A response to questions ‘on bipolar’ (dealing with meds and doctors)


I have been asked, in comments, a number of things about bipolar, especially about particulars from those who care about people who either have it or appear to have it.  This was my answer to one of those questions, and it’s rather long.  I’ll try to go through the comments and collect the questions and do some posts to answer them as well.

The comment:

I want to thank you for this post. My sister was diagnosed with having bipolar four years ago. I was so resistant with believing such diagnosis because bipolar is not something that just arises out of no where. Yes, she abused drugs and alcohol for ten plus years prior to her diagnosis. Meth was her drug of choice for years and with any drug, tolerance rises. She began hallucinating one day in a grocery store which seen her first involuntary hospitalization. At first, the doctors diagnosed her as schizophrenic, but as therapy progressed forward, they changed the diagnosis to bipolar. Her personality does match what you describe here and I never really understood what went on inside her. This definitely offers me insight and I am grateful towards your candid honesty here. I feel a bit more connected with her now and I think I can understand her better during her “manic” moments. I only wish she would stay on her medications. I don’t understand why she continues to choose to refrain from taking these medications when there is a solid pattern of how much it helps. Do you find it difficult to take your medications on a consistent basis? How does the medication affect you? She describes it as she feels nothing at all. A walking, rational zombie that has no real connection with anything and she says she hates that aspect of the medication. They help with maintaining a certain balance emotionally, apathy. Is the same true for you or does this mean she needs to readjust her meds? I know these are rather pointed, personal questions so you really do not need to answer them if you feel them to be too personal. I would really like to understand a bit more about this condition that seems to be ruining my sister’s life. Again, I thank you for being so open about this!

My response:

I have actually considered writing a post about medication,but I fear that it may actually “turn people off” to taking it as they are supposed to. That said, let me answer your questions.

Do you find it difficult to take your medications on a consistent basis? That depends on a few things, but the biggest two things would be finances and side effects. For the most part, no, it’s easy enough to take the meds, I usually just joke about simply poring milk over them and calling them my meal replacement. :) Finances can be an issue, as generics are not available for every medication. There are usually other meds that will do the job, though, or symptoms and side effects I can “learn to live with”, but that doesn’t make it any less of a pain to do.

How does the medication affect you? One medication I take is “lithium carbonate”. It’s an older drug and pretty well researched, even if they haven’t nailed down why it helps. Check this page: http://www.drugs.com/sfx/lithium-carbonate-side-effects.html

I want you to read all the effects and notice a couple of statements: 1) “patients sensitive to lithium may exhibit toxic signs at serum levels below 1.5 mEq/L” and 2) “These side effects are an inconvenience rather than a disabling condition, and usually subside with continued treatment or a temporary reduction or cessation of dosage. If persistent, a cessation of dosage is indicated

What these two things translate into when dealing with doctors, for me: “I understand that you are having these effects, but you have to just keep taking the medication. It does seem to help, and, eventually, they will subside.”

This brings me to another point of the experience-overmedication. Doctors will try to treat you with medication for every symptom and side effect you have. At one time I was taking Depakote, klonopin, risperdal, seroquel, prazosin, effexor, and a couple of others. I was, for all intents and purposes, a zombie. I was calm, I was not unhappy, but I had almost no “feeling” and my thoughts were brief and simple.

Think about that for a second. Me. Someone who loves to write, loves philosophy and art, enjoys seeking beauty in mundane places-all things which require intellect and clarity of thought. All of that was out of reach. I could sit and watch TV, but I couldn’t maintain my thoughts enough to play more complex video games. I was also basically narcoleptic, falling asleep every time my eyelids closed.

I can see when all this medication could be reasonable-in response to a severe manic or depressive or mixed episode. In order to be able to treat bipolar, a person needs to be as close to “baseline” as they can and work on medications that cause them to stray too far from that baseline. If I were in the hospital, or in the doctor’s office regularly because I was suicidal or something, I’d quickly be given a large number of meds.

I now take only four medications, and that is only because I came across a doctor that was willing to listen to me and accept that I wanted to be a partner with him in my treatment, and not just a patient. I came to doctor’s appointments with printouts and research I had done on my own, and a willingness to flatly refuse to continue taking a medication that I felt I could show that I had side effects that were subjectively worse than the symptoms they were meant to treat. I was always calm when I met with him for those sessions, and reasoned with him about them as well as trying to be extremely honest about my experiences.

I was lucky.

Most people go into a panic at the Doctor’s, and sometimes with good reason. Many doctor’s have the idea that,”I am educated and simply know more than you, so your problems are irrelevant.” Many are also overworked, swamped with so many clients they just don’t have time to listen to everything the patient had to say.

Combining the experience in the doctor’s office with the experience of side effects and combating the symptoms all at the same time is a terrifying prospect for anyone, too. That’s what goes through my mind any time someone says “adjust your meds”. Another period of weeks or months where I am basically taking a pill that I am almost guaranteed to experience something new that sucks which may or may not help with the things I know that already suck. For at least the first couple of weeks, I am almost guaranteed to have a worsening of symptoms while the drug “gets in my system”… but I will almost immediately have side effects that may or may not go away with time.

I think this process is a major part of why so many people who have bipolar turn to suicide. If this is all my life is going to be, then what is the point? I have been at that point, and have the scars to prove it. I wasn’t quite desperate enough to successfully follow through with it, but the desire to end the suffering I was experiencing by being “on the roller coaster” which was being compounded by my experiences with medication was ridiculously strong, adding to my own lack of stability… for which they wanted to try another medication… and on and on into a downward spiral.

