga and ayerveda, exercise, journaling and every form of alternative health care imaginable in addition to traditional psychotherapy and meds. If something works...stick with it. It's too hard to pick up the pieces again. And sometimes you can never get back to the point you were when things were good once things get bad again. And I've lived long enough to know that things get bad again. How's that for negative!!! Sorry. You ain't broke darling, you just need your medicine.

Posted by: Ani at April 18, 2006 01:19 PM

Ani--You describe what my daughter did, while trying to hang on off of meds...the aromatherapy, organic juice bar drinks, oxygen bar (yes we did), walking, yoga, journaling, painting, one night we even burned Sweet Grass bundles in the firepit outside, that was supposed to cleanse the body and spirit. Sounds desparate now. Even the mega dosing vitamins. All of it and I was even looking into the acupuncture. 8 months later and back on meds, the most docs can tell us, is go off once, maybe can come back, go off again, and they cant say if she will come back, that it takes longer, and I had no idea 8 months could have passed by now. I can barely live with the thought she has missed almost a year of her life, because she went off of meds. (and I was all for the med wash).

Posted by: Stephany at April 18, 2006 03:07 PM

This thought provoking question just needs a lot of attention here.Thank you for posing it, and sharing.It applies to so many people, and many do not ever seek the advice of their doctors.Some people believe doctors are being reckless in even offering the idea of med removal. We experienced several doctors being distraught and alarmed at the med removal idea given to us by the one doctor.Many eyebrows were raised at who would offer such a risk, and then knowing my daughter's outcome, fuels that fire even more, to the point where at least 4 doctors freaked out re: the one who said no meds.(one Chief of Staff refused to call the doctor for any case history, and when I point blank asked him if he thought this was "bad medicine"? he said "No comment." Doesn't matter why the doc said no meds, just saying it scared the hell out of most every doc in the last 4 hospitals my daughter has been to, and I haven't found one that agreed with his decision.I totally believe in risk taking,and believed in this doctor that said no meds were needed, (he actually said to me "you will have to carry the torch on this one".) BUT now I wonder, if the doctor had not brought up the idea, glossed over with medical approval, would we have persued this with my daughter on our own? I am now thinking that the answer is NO. Wouldn't have done it without medical approval. So somehow, does medical approval give us that easy way out, stamped with approval by an MD? One doctor in many many doctors, and why did we listen to him? for an easy way out? That old "second opinion" thing? My own thought provoking question to myself is: did I use the doctor's offering of no meds to verify what I suspected all of these years? that maybe meds were not needed or were the root and cause of my daughter's angst? I offer all of my posts as an insight to the reality of this choice, because I have been in this arena of thought a very long time. Tapping into why we did the med removal and how we came to the decision.Her story, is, that her med wash failed.If it had not, would I still be writing the way I am today? what if she did great off of meds? what would I be telling you now? Meds needed or not was a question posed in our house for 6 years. It took 6 years to decide to go with the med removal, and that was only when one doctor out of 4 offered that to my daughter. That doctor opened the door to the idea, the so called resolution of the decision.
I have questions for you, and anyone else reading.
1. Would you have thought about going off of meds if the doctor had not offered you the question?
2. What if someone you loved was asked the question, and wanted your advice? what would you tell them?
3. Would you have done this on your own without doctor approval or discussion?
4. Are you willing to have the excitement of being med free give you a setback?
5. What is the most appealing part of being offered a medication free life?

When riding a winged horse; don't change horses.

Posted by: Stephany at April 19, 2006 08:53 AM

Dawdy,
I would not venture into that world without some nutritional support(E.M.POwer, Evince,customized supplements) a regular contact with a health care provider, and a very slow withdrawal over 6 months to a year. At the slightest hint of a problem remember that staying out of the hospital is more important than proving you can do it without meds. Also, would suggest testing for various risk factors that cause the symptoms of what we call bipolar disorder. Also I would stay away from sugar, MSG, free glutamate (in most of your fruits and veggies) and aspartame for starters.

Dave Moyer

Posted by: Dave Moyer at April 24, 2006 08:46 AM

Moyer, you left out corn. I know people stable at least trying to be, on EmPower, and corn free to the micro-amounts...major dietary micromanagement, and then, it leaves some people still needing the pharmocology.

Posted by: Stephany at April 24, 2006 07:40 PM

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