My latest post on quora:
Haldol
Must Watch Video!
Abilify, Abilify Maintena, Acceptance, Activism, Allies, Anti-anxiety meds, Anti-depressants, Anti-psychotics, Anxiety, Anxiety Attacks, awareness, Bipolar, BPD, Brain, Depakote, Depression, Diseases, DSM-5, Effexor, Emergency Room, Families, Family, Geodon, Haldol, Health, Kristin Bell, learning through film, Lithium, Mania, Manic, Manic-Depressive, MAO Inhibitors, medical, Medicine, Mental Health, Mental Illness, Obsessive-Compulsive Disorder, ocd, Prozac, Psych Meds, Psychiatrist, Psychiatry, Psycho, Psychoactive Substances, psychoanalysis, Psychology, Psychosis, schizoaffective disorder, Schizophrenia, Seroquel, sickness, stigma, Stories, Suicide, Support System, Surviving, symptoms, TED Talk, treatment, treatment of the mentally ill, Video, Zoloft, ZyprexaThis is a great presentation/speech. I hope you can watch and share it! It really needs to go viral! Hopefully the correct video will play. It is a TED talk about mental illness and community.
You Know Your Symptoms the Best!
2013, Abilify, Abilify Maintena, Anti-anxiety meds, Anti-depressants, Anti-psychotics, Anxiety, Anxiety Attacks, Bipolar, Borderline Personality, BPD, Brain, Bulimia, Compulsive Eating, Compulsive Exercising, DBT, Depression, Eating Disorders, EDNOS, Education, Haldol, Haldol DEC, Haldol Decanoate, Happy, Health, Injections, Kristin Bell, Lithium, long-acting injectables, Mania, Manic, Manic-Depressive, Mental Health, Mental Illness, Mood Stabilizers, negative symptoms, Obsessive-Compulsive Disorder, ocd, Paranoid Schizophrenia, Prescription Meds, Psych Meds, Psychiatrist, Psychiatry, Psychiatry Denial, Psycho, Psychoactive Substances, psychoanalysis, Psychology, Psychosis, schizoaffective disorder, Schizophrenia, self-care, Self-Harm, Self-Injury, stigma, Stress, Support System, symptoms, treatment, Zoloft, Zyprexa
Recently I made a medication change (with the help of my psychiatrist), and as you might know from your own interactions with meds sometimes it can cause issues to develop. I was happily strolling along for a couple of months with a few bad days here and there, and then I started to notice the bad days piling up more often. I was really irritable, sad, became unmotivated, and suicide starting sounding better. I became alarmed, because I knew something was going wrong, but how was I supposed to explain to my psychiatrist that “irritable” is a symptom for me?
The problem with mental illness is that even when we fit into a diagnosed category of disorder, we all have our own unique symptoms that we need to pay attention to. I have schizophrenia, but for years I didn’t appear “sick enough” to most doctors, because they expected me to be talking to the walls and completely disheveled. There were times when I was talking to the walls and completely disheveled, but the doctors rarely saw me during those times, so they figured I wasn’t that bad off. Because I could communicate relatively well most doctors dismissed schizophrenia as a diagnosis.
Over the years I have come to realize what my symptoms are (for the most part), and now that I am doing better I can advocate for myself more effectively. However, it still isn’t easy to call up my psychiatrist and say “wow, I’m extremely irritable, this isn’t normal for me, and I need to increase my meds.” Most psychiatrists won’t believe that “irritable” is in any way related to schizophrenia, but for me (and many others) it is. I don’t become psychotic over night, and I don’t believe that I should have to be talking to walls in order to get the help I need. I also don’t believe that people should have to try to kill themselves before mental health professionals take people seriously.
Unfortunately, a lot of mental health professionals won’t take a person seriously unless they are debilitated to the point of needing to be hospitalized. So, as people living with mental illness or people who love people with mental illness, we have to be very proactive about getting the help we need before it turns into a crisis. Think about the good days and what you are like on those days, and compare them to the bad days. What are YOUR symptoms? How do things manifest in your day to day life? You might want to write down what you know your symptoms to be, and take that list with you when you talk to your doctor. It isn’t easy or fun, but we have to advocate for ourselves even when we are not doing our best.
