I think this is a verity. I saw the 6th psychiatrist I have seen since October yesterday, and got another med fix.
Since I was first diagnosed when I was 22, I have been on the following medications.
(In no particular order)
Cogentin
vistoril
Cogentin
vistoril
Prozac
Zoloft
Ritalin
Desyrel
Buspar
Buspar
Tegretol
Mellaril
Mellaril
Dalmane
Wellbutrin
Valproic Acid
Lithibid (Lithium)
Depakote
Geodon
Seroquel
Triliptal
Trazadone
Lamictal
Paxil
Abilify
Topamax
Anafranil
Amitripyline
Elavil
Haldol
Trilptal
Xanax
Nardil
Klonepin
Ritalin
Lexapro
Paxil
Remeron
Tofranil
Tofranil
Ambien
Ativan
Cymbalta
I have also had ECT.
All given in an attempt to feel better, to get out of crippling depressions, for some sense of normalcy and living a life.
The other night PBS broadcast a Frontline special about Bipolar children. If anything can be learned from this cautionary tale, it would be "be aggressive, question everything". I heard Kay Jamieson say this back in 03, "badger (the pdoc) badger, badger".
I have to confess, it wasn't until about 18 months ago I started to tackle my illness agressively. Before that, I took the meds as perscribed by the pdoc, without questioning them, or asking what they would do for me. With the exception of Lamictal, which had to be stopped when I developed a rash, I did not question the doctor. He had a degree in medicine. My education, though it's good, couldn't hold a candle to his learning. I figured he knew best.
I know differently now. I don't take meds without questioning what this is and if the dosage seems too high or low, I question it. I badger the doctor to the point he almost hates writing scripts for me. But I feel informed and seem happy
But I cannot help but wonder, with all the trouble I have had with all these different meds, if I am being tested. Right before I had ECT I remember telling a very good friend of mine "I would do anything to feel better. Anything".
And that is what I am currently doing. Anything.
ANYTHING to feel better, which includes meds and talk therapy.
So I am currently on a new shrink, my first woman shrink in private practice. She adjusted my med cocktail- I was hoping she would lower it, but it's now
2200 mg of lithium daily,
160 mg of Geodon, lowered from 180, taken at night,
and 125 mg of Seroquel taken 5 times during the day. It makes me sleep most of the day, and when I wake, it's time to pop another pill.
I still have to take Nexium every other day because all these years on lithium have caused me to develop a case of GERD. I will never be able to eat spicy food again.
And why do I put up with all this chaos, this psychic pain, plus the wear and tear on my body?
Because I want to get better. I want to be the old me, the me I am when I am well. I like that person. The person who is a good friend, and daughter. The person who embraces life with both hands and enjoys it. The person who gets joy from simple things, seeing a rainbow after soft rains, seeing squirrels outside my apartment gathering food for the winter. Snow.
What I do for love. The love of me, the love that I will find hope again, and a reason to continue. I know it's out there, I have friends and family who believe in me. It keeps me going, when right now taking one step in front of the other is hard, very difficult.
Today I signed up for a 60 mile walk in Philly for breast cancer. It will take up the entire weekend. I've never walked that much before and need to start training for it. Fortunately, it's not for quite some time so it's all do-able.
But I got thinking about cancer, especially since I had a scare earlier last month with a mammogram. If someone suffers from cancer, people understand. They don't so much understand about mental illness, which was the purpose of me writing this blog. I intended to be as candid as I could about my struggles with this illness and share the not so pretty parts not sanitized or bowdlerized that other people write about. There is still a lot of "Snake Pit" unfortunately out there and people need to be educated.
Putting all those meds in your body over a 20 year period is hell. The side effects from them, from mild diarrhea to the latest which involved suicidal ideation with a med that had a black box warning and an aborted attempt and subsequent hospitalization. I have anxiety now, something I never had before, and have been told it's a side effect from the current cocktail.
Which makes me wonder, would a "normal" person go through this? Would a normal person subject their body to the slings and arrows that come from all these meds? 24 in 20 years, that's almost one and a half meds per year. All in the attempt to feel "normal" to be able to live?
I don't think so. I look at the people I know who haven't gone through this, they wonder how I can do it. I don't know if they could, chances are they wouldn't be able to.
Yes, I am a survivor. Maybe that is not visible, but I am doing the best I can. I may only be treading water now, but as long as I don't drown it's OK. Someday I will learn how to swim. Maybe it's today.
