Even if they aren't working?I have told my doctor's that the Seroquel they prescribed me made me a zombie, not life there anymore. I begged to try something else. BUT, they threatened me with Court intervention, Go Figure??? I'm the one who asked for help, but not to drug me up so bad that I can't even function and wake up once in awhile. I am only 48 yrs old. I am not ready to die yet! I have quit a few years of living to do. I don't want to be comatose. I had to just eventually stop going to those doctor's and quit on my own. I have tried so many anti depressants to no avail??? NONE worked as of yet? I wished I could find one that is just primarily okay. MAYBE someday I just switched to new doctors and I will go next week. I hope that things will go well, and I can get some help for my arthritis and my pain issues and my depression & bipolar. I am also in Therapy 1 on 1 with a Psychiatrist for last 2 yrs. I never stopped that! I will back & let you know how it goes this time around. I will take my meds if they work for me!!!!
I consider myself very lucky. 12 years ago I found a wonderful psychiatrist. I don't know if it is ok to include his name. He has worked with me to get my medications at the right level. He has listened to me and allowed me to take or not take my medications based on my mental health. I see him every other week. I saw many and I mean many psychiatrists with terrible results. So I am very lucky to have found such a wonderful doctor.
The meds merry-go-round can be scary with all the side effects and drug interactions. I watched my ex wife go through it. But having watched my ex go through it and having known others suffering from bi polar disorder, the prevailing attitude I have seen has been that there is an expectattion that there is some magic med or combo of meds that will "fix" or "cure". But there is no such thing. The best anyone with a mental illness of any kind can hope for is to find a combo that will enable them to atleast deal with or make their symptoms bearable. But even that is still a lot to hope for and still requires a lot of effort.
Doctors are not wizards they dont have magic wands that can heal and cure. They are only the first step in an overall plan and regimen to be undertaken in order to find a way to deal with and live with a mental illness or any chronic uncureable illness. Sometimes people forget that. I know a couple of people who have bi polar disorder who have made that mistake. They expected the doctors to give them the right pills and they would be fine. But the patients have to be willing to work just as hard as their doctors in order to be on a healthier track.
Sure its easier said then done to keep trying new meds to find an acceptable and bearable combination, but it still has to be done. Sure it may take years and a lot of trial and error, but noone said dealing with an illness like bi polar would be easy if it was easy to deal with it would have been cured by now. If the meds you are on are having adverse side effects then make your doctor listen to you, after all you are paying them or your insurance is paying them. If they wont listen to you then get another doctor. Dont stop trying because you will never be able to live better with your illness if you give up. And you sure wont be able to live with your illness if you dont take your meds. Just dont set your expectations to high about the meds. They wont make it go away. All meds have side effects, there is no way around that. Its a question of what side effects you can tolerate and what side effects you cant. If one med decreases your sex drive, makes you a little zimbi-ish but still decreases and/or eases one or more of your symptoms, while another med may decrease and/or your ease one or more of your symptoms but makes you dizzy or causes some worse kind of side effect, then its a no brainer,...take the first med.
When people just arbitralily stop taking their meds because they either think they dont need them or because they feel they would rather have their symptoms then the meds side effects, I just cant find a lot of sympathy for them. I dont mean to be rude, but finding the right meds requires a lot of work, both on the doctors part and on the patient's part to have the will to keep trying even when faced with disappointment and discouragement.
I spend a lot of time talking with people about this. Due to the "image" of the authority (doctor) and the stigma of a person diagnosed with a mental illnes, people dont feel they have a choice or the right really....take as perscribed, or dont take it, but for heavens sake dont tell the doctor cause they'll be talking to the admission ward of the psych hospital and there you will be going! People dont believe they have the right to question a doctor. Some folks say that they fear "being locked up", if the court hears you're NOT taking your medication as perscribed you might get your kids taken away, and the list goes on. Do these folks have a right to be concerned? I advocate asking questions as those in the article, telling your doctor..."I just cant be a good.....(worker, mom, dad, husband)...on this medication and/or dose. Please work with me, because I wont give up these things in my life. They make my life worth living. Id like to try something else, something that will help me with......
I find that people may need practice in asking these questions, finding out whats important in their life, whats valuable to them and then sharing with the doctor. Ask which medications or possibly dosages that may fit with these goals, and help you to attain them. This way of thinking about medications is pretty scary, and stigma and treatment has all but squashed any feelings of self-determination and the right to participate in your own treatment. Things change when people start to believe that they "run the show".