In the end, you know your symptoms the best. Remember that you aren’t “crazy” for wanting to feel better and you aren’t making up excuses. Be pragmatic and straightforward, and get the help you need.
Update on Abilify Maintena Use!
2013, Abilify, Abilify Maintena, Bipolar, crazy, drugs, Haldol, Haldol DEC, Haldol Decanoate, insanity, Kristin Bell, long-acting injectables, Medicine, Mental Health, Mental Illness, negative symptoms, Paranoid Schizophrenia, Prescription Meds, Psych Meds, Psychiatrist, Psychiatry, Psychiatry Denial, Psycho, Psychoactive Substances, Psychology, Psychosis, schizoaffective disorder, Schizophrenia, Science, symptoms, treatment, treatment-resistantHello Abilify Maintena!
2013, Abilify, Abilify Maintena, Anti-psychotics, Chemistry, drugs, extended release, Haldol, Haldol DEC, Haldol Decanoate, Health, Injections, Kristin Bell, long-acting injectables, Mental Health, Mental Illness, negative symptoms, neuroscience, neurotransmitters, Paranoid Schizophrenia, Prescription Meds, Psych Meds, Psychiatrist, Psychiatry, Psychiatry Denial, Psycho, Psychoactive Substances, psychoanalysis, Psychology, Psychosis, Risperdal, schizoaffective disorder, Schizophrenia, Seroquel, stigma, symptoms, Trazadone, treatment, treatment-resistant, Trilifon, Zyprexa
Some of you may remember that I have been getting Haldol Decanoate injections for the past 13 years or so in order to keep my schizophrenia in check. I wrote about it here: https://kristinbell.org/2012/06/14/the-haldol-injections-after-10-years/. Recently Abilify Maintena, the long-acting injectable form of Abilify came onto the market. After discussing it with my doctor, we decided to give it a try. I have been taking the oral form of Abilify along with the Haldol Dec injections for about two or three years with no adverse side effects, and it has really improved my functioning as well. The long term risks of side effects like tardive dyskinesia are much higher with the Haldol than with the Abilify which is one reason why we decided to switch. Abilify also has fewer metabolic side effects (things like less weight gain are associated with Abilify). We are taking a giant leap into the great unknown. I got my first injection of the Abilify tonight. It comes in an injection kit with sterile water that must be mixed with the powder Abilify and then injected. The Haldol is an oil-based mixture that is also injected. I am hoping to also have less sedation side effects from the Abilify. I’m just crossing my fingers that all will go well. I will keep you all updated as time passes. It is also interesting to note that Abilify Maintena has been approved for much longer in many other countries, but it just became available in the US. The US also lags behind many European countries in the administration of injectable forms of antipsychotics. Personally, I think that all people with chronic schizophrenia should give injectable antipsychotics a try. The injections don’t hurt and it is much easier to manage than oral medications. I’m including some pics of what my injection kit looks like too. It looks complicated, but it really only took about 4-5 minutes to administer including reading the directions! I’m saying Hello to Abilify Maintena and goodbye to my old friend Haldol Decanoate!
Schizophrenia and Negative Symptoms: Q&A with Dr. Potkin
2013, Abilify, affective flattening, alogia, Anti-anxiety meds, Anti-depressants, Anti-psychotics, asociality, avolition, Biology, Bipolar, Brain, Depakote, Depression, dopamine hypothesis, Dr. Steven G. Potkin, drugs, Education, Genentech, Geodon, Haldol, Haldol DEC, Haldol Decanoate, Health, insanity, Irvine (UCI), Kristin Bell, Lithium, Mania, Manic, Medicine, Mental Health, Mental Illness, Mood Stabilizers, N-methyl-D-aspartate, NAMI, negative symptoms, neuron, neuroscience, neurotransmitters, NMDA, NMDA receptor hypofunction hypothesis, Paranoid Schizophrenia, Paxil, Prescription Meds, Psych Meds, Psychiatrist, Psychiatry, Psychiatry Denial, Psycho, Psychoactive Substances, psychoanalysis, Psychology, Psychosis, Risperdal, schizoaffective disorder, Schizophrenia, Science, Seroquel, stigma, Support System, Surviving, symptoms, synapse, sz, Therapist, Trazadone, treatment, treatment-resistant, Trilifon, Wellbutrin, Zoloft, Zyprexa
I have some great news! I was able to ask Dr. Steven G. Potkin, Professor of Psychiatry in the Department of Psychiatry and Human Behavior at the University of California, Irvine (UCI) Medical Center, some questions regarding the negative symptoms of schizophrenia. He is also the Robert R. Sprague Endowed Chair in Brain Imaging. It was a brief, by email interview, but I’m happy to share what I’ve learned with you all! The following is the Q&A:
Kristin: What are negative symptoms?
