Getting Off The Meds

I was depressed . . .

I had been on this particular anti-depressant for a year, had been on others before that  (since my husband moved out).   The medicine, coupled with therapy, helped me during a very, very bad time.   With the medicine I was better than I had been during those darkest days.  But was I still depressed?  Absolutely.  Because of my general poor health, diet and limited success on the meds,  “they” (meaning my psychiatrist, but “they” sounds as impersonal as it  felt then)  switched me from one anti-depressant  to another, then another.    I had made strides, was functional to a certain extent, but still had what they called “major episodic depression”  . . . and when I was bad, I was really bad.  And with that last medicine I was on,  I felt numb,  less creative  and I suffered from fatigue —  falling asleep behind the wheel — kind of fatigue. Emotionally, it seemed as though I had reached a plateau but from time to time, I would just  fall off.

I simply wasn’t snapping out of  it.

Then, after a particularly rough descent into a depressive episode, they suggested that my condition be treated more aggressively.  In addition to stepped up therapy, there were more meds prescribed — “add-ons” they called them — additional medicines to take on top of the daily anti-depressant I was already taking.

The first “add-on” affected my eyesight.   I could barely read anything.   Also, it made me  manic,  it wasn’t unusual for me to be  doing landscaping at 2:00 am and I– could– not–stop.  (My yard looked great, though, but I digress.)

When I complained of not being able to see, and of being so agitated and let’s face it, weird,  they switched me to a different add-on.   Additionally, as part of a larger plan, since my general health and diet had improved,  I requested a change in my daily main anti-depressant and asked if I could go back to the one that didn’t make me fall asleep in odd places.   They didn’t allow me to change at first, but since my fatigue had gotten worse– almost falling asleep at the kitchen sink — and I was eating better than before, they said I could change.   (Reportedly, without adequate nutrition the other anti-depressant could cause seizures.  Wonderful.  But I had been eating better, and promised to continue doing so.)

So they instructed me, in writing, to:

Week One: 

  • Cut the dosage of my  current  main anti-depressant  in half,
  • Discontinue taking the first add-on
  • Begin new add-on medication, one I’d never taken before.

Week Two:

  • Discontinue current main anti-depressant completely,
  • Begin another anti-depressant, one I’d used before but had fewer side effects (meaning, I was awake)

In other words, my doc had told me to switch both my main anti-depressant and the add-on  during a two-week period.

Okay, whatever,” I thought.  I just wanted to be able to see, be conscious, sit still and maybe get some creativity– some of the “me” back.

I followed the instructions.

But I had problems with the new “add-on.”     That particular medication warned that if you get a rash from it, especially in your eyes,  you could die.  My eyes started itching,  I had that kind of rash.    Since they didn’t know which meds were causing it, and it was potentially fatal, I was told to stop taking everything, cold turkey.   So, I did.

No one told me there could be side effects, no one told me there was withdrawal.

First I became so, so dizzy.  I would walk into door jams, stumble around in my little house.   I had been in the midst of home improvement projects that required me to be up on a ladder.  I couldn’t even think of it.   My equilibrium was off.  Way off.

Then came the nausea and diarrhea.

Because of my history, Confessions of a Skinny Mom, I am no stranger to stomach ailments.  But this was different.  Sudden flu or food poisoning-like symptoms hit me, hard.

Damn, am I sick?

I kept having to go to the bathroom.   “Whoa,”  I thought. “This isn’t normal.  Had I eaten something bad ? ” I wondered.

Without going into the gory details, suffice it to say that I stopped keeping track of my bathroom visits after eight  trips to the toilet in an hour.  I was too sensitive to sights and smells to camp out in there.   Ewwww!  So back and forth I went.  (No pun intended.)

Next came the brain zaps.  It’s so hard to describe.  It’s like getting hit in the head with a heavy blunt object, but without the external pain.   Sudden flashes of light out of nowhere, caused by nothing, but strong enough to make me stop talking, lose my train of thought, blink, cringe, shudder,  look around

. . . at nothing.

Then light became my curse.  It hurt to open my eyes, it didn’t matter whether it was artificial or sun light —  any light hurt.   I started to wear sunglasses inside, at night.   Sound bothered me as well, but not as much as light.   Unless — it was the phone.    I couldn’t hold a phone to my ear;  I thought my ears would bleed.   I had to talk on speaker or I couldn’t talk at all.

I lived like a vampire, a  vampire with the runs.  (TMI?  I know,  it was too much for me, too.)

I shouldn’t have been driving. 

Still,  the kids had to get places and I didn’t know what was wrong with me.   I tried to work through  it.  It’s a mom thing.  I was trying to play it off.  Wrong.  So wrong.  Clearly I hadn’t learned my lesson from my previous illnesses I ignored.  “Almost F*cked to Death.”    And did I mention it was Halloween and I have five kids?   I did the best I could, and I did more than I should have, but it wasn’t much fun that year.  Not at all.   I told the kids I was sick and they’d have to be patient with me.  I usually enjoy Halloween, but that year?  — well, it was just too damn scary.

