When SSRIs Are Not Your Friends

Portrait of Adele Bloch-Bauer I (1907).

Oil and gold on canvas by Gustav Klimt.

[larger view].

I have not been writing much recently because I've been quite ill and haven't even managed to leave my apartment for the past week to locate a stable wireless connection.

Actually, I am not ill in the strict sense of the word as we understand it. Instead, I am ill because I am experiencing withdrawal from the last of the so-called "mood stabilizing drugs", citalopram, that the doctors got me hooked on before they unceremoniously dumped me from their program for poor people roughly six months ago. Even before this occurred, I was never convinced that either of the pharmaceuticals that I was using was at all helpful to me.

At first, I tried to quit all these drugs "cold turkey" but I became so physically and emotionally ill that it was absolutely unbearable. My colleagues, who were all more clear-headed than I was at that point, told me to taper off these medications gradually. So that has been one of my many projects this past six months. I first focused on quitting Zyprexa (olanzapine) on my own, which caused me a fair amount of physical and emotional distress, but I managed to deal with that. After I quit that drug, I began working on citalopram.

Quitting citalopram has been nothing but unmitigated misery -- far, far worse than Zyprexa. In fact, I can now understand why some people continue to take this medication for the rest of their lives even though it does not help them at all. In my case, every time I decreased my dosage by as little as 5mg each month, I went through a withdrawal that lasted at least 4 weeks, and often 6 weeks, so I was experiencing withdrawal of varying severity all the time. My withdrawal includes symptoms such as truly horrible, intense headaches, nausea and vomiting, severe dizziness, chills and sleeplessness (and when I do finally sleep, the nightmares are terrifying). As if my physical symptoms weren't bad enough, my moods have been even worse since I am suffering intense anxiety, agitation and irritability and my emotions yo-yo erratically between elation and despair on a moment's notice (similar to a rapid cycling bipolar disorder, which I do suffer from anyway, except worse, of course). All this emotional noise also means that I can't concentrate long enough to write a coherent sentence nor to think clearly enough to clearly assess why absolutely everything in the world frustrates me to the point of wishing to scream or weep nearly constantly.

Basically, SSRIs are no one's friend -- certainly not mine anyway. And worse, according to my calculations, I have roughly three more weeks of this biochemical torture to endure, which is the reason I mention this here. Well, that is one reason, but I also mention this because the terrible global economic situation has made it appallingly obvious to me that I will never again be employed in any capacity, so keeping secrets about my mental health and all the travails it causes doesn't benefit anyone else and revealing them here doesn't damage me any worse than I've already been harmed.

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Please hang in there. I am so sorry you have gone through such hell and I know it isn't over, but it will be over. It will not last forever. I am so angry on your behalf and for all the people who have been sold a bill of goods. Making a profit is one thing. But it is outrageous, immoral, and skanky to make a profit on the back of people's misery with promises of a cure, making more profit by keeping people on drugs because the misery of withdrawal is worse than the misery that brought someone to seek help to begin with. For anyone interested here is a link to an interesting, enlightening, and maddening article.

I'm sorry to hear you've had such problems with withdrawal. I didn't realize how lucky I was when I tapered off the first time with no problems.

st john's wort, which is has no medically valid research to support its purported "benefits" is worse than worthless for me. the best that it does is make me incredibly, astonishingly depressed, while at worst, well, it makes me suicidal. my allergies and asthma prevent me from using marijuana and also, due to my inability to afford either medical care or legal representation, "medical" marijuana is completely out of the question.

Thank you for giving words to the internal anguish you are experiencing.

I am (ostensibly well-)trained in medicine, and coincedentally studying (clinical use and guideline) materials on the substances you are detoxing on.

I find great disconnect in our culture between accepted "dharma" ["...(x%) of people studied experienced symptoms of withdrawal, blah-blah-osis..."], and actual, described experiences themselves.

I am reminded that if we, as scientific people, take initiative to inquire and measure, we must do more; we also must feel -- and in allowing the doors of perception and conception to swing widely open, then bring both faculties (the totality of mind and the totality of feeling), unreservedly integrated into our lives and practices (through the "doing" faculty). This is a huge and life-long task, and to my experience, it is a path of deepest self-responsibility and service to others.

In my life, I have felt and sought that this is a direction that brings profound sanity -- and not so much in having exogenously-internalized chemistries temporarily work to lend structures to our evolving faculties. They can do so only for a time, and a not-very-long one at that. Of course there is room for the time-tested disclaimer that medications can and are useful in punctuated cases and periods). I suspect your own words indicate that the usefulness period is passing. Now there may be a different kind of struggle.