Dr. Potkin: “Negative” does not refer to a person’s attitude, but instead to a lack of characteristics that should be present. Symptoms include reduced amount and content of speech, even when encouraged to interact (alogia), lack of emotional and facial expression (affective flattening), diminished ability to begin and sustain activities (avolition), decreased ability to find pleasure in everyday life (anhedonia) and social withdrawal (asociality). [1] [2]
Negative symptoms can appear a few years before other symptoms appear in young adulthood in the so-called “prodromal” stage of the illness.[3] Unfortunately these symptoms often go undetected because they manifest themselves as issues common among teenagers: social withdrawal, problems with school work, irritability, depression and sleeping problems.[4]
Kristin: Do all people with schizophrenia have negative symptoms?
Dr. Potkin: No, but at any point in time, negative symptoms can affect approximately 50 percent or more of people with schizophrenia.[5] [6]
Kristin: How do negative symptoms affect a person with schizophrenia? How do they affect their family and friends?
Dr. Potkin: Research suggests that for people living with schizophrenia, negative symptoms are key factors in poor quality of life as well as problems with personal hygiene, school and work performance, maintaining relationships, interacting within the community, and participating in social activities. [7] [8] [9] [10]
For caregivers of people with schizophrenia, negative symptoms may cause more burden than do other types of symptoms as they see their loved ones life isolated and lacking in meaning or joy. [11]
Kristin: How are negative symptoms currently treated?
Dr. Potkin: Current treatments for schizophrenia focus on reducing characteristic symptoms and can include both medication and psychosocial interventions.[12] No effective medication treatment has yet been approved for specific treatment of negative symptoms. Despite progress in the medication side of treatment, there are still unmet needs in terms of symptom control. A large study found that despite treatment, approximately 57 percent of people receiving treatment for a schizophrenia spectrum disorder still had at least one negative symptom.[10]
Kristin: What is the research that Genentech is doing regarding negative symptoms?
Dr. Potkin: Researchers at Genentech are pursuing new treatment strategies for schizophrenia, including increasing N-methyl-D-aspartate (NMDA) receptor activity in the brain in order to target the mechanism that may be a common link between the positive, negative and cognitive symptoms of the disorder.[7] [9] [11] [12]
Specifically, through a clinical trial program, Genentech is looking at an investigational medication for people with schizophrenia, including people who experience mostly negative symptoms of schizophrenia, despite taking medication. For more information, please visit www.SearchLyteschizophrenia.com
Kristin: How can family and friends of someone with schizophrenia help someone with negative symptoms?
Dr. Potkin: Caregivers can talk to doctors about interventions including medication, psychosocial rehabilitation (work, school, relationships), medical care and wellness, and therapy (e.g. cognitive behavioral therapy and peer support groups), as well as ongoing clinical trials.[13] They can work with physicians to find the medications and non-medicine therapies that are right for their loved one. Different medicines may have different side effects. Caregivers can also consider programs from the National Alliance on Mental Illness (NAMI) including:
• NAMI Hearts and Minds
– Online, interactive wellness initiative
• NAMI Peer-to-Peer
– Free, 9-week educational course on recovery
• NAMI Connection
– Recovery support group for adults
Kristin: Do scientists know the biological mechanisms involved in negative symptoms? If so, what are the areas of the brain and/or mechanisms involved in negative symptoms?