On the road it felt as though cars were coming right at me, like some sort of horror movie and awful amusement park ride combined . . . on drugs.  I missed turns in my own neighborhood.   I yelled at the kids to be quiet because I had to concentrate on what I was doing.  It took so much focused energy to go forward.  I white knuckled the steering wheel, for dear life.  It was counter-intuitive, really. I mean,  I know not to drive while under the influence.     But my impaired driving was because I  wasn’t taking anything.   It didn’t make sense.  Bottom line, though,  my judgment, reflexes, everything was impaired.   I should not have been on the road.  

And I was so weak.  So weak.   I recall going to the store and needing a cart —  to hold myself up.   I couldn’t walk without swooning, and I had to close my eyes from time to time, even with sunglasses on.   Like having a bad flu, I hurt all over.

Mentally, it took its toll as well, mainly because I didn’t know what was happening to me.  The brain zaps and the light sensitivity,  the nausea and the lack of depth perception and compromised equilibrium — it all started to affect my judgment.    I wouldn’t say I was suicidal, exactly,  but I wasn’t thinking right.  I was agitated, confused.  I thought I was going crazy.   It wasn’t pretty.  When I thought of what I went through alone, and what could have happened, I still shudder.  I wasn’t thinking  clearly at all.  I didn’t have another adult to talk to about it.  Paranoia had set in.

I was alone on that worst first night, fending off invisible blows to my head in a darkened room that seemed to keep spinning around.  But a friend happened to call me, an acquaintance, really. I answered (on speaker) out of desperation, I was close to quiet hysteria.   She casually asked how I was doing.   Now I had diarrhea again —  of the mouth.  I quickly  told her I wasn’t doing too well, confessed I had been on meds, developed  side effects and stopped taking them pursuant to doctor’s orders but was freaking out!    And I described to her how I felt.   Poor thing,  I know she wasn’t expecting so much information from me, but she listened, and was concerned.   (I probably sounded like a maniac.)   She talked me down from some of my agitation and convinced me to call the doctor.  To this day I don’t remember who called me that night.

But the next day was Sunday, and Halloween, and did I mention I have five kids?  Poor kids.  I wasn’t my normal Halloween loving  self.  We got through it.  By the time I got a message returned from my psychiatrist and told her how I was feeling,  she  said that I sounded sick and should  see a doctor.  Ya think?  Wait.  What?   Isn’t SHE  a doctor?   Yes, yes, she is, but she suggested I  see my regular primary care physician or go to the emergency room.   I  didn’t feel up to taking myself to the ER so I  waited to see my regular doctor.    He told me he thought my symptoms were from the withdrawal from the first anti-depressant, not the rash-making add-on.  He said I could keep working through it and see what life is like off the meds.

Huh, I thought.  So far, life off the meds hurt like hell and . . .  IT WAS STARTING TO PISS ME OFFEverything was starting to piss me off.   Ahh yes, another lovely discontinuation effect of which I had not been warned.

The Shining

Rages, they call them.  Sudden fits of anger.  Lovely.   I should have been chained to a pipe in a dark basement with nothing but a pissy mattress.

When I felt well enough to do research, I found that I was not alone, that this medication is almost never stopped cold turkey because of the horrific “discontinuation effects.”   Patients usually plan to ween over a period of months,  not days, and still suffer.   Some liken the symptoms to heroin withdrawal and even suggest that cold turkey discontinuation only be attempted while hospitalized.  But it’s not about a craving for the medication, anti-depressants don’t really work like that,  it’s about the physical withdrawal the body goes through when the medicine is taken away.  Because the withdrawal symptoms can be so debilitating, patients often plan the withdrawal during a time when they can take off work and all other responsibilities. Silly me, attempting cold turkey withdrawal while caring for five kids — at Halloween.   But I didn’t know.

Armed with this information,  I talked to my psychiatrist again, this time in person, and explained all of my symptoms and what my other doctor had said.  She advised that my only choice was to  start taking a low dosage of the same  anti-depressant again and ween slowly from that.

What?  Start taking it again?  What? 

Hoping that I’d already suffered through the worst of it, I decided not to start taking the drug again.  My shrink apologized for not telling me that there could be “discontinuation effects.”  How could she not tell me?  Yeah, I was pissed, sitting there in her office, with my sunglasses on, blinking after the brain zaps.   I was pissed.  And I looked like hell.

The zaps went on for months, as well as the light sensitivity, lethargy and dizziness.   It was not unusual for me to wear sunglasses in the grocery store, at night, leaning on a cart.   Pitiful.  But don’t talk to me.  I might not be nice.  Shhhh.

Imagine having a hangover while on a spinning carnival ride while seated next to someone who annoyed the hell out of you and who kept clocking you in the head.   Yeah  . . .  like that.

