How Our Meds Make Us Feel

On Friday, August 3, 2001, CBS aired a program in its "48 Hours" series entitled, "Murder They Wrote". It featured a young man diagnosed with schizophrenia. His parents were terrified that he might commit murder; he would not take his meds. They (certainly not he) reported that he "did not like the way the pills made him feel."

As if his meds made him feel better, and he didn't like that. As if he enjoyed the voices screaming in his head so much that he missed them when the meds drove them out.

Let's put an end to this harmful, stereotypical, idea right now. We do not "dislike" our meds. Our meds make us suffer. Let's let non-consumers know what it is about psychotropic drugs, and how they "make us feel", that we don't "like".

I'm not condoning anyone's refusal to take the meds they need. I'm trying to educate psychiatrists and all non-consumers: please never so much as imply that our objections to trying new meds are a matter of taste or of not "liking how they make us feel".

Consumers, what side effects did you feel when you started taking your meds?

Karen has responded, "I have had, and still experience, 'electric shock phenomenon' with all anti-depressants. It is a pulse in my brain that is really scary. It really gets bad when I change medications. They say that it is the brain's reaction from not having the drug anymore. It feels like a misfire in the neuron receptors. I have had it for years, but no one really knows if it is brain damage or just side effects and there is not much written about it."

Karen, Being forced to choose between being depressed or experiencing shocks in your brain is really nasty. — Dr. Bradt

Michele has responded, "I want to add the side effects from the meds I am taking. I am a highly creative person and feel on Serzone and Zyprexa I am not creative. I don't play piano anymore, I hardly ever ride my horse, and I certainly have not lifted any colored pencils to draw. I try to write in my diary and can't. So part of me is stripped away in exchange for controlling the manic episodes. I hate the way the meds make me feel: loss of sex drive, numbness, tiredness. I am shaky too. The shaking won't go away for days, and without taking Vistaril, I would keep shaking. And my psychiatrist wants me to take a higher dose of Serzone."

Michele, You are smart for seeking a second opinion. Before they prescribe a third med to counteract the side effects of the first two meds, psychiatrists should try replacing the meds that cause the side effects. -- Dr. Bradt

Limon has just started on lithium. She says, "Boy do I feel queasy today! I want to barf right now. Look at my hands! They are so jittery! Someone hand me a wooden spoon! I have the most heinous taste in my mouth.

Limon, Bleahh! I remember that awful taste when I was first starting on lithium. Thank God it goes away. -- Dr. Bradt

Jennifer is taking Zyprexa and is satisfied with it. She writes, "My mood is sooooo much better. People who know nothing about my illness or meds have made comments about how I seem much happier and more positive."

But there ARE side effects: "Problem for me with Zyprexa is, as you said, getting to sleep. I tried taking it in the morning, but within 2 hours I am hard pressed to keep my eyes open. But when I take it closer to bedtime, it keeps me up. I don't understand why it makes me tired when taken in the morning but not at night. Getting up in the morning is next to impossible. I end up having to drink a pot of coffee to even focus on getting showered and dressed. But, once you fall asleep, it's like the sandman hits you over the head with a hammer and you become comatose."

Jennifer, I had the same problem with Zyprexa, but I couldn't put it into words very well. Thanks for expressing the problem so clearly. -- Dr. Bradt

LizaBella: To those of you who say that we “don't want” to take our meds, here's some food for thought:

I am a severe bipolar with rapid cycling. I have been on every drug imaginable — anti-depressants, anti-psychotics, seizure medications, anti-anxiety — at least 50. The list goes on and on. Nothing has controlled my rapid cycling. Lithium made me toxic in three weeks time, Depakote caused me to gain 80 pounds, and Wellbutrin did nothing for me except make me feel completely surreal. Of course, it could have been that, along with the Wellbutrin, I was on four other medications. And yes, every single drug had side effects that, if not uncomfortable, were damned unbearable.

I was told, "No stress, stay calm, and get plenty of sleep." I almost laughed in their faces. How do you have no stress and plenty of sleep when you are a severe manic-depressive?

Now I am on Zyprexa (which completely knocks me out, even at 2mg/day) for the mania and Effexor (300mg/day) for the depression. Along with giving me terrible headaches, Effexor has completely taken away my sex drive. And I now have virtually no appetite for food.

Christel [Bipolar]: When I first started taking Neurontin my hands would shake and I lost a significant amount of hair, but I have been on it now for about 6 months and all the side effects are gone. I'm really glad I toughed it out! I'm up to 1200 mg. a day and doing good for today anyway.