I spend a lot of time talking with people about this. Due to the "image" of the authority (doctor) and the stigma of a person diagnosed with a mental illnes, people dont feel they have a choice or the right really....take as perscribed, or dont take it, but for heavens sake dont tell the doctor cause they'll be talking to the admission ward of the psych hospital and there you will be going! People dont believe they have the right to question a doctor. Some folks say that they fear "being locked up", if the court hears you're NOT taking your medication as perscribed you might get your kids taken away, and the list goes on. Do these folks have a right to be concerned? I advocate asking questions as those in the article, telling your doctor..."I just cant be a good.....(worker, mom, dad, husband)...on this medication and/or dose. Please work with me, because I wont give up these things in my life. They make my life worth living. Id like to try something else, something that will help me with......
I find that people may need practice in asking these questions, finding out whats important in their life, whats valuable to them and then sharing with the doctor. Ask which medications or possibly dosages that may fit with these goals, and help you to attain them. This way of thinking about medications is pretty scary, and stigma and treatment has all but squashed any feelings of self-determination and the right to participate in your own treatment. Things change when people start to believe that they "run the show".
i wholeheartedly agree with this - especially that last paragraph! yes, there are drugs that do more good than harm but if we don't actively work with our doctors to fix this we can't expect to get a solution. doctors are not our enemies, they DO want to help us get better (that's why they became doctors in the first place!) and we have to do our part as well. continuing to take something that doesn't work or that has terrible side effects is obviously a bad thing... but it can be much, much worse to stop taking those meds without talking with your doctor first. they have gone through years of medical school, they KNOW how drugs interact with one another and how they affect the brain - we don't. for instance, many drugs need time to become effective. if we decide to stop taking them before they could realistically have a chance to work, and we aren't proactive about finding a replacement drug... well then it's nobody's fault but our own.
this isn't like an antibiotic where all you have to do is take it for a week and you know it will work. our condition(s) require us to put just as much effort into getting better as our doctors do, if not more. this can be hard to accept, i know, but it is absolutely essential to our recovery.
(i know there are bad doctors out there - but you are not at their mercy. here's another area where you NEED to be proactive. get out there and find another doctor!)
It took me a wrong diagnosis...or maybe it's better to say an incomplete diagnosis (major depressive disorder) and a good look at myself along with my husband encouraging me, to decide to even try medication. I started on tegretol in November of last year. By May, I knew it wasn't working properly anymore. Since I hadn't yet seen a pdoc (I was prescribed by the primary care doc) I had to stay on it. The first pdoc was a pompous a$$...I quit him immediately...
The 2nd pdoc was willing to work with me with all of my supplements/alternative meds but it took another 3 1/2 months to convince him that the tegretol wasn't working. By that time, he'd seen me on a couple emergency trips to the office including one emergency room visit. He knew me enough to know that I was intelligent...wanted to do what he suggested and would comply.
I'm now on lamictal (lamatrogine) and will be weaning off the tegretol beginning the middle of September. I am thankful that my pdoc does explain things. He answers any questions that I or my husband have.
My therapist is the best thing I've got going. I'm weeding out some painful situations and peeling back the layers and and doing the grief work needed. It's all a process. I know that I have a great tendency to stuff and fall into depression. My husband and I are optimistic about the course of treatment and all of the therapies. I've come a LONG way in just a year!
God Bless,
Shelly
Ok I have some things to say about this article.
First, I don't agree that all meds work and you just need to take them the find that out. NOT all meds work for everyone that's why there are so many hundreds on the market at the moment.
Second, most of the people are saying it should work have not had a psych med a day in their life. I remember when I was in inpatient and the nurse who was looking after my discharge told me, "Don't worry sweetie these pills are magic. Just keep taking them and I have seen people do an immediate about face!" with a cheery smile and sent me on my way, as hell might I add, out into the big scary world again. I was NOT stable when I left the hoospital. I lied to get out of there because it was so awful and degrading how the staff treated myself and other patients. So this notion that everything will be solved with a pill or a handful of them is completely FALSE. Any psychiatrist will carefully inform you that you have a long road ahead and it takes more than just a handful of meds to change your life. It's days and days of hard work, lifestyle changes, cognitive reformations and therapy assistance. And it takes YEARS!
