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Latest Video: Going Off Seroquel

Sep 24 2009 | Comments 29

The great irony of this video? Shortly after filming it, I had to resume my 100 mg dose again, which is what I’m taking now. Things got really frayed after this, but not in a depressed way, exactly — more like a psychotic way. I’m lucky in that I get to experience both and sometimes separately. Delightful! So now I’m sleeping a lot, which is good to recharge the batteries, come off the mild psychosis and deal with a pesky cold that has me producing mucus at an alarming rate. Strangely, my chihuahua is afraid of the tissue box, so every time I go for a tissue — every 3 seconds — she recoils as though I’ve just picked up a dog-beating bat (in her mind, I guess that exists).

Still, I realize that when I start working again, I’ll be able to reduce the Seroquel again to 25 mg or maybe 0 mg without much of a problem. Once I’m in a routine, I tend to do quite well. So, as those of us in recovery say every day with increasing confidence: This. Too. Shall. Pass.


liz | 2:58 PM | meds

Karen Says:

Wow Liz,
Watching your video brought tears to my eyes. I so identify with the way you describe your feelings. I wish I had your positive, sensible outlook. Seroquel has also been a magic bullet for me. I take 300mg at night. If I don’t take it, I will not sleep no matter what I do. Thanks for eloquently describing what it feels like when you take these heavy-duty drugs.

Sep 24 3:45 PM

Jennifer Says:

Liz, I’d love for you to talk about how those of us with mental illness view ourselves, if only from your perspective.

Sep 24 4:00 PM

L Says:

It’s kuh-TIE-uh-peen :-)

Sep 24 6:35 PM

Dennis Says:

Liz one word: remeron.

Makes me sleep like a baby

Sep 24 6:49 PM

Amelia Says:

My thoughts and prayers are with you as you go through this process. Having gone through the hellish experience of weaning off of Cymbalta, I know that it can be so rough, especially as you go from the smallest does down to nothing. Thank you for your positive outlook!

Sep 25 9:00 AM

Miranda Says:

Have you written yet about whether you have endocrine side effects with the Seroquel (high blood sugar dangers etc.) and if so, how are you and your doctor managing it?

I successfully tapered off of two medications, albeit very low doses, but I believe I have a useful formula. (It’s based in part on my doc’s recommendation of not lowering a dose any more often than every 2 weeks, but it’s a bit more mathematical than that.) If interested, email me offline. Best of luck!

Sep 25 1:18 PM

Ally Says:

Every time I have increased my Seroquel thinking it is only temporary…when I try to decrease, I have to go right back up again. Very frustrating because I would really rather not be taking it in the first place. I do sleep so well though! For the first year I didn’t remember any dreams which I found kind of unsettling/frustrating, now I occasionally remember them.

Sep 25 4:21 PM

Steve Says:

What ever happened to your cat and her kittens?

Sep 25 7:01 PM

Naomi Says:

I don’t want to say a “wonderful story,” since of course it wasn’t wonderful. Maybe more like “wonderfully to the point and expressive story.”

Sometimes I look at my pill shelf, and am blown away at the number of medications I take every day. Some of them are prophylaxis for Migraine, but as you probably know, Bipolar and Migraine share a high co-morbidity rate, my shrinks have always felt they were related to each other.

So I am on 5 daily meds, and 4 meds PRN. It makes me feel much older than I am. Not that I am super young, but it is unusual to see a medicine cabinet like mine in someone my age.

What you describe sounds a little like a mixed episode, something that I only started experiencing 3.5 years ago. I was diagnosed 22 years ago, and the illness still keeps changing its face, and taking me by surprise. Ugh.

I actually would love to hear anything you know about Mixed Episodes, the material I am finding is kind of namby-pamby.

Sep 26 3:09 AM

Ton Says:

I’d blame the jet-leg. TWO of my slovene friends have unplesant bipolar experiences: one got stuck in a jail in Indonesia and another’s first impression of ‘down under’ is australian psyhiatric system… No joking.
Jeez, Liz, you are priceless sharing your experiences, ups and downs, with us all. I have a friend who has diabethes, is a marathon runner and writes a blog: it’s all about carbohydrates, mostly I don’t understand a thing – but he does a big thing for our diabethes community. They’ve made a running team recently!
This was a kind of ‘thank you, Liz!’
tone

Sep 29 2:55 AM

k Says:

I would love to hear more about the side affects you suffer from Seroquel- other than the fatigue- or even other side affects you know of. I take 150mg of Seroquel/ night, among other things for bipolar. I am on the hunt trying to figure out what is making my hair fall out at an alarming rate (I’m a woman- so it’s scary). It could be anything- including one of my meds- has anyone else experienced this?? Thanks for sharing your story,

Sep 30 11:31 PM

Naomi Says:

k, just out of curiousity, you do not use a dandruff shampoo, do you? That can cause hair loss in conjunction with a lot of pychoactive and neuroleptic meds.

