Monday, May 19, 2008

Bipolar Medication (3): Last Post in Series for Now

I had intended to spend the week finishing our discussion on bipolar medication, but quite honestly I'm tired of writing about it because it's a downer for me. So...I'd genuinely like to thank everyone who participated in our discussion. For the first time since I've been writing this blog, I feel I truly was able to host a meaningful discussion on bipolar medication. Perhaps some of you will continue the discussion in your blogs, and let me off the hook.

To finish my own story, the bottom line for me was that lithium didn't work and neither did any of the other 25 drugs I ended up taking. Eventually Zoloft "pooped out," and I had to survive horrific depressions with medications that made me feel physically worse, and emotionally erratic.

I changed psychiatrists four times within a decade. A big mucky-muck psychiatrist, who is also a professor of psychiatry at a major university, wouldn't take me as a patient (because I'm not a psychiatrist, a famous person, or a celebrity, which was his clientele) but he did consult on my case because I had become a bipolar II medication-resistant rapid cycler, which is considered the most difficult cohort within the bipolar community. And even he kept on saying, "Everything your psychiatrists are doing is right."

But, it wasn't right for me. It only would have been right if I had been a guinea pig in a lab. What infuriated me then--and now--was when I was at my lowest ebb and had absolutely no hope left, the only suggestions my psychiatrist made were, "You can do ECT, or you can be hospitalized, and you should certainly start therapy with me."

I nixed the last idea because I knew it wouldn't make me feel better to pay him double his current fee so that I could tell him (in therapy) how angry I was with him for prescribing drugs that made me feel worse. Besides, I'd already been in therapy with someone else who never diagnosed this illness or clinical depression despite classic symptoms.

I knew that ECT might "cure" the depression I was in, but it wouldn't help the next one on the horizon. And, for me, hospitalization was not an option. I'm not opposed to it on principle, but it wouldn't have made me feel better.
I did say to one of my psychiatrists, "If I'm depressed now, why would you think I'd find it uplifting to go to a mental hospital where people represent a spectrum of illnesses that scare me? At least at home, I'm with people who love me."
What I can say is this: For 25 years, I was depressed a total of 85 days a year. And for much of that time, the depressions (which remained undiagnosed) weren't bad enough to stop me from working every day, and living a "normal" life. However, I knew I was feeling down compared to how I felt the rest of the year, and the depressions had become more severe.

The first year I began taking medication, I was sick for 365 days, and so it went for six years, which means 2,190 days. Then I started taking Adderall, a stimulant (a controversial choice for someone who is bipolar), which is the only medication that can relieve my depressions. But I didn't realize how erratic it made my behavior, or how much it intensified the highs and lows until 2003, ten years after I started the medication merry go-round.

When I think of the depth and breadth of side effects (not on Adderall, but on all the other medications), I am amazed and grateful I survived. On Lithium, I had such terrible headaches I could barely stand the physical pain. When they finally began to dissipate, I started seeing floaters (in my eyes) and worried I was going blind. On Depakote, I felt like I had a low-grade fever all the time. On Wellbutrin (they used to prescribe it at much higher dosages than they currently do), I lost a third of my hair, and when it finally came back it was curly and gray. It took three years to grow a new head of hair, which was straight and brown again.

On other drugs, I experienced cognitive memory loss where I didn't just forget words, but entire paragraphs. I had hand tremors that were so terrible, I figured the only job I could qualify for was conducting an orchestra. I had diarrhea and constipation for so long that I figured I'd never have regular bowel movements again. It seemed like I spent years vomiting multiple times a day--and in truth I did. And I gained weight, which I'm just now beginning to lose because I've begun a regular exercise program.

I could go on and on, but I won't. I've written about it in my eBook, Bipolar Depression Unplugged: A Survivor Speaks Out. For me, all of this represents a past I'd like to forget. When P.J. who was recently diagnosed, wrote a comment asking what to do so that she doesn't have to experience what some of the rest of us have, other than giving her resources, I truly didn't know what to say.

The truth is that I still take Adderall when a depression hits. And I still take Ativan at night to sleep when I'm taking the Adderall in the morning. At one point I was taking 80 milligrams, which is a very high dosage, and it still wasn't working. Now, I take 10 milligrams, and it's usually effective; at most I take 20 milligrams. Adderall doesn't make me "happy," but it enables me to get out of bed. My strength is that I won't give up--although I would be less than honest unless I admit there have been times when surviving has been a huge struggle.

None of the alternative remedies work for me either, and I've taken tons of it. I've also seen a doctor of Acupuncture (13 sessions), a doctor of naturopathy (12 sessions), and a holistic psychiatrist, among others.