Great success to you in walking through and OUT. As real encouragement, the human spirit is a very potent set of forces, and all of them, though perhaps varyingly opaque to you recently, are in your person right this moment.

And as a reminder of yourself to yourself, I truly enjoyed your biography. It is overfilling with the muse and reverence, sensitivity and life. May those qualities once again flow through your person.

With care, Andrew Dorfman

I was wondering how you were doing. I didn't know if you were able to get your meds and how you were coping with this. I am sorry to hear how rough things are for you.

I just received a letter notifying me of a change in my health coverage. I'm dreading calling them monday morning to see how it effects getting my meds.

I'm so sorry to hear you're feeling so down. I'm very grateful that I don't have to worry about paying for my own medication. (I used to take citalopram; on sertraline at the moment.)

I've found this to be of some use - if only to make the difference between dead and alive. At least now I've got a chance to make some changes and maybe get my life back on track. Of course, that's easier said than done but ultimately the changes are more important than the drugs.

You're not alone. I don't simply mean that there are fellow sufferers, but through your blog you're part of a community of people who are interested in you.

I improved a lot on high dose B12 daily. You can buy a cheap bottle of 1000 ug pills at Walmart or anywhere.

I hope you will be feeling better soon, Grrlscientist! I was getting worried when I noticed that you weren't posting as much. Hang in there! You've got a lot of friends who care about you!

Yeah, I was concerned as well. I am glad to hear from you though distressed at what you are enduring right now.

I take Lexapro (Escitalopram) which has been very successful for me. I do take a fairly aggressive dose of it (40 mg/day) and it does greatly help with stabilizing my anxiety and my propensity for "fight or flight" flare-ups.

I have been through very bad med withdrawals twice, once was an ill-conceived attempt to try a different med, the second time was the successful switch to Lexapro. Though, I did endure about two months of living hell during the transition.

I know all about the vivid, lucid, frightening dreams you talk about. When I have them, they play out almost like a sci-fi, horror/thriller movie with a rather solid plot with fairly solid story logic and all. My dreams of this type often involve aliens, nuclear explosions, giant robots/machines, and fantastic, surround sound. On one level, I kind of enjoy them but, sometimes, I wake from them and spend the next couple of days shaking it off.

Lately, I have been working, staying up until four or five in the morning, then when I do go to bet, I cannot sleep because my mind is racing so fast with so much mental noise going on inside my head.

What these people have done to you by dumping you off of the medical program is cruel and dangerous. I do not understand how our society can do this to people. It is inhumane.

Grrl, you have my contact info if you need to talk. I'll hang in there for hours with you if that is what it takes to help.

--JK--

jeff -- i know exactly what you are talking about! those dreams are so vivid and violent that they leave me upset and afraid to crawl out of bed on some days, as has been the case nearly every day this past week.

So sorry, dear heart, that you are back on this roller coaster. Those of us without mental illness (at least not that we admit to) cannot comprehend the great experiment the pharmaceutical industry is placing on society. I know that I sound like a mom here, but I really believe that drinking lots of fluids (not your favorite beer) and running or doing something really sweaty every day will move the blood to the ends of your nerves and into your brain. It will help flush your system and maybe get original endorphins firing. I wish there was some way I could reset your mental images. Depression is s**tty stuff.

Eli Lilly ZYPREXA LIES!

Zyprexa cost me over $250.00 a month supply and has up to ten times the risk (over non users) of causing diabetes and severe weight gain.

Zyprexa which is only FDA approved for schizophrenia (.5-1% of pop) and some bipolar (2% pop) and then an even smaller percentage of theses two groups.

So how does Zyprexa get to be the 7th largest drug sale in the world?

Eli Lilly is in deep trouble for using their drug reps to 'encourage' doctors to write zyprexa for non-FDA approved 'off label' uses.

The drug causes increased diabetes risk,and medicare picks up all the expensive fallout.There are now 7 states (and counting) going after Lilly for fraud and restitution.

Only 9 percent of adult Americans think the pharmaceutical industry can be trusted right around the same rating as big tobacco.

---
Daniel Haszard

It's all over the news now,Eli Lilly whatcha gonna do when they come for you?

Zyprexa cost me over $250.00 a month supply and has up to ten times the risk (over non users) of causing diabetes and severe weight gain...