Dr. Potkin: In the 1970s, the “dopamine hypothesis” of schizophrenia emerged, suggesting the biological basis of schizophrenia was an excess of signaling by dopamine, a chemical messenger in the brain. This theory, however, could not explain negative or cognitive symptoms.[6] In the late 1980’s a newer theory suggested positive, negative and cognitive symptoms could all be due to reduced function of NMDA receptors in the brain. This theory is now known as the “NMDA receptor hypofunction hypothesis.”[6] [7] [8] [9]
Researchers are pursuing new treatment strategies for schizophrenia, including increasing NMDA receptor function in the brain in order to target the mechanism that may be a common link between the positive, negative and cognitive symptoms of the disorder.[7] [9] [11] [12] It is thought that NMDA receptor activity is an important pathway in psychiatric disorders, especially schizophrenia.
End of article.
*Note: I would like to thank Dr. Potkin for helping me put together this interview. This research is very exciting and I hope that negative symptoms can be tackled in this decade! I know how debilitating they can be!
______________________________
1. Gard DE, Kring AM, Gard MG, Horan WP, Green MF. Anhedonia in schizophrenia: distinctions between anticipatory and consummatory pleasure. Schizophr Res. Jul 2007;93(1-3):253-260.
2. Strauss GP, Gold JM. A new perspective on anhedonia in schizophrenia. Am J Psychiatry. Apr 2012;169(4):364-373.
3. Stahl SM. Stahl’s Essential Psychopharacology: Neuroscientific Basis and Practical Applications. 3rd ed. New York: Cambridge University Press; 2008.
4. National Institute of Mental Health. Schizophrenia. 2009; http://www.nimh.nih.gov/health/publications/schizophrenia/complete-index.shtml. Accessed July 7, 2012.
5. Kirkpatrick B, Fenton WS, Carpenter WT, Jr., Marder SR. The NIMH-MATRICS consensus statement on negative symptoms. Schizophr Bull. Apr 2006;32(2):214-219.
6. Bobes J, Arango C, Garcia-Garcia M, Rejas J. Prevalence of negative symptoms in outpatients with schizophrenia spectrum disorders treated with antipsychotics in routine clinical practice: findings from the CLAMORS study. J Clin Psychiatry. Mar 2010;71(3):280-286.
7. Ho BC, Nopoulos P, Flaum M, Arndt S, Andreasen NC. Two-year outcome in first-episode schizophrenia: predictive value of symptoms for quality of life. Am J Psychiatry. Sep 1998;155(9):1196-1201.
8. Kirkpatrick B, Fenton WS, Carpenter WT, Jr., Marder SR. The NIMH-MATRICS consensus statement on negative symptoms. Schizophr Bull. Apr 2006;32(2):214-219.
9. Kurtz MM. Symptoms versus neurocognitive skills as correlates of everyday functioning in severe mental illness. Expert Rev Neurother. Jan 2006;6(1):47-56.
10. Milev P, Ho BC, Arndt S, Andreasen NC. Predictive values of neurocognition and negative symptoms on functional outcome in schizophrenia: a longitudinal first-episode study with 7-year follow-up. Am J Psychiatry. Mar 2005;162(3):495-506.
11. Provencher HL, Mueser KT. Positive and negative symptom behaviors and caregiver burden in the relatives of persons with schizophrenia. Schizophr Res. Jul 25 1997;26(1):71-80.
12. National Institute of Mental Health. Schizophrenia. 2009; http://www.nimh.nih.gov/health/publications/schizophrenia/complete-index.shtml. Accessed July 7, 2012.
13. National Institute of Mental Health. Schizophrenia. 2009; http://www.nimh.nih.gov/health/publications/schizophrenia/complete-index.shtml. Accessed July 7, 2012.
Lindsey’s Experience with Schizophrenia
2012, Anti-anxiety meds, Anti-depressants, Anti-psychotics, Art, artist, Haldol, Health, insanity, Kristin Bell, Lindsey Cormier, Medicine, Mental Health, Mental Illness, Psych Meds, Psychiatrist, Psychiatry, Psychology, Psychosis, schizoaffective disorder, Schizophrenia, Seroquel, Zyprexa Hey check out Lindsey’s vlog! Great to hear her story! :) She is also an amazing artist! Check out her art at http://www.etsy.com/shop/lindseycormier
Genetic Testing! Yay!