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46 comments:
I've been on all the meds you listed except six, unless Gabapentin, and Risperal are different names for two of yours. Plus Ritalin. No ECT. And I've been on revolving cocktails for HIV and those med side effects at the same time. And I don't know why. I know this other self that would exist if all this weren't in the way, and I know what she would do with her life, and I believe in her, and for rare brief times she has been able to take over. Not so much the last three years, so hope is a struggle for me, too. But I know that educating people about it all in the ways you can, when you can matters. And letting other people that they're not the only ones who feel that way matters to me.
Oh - you did say Ritalin, - and I forgot Ativan if you didn't say that, and Diazepam and Sonata. ...For wellness, and companionship and embracing life with my whole body, and enjoying simple things, and love, and hope whenever possible, even if briefly and rarely.
I have been on some of those as well. What is it about medication and why do we have to keep changing?
It makes me wonder if Meds truly work...and if it is just a farce for the medical industry to make money.
Love your blog and your kitty! :)
Dream Writer,
Thank you! And Holly the cat thanks you!
"But I know that educating people about it all in the ways you can, when you can matters. And letting other people that they're not the only ones who feel that way matters to me."
That's why I am blogging. to let other people know they are not alone. Depression sometimes makes you think you are the only person to feel this way, and it's important to know that others are struggling too.
We can all learn from each other.
Thank you phc!
You're deserving and welcome. You can upload and post the award from my Friday post (if you like) - to go with your Holly-Lion. And pass it on.
Hi,
I came upon your blog via furiousseasons.com.
I, too, have been on all those meds, with the exception of Haldol. For me, it's been 12 years and 50+ different medications. It's been rough. It's still rough. But it's comforting to read about others' experiences, others' survival stories. So, thanks for writing.
.
Thank you. I like Furious Seasons too.
HOLY CRAP. That is a lot of drugs. That's enough drugs to kill an army if administered with that effect in mind. I have been "bipolar" for nearly 30 years. I have not ever taken any drugs for it. I don't know if "bipolar" is what I really am, because it seems like a label given to a person with a particular combination of other shitty stuff. It's like the Lupus of the mind or something. Anyhoo, doing my best to not go down this medicated road, because for hell's sake, they haven't got a CURE. It seems like all those meds do is make you miss that original, slightly fucked up version of yourself that is now held hostage somewhere by meds. It frightens me, and at the same time, I understand your desperation to want to feel normal again. It's a rock and a hard place where we mentally ill reside. My best to you. Will continue to follow your blog.
I also feel the way you do about cancer. If only Mental illness made us bald!! My son died of a heart defect at 16. Many more research dollars have been poured into pediatric cancer research that pediatric heart research even though more kids die from heart defects than from cancer. My theory--lack of "baldness." Our internal hell is not visible, so no one gives a crap.
I stumbled upon your blog somehow, and I'm so glad I did! I've been diagnosed with Bipolar II and have been on a few of the meds you have. It. Sucks. Thank you for being so candid in what you write (I definitely just stalked your blog and read a bunch of entries!), I wonder if it would help me if I did the same? I'm now a follower, keep up the great work!
P.S. Sorry for my ramble!
Thank you so much Ashleigh! YOu made my very snowy day!
Me thinks you might find this video I made and posted on YouTube amusing... it is called, <a href="http://www.youtube.com/v/xHpfEftN-gg?hl=en_US&fs=1>Don't Muck With Your Meds</a>
You story about the number of meds, treatments and doctors you have seen echos mine so much it is eerie. I emailed it to my friends and family to illustrate that someone could have bipolar as severe as mine. Somehow, like you although I fantasize about death, I end fighting again somehow and looking for answers and trying some new med combo that just maybe might work this time. I would love to chat with you. I understand if you are busy. But it has been hard to find someone who appears to be as deeply entrenched by this disorder as I am and then have the wherewithal to be eloquent about it. Thank you for writing your blog.
Hi Susan. Between my wife and I we've had a lot of those meds. My wife takes Geodon (with several others). I hate that stuff with a passion...it's expensive and it makes my wife's legs jerk for hours (I have to hit the recliner). She was hospitalized with psychotic episodes 14 years ago and it took a lot of years to get her reasonably stable. Years of her struggling made me a nervous wreck, and I need meds to keep that under control. I'll be linking here and I wish you all the best, Susan.