Oct 2 5:57 AM

Tess Says:

Until a cure can be found, we have to rely on pharmaceuticals. Good luck finding the right mix for you, Liz.

The reaction to psychotropic drugs is very individual, while drug X may not work for one, it can be lifesaving for another.

Those who banish all pharmaceuticals based on their individual reactions, and prefer to go crazy on a regular basis give a bad name for us that keep trying to give science a chance.

It’s about time to change “Mental Illness” to a Brain Disorder, and to look for a cure.

PS: stress (and some drugs) cause hair loss, take your daily vitamins, Liz

Oct 2 10:40 AM

kimbriel Says:

If mental illness were truly a verified brain disorder, it’d be handled by neurologists…

Anyway, I just wanted to post that lamictal made me lose half of my hair in a month. Depakote and lithium are known for causing hair loss too…

Oct 2 4:21 PM

k Says:

Thanks for the tips on hair loss guys. I am on Lamictal but my doctor insists that hair loss is not a side affect. I do have an incredible, excessive amount of stress in my life- so everyone keeps telling me it’s the stress… maybe it is. I’ve never taken Depakote or Lithium. The Lamictal is absolutely necessary for me to be alive so if that is the cause of hair loss, I may have to just deal with it. But, as a woman, it’s really scary- once it’s all gone I wonder if I’ll still think the trade off is worth it…

Naomi- I don’t use a dandruff shampoo, but I do have problems with my skin, and scalp, and use a type of steroid foam on my scalp. Do you know what ingredient in the dandruff shampoo is the problem?

Thanks all.

Oct 3 9:50 AM

kimbriel Says:

k, Lamictal is what made me lose half my hair in a month, as I said above. It IS a side effect of Lamictal, though a pretty rare one. And you see it a lot more in the higher doses (whereas I got it at a low dose)… I tried so supplement with Selinium and Zinc, I tried taking Biotin, I tried hair loss preventing shampoos. Nothing worked until I stopped taking the Lamictal… but you could try these things and see if they work for you.

Oct 4 12:52 AM

aa Says:

Tess said,

“Those who banish all pharmaceuticals based on their individual reactions, and prefer to go crazy on a regular basis give a bad name for us that keep trying to give science a chance.”

This isn’t an either or situation. It is possible to be med free or close to it and not go crazy. Several people are doing it but of course, doctors don’t want to hear about those stories because meds are all they know.

In spite of dealing with severe adversity, I have been able to taper from 4 meds down to 1. Unfortunately, I am at a standstill due to severe rebound insomnia but that is another post for another day.

Anyway Tess. most of us who have had bad reactions to meds would never be in favor of banning them because that would put people who wanted to taper off of them in extreme danger with cold turkeying. So you might want to rethink your position on that.

Regarding science, please explain that to me. I have not seen any studies by people not affiliated with drug companies that show that psych meds have sterling success rates. But if you know of one, I would love to hear about it.

Please let’s stop demonizing people who take certain positions. If you chose to take meds and are fully informed of the risks, that is your choice that I support. But please don’t demonize me because I chose a different path.

Oct 10 3:10 PM

kimbriel Says:

Thank you, aa! I totally agree!

Oct 13 9:16 PM

Dr. Rod Says:

I’m sure it’s utterly useless for me to put my two cents into this discussion, but what the heck. I’m a clinical psychologist and work in a large, metropolitan county jail. I teach part time also. Both of these venues give me the opportunity to study, teach, and practice the topics you all are discussing here. Some of you have hit the important points and others have missed them. As some have said, medication is horribly overused and given to people who have been horribly overdiagnosed. We have banned Seroquel from use in our facility because it is so heavily abused, traded, and sold by inmates. Sadly, a huge percentage come in taking it for everything from anxiety to insomnia to asthma (no, I’m not kidding). Most prescribing physicians don’t even use it for its intended purpose (psychosis), instead they are using it for unapproved purposes (sleep, anxiety). I, and those I work with, have no respect for FDA “approvals” for meds like this because it’s all based on biased research (as someone pointed out). secondly, those of you taking psychotropics or other medicines for sleep, you are making a huge mistake. Sleep is a natural human process. Insomnia, unless you have a massive head injury or neurological disorder, is caused by stress, anxiety, and other disruptions in your life. Putting chemicals in your body to force it to do something it should be doing anyway is a big mistake, creates addiction, and causes additional problems down the road. Third, mental illnesses are not brain disorders. Even if you don’t believe me, look at the research. Everyone – pharmaceutical companies included – admit that we DO NOT KNOW squat about mental illness. Any self respecting, competent clinician in America will tell you most mental illnesses are products of life, poor coping, trauma, etc. that lead to emotional problems. Mental illness IS real. It IS debilitating. It IS difficult. But it also IS curable. Medication does not cure OR treat mental illness; it covers up real problems, misleading people into believing they are getting better whilst their problems grow, expand, and continue to eat them from inside out. If you want to get better, find a qualified, caring psychotherapist who you like, trust, and who will challenge you. Medication, in most cases, is making you worse.