Zyprexa which is only FDA approved for schizophrenia (.5-1% of pop) and some bipolar (2% pop) and then an even smaller percentage of theses two groups.

You something folks, I get really sick and tired of all of this conspiracy crap and then promotion of "natural" or "alternative" meds. Grrl is correct, when it comes to St. Johns Wart and other similar herbs and potions, there is no scientifically valid evidence that supports the efficacy of just about all of them. Further, many of them are shown to be worse than worthless, in some cases they are actually dangerous.

"Big Pharma" is neither pure villein or totally benign. The truth lies in between with some players being better than others. I can point to myself as one anecdotal example of an SSRI class anti-depressant that has quite likely saved my life. Many lives are saved by very good drugs every day. Modern medicine would not be possible without the many life-saving drugs that "Big Pharma" has developed over the years.

Do I like the current situation of mass-marketing drugs to the general public or the very questionable ethics of the sales reps that push these drugs? Hell no! I think some of the things these people are doing are deplorable. Every time I see an anti-depressant advertised on TV, I cringe. I get just as angry when I hear about some of the tactics used by sales reps. I believe strongly that there needs to be some rather severe regulations limiting how drug makers can market their wares.

But, none of this takes away the wonder a good drug can be for someone who is suffering or is in danger of loosing their life. Make no mistake, psych drugs are every bit as life saving as is an antibiotic or a blood pressure dug is when -- and here is the great caveat -- when they are properly prescribed. It certainly has been so in my case. This is where the mass marketing is going so wrong right now. To many of these drugs are being "pushed" into uses that they were never intended for nor have they been properly studied for.

I have no doubt that if Grrl had access to proper medical care and were under proper treatment including being prescribed the proper medication and dosages, she would be doing much, much better. Would she be perfect? Cured? Not likely but, she would not be suffering at the level she is now. And that can make all the difference in the world.

[/end rant]

I'll take Citalopram over OCD any day. I've been on and off it a couple different times without the degree of discomfort you experienced. I'm sorry you had such a hard time.

The stuff is generic, costs $9 a month and lets me lead a normal life. I can deal with staying on it. No big pharma is getting rich off the stuff.

Dear Grrl, I hope that your body will soon adjust to being off of the drugs. Please keep blogging about your progress. There are a lot of people out here who care about you and want you to be happy.

thanks everyone, for your kind comments and emails. even though nothing has changed, your kindness and empathy have somehow made things easier, more bearable, somehow.

Keep at it. I'll try write again later when I find time. (Absolutely swamped, no $$ coming in, although some is "supposed" to be coming..., but more than enough to keep my mind busy either way!)

I know this will be a very long way from your mind at the moment, but do you have a daily exercise program (ideally with other people) or at least some routine things you do away from home? Like your subway art photos. (Which were what originally brought me to your blog for what it's worth.)

By DeafScientist (not verified) on 08 Feb 2009 #permalink

Just so you know, marijuana can be brewed as a tea. Not trying to advocate illegal activity or anything here, but I've seen the stuff help a lot of sick people.

Wow, having been through a less intense SSRI withdrawal, which was bad enough, I really hope it gets better for you soon. I know I found that it was almost impossible to describe what it felt like, since most people hadn't experienced anything like it.

On another note, I want to thank you for writing about this. Mental health problems are very prevalent among scientist ("You wouldn't believe how many scientists I see in here" was one of the first things the psychologist I saw I grad. school told me), but there is also a fear of discussing them.

(I'll also second Jeff Knapp's rant.)

Don't! Give! Up!

By Pierce R. Butler (not verified) on 09 Feb 2009 #permalink

Ouch... Transitioning either on or off ADs can be pretty nasty. My experience is that any change in dosage brings out all the meds' side effects, in spades, and that sounds about like what you're getting.

My sympathies, and some comments in general:

1) As far as I can tell, St. John's Wort is just a fairly weak SSRI, with all the usual side-effects and other hazards of same.

2) As a bipolar, you should never be on an SSRI (or semi-SSRI such as Effexor) without also being on a mood stabilizer such as lithium. AD's without a stabilizer can make your bipolar much worse! (FWIW, I've heard that lithium citrate is a bit easier on the stomach than its other salts.)

3) How (the hell) did you get "unceremoniously dumped" from the program? Cutting off funding for someone's meds like that is just grossly irresponsible! (So is putting someone on expensive meds, if the funding is known to be temporary!)