I have suffered from depression all my life. I have only tried antidepressants twice, but stopped quickly as I do not like drugs.
I have essentially lost my youth to this illness by refusing to face it. I have only started facing up to in the last year.
It is fairly lonely battle as I do not have anyone to share what I am going through. In my part of the world mental illness is not discussed.
It is scary what depression can do to a person. I have goods and a lot of bad. I hope somehow I will figure my way out of this hell.
http://depressioninmotion.com/blogengine/
Thanks Joe. I like your blog and added you to my blog roll.
Thanks for the add Susan, I have also put you on my blogroll (the name of my site is "Struggling with the Elephant in the Room" but if you want to keep it the way it is, that is cool, but its up to you).
I am amazed that you are able to take Seroquil during the day, I have to take it night as it usually knocks me out within an hour (I am currently on 450 mg).
Thanks again,
Dave.
Dave, I changed the title of the blog, I really love it.
It's amazing I found someone who struggles with the religious issue like I do, I am a laspsed Jew, as you would know in an instant if you knew my sur name.
It's a very low dose of Seroquel, 25 mg during the day, 50 before bedtime. That knocks me out.
Susan,
I am glad you like it, I have no clue where the title came from, it just appeared to me (odd I know).
My "jewish" identity is something I have been struggling with for a bit and it is great to see I am not alone :). What makes it more interesting is that my two closest friends are on the opposite sides of the religious spectrum: one is a free-will, spiritual type who believes in combining numerous beliefs, whereas the other has recently found Jesus again and as such, is quite more direct in his religious beliefs.
This leads to very interesting conversations. Couple this with the fact that I am going to be obtaining my masters degree from a Methodist backed school, and you can see how confused I am :P
Do you like Seroquel? I have only been on it 6 months, but my doc keeps on increasing it when I have various episodes (I started at 50mg and I'm now at 450mg). I have a tolerance problem, and it seems that every few months I need to increase my meds to cope with some sort of issue. He tells me that I can go up to 1000mg before I need to start thinking about adding another med.
To me there are varied positives and negatives. It helps me sleep and my mind is a lot more stable. But the weight gain is annoying; I have gained over 50 pounds since starting seroquel, which to me is not much of an issues, just more of a nuisance. And there are times when I am lethargic.
Well that is enough rambling from me.
Again thank you for the add and I hope your Sunday is pleasant and restful,
Dave.
One symptom of my mental illness, at least at first, was my inability to express any interest in what medications the hospital had me on. As I got better, my interest in such matters returned. So don't beat yourself up too bad for your initial lack of interest. Also, the nastiest drug on that list, as far as I'm concerned, is Haldol. I hope that's the drug that came in the black box. If not, it should have been. It made me suicidal in the worst way. :(
Hi Crazy Mermaid.
Haldol almost killed me. I lost control of every muscle in my body and had to be taught how to walk again and and eat again, all those things we take for granted. I couldn't even go to the bathroom. It was horrid.
Hello - well i haven't been on quite that many meds, and thankfully only one in the last 4 years (Lexapro) which, while not a cure, is the only one i've taken which has not had fairly bad side effects. I just started Gapapentin (otherwise known as Neurontin) which i realized i was on about 10 years ago briefly (then it was 200+$ a month WITH insurance, now it's 12$ - thanks for not so small miracles. A spinal doc actually prescribed it for me, as i have pretty serious nerve and muscle pain from a car accident 4 years ago. When i looked it up i noticed it is also used for depression and epilepsy and so far i can say i am quite happy, having been able to feel more than i have been in the last four years. I bring this up b/c i have a suspicion that i may have a mild form of epilepsy (there are about 10 kinds of episodes, which may show up as "spaciness, staring". This is a guess on my part, due to head injury from said accident, but also due to alot of things i now remember from my childhood and honestly suspect that a fair amount of what was thought of as depression (and hey, having seen at least 1/2 dozen docs, and 3 hospitalizations in 20 years, none of which ever gave me a satisfactory explanation about what depression is how they diagnose it, b/c they weren't depressed) might have been mild epileptic episodes and my trying to deal with them on my own and not being able to express what was happening (or really wanting to, b/c the docs always seemed like such idiots to me, sorry). I'm sure this isn't the case for everyone, but i just think there's probably alot of misdiagnosis with depression, and yes, taking all those drugs will change your brain. It took me a year and a half to go off the 4 drugs some idiot doc had me on about 8 years ago, and once i did i was drugless for four years, until some serious life circumstantial changes made me need something again. But i will never again let anyone put me on a cocktail for their entertainment (i had pseudo seizeures (what are "psuedo" seizures anyway?) on Geodon when it was experimental, my doc had left the country, and b/c the ER people didn't know what the hell was happening (or had even heard of the drug) they sent me to a psych ward where they didn't know what was happening either. Sometimes your body needs to be off everything for awhile b/f it can recover its own equilibrium. None of us are going to be exactly like we were when we were 20, but things will be better (that's what i keep telling myself).
