[greensky602]

I couldn't concentrate or think well when I was on 20mg of Abilify. The initial intention was to taper off Abilify and then try a new medication to see if I can function better on a similar dosage. While tapering off the Abilify, I noticed how much clearer my mind began to feel, and I also experienced less drowsiness. I felt more mental energy, and felt less tiresome physically. I felt more motivated to take action and to do something I find interesting. While on the 20 mg of Abilify, I was sleeping about 16-20 hours a day on some days, and sleeping the normal hours rarely. I believe I feel better off medications and can function better, but my doctor opposes my desire to be free of medications because he is worried my schizophrenic symptoms could worsen. The medications never appeared to help relieve the hallucinations, however, they sedated my anger and intense emotions caused by the hallucinations. I intend to stay on 10 mg of Abilify. My doctor never truly knew my experience. I go through changing times that make medication appropriate in certain circumstances. When I am angry from hearing voices bother me, the medications sedate that anger and hide my true feelings. It doesn't relieve me of anger. I can tell inside I feel intense quiet anger for having to be sedated and made dysfunctional. My doctor sent me to the hospital the last time I didn't take my medications. I was going through a hard time because I didn't understand my hallucinations and acted out because I was so angry. Over time, I understood my anger more and knew how to control it. The medications never helped me with much. Sometimes it was appropriate for me to be sedated because I was so angry, however, it's inappropriate for me to be medicated for extensive periods at a time. The medications never relieved the hallucinations. They come and go when they want. Medications would make my experience of the hallucinations worse at times because I had so little energy to extend myself outwards to take part in activity that it made me constantly inside myself listening to the voices attack me verbally. I had to accept my doctor's orders to stay on medications because I looked more "healthy" on them, but really, I was just sedated and quiet because I didn't have the energy to feel anything but fatigue, boredom, and quiet anger.

[costello]

Hi greensky: You've described the situation perfectly. This is the same experience that many people experience with medications. The "patient" feels sedated and unmotivated but still experiences his or her psychotic symptoms. Those of us observing the patient think they're so much better because they aren't acting out in challenging or frightening ways.

Your need to be empowered to decide when and how you're medicated is something I've also heard expressed by others.

I really highly recommend that you listen to this interview with Pat Deegan: http://www.madnessradio.net/madness-...sonal-medicine As she struggled with her recovery from psychosis, she used the medications that her doctor gave her as a tool to manage her symptoms. She would use them when her symptoms increased. She would break them into smaller pieces to get a smaller dose. BTW she never had a doctor who worked with her on this. She just experimented on her own. By letting the psychosis rise up she was able to learn to manage her symptoms without meds. At other times she needed the meds to keep her from being overwhelmed.

I'd recommend reading anything or watching any videos you can find by Pat Deegan. She's amazing, and she really raises my hopes for my son's recovery.

[KUREHA]

I understand what you mean – I take Abilify just 10mg, my nurse said it’s getting increased when I see the doctor next week, but I’m going to stop.
I get tired and less alert with it.
Could you ask your doctor if you can just have it ready – so when things feel like they are getting bad – just to take it then?

Hi greensky,

I can understand you not wanting to be on medications, especially when they only sedate you without improving your schizophrenic symptoms. However I can also understand your pdoc worrying that your angry outbursts will come back if you stop your meds.

Perhaps if you can demonstrate to your pdoc that you are acting logically about this, they will feel that they can still work with you and won't have a knee-jerk reaction to put you in the hospital? What I'm considering is treating this like a scientific experiment to prove to yourself and your pdoc whether your meds are necessary or not.

For example, I'm thinking that you could create a table or jot down in a journal:
- what dose you are on,
- how much you slept (to show how sedated you are)
- what schizophrenic symptoms you are experiencing (to gauge the effects the meds have and show that you still get them even on meds)
- how you are feeling and what you are doing at the time (to maybe see if something is causing the angry feelings)
- and maybe even what you've done in the day as a guide to how 'productive' you've been eg if you're too sedated or distracted by voices etc to focus and do stuff

Hopefully this would give you vital information about what triggers your schizophrenic symptoms and what affect your medication is having. I myself have done a similar table to see what symptoms I've been getting since stopping my meds. How do you feel about doing something like this?

Also have you got a T? If not, would you consider working with a T to see if you can learn ways of dealing with your anger that wouldn't make you end up in the hospital??

All the best greensky

*Willow*

[Starlightembers]

This. Every word.

I was put on medication for the first time when I was hospitalized. At that point, it was justified. The psychosis had infected every part of my life, and I was in danger of doing serious harm to myself, property and others. I had already self-injured (cutting, burning, banging) on her command, and was breaking out into fits of rage - that, in reality, were more frustration and the result of building emotional pressure caused by near constant command hallucinations - that would end with me kicking/punching/throwing myself up against walls until I was bruised. My moods were also incredibly unstable, as I had no frustration tolerance. In the three days before being admitted, I finally broke down; I was barely even leaving my bed, and I was so engrossed in the delusional world of my psychosis that very few things I thought and said were rational. I had a pretty detailed plan for suicide. I knew I needed medicinal help, and sought it out.