4) As noted in prior comemnts, antidepressants (and mood stabilizers, for that matter) need medical supervision, and it really doesn't sound like you're getting proper medical care!

By David Harmon (not verified) on 09 Feb 2009 #permalink

Grrl. I hope you're getting through this OK. Time zones seem to be conspiring against us, so could you email me, so that I know how you're doing. You know I'll be worrying about you anyway.

Grrl, I am so sorry to hear of your trouble with getting off these nasty SSRI's. I am also curious how you got "unceremoniously dumped" without a good referral--that borders on patient abandonment, and depending on the circumstances you might look into legal action.

As for tapering, my personal experience has been, and others may vouch for this as well, is that when one is experiencing anything more than minor withdrawal symptoms, it means you are dropping down too fast. I have known people to take as long as 2 years to get off an SSRI, and dropping 5mg a month may be too fast for you. There is no rush with this--it is much better to be sane and on the drug a bit longer, than to have major problems with the withdrawal and destroy your life in the process. Not a good trade off. Go slower until you reach a tolerable level of drop, even if that means cutting the pills into 1/8ths---remember it takes 4-6 weeks for these to kick in in the first place, so coming off them may take 4-6 weeks every time you drop the dose. In fact, it might be a good idea to up your dose slightly right now, and see if you feel better. There is no harm in doing that, and you can drop it down again in a few weeks (but more slowly next time). Keep us posted- we are pulling for you.

to answer your questions, patient, the public hospital where the mental health clinic is that i went to "closed" my file (although i suspect they actually lost it.) thus, no referral, although a referral would do me no good since i cannot afford either the meds or the psychiatrist, anyway. and again, i am not convinced that these meds helped me anyway.

[for the record, i also was given lithium, which gave me severe migraines, and then I was given carbamazepine, which made me extremely agitated and EXTREMELY suicidal. then i was given seroquel in combination with citalopram for awhile, but seroquel made me gain weight, which horrified me, so it was replaced with olanzapine]

anyway .. i spent three months trying to get the clinic to re-open my file, but they refused to believe that i was a patient there, nevermind that the staff and some of the docs there had seen my face at least once per month for the previous year. i guess they are regularly confronted with homeless people who like to get these meds to sell on the streets (or something?) since this is a public hospital, most of the people using this clinic are homeless, so (i guess) this is not an uncommon event.

because i was hoarding medications while taking smaller and smaller doses for months, i managed to save enough to taper off the meds slowly (well, i thought i was taking it slowly), but i am almost out of these meds now, which means that i am going to stop taking them one way or another within the next few months.

but, as per your suggestion, i could take a tiny dose today just to alleviate my symptoms (i guess i will since my moods are somewhat .. difficult), but i am just postponing the inevitable, really.

one more thing: i want to point out to those visiting this blog essay that i am not intending this essay as an indictment of SSRIs, big pharma, or modern medicine. instead, i am writing about my experiences for people to learn from: SSRI withdrawal is no picnic.

further, my experiences are symptoms of a sick society. i am extremely angry at this so-called "civilized nation" for its selfishness and cruelty when it deals with all "those people" who most americans view as being "the problem" -- the unemployed, uninsured, homeless, despairing, mentally ill, drug or alcohol addicted, who are isolated or alienated from society in general -- thousands of people who fall through the cracks and end up paying the price with their health, their futures and their very lives. where is the civility in that?

Grrl - Gee, the USA is # 1 in action movies, bank bailouts, high-fructose corn syrup, military spending, "reality" shows, greenhouse gases, and national egotism - and now you want us to take care of (non-CEO) people too?

C'mon - who could believe in that much change?

Actually, of course, there is a movement for a serious national health care program: see http://www.pnhp.org/blog/ for starters, and push your congresscritter to co-sponsor HR 676; maybe the Labor Party has a project in your area...

By Pierce R. Butler (not verified) on 11 Feb 2009 #permalink

I am turning sixty soon, with over four decades of Big Pharma invading my system. I am Bipolar, with a few other axes to my name. It started with Valium for my nerves.
After an intense period of self dictated lifestyle hygiene, reducing all meds to the minimum and staying on my dedicated route of care, I am proud to say I have not had a mood change in over five years.
I was also a rapid cycler.
Grrl, I hope all personal strength for you.
Your life is yours only to dictate too. Make the best of it.
Birdo, a DYHA and I wish you well.