It's good to read your blog. I consider blogging about my mental illness, but the stigma attached keeps me from doing it. Thanks for forging ahead.
Hi Jamie. Thank you. I had 5 brilliant blogger friends who convinced me to start blogging, in hindsight I should have hidden my real name better.
It's like therapy to blog. Maybe you can journal?
I love the food blog you have and it's wonderful. I look forward to continue to read it.
Doctors put you on a "cocktail" for their "entertainment"?
I hope that isn't true.
Two doctors I had the misfortune to meet struck me as sociopaths or worse, and I'm fortunate to have survived the experience.
Haldol and Paxil do seem to have been dreamed up by a mad scientist, less I say the better.
Thnanks for the blog.
Hello,
I'm 23 in an hour or so.
and depressed out of my mind.
i feel like a burnt forest with nothing left to my name.... pray tell me, is there any hope? did you make it?
I am bipolar and 62. I am not thrilled about drugs but the ones I am on help. One superb doctor I saw for over ten years helped. He taught me about the cyclical nature of my illness. The first seven years I was in and out of hospitals and received two rounds of shock treatments. In 1970, I would not sign the papers for another round of shock treatment. I had to make that decision all alone. I question every decision a doctor makes particularly regarding my meds. I have fired a few doctors in my time. There is a wide array of meds to treat bipolar disorder today. All I got to say is never give up and you have a right to question any decision a doctor makes. I have been very lucky for the meds I take do help. I always strive to be always be on the lowest dosages of the meds I take. I still have difficulties: my illness has not gone away and when I have an episode it causes all sort of problems. Again, never ever give up and do not hesitate to ask questions.
I learned that no med nor any doctor will fix me. Mostly by error, error and error, I didn't learn from trial and error.
Meds can help me - with symptoms.
Feelings - well those have to be felt. They are painful at first, but once the anger ad hysteria are done with, and the grieving for the life I lost through my blind faith in the medical model, I found that I can feel joy too. And peace. And geif when bad things happen. Like friends dying, like diagnosis with cancer. But I once I learned that I am the expert on the inside of my head and that I can manage what happens in there, I was freed. Not for always and forever, but today was a good day. I hope to have another tomorrow.
I have been luckier than most: I have not been on too many different meds, though, still at a high price: my kidneys are failing (due to the lithium which I had been on for twelve years but not on since 1984)my life,at one point, was out of control. I was in and out of hospitals for seven years and had received ECT twice and insulin shock. I, too, question every med adjustment and in 1970 would not sign the release for another round of ECT. I have led a normal existence despite the fact I still have manic episodes. I keep a very close eye on my sleep patterns and know when I need a medication adjustment. I never forgot one doctor's reply, 'You have as much right as anyone to do things like marry and have children.' As it turned out I later did get married and two children. I do not think doctors are gods and question everything.
What amazingly delightful people. Where have all of you been all my life?
No, seriously, I am NOT being sarcastic. I LOVE people who don't have this need for fake feel good bullshit. I love frank and candid expression. COOL.
Ok, I have been depressed too. Still a little now and then. Probably have other problems now, but the depression is a lot less. Might have more to say on that later.
But right NOW, my concern is my son who just had a his first major BP breakdown, hospitalization and diagnosis 7 weeks ago. That is why the title of this post caught my attention. In fact he is in the hospital right now, 2nd time. He is 26, and newly married. He has been delusional and psychotic. Heartbreaking to see him that way.
the hospital doc has him on zyprexa and lithium.
Thanks for sharing...