Oct 15 9:57 PM

Mike Miserocchi Says:

Hi Liz,
Thank you for giving s no-holds bared peek into yhe life of someone, who along with millions–have been prescribed everything under the sun, and am now taking 400mg serequel, 500mg cymbalta presently for my ongoing battle with “just recently” diagnosed bipolar disorder. Although I myself have been aware of my condition for over 7 years’ at 46 years old and numerous “attempts” at a diagnosis of which were, depression, opiate dependency, and other misdiagnosis, only recently , and late in the game I may add, was a correct diagnosis made of bipolar disorder.
Only those of us who have suffered for many years can appreciate your narrative and understand the poignancy and suffering behind the disease.
Thank you, sincerely

Oct 21 2:12 PM

Mike Miserocchi Says:

Dr. Rod
As a person suffering from Bipolar Disorder, Obsessive Compulsive Disorder (OCD), and
Post Traumatic Sress Disorder (PTSD), kindly remove your head from your Physician Hemmoriodial Disorder ( Ph.D.), and understand that many people, benefit, and in fact, have had great success in medications such as Serequel and Cymbalta. Please leave the taste test to those who eat the pudding—–US!

Oct 21 3:02 PM

kimbriel Says:

Oh well, Dr. Rod, I actually agree with you. But let the people who feel better on the psych meds keep taking psych meds.

Oct 21 3:34 PM

Mike Miserocchi Says:

Hi Kim
Just as a observation Kim, as though of us who know improvement through carefully monitored medications for psychotherapeutic reasons, I would not deny the person suffering from hair growth ailments ( such as my wife from chemotherapy), their faith and hope vested in Rogaine and Biotin.
It is all a matter of perspective.

Oct 21 4:07 PM

kimbriel Says:

Yeah, and that’s why I said: “Let the people who feel better on psych meds keep taking psych meds”. I’m not here to take away yours or anyone elses’ health choices.

Oct 21 5:38 PM

Dr. Rod Says:

Mike:

It’s always disappointing to see different points of view resort to personal attacks instead of intelligent discussions. In the spirit of the latter, I feel compelled to remind you that I have 12 years of studying nothing but mental health/illness and have worked exclusively in this field. Your physician, if he/she is a psychiatrist, has a maximum of 4 years of hands on residency experience in psychiatry plus whatever years of work experience. If your physician is a primary care physician, he/she has no educational or practical experience in psychiatry/mental health, save a lecture or two in medical school. So, my “Physician Hemmoriodial Disorder” certainly must afford me SOME degree of expertise on such matters.

Furthermore, my expertise and knowledge of psychiatric issues tells me 1) The likelihood that are actually suffering from all three of those disorders simultaneously is amazingly unlikely; 2) that the treatment of choice the latter two is NOT medication, but psychotherapy (and that your physician is negligent if he/she has not told you this), and 3) that if you define “success” as not feeling emotions (i.e. covering up symptoms), then yes, your medication is the powerfully “effective.”

I wonder if you apply the same logic to broken bones and take pain medication instead of having the bone reset? Or to a puncture wound and just put a band aid over to control the bleeding instead of stitches? If symptoms control = success, then you are cured. I wonder why no other branch of healthcare adheres to this philosophy? Why do we keep searching for cures for AIDS, cancer, or viral infections when we already have the ability to control the symptoms they create? The answer is because we are not satisfied to control symptoms; we want to cure syndromes. Mental health does not adhere to this and has settled for unethical nontreatment, choosing only to control symptoms.

Oct 21 7:05 PM

kimbriel Says:

But Dr. Rod, in DSM-IV land, the disease IS the set of symptoms. No “symptoms” (thoughts, behaviors, mood extremes, and perceptions) = no disease. Oh, except if you were labeled with the disease at some time in your life. Then, even if you’re not having symptoms, you still have the disease :p I heart psychiatry.

Oct 21 7:48 PM

ls Says:

If Mike’s doctor is a psychiatrist then he/she could have just as much work experience in “nothing but mental health/illness” as you have had, Dr. Rod.

Oct 22 1:04 AM

Dr. Rod Says:

Is:

Indeed. And there are many professionals out there with much more experience than I. The simple point I was making is that I surely have some small claim of expertise to offer an informed opinion on such matters. Mike seemed to suggest that I did not.

Oct 22 9:36 PM

Debbie Says:

To those of you who aren’t sceptical of psychiatric medication: If your psychiatrist told you that you had to be taken off of a certain medication because it was detrimental to your physical health, would you say no?

Mar 10 4:02 AM

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