I wish I had some solutions to offer at this point. I have some suggestions, but they will all require quite a bit of work and bravery on the part of your sister.

1: Journal what you experience. Every up, down, weird sensation, thing someone else noticed. Everything. Put it in there and then try to identify the things that you don’t like or that impair your ability to pursue what you see as happiness.

2: Research your meds and illness. There are a number of excellent publicly available resources on the internet for this purpose. This way, you can go back to your journal and say,”Ok, so this is not a part of my base illness, but a part of the medication. Is this worse than what I experience with my illness?” If you decide that it is, try to get into the doctor as soon as possible, and make it a point to take your journal and your research with you. Show the doctor that you are working to try to get control of your illness and not just relying on their knowledge. If they try to tell you not to do the research, well, the best I can say is to find a new doctor. A doctor who is willing to respect you and work with you in your research is priceless and vital.

3: Talk about it with other people who have bipolar. Tell them what you are feeling. Listen to what they feel and experience. Everyone has a different experience, but there are some things that ring true for everyone I have ever met who had bipolar. There’s nothing like thinking you are completely alone in your experiences and then finding that there are others who share some of the same experiences within the illness. It’s nice to come across a person who can make jokes about it as well-and most of the jokes by people with bipolar about the experience are frowned on by people who do not have the illness.

An example-Nobody can party like a manic. To an average person who doesn’t experience having bipolar-more often than not people are aghast. It’s like we’re promoting the idea that mania is a good thing and to be desired. The secret-mania is a lot like being high, the problem is that if you stay high all the time it’s hard to “have a life” at the same time. People with bipolar and experience mania know this and can talk about that while passing stories about wild times and laughing, and knowledge can be shared and attitudes helped. It’s hard to do anything but stop talking when the other person is harping on how bad your “pleasant/funny” memory is.

4. The hell with what other people think. They aren’t in your skin, and so long as you are not hurting anyone or doing something illegal, do what makes you happy. (I honestly think the world would be a better place if everyone rolled with this one, but it’s kind of vital for someone with bipolar)

5. Find joy. This can be tough, I know, when you feel like you are physically shaking apart inside and you are caught on the roller coaster, but there’s almost always SOMETHING. Does music calm you? Listen to it. Does reading distract you? Read. Do games keep you safe-both from the internal goings on as well as potentially making bad decisions while working out how to deal with the illness? Then play them. Every moment of your life should not be about the illness. If you find methods of thinking or planning that help you, it will take time and practice and failure to turn them into habits you don’t even notice anymore, and that sucks. During that time, make sure to do some things that let your brain rest a bit from everything. Take time to listen to the rain or check out a meteor shower. Go to a petting zoo and pet a baby animal. Play with a kitten or a puppy. There’s an old irish saying that I will now misquote: “Life is a series of tragedies and unrelenting sadness, occasionally lit by moments of astounding awe and joy.” Nobody lives for sadness or tragedy. Nobody lives for mundane things, even. We are driven to things which give us joy, no matter how small the amount. Let yourself enjoy things. Believe me-I enjoy a nice hypomanic state when I can get one, and I will enjoy it while I watch carefully to make sure it doesn’t keep going up into the realm of true mania. But believe me, when I’m there, I enjoy it. If I’m on a downswing, I’ll let myself enjoy some of that, whether it’s the sleep or watching tear-jerking movies or whatever gives me joy at the time.

Understand, too, that I am not a professional, and your sister may not experience any of this as I have explained it. Most people with bipolar use comparisons and imagery to try and draw a picture of what they experience for people who don’t experience the same things. It’s a lot like explaining blue to a blind man, or Beethoven to a person born deaf. The experience will never be the same for the two, and only poorly translated.

Your job, though, is both simple and difficult, if you choose to take it up.

Ask her what she needs, and accept what she says. “I need some time alone” means exactly that. “I need to talk” means she needs to talk. “I want to go/do X” means that she wants to do whatever it is. If it’s not reasonable for whatever reason, try to explain it to her using real explanations without talking “down” to her. Make sure she knows that you WANT to be there for her and that you respect her enough as a person to be willing to believe what she says when it comes to what she is experiencing. Hold her accountable for her bad choices and roll with choices that are absurd but not “bad”. In other words, no illegal activities, but hey, you want to hit the pool at 3AM? Meh, why not?

What I’m trying to get at is that you have to learn to be a bit absurd, because bipolar is an absurd illness. The more control over her own life and destiny and medication she feels she has, the more control over the illness she will find. It’s a helluva road, and at the four year mark I was completely lost in it. If it would help, tell her to get in touch with me. I’ll do whatever I can.

I hope this sheds some light for folks who have these sorts of questions.  “Why did they go off meds?” Is the most common question I have ever heard about the illness and people with it.  If you have questions like this, feel free to ask them and I will do my best to answer.  Bear in mind, of course, that I HAVE the illness, I am not a psychiatrist, and my experience and knowledge is specific to me and not to be taken as medical advice or anything like that.  I’m just a person with the illness, and this is what I have experienced and things that have worked for me.  🙂

 

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2 Comments

Filed under Mental Health, Thoughts

2 responses to “A response to questions ‘on bipolar’ (dealing with meds and doctors)

  1. muddletation

    While I don’t have bipolar, I found this incredibly helpful, thank you for posting.

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