Katharine [Bipolar II] has searched for a stabilizing med for almost 15 years. The first, lithium, gave her severe tremors and diarrhea. She continues, "Obviously, anti-depressants (Paxil and Celexa) did not work. In fact, the mania they caused was severe enough (the worst I have ever experienced) that I suffered through weeks of hallucinations. I was not a happy camper."

Katharine adds a very important message:

"The anti-anxiety drug Klonapin was a really cheap attempt on their part to curb a prolonged state of mania. Needless to say, as happens with many bipolar persons, I easily became addicted to it. WARNING: for anyone who is diagnosed bipolar, be very careful with downers of any sort. It is our natural inclination to become very attached to CNS depressants (including alcohol), and I recommend reading the literature on bipolar disorder and addiction, often referred to as "double trouble".

"The same thing goes for the sleeping "aides", which I believe are actually regarded as hypnotics and narcotics. Again, be careful! These pills will not cure you of insomnia associated with mania or depression. In fact, the next morning you may experience what I did, which is something like being run over by a freight train. Heavy limbs, severe stomach cramps, nausea, disorientation, and frightening depression."

But Katharine's story has a happy ending (well, reasonably happy). She writes, "Out of all of them, the largest relief comes from Trileptal . . . I have only been on it recently, but I would like to second Dr. Bradt's opinion that it should be increased slowly. They started me on two pills a day (300mg). My face, hands, and ankles constantly swell. I have little, sharp headaches every morning. My vision sometimes gets blurry and every now and then I feel a bit detached from my body and things around me.

"But -- my cycling has decreased significantly, my anxiety is finally manageable, I have an overall sense of being more competent and sturdy and, most important, when I laugh I really laugh and when I cry I really cry. In the eight weeks I have been on Trileptal, I have only had three major "breakthrough" episodes of dysphoric mania. For me, that's pretty good. Yes, I could do without the puffiness and the headaches. But I also know what life without Trileptal is like."

LizaBella responds to Katherine: I have been on Klonapin since 1989 for severe anxiety and PTSD and, yes, it can be addictive. Does it control my severe mania? NO. But it does help with my severe anxiety.

The drawbacks are many. Since it is in the same class as Valium and Xanax, it can and is a very sedating drug. I started out with 2mg. a day and, gradually, because your body becomes used to any drug of this type, I now take 6 mg. a day, a large dose, some say. It keeps me constantly sleepy...during the day. But because of my severe mania, no matter when I take it, I am up by 2 am . or earlier, so it does no good with my night sleep.

I've taken it so long that, at one point, I asked a doctor friend how to wean myself off it. He was unsure about it but I persisted, and he advised me to start cutting back a quarter pill a day every three days. I began cutting back my dose and finally was completely off Klonapin. Since the drug stays in your system, it took about 5 days before I began to feel really ill: nausea, shakes, dizziness, body aches, in other words, withdrawal.

I got back on the drug just to end the wretchedness I was feeling physically, not to mention that my anxiety went through the roof. I am still on the drug, still being told I need it for my extreme anxiety, still sedated during the day and unable to sleep at night. Still.

Katherine is right. Be very careful with any medication that has the potential to become addictive because although your mind may not feel addicted, your body will.

I was originally prescribed Celexa, but it made me nauseous to the point where I was physically ill. After this, none of the SSRIs gave me any side-effects, and I eventually ended up on Paxil. I was also prescribed Topamax, which I was told to take in such a high dosage (200mg/250mg) that I couldn't feel my arms to the elbows or my legs to the knees. My eyes also twitched uncontrollably, and I had no appetite, which resulted in me losing 15 pounds in two weeks (a lot, considering I started at 105). Seroquel was then added to help with my disrupted sleep and overall agitation. Seroquel knocks me out completely, gives me headaches that last for days at a time, and makes me want to sleep constantly. After more tweaking of dosages, I'm on 150 mg. Topamax, 50 mg. Seroquel (and I want to go to bed now!), and 25 mg. Paxil. Hopefully, we're not done tweaking.

Jennifer Elaine, Months Later
The scariest mood stabilizer I've been on thus far has been Depakote. I have been told that I had a very atypical reaction to the drug, and there is a standard-letter size note in my chart telling future doctors never to put me on it again. Depakote made me into a zombie. I sat in a chair or lay in bed, slept, did not eat, and did not know simple words (IE, "bowl") until someone told me to call a doctor.

After Depakote was Trileptal. The mix of Trileptal, Paxil, and stress appears not to have been helpful. My anxiety levels and paranoia shot through the roof, but I was "profoundly depressed", having a minor meltdown. The newest med I'm on is one I haven't heard of. My pdoc told me thyroid medications can be helpful with BP, so I am on Cytomel now, a thyroid med. The very good news about this is there are no side effects from the medication, unless my thyroid were to become hypoactive because of it.