This is beautifully written. I love the part about loving yourself and doing things for you. Jamison also talks about how love has helped her just as much as talk therapy and medication too (An UnQuiet Mind). I've been on a few of the meds you've listed as well. I've never had ECT. How was your experience? (If you've written a post about this before, I can try and find it).
I look forward to reading the rest of your blog. Bipolartude pointed me toward it.
Take care,
Jess
I needed to read this post today. I'm coming off Paxil and it's terrible! The withdrawal symptoms have me questioning why I put these medications into my body - but you've put it beautifully here. You nailed all the reasons that I couldn't form into words. Thanks!
First of all, I love the name of your blog. Bipolar Disorder is quite the hellish ride! Second of all, thank you for being so candid with all of the medications that you are on. My husband has been on quite a mental health journey himself, though it seems as though we have finally found the right psychiatrist for him and the right medications (after about a year of intense trial and error). Thank you for sharing your story here. I will continue to read!
Sara Anderson
www.thebipolarmarriage.com
I really liked reading your story, because of the way you told it, and the you that comes through it... The 'you' that you fight to get back to each day.
Med
http://mehdibayjou.blogspot.com
I just found your blog and also suffer from mental illness. I have depression,anxiety and bi-polar II. And yes I would do this all over again. For the past 2 years the cocktail I am on has been working, but about a month ago I started getting more depressed and am now getting my meds tweaked again. But I do know what my new normal is and will fight to get back there again.
Thank you for sharing your story and life with us. I have a mental health blog also that you can find from my name.
Hi, reading your blog gives me inspiration to keep going. I also have started my own blog to motivate and inspire others sharing my story. Recently diagnosed with bipolar. I have numerous other health problems as well. Keep going, Ryan
Goodness grief, that's an awful lot of medication. I have been on Fluoxetine, Citalopram and Amitriptyline. I drew the line after a few weeks of Amitriptyline, I've started a new blog working on keeping a record of my experiences with dietary supplements and following the blood type diet which I hear mixed reviews about.
Medication only treats the symptoms not the cause, I feel it's just adding more layers of confusion to a conduction which is already not understood that well.
Wow, that's alot of meds. Our stories sound similar except that I haven't been diagnosed as bipolar, just Major Depressive Disorder and Anxiety Disorder. You're so right about the ideations. I was so upset last night that I had a pair of scissors in my hand most of the night. I've put holes in my couch and have thrown things when I've gotten in the state.It scares me to death that I might hurt someone or myself. I've been in treatment 3 times in 2 years, but my husband said that I can't go back in again
because we can't afford it. I've been out of work for 10 months and actively job hunting in addition to trying to stay stable. My left arm and hand shake constantly, my meds knock me out and I'm unpredictable as far as day to day. I go to Aftercare weekly where I was in treatment, take my meds, see a therapist and my psychiatrist. It just seems to neveer go away. My marriage and our finances are in shambles and I don't know what to do.
Yes, I am a survivor. Maybe that is not visible, but I am doing the best I can. I may only be treading water now, but as long as I don't drown it's OK. Someday I will learn how to swim. Maybe it's today.
-I LOVE THIS!!!!!
I think you are about the first person I have met that has taken more meds for me. Although I am not bipolar, I have taken the "round" of meds in the search for a help with OCD. I think it is so great that you never give up.
You have a great blog!
Well, like you I went through hell.
I am a suicide survivor, feeling the symptoms of depression since I was eight!
OI gave a talk at TED http://talentsearch.ted.com/video/Ana-Maria-Saad-My-story-of-ment;TEDSao-Paulo
Hope you enjoy it and spread!
all the best!
You're the first person I have met who has taken more meds than me...kind of comforting in a sick way! Well... anyways, I love the blog!
Can someone please tell me the point of not giving into suicidal thoughts if people end up depressed for 20 years anyway? I feel like there's literally no point to anything I do anymore, especially not if my next 18 years are anything resembling the last 2. I actually hate my family and friends for ever talking me out of it multiple times. I think it would have been the best decision I've ever made.
Hello it's my first time here - and I love your candidness, love your blog and look forward to reading more. I am sorry you have had such a stretch of hard time with the depression. I have not taken as many medications as you mention here but I have dealt with depression for the last 18 years and it can be EXHAUSTING, but as you say we do it because well, it is what we do. And sometimes, just reading a blog like your blog and not feeling so strange, or alone, or freakish - makes the surviving feel a little less lonely. Thanks.
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