Once again, thank you Chris for debunking the myths about schizophrenia.  When I first heard schizophrenia called a brain disease, I was horrified.  I thought my brain would begin to disintegrate and I would fall into a form of senility.  What I have found in my experience has been the exact opposite.  I am stronger, more creative and more confident than I've been in a very long time, maybe ever.  Though I began hearing voices in my 20s, I didn't become acutely psychotic until I turned 36.  I consider my diagnosis late(r) onset.  This has given me an edge over my fellow sufferers.  Getting hit with schizophrenia in late childhood to late adolescence, crucial formative years, is incredibly hard to deal with and a good chunk of us do not survive it.  Part of that, I firmly believe, is due the lack of understanding about the illness, such as all the myths you listed.  It is essential for young people in particular to believe in the recovery model for this illness (true for any serious mental illness) and in order to do that you need to have sponsors, just like in the 12 step programs, people who have been through the worst of the illness and have survived it not only to tell the tale, but to show as living proof that you can have a good life. Far from lacking in intelligence and sensitivity, I have found people suffering from schizophrenia to be both intelligent and creative more often than not.  Those of us who can should come forward and share with the world our stories of illness AND recovery.  This is the way things will change.  Thank you Chris for your dedication to this new change.

Kate 

Christina Bruni, Health Guide

1/24/10 10:59pm

You're welcome, Kate.

 

Christina

"The reality is everyone I know who was diagnosed with schizophrenia or schizoaffective who instituted a drug holiday relapsed and had to be hospitalized again. The risk is just too great to entertain messing up your brain chemistry permanently. Trust me you do not want to reach this point of no return."

Can a drug holiday really mess up brain chemistry permanently?  Is there really a point of no return in this respect?  I am just asking because I frequently do without my antipsychotic for 2-3 days when I need to be alert and focused or when I notice a surge in my appetite and start eating constantly.  Is that likely to cause permanent damange?  I would really like to know.

Carolyn

Christina Bruni, Health Guide

1/27/10 4:47pm

Hi Carolyn,

 

I'll talk about this in detail in my next SharePost: 10 Things You Need to Know about Schizophrenia, specifically the kindling effect.  Repeatedly going off your meds is not good.  This is true for long-term drug holidays and repeated drug holidays.

 

As for occasionally skipping meds [partial compliance is the term for it] it's your call.  A doctor at a NAMI Ask the Doctor session at their 2007 convention said that when people tell him the drug doesn't work, it's actually because the person isn't taking the drug every day as prescribed and partial compliance is the culprit in not seeing a good effect from the drug.

 

I will do more research into occasional non-compliance.

 

Regards,

Christina

Donna-1

1/27/10 8:26pm

Thank you so much.  I have been a partial complier since about 1997 (since I started Zyprexa.)  But then, I ended up in the hospital almost immediately when I missed a dose.  Or at the least, I wandered around not knowing exactly where I was or what was going on, actively psychotic.  It seems like over the years, I have fine-tuned my partial complaince so that I can take a very small dose for a few days to a few weeks.  Then I take my normal dose for a week.  Then I go off of it for 4-5 days, then the cycle begins again.  And I know I am not at my peak performance, because most the days I am completely off the meds, I feel in a sort of fog -- not remembering where things have always been kept, not understanding the words coming out of my own mother's mouth, that sort of thing.  But there is a bit of euphoria underlying the fog that tempts me to return.  A bad temptation, like a prostitute with AIDS.  I am constantly walking a tightrope and fear I may someday plummet from the high place to the very low, and strike the earth, and hurt myself beyond repair.  But I do it anyway.

 

Somehow, I keep thinking that if I were really SURE that partial complaince was damaging my brain, I would be totally compliant.  But probably not.  The "brain fog" should convince me, but it does not.  I am wondering if I will die the statistical 25 years earlier than normal because of my decision.

 

Carolyn

Yes, on more than one occasion I have found an unbelieving or disbelieving therapist who refused to believe I have schizophrenia.  Just because I no longer have the once-present delusions, audio and visual hallucinations, cognitive deficit, flat affect, etc.  In other words, I am not actively psychotic and the other symptoms are substantially controlled by medication, so I "could not have schizophrenia," according to them.  Just because a diabetic's blood sugar is normal does not mean they don't have diabetes.  In the same way, once my "bipolar" symtoms were taken care of with medication, my diagnosis was changed to chronic schizophrenia...because I was no longer depressed?  Seems kinda bass-ackwards.