Abilify, Anti-anxiety meds, Anti-depressants, Anti-psychotics, Anxiety, benadryl, Biology, Bipolar, Body, BPD, Buspar, Depakote, Depression, dna, drugs, Effexor, genetic testing, Genetics, Haldol, Haldol DEC, Haldol Decanoate, Kristin Bell, Lithium, Mania, Manic, Manic-Depressive, MAO Inhibitors, Medicine, Mental Health, Mental Illness, metabolic pathways, metabolize, Mood Stabilizers, Navane, neuroscience, Obsessive-Compulsive Disorder, ocd, Paranoid Schizophrenia, Paxil, plavix, Prescription Meds, Prozac, Psych Meds, Psychiatrist, Psychiatry, Psychoactive Substances, Psychology, Psychosis, Risperdal, schizoaffective disorder, Schizophrenia, Science, Seroquel, Technology, testing, Trazadone, Trilifon, warfarin, Wellbutrin, Zoloft, Zyprexa
Hey Everybody! I wanted to share with you this cool genetics testing that is available to people. I just got it done, because my nurse practitioner ordered it and Medicare pays for it. (Medicare pays for this testing, because it saves a LOT of money and can save lives!) It is really cool, because it tells you how medications will interact with your specific genetic makeup! It is extremely important if you are taking really any kind of medication. For example, had I known about my results before I took Wellbutrin years ago, it would have saved me from basically having a manic reaction to the medication. It turns out that I metabolize differently than normal on some of the metabolic pathways. This means that I will metabolize the meds on those pathways different than people without this issue. If you have Medicare, I strongly urge you to get this testing done. It could save your life from a bad genetic-medication mistake. I think many other insurance carriers might also pay for it. It also explains why I can take a lower dose of many medications and still get the desired effect from the medication. I would say that anyone who is trying to figure out their psych meds should really get this testing done too. It doesn’t just tell about psych meds though, it tells about stuff involving all other sorts of meds. Seriously, this is pretty awesome! Again, here is the link: http://www.genemedrx.com/
The Haldol Injections: After 10+ Years
2012, Anti-psychotics, Denial, Haldol, Haldol DEC, Haldol Decanoate, insanity, Kristin Bell, Lunatic, Medicine, Mental Health, Mental Illness, neurotransmitters, Psych Meds, Psychiatrist, Psychiatry, Psychiatry Denial, Psycho, Psychoactive Substances, Psychology, Psychosis, schizoaffective disorder, Schizophrenia
I first wrote about taking my Haldol injections back in 2007 in https://kristinbell.org/2007/07/23/the-haldol-injections/.
I wanted to report that yes, I’m still getting the Haldol injections now once every three weeks. Haldol is an antipsychotic medication used to treat psychosis like that found in schizophrenia. I have schizophrenia and started getting the Haldol injections back in late 2000…I guess it was November or December of 2000. The Haldol injections combined with all the other meds I take have been a miracle for me.
So far (knock on wood) I haven’t had many side-effects from the medication. I haven’t yet developed tardive dyskinesia. I hope that I don’t.
I had to start getting the Haldol injections, because I couldn’t take my medications as prescribed. It sounds like a simple enough task, but my illness got in the way of me adhering to my medication regiment, and I’d wind up going off my meds and going crazy. I’ve had a good run with the Haldol. I haven’t been hospitalized since starting it, and if you know anything about people with mental illness, that is quite a feat! :) Without the injection form of the medication I’m pretty sure I’d still be bouncing in and out of insanity and in and out of hospitals.
Haldol is a powerful medication, and not one that people enjoy taking. It can cause a lot of sedation, but in the right dose with the right brain it is a miracle drug. It doesn’t work for everyone, and I probably wouldn’t extoll the virtues of it if I was taking the oral form of the medication. With the injection form of the medication I am able to take less of the medication while still getting the benefits of it. I believe that there are also short-acting Haldol injections for acutely psychotic patients, but I am getting the long-acting injections which metabolize over a number of weeks.