For those of you who are recently diagnosed, you'll find that every person you talk with will have a different take on this. I wish there was an easy answer, but I'm not sure there is. What I do know is this, and I can only speak for myself.

I believe that whether or not bipolar disorder is biochemical in nature (and to me that's not been proven beyond a doubt), whatever treatments you pursue will only work if you resolve the underlying issues that made you ill, and if you figure out a way to deal with the stress in your life.

No matter what others say, I don't believe this illness happens in a vacuum. In my case, I don't handle stress well, and never have, although I'm working on it. I used to have difficulties dealing with life transitions, and I'm working on that. It took me a long time to find my life's work, and until I did, I changed careers a lot, and that made me unhappy.

Despite years of therapy in which my therapist tried to turn me into someone who views life in shades of gray, I still don't. But, I finally realized I'm not a "gray" person, and it's okay. I've got very strong morals and values, and they are sometimes at odds with the popular culture. And that's okay too.

What I've been doing for years--mostly on my own, but now with the help of people who read this blog and share their experiences--is working hard to figure out:
  • who I am and how to once again feel proud of my accomplishments (as I define them);
  • what stresses me out, and how to stop allowing it to do so;
  • what deeply matters to me, and how to write about it so that I feel I am making a difference;
  • how to deal with disappointment so that I don't view it as a setback, but rather as an event to redirect my path (I want to credit Bernie Siegel's book 101 Exercises for the Soul for the words to explain my goal);
  • how to change my neural pathways so that I don't repeat life patterns that used to paralyze me,

  • and how to move beyond the label of "bipolarity" so that the symptoms and behavior I exhibit are only a part of who I am rather than my defining characteristics.
I have learned that it's not what happens to you in life that matters, it's how you deal with what happens. I spent years trying to regain wellness despite the fact that my psychiatrists didn't believe I had a chance. "It's a spectrum illness," they said. "At best you can maintain it."

I disagree. I believe bipolarity is neither better nor worse than cancer, diabetes, or high blood pressure--all of which can be "cured." My mission is to "cure myself" so that I can help others achieve wellness. And, for me, that's truly an important life mission.

P.S. I've changed the Comments section so that I no longer accept anonymous comments. If you have trouble leaving a comment, I'll find that out tomorrow, and try to fix it. If you spend a lot of time writing your comment and worry about losing it, then write it in WORD, and copy it to comments.

18 comments:

Gianna said...

and how to move beyond the label of "bipolarity" so that the symptoms and behavior I exhibit are only a part of who I am rather than my defining characteristics.

frankly, I'm starting to think I have to stop reading blogs that glorify and/or obsess on the label...

I don't believe I am my symptoms and I'm constantly made depressed reading peoples hopeless, brainwashed belief systems. I want to be a force in changing that kind of thinking and it's not helpful to have it shoved in my face all the time...on the other hand there are a lot of people I care about that feel that way about themselves...

And like for you, this discussion on your blog made me depressed...sometimes I think I should leave the whole scene, but then it does feel like a vocation that I help people reinterpret their lives if they feel so inclined.

I really don't know what the answer is for me.

In any case I'm glad you're changing gears.

Jazz said...

Your goals sound a lot like mine, Susan! Good luck to us both.

Bipolar Wellness Writer said...

Dear Gianna,
I agree and for the most part, I don't read blogs that either glorify the label or are negative. I strongly believe that our thoughts effect our emotions.

And our belief system affects our ability to get well. If we think of ourselves as mentally ill, broken, crazy, unstable, chaotic (these are just a few words used in random bipolar blog titles), then I believe it's almost impossible to move beyond "the words" and seek wellness.

Actually, there's supporting research about this, but I have to look through my files to find it.

Susan

Bipolar Wellness Writer said...

Thanks Jazz! I agree. "Good luck to us both," and to others who truly want to find wellness rather than spending the rest of their lives dwelling on illness."

Susan

naturalgal said...

Hi Susan,
I have a feeling you left the part about difficulty leaving comments because of me.

I don't know if it was I, not knowing what I was doing or the glitch in the Internet.

I think how a person labels himself/herself is paramount to recovery. I think the absolute most important ingredients a person can have are hope, faith and support. Hope that you will get better, faith that it can happen, and support from others who love and respect you. Those three things will change your attitude and make life fun again.

Bipolar Wellness Writer said...

Dear Naturalgal,
I did change my comments section to exclude anonymous comments, but I also wanted to make sure that if you left a comment, you wouldn't lose it.