But take heart in that the meds do help you to manage your symptoms as you go about your days in the world so don't give up just don't look at meds as a way to make everything disappear and get better overnight because it just isn't going to happen! I new that nurse was full of it, hence my eye roll at the time.
Next, the questions John outlines in his article on what your psychiatrist/doctor should tell you or what you should inturn ask them. These are great questions and I do have to say that my psychiatrist tell me these ones (1- What precise aspect of your illness the med is supposed to be addressing? 2- I am going to refreame it as, when should you feel/see the med working, 3- How the med is supposed to figure in your recovery?
And then I ask the rest: 4- How the med works and interacts with other meds you are taking?, 5- All side effects issues? (he tells me the most common ones I research for the others and talk to my pharmacist), 6- Scientific evidence of the med's efficacy and safety?(while he doesn't show me the scientific backing he does look it up on his computer and outlines what it helps with and how well by giving me the stats. And does the same for the safeness of the med(s), 7- His or her own personal clinical experience in prescribing this med? I think it's really important to ask these questions in order to stay involved in your treatment plan. By choosing your meds and working along with your health team (doctor, therapist, pharmacist and you) it makes it easier to stick to and hold yourself accountable for working on healing yourself.
P
I've taken meds, off and on, for nearly 30+ years.. mostly anti-depressants because I was mis-diagnosed for so utter many years. ADs do not help me, never have, and the newer the classes.. the worse the reactions... I refuse to take another.
I've done the Lithium, several times actually. I've had Lithium toxicity once... nasty.. oh so nasty. That would be "over the top" dosing because my system handles meds differently than most.
Outside of that one incident, I've never reached a clear therapeutic dose on Lithium (when on it) because it left me apathetic, dragging, lethargic, and fatigued 24/7. I could not work my job, I can not work in that condition. I am no longer taking Lithium.
I tried Lamictal... it broke me out into a most insidious itching inside my nostrils, ears, mouth, on tongue, and inside my actual eyeballs it felt. I was taken off of it by my psychiatrist. Hated that really, I wanted Lamictal.
I tried oxycarbamazepine (generic Trileptal)... very dizzy, loopy, drunk speech, eyes blurred, diarrhea you wouldn't believe, and a weird headache that wouldn't leave.. plus some odd static tingling all over... I stopped that one because well... I had to work and I had to drive myself to work everyday.
I'm now on Topiramate (generic Topamax) for seizure control. If I go up above a certain dosage I am stupid, I am extremely hostile and possible likely to be violent. I can assure you that there is nothing like a stupid hostile possibly violent woman.
Seroquel... 25 lbs in 2 months, unsatiable need for Honey Buns in the middle of the night, could not put 2 words together coherently, slept like a dead person even in the middle of the day... developed muscle pain/rigidity and was removed from it.
Abilify... developed "fish puckering", arm and leg jerking, and blistering eyelids... funny the pdoc I had at the time just insisted I continue taking that one.
I have tried many more meds.. these are just a few to name.
Cymbalta, without insurance is gold priced... with insurance, it's still gold priced. Can't afford that... Lyrica is the same, by the way... and Neurontin locked my bottom jaw to my upper jaw... pdoc removed me from that one also.
Point of all this.... I'm not on "Bipolar" meds. I'm actually not on any "psychiatric" meds. There I said it. I'm not.
Topamax is strictly anti-convulsant and Vicodin is for my degenerative Arthritis and Baclofen is for my death grip leg seizures. Outside of those... nothing.
I'm tormented, I'm struggling, there are days I see and hear things that I know are not real and yet I still see and hear them. My mind chatters continously, my thoughts scatter and zip always. Some days I can move mountains and most days I want to step out in front of the Amtrak train that runs across the trestle behind the building I work in.