It’s been almost a year now.  I’m still suffering from some long-term discontinuation effects.   I  have trouble putting  a phone to my ear, I never go anywhere without sunglasses,  and I’m often suddenly irritable — but less so now.  I have other physical symptoms — but these may or may not be a result of  dealing with depression without medication.   I don’t know.

Regardless, I wish I would have known that there was a possibility that I would suffer so from simply stopping the medication.  If I had, I would have thought twice about starting this particular drug in the first place.  Had I known — what I learned too late,  I absolutely would have planned my discontinuation of the medicine so very differently, or at the very least timed it differently.

And this I know:  I will never take anything again without researching not only the possible side effects while taking the medication, but the possible effects of discontinuing it.

In the end, I am just very grateful that  I didn’t accidentally or intentionally cause any harm to myself or others while going through the withdrawal.

It was a horrible experience.

Just Me With OUT . . .  Cymbalta.

Depression hurts . . .  Cymbalta can help.   But if you stop taking it . . . beware.    Bwa ha ha ha!      www.CymbaltaWithdrawal.com

P.S.  I am not against the use of anti-depressants, or add-ons, or whatever it takes.  And I know that some people do not suffer any discontinuation effects.   My medicines got me off the floor during a unspeakably painful time.  So no judgment on people taking medicine for depression.  I do believe, however, that discussion of the type, timing, dosage, length of treatment and effects of discontinuation of treatment should be initiated by the prescribing physician and thoroughly discussed.   There was much I didn’t know, and wasn’t thinking clearly enough to ask or research on my own.  I was uninformed, and that’s never good.

13 responses

  1. And you psychiatrist should be SHOT for not ever mentioning the withdrawal issues, walking with you through it, or creating and INTELLIGENT plan to wean you off under close observation!!!!

    BTW — I’m one of those people for whom Cymblata has been a positive game-changer. With Fibromyalgia and a life-long tendency toward depression, it’s given me a whole new existence. Thanks for mentioning that you are aren’t anti-meds or anti-Cymbalta. Every human body responds differently to different alchemy.

    AND YOUR PSYCHIATRIST SHOULD BE SHOT.

    1. Thanks, needless to say I haven’t been back to her. If I consider going back on meds I’ll discuss it with a different doctor. Good thing I wasn’t packing.

  2. Wow…that is so awful! I’m so sorry you had to go through that. I have dealt with depression for many years but I have always stayed away from medication. While I support those who chose that route, I know it is not for me.

    1. Yeah, it was rough. It’s so important to have a plan and good doctor, medication or no. I’m looking for ways to deal with it without medication for now so I hope you’ll share things you’ve found helpful. But, like you, I support the choice for medication for others, it is a very individual, personal, medical, situational choice. The bottom line is, Depression Hurts. It does.

  3. [...] do it all,  taking care of me.  Blah, blah, blah.  I had gotten off the daily meds, see Getting Off The Meds, but I still have to be able to combat the depression without them.   Universally the pros say [...]

  4. [...] eating habits have helped tremendously.  Though I’m off the daily anti-depressants now, see Getting Off The Meds,  I’ve found that changing my lifestyle and removing triggers — as much as I can [...]

  5. Ah, the good ol’ brain zaps. You sent me here from my “Defining Crazy” post, and I’m happy you did. I never endured the kind of withdrawal you did…that sounds like a nightmare. I have gone on and off a buttload of drugs and danced with myriad side-effects, though. I have learned NOW to ask direct questions about possible side effects, when I should worry, and what is the goal of the medication we’re trying this time. For whatever reason, it seems that most docs don’t bother with these details. I don’t know if that’s to avoid psychosomatic symptoms, or what, but it’s lame. Well informed consent my arse. I hope that a year later, things are going better. Thanks again for dropping by my post.

    1. I’m so glad you read this. I really enjoyed your post as well. Yes, the “discontinuation effects” were a nightmare! I completely agree, I will ask so many questions for any medication I’m prescribed in the future. Many questions. I’m better, more alert, the rages are less intense and less frequent. The depression is still there, I’m just working on other ways to manage it. Thanks for stopping by and commenting.

  6. [...] it up on one side of the house.  Then, well, stuff happened, and  I  changed and  eventually went off my meds, which gave me vertigo, poor equilibrium, extreme dizziness, and severe sensitivity to light.  I [...]

  7. […] Somewhat related:   Getting Off The Meds […]

  8. I discovered the fun of this in the mid 90s, when the few people who knew of it thought it was fairly rare. Zoloft was also on special limited release so I’d be in the pharmacy twitching like a junkie, begging the pharmacist to let me have one pill until my shrink could call in for an authority script. Fun times. I wonder how many pharmacists I personally educated on the phenomenom?

    1. I had postpartum depression with my first so my doctor prescribed it for me to start taking during the end of my second pregnancy. I decided not to take it because the research was inconclusive about how it might affect the baby. I am so glad I didn’t take it because now there are all these commercials about Zoloft and birth defects. Sometimes the pros don’t know everything. I bet you did educate the pharmacists.

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