I was put on Zyprexa and Lithium (I am diagnosed Schizoaffective, so there is also Bipolar mood symptoms); later, Zyprexa would be swapped for Serequel, Paxil added to the mix, and other hospitalizations upping the dosages. My symptoms did improve, in that the delusions lifted; however, in terms of paranoia, hallucinations and emotional regulation and stability, it was primarily just sedating. I could feel all those same emotions and impulses, just below the surface; but they couldn't rise above the waves, if that makes sense. It was like walking through cotton. I don't regret it, per say - it helped me gain back control of my life; but, ultimately, it was not good for the long-term. I was/am lucky enough to have a psychiatrist that not only supported me in medication cessation; but was the one to suggest it.

I was initially reluctant to so much as lower the dosage; however, once I started, I couldn't imagine staying on it. A fog just lifted. The world became more focused, my sense of humor returned, I became social again, I had focus and my passion for things returned. At this point, I am off everything, which may or may not be right for you (I can, if needed, take something; but I have not yet). I have had symptoms return - mood and psychotic - but I have learned to respond in healthy ways. Though it may sound contradictory, I feel more "sane" now than ever. I went into this ordeal feeling out of control, and now, for the first time in years, I feel in control. And that, not the presence (or lack of presence) of symptoms, has made all the difference.

It's important to talk to your doctor about how you feel. His concerns are valid; but, from the sound of it, you are rational, thinking clearly and have come a long way in terms of knowing how to respond to your anger. This should show through your discussions with him. He will likely always be reluctant - the standard of care in the treatment of Schizophrenia and psychosis is an anti-psychotic; but it seems, at this point, the drugs seem to be doing more harm than good on your functioning. In the end, this is your decision. You know your limits, and you know what you can handle. If medication cessation, or even dosage lowering, is something you feel is right for you, it may help convince your doctor if you collaborate with him to create a plan and insert safeguards. Track/record your symptoms, check in with him more frequently or increase the amount of appointments, agree to raise the dosage if things go wrong, keep a medication as a PRN just in case, pick a couple friends or family members to give an objective opinion about how they see you acting, make a list of coping skills, etc. This should help ease your doctor's anxiety, and make the process smoother.

We, those who cope without medication, are out there. Some of us fail and go back on them. Many of us, however, stay off them, and turn out OK. It's up to you. The option IS there, though.

Erika

[costello]

Starlightembers: pick a couple friends or family members to give an objective opinion about how they see you acting

Thanks for sharing your story here, Erika. Very helpful and uplifting. I wanted to emphasize the bit of your message I quoted above. I'm helping my son manage his medication and even suggested he stop taking his morning dose of 5 mg of Zyprexa (he's still taking 30 mg in the evening - a large dose in my opinion). I hope we'll be able to work with his new pdoc to lower that evening dose too. We meet him on Tuesday.

Anyway I've noticed that my son doesn't seem to know when he's slipping, but I do. And my sister does. He starts talking about certain topics and having certain ideas. He's clueless, though. So I've talked to him about accepting input from those of us who know and love him about the early signs of an impending episode. It would be so much better the stop the damned thing before it starts picking up speed. At a certain point there doesn't seem to be anything to do but force treatment. And I'm trying to avoid that.

Just yesterday we were talking about some bills we're trying to pay down that mounted up during his last episode. I took the opportunity to remind him that this is a good reason to maintain control of his mind - the clean up afterward is so painful. He may find that irritating (my reminding him), but I don't want him to flip out over the stress. We can't do anything about the past, but we can try to avoid falling into the same mistakes in the future.

So if you're wanting to reduce or eliminate medications it would be helpful to have someone you trust to keep an eye out for the signs that you may need to temporarily increase your meds.

[greensky602]

Thanks everyone! I think I would function better on a lower dosage of medications, such as 5mg of Abilify, rather than 10 mg. I don't think my psychiatrist would allow it since it hasn't even been a year since I was last in the hospital. I don't think he trusts my judgment of how much medications I think I need. He wanted me to be on 20mg of Abilify, and he thought I was functioning well, but I was so sedated and dysfunctional that I requested a medication change. While tapering off the Abilify to switch to Risperdal, I started feeling weights lifted off my mind and I could think more clearly. I intend to tell my psychiatrist that I'm functioning better on 10 mg of Abilify, although I feel I could be even better on a lower dosage, but I don't think my psychiatrist will allow 5mg because that would seem to low. I'm trying to gain the trust of my psychiatrist that I am sane and capable. I think the medications have done some damage to my brain. I don't feel as ambitious as I use to, feeling very low motivation. My memory has worsened and I can't read as well as I use to. Hopefully, everything will one day start to return to normal for me.