I envy, in many ways, those who can take "the meds" and yet I am weary of trying any longer. I have to function and I have to be able to work... all the meds I've taken over the years have not allowed either/or to happen in some form or fashion... therefore the meds have not helped me overall.
course, some would argue that the Bipolar episodes are just as equally dysfunctioning but... they change in time and except for the suicidal depressions... I have only had 3 high hospitalized manic episodes in my life time.. my employers just adore my hypomanias... I don't necessarily but, they sure have and still do 
yes, you have tried just about everything, and youre scared to try anything else. I get that. Are you a part of any support groups, peer run especially. Peope, believe it or not, experience some of the same things you do. Im a part of some really interesting and helpful groups for people experiencing things like youre describing. Do you participate in any alternative treatments? Have you seen a doctor that actually knows of all the alternative treatments that are out there like supplements (be careful with this though)? I do meditation, relaxation breathing, yoga (really, really helps!) Some folks start out..."I cant quiet my mind, I cant!...and after learning how, and PRACTICING they find it helpful. The internet also is a great place for support. I liked the part about your employer liking the mania..lol..., of course they would. How does the way you experience bipolar disorder effect the other important roles you play? relationships with others, family, etc., are you a parent? There are a whole lot of reasons you might want to try other medications, or alternative wellness stuff. I cant imagine the problems youre facing. Sounds like you could use some support. You are NOT alone!
I've been 30 years through some sort or fashion of therapy, counseling, DBT, CBT, and any other type of therapeutic thing out there... I still am
I do a tremendous amount of work through therapy and I'm constantly trying, and often times - yes -failing but, always trying and working on the skills I've learned after all these years.
I'm not against meds, by no means.
It's just that I've found after so many years and so many things that meds appear to be against me more often than not.
What is often times a low dose has turned into a life threatening or severe reaction to me, many times over and on many different meds, over the years...
what is low for many is sometimes too high for me
and there are more of me (folks like me) than many realize
it's not that I'm not wanting meds... it's meds do not want me
I have been fortunate to have a great relationship with my current psychiatrist. I have been seeing her about every two months for many years. I call when I see a dangerous symptom (like not sleeping), and she always calls back the same day and agrees with me on changes I've thought of -- 100% of the time! (I was a C.RN, B.A., M.S. but am not practicing any longer. My recurrent depressions started getting in the way of my work. Fortunately when we moved to a new state I no longer had to work otherwise I think I'd be on some type of disability by now.) My cocktail has changed a lot following my hospitalization 6 years ago. I keep a BEAM chart which points out problems before they get severe. I am very compliant taking all my drugs and can tell when they need to be adjusted. My doc comments she wishes all her Bipolars were as good about keeping track and taking their meds. Must be frustrating on the other aide of the equation, too.
I have spent 30 years with the ailment with a couple of episodes over this period of time. There were times when the medication made a zombie out of me. Nevertheless, I have followed one simple principle 'Doctor knows best'. However, at the same time I kept my quest for "Dr Right" at each place where I got transferred by virtue of my job.
"Dr Right" in my view is a person who listens to you, understands your disease, & apart from the medications, helps you to get a better insight of the ailment. In my long association with Bipolar, I have been lucky to have a more than fair sprinkling of the Right doctors. Of Course, that is not to deny the existence of absolute unprofessionals.
I presently have a doc who is helping me maintain a moderate level of medication & I religiously adhere to the dosages. The dosages fortunately do not disrupt lifestyle discernably. Certain side-effects, one has to learn to live with to avoid a full blown relapse & losses associated with it. Bestwishes to all who struggle like me to cope with Bipolar.
http://www.usatoday.com/yourlife/health/healthcare/2010-09-01-medtesting01_CV_N.htm This article in usatoday is very relevant.
Excellent topic - it will certainly bring much discussion to the table!
My most problematic phych-med is without question Seroquel. I've had it in my regimen and in my body (in varying doses) for about 3 years. And compliance has been difficult at best.
I've endured the majority of the side effects - my daily functioning skills (especially before noon) have been minimized. How a parent of young children taking seroquel manages I have no clue. Thankfully, my kids are grown. The only med I took when they were young was llithium. I tolorated it well with few side effects. And I was healthier then! Sometimes I wonder!
It's difficult being a "dopehead", thanks to seroquel. The quality of my life is impacted in a major way. Small wonder compliance is such a "BIG" problem for so many.
Look forward to reading everyone's input - this topic and its implications are critical to our good mental health.
Judy
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Back during the 4 years when my doctors were trying everything they could to treat my depression I was on Lithium for about 10 days. I barely survived it. Any little bump or loss of balance and I would go crashing to the floor. My doctor took me off of that before it killed me! I was on another med where the usual dose was 32 mg. I was only up to 8mg when I had short term memory loss so bad I could not find something in my hand, passed out and could hardly stand up. I wound up in the ER. One of my docs described it as a "Brain Attack" similar to what a heart attack would do to you. It took me several years to get over it and I still don't have good balance. Meds can be very scary.