I know that a lot of people, including people with schizophrenia and other brain diseases, are afraid of getting injections of medication. If you are paranoid and psychotic, like I was when I first got the injection, it is terrifying to get the injections. I actually believed that the doctors were giving me a lethal injection to kill me when I got my first dose. It turns out that it was the best thing that ever happened to me, not the worst. Now there are other medications that come in injection forms too. Meds like Risperdal and others. If Haldol doesn’t work for someone then maybe one of the other injectables will work. At any rate, I think it is worth giving them a try. It may take awhile to get used to the meds and to get the correct dosing, but it is worth it in the end.
Mental Health Update: Monday, May 28, 2012
2012, Abilify, Acceptance, Anti-anxiety meds, Anti-depressants, Anti-psychotics, Anxiety, Autobiography, Bipap, Body Image, Body Narrative, Brain, Buspar, Depression, Diary Rant, EDNOS, Fat, Fat Acceptance, Fat Hatred, Haldol, Haldol DEC, Haldol Decanoate, Happy, Health, Injections, insanity, Kristin Bell, Medicine, Mental Health, Mental Illness, Mood Stabilizers, Prescription Meds, Psych Meds, Psychiatrist, Psychiatry, Psychiatry Denial, Psycho, Psychoactive Substances, Psychology, Psychosis, schizoaffective disorder, Schizophrenia, Sleep, Sleep Disorders, stigma, Weight, ZoloftI thought I’d do a little mental health update, since it has been quite some time since I’ve blogged about my overall mental health. As some of you dear readers may know, I have schizophrenia. I first had issues with it when I was about 15. My first hospitalization was when I was 16. Towards the end of 2000 I got mostly stabilized with my Haldol injections and Zoloft. I haven’t been in the hospital since then! Yay! Quite a long run I’ve had and I hope it continues! For quite some time I had problems getting things done, being motivated and feeling down…that sort of thing, even though I was mostly fine. I think it was last year that I started taking Abilify and it has made a HUGE difference! I’m still taking Zoloft, Buspar, Haldol and some non-psychiatric meds in addition to the Abilify, but the addition of the Abilify was great. I’m doing really pretty well these days. Sometimes I have anxiety, although I think it might generally be related to performance issues with school. I also tried taking Topamax to help with weight loss, but I thought it might be making me stupid and giving me more anxiety, so I quit taking it. I think overall, the Topamax was not helping. It seemed like I was becoming less motivated and more sad with it. I also had that bad anxiety day that I wrote about recently.
So, I think I was just hoping for a magic weightloss bullet with the Topamax. It didn’t work. Boo. I have lost about 90-100 pounds though which is good, but I still need to be less sedentary. I’m also a believer in fat acceptance, but of course it is hard to say that I never want to try to lose weight. I would be an even bigger believer in fat acceptance if I wasn’t actually fat I think!!! hahaha. I know that sounds ridiculous, but it is kind of true. I can accept the hell out of everyone’s fatness, but my own! lol.
Anyway, enough about fatness for now. What I want to say is that I’m doing well on the whole. My sleep patterns have improved with my sleep apnea machine, and while I’m not sleeping on any kind of normal schedule yet, I’m getting sleep every day and mostly at the same time! I still tend to be somewhat paranoid, but I’ve found that opening up with people over the years on the internet has really helped me to realize that I don’t need to be afraid of everyone in the world. I still have some delusional thoughts that blow through my brain now and then, but I consider them to be more of a slight annoyance than a big deal right now. But seriously, it is because of the medicine. If I wasn’t taking my meds, and doing so faithfully, I would be in and out of hospitals and massively psychotic. Some people don’t believe me, because I “seem so normal,” but I have to wonder what THAT means anyway? And, I don’t know, it seems like I should be insulted when people say that to me, but I’m not sure why I find it so insulting! I don’t necessarily want to be abnormal, even though I pretty much am, but I think it just bothers me that people attach a kind of value judgement to the term “normal” as if “normal” is superior. It is definitely easier to live in the world if you are “normal,” but it isn’t the only way to be in the world, that’s for sure. Normal is just such a peculiar word, no?
So, I’m doing fine. Some anxiety here and there, some weird thoughts here and there…a depressed mood now and then, but mostly just good. Which is nice. Thank you meds and thank you lucky stars! So, that’s my update after living with schizophrenia for 24 years. Wow! 24 years! Man am I getting old!!! LOL.