Yes, I definitely agree with what you've written, and I can't say it any better! If people truly embrace your advice, I believe it can change their lives.

Susan

duanesherry said...

Susan,

We're on the same page.

Thank you,

Duane

Bipolar Wellness Writer said...

Thank you Duane!

Syd said...

Dear Susan,

This was a very interesting thread and I think you shared some very enlightening perspetives. I applaud your strength and courage and your leadership in the journey towards wellness.

Coco said...

Thanks for sharing the rest of your meds story Susan. I didn't find that this discussion brought me down at all... rather the contrary, as I'm trying to seek solutions for myself. Not everyone is in the same place, and while I don't think it's healthy to focus soley on negatives, I think what some might see as dwelling on things, actually helps others (like me) sort things through and find their way. So I want to saythanks for having this discussion even though it wasn't all that uplifting for you.

Bipolar Wellness Writer said...

Thanks Syd.

Bipolar Wellness Writer said...

Dear Coco,
Thanks for your comment. I genuinely appreciate it, and I'm glad this discussion helped you. I guess what I feel is that I've already "been there and done this," and my experience with medication was terribly painful. I also feel that I've needlessly lost years of my life.

What's difficult is that having experienced this, I wish I could provide really good advice or say, "Do this or that because I know it works."

The truth is that there is not a lot of data about what's works and what doesn't. In my estimation, there aren't a lot of success stories. And since people truly come to this illness from different places and have different issues, there isn't one answer for everyone.

Still, I am glad it helped you, and hopefully others as well.

Susan

P.J. said...

I really appreciate this post. I understand that it was difficult for you to write, but it has helped me. It's quite obvious that there's no one thing that works for everyone, and that we truly are unique.

It's because of people like you, Susan, that I find strength and wisdom to question things and not accept it "because that's the way it is." It's the depth of your story that helps me remember that even when things are very hard, I will make it through.

I'm also finding that nipping the stress factor as soon as it begins to appear makes a big difference. That's a wellness choice, medicated or not.

Thanks, Susan!

Bipolar Wellness Writer said...

Dear P.J.,
Thanks for letting me know. Actually, you were the person I was most concerned about. When you're newly diagnosed and you have a treatment program you believe in--and it's making you feel better--then sometimes it's very confusing to find someone else who says, "This didn't work for me."

I just didn't want you to feel overwhelmed or confused. And I did want you to realize that different treatment options work for different people.

But...stress seems to be a problem for everyone who's bipolar, so it's good you're dealing with it!

Susan

Coco said...

I also just want to say Susan, that I recognize in you such a strong desire to genuinely help & guide people, and how frustrating it must be sometimes to not be able to do that to the degree you desire, because of the complicated nature of all this. You're incredibly responsible to realize your impact on people, and not wanting to influence them the wrong way - for them. This was bad writing, but I hope my point came across. :)

Bipolar Wellness Writer said...

Dear Coco,
What an incredibly sweet and kind comment! Yes, I do want to help people and perhaps it's partially because there was no one to help me. At the time, most of what was available was either so downbeat that I stopped reading it, or so ridiculously "upbeat" that it wasn't realistic.

Some online mental health organizations say that 80% of their members take medication and are fine, and that runs counter to all of my research.

Or people would say they were fine, but then they would write about some other terrible physical problems that were caused by the medication--and to me--that wasn't "fine."

But most of all, they seemed to feel it was all about medication or alternatives, and had nothing to do with stress, behavior, personality, and a host of other factors I have since learned are very important.

Not to belabor it, but I genuinely appreciate your comment!

Susan

samanthagms said...

"On Wellbutrin (they used to prescribe it at much higher dosages than they currently do), I lost a third of my hair, and when it finally came back it was curly and gray. It took three years to grow a new head of hair, which was straight and brown again."

I find it frustrating that even though there are so many of us who have experienced hair loss due to medications, some doctors still refuse to admit that this is a side effect of several antidepressants!

I agree with you that if you solely identify yourself as one of the above mentioned labels, it's impossible to seek wellness. Since I began reading your blog and a few others, I try to be more conscious of this.

BTW: I usually post under Perennial Sam - I hope I got my livejournal ID right...I don't use it as often as my other blog.

Bipolar Wellness Writer said...

Samantha,
It is unbelievable that doctors don't know the side effects. At the time I was taking all this medication, my doctor always said, no matter what I complained about, "I've never heard about that side effect before."

This was before the advent of the Internet, so I had no ability to go online and point out that hundreds of people were experiencing the same thing. Nor did I know that others were in the same boat, so it made me feel even worse.

Thank God for the Internet!

Susan