Four Surprises in Transitioning off My OCD Medication

Bii for now Viibryd!

With Luke and Lily as our puppies, we already have a family.  My heart is full, but my husband and I would still like to have human children someday.  The medication that I was on for OCD is not generally considered safe for pregnancy, so something had to change before we could move forward.

I found a psychiatrist with fertility experience, and through discussions with her and weighing pros and cons, we agreed I would try going off of my medication.  

This has been a big step for me.  I started on Zoloft when I was in grade school.  I've switched medications around a number of times since then, but I've almost always been on something.  The few times I have been off meds, it hasn't gone well - everything inevitably crashes, and I end up going back on pills.

I've had psychiatrists and therapists tell me that I might never be able to go without medication.  I've also been warned that sometimes when you have an anxiety disorder, your natural anxiety levels can get so high that they can prevent you from getting pregnant or cause issues for the baby.  In some cases, it is actually safer for mom and baby if the pregnant woman is on something, provided the medication is approved for pregnancy and everything is overseen by a doctor throughout.  

The pill I had been on the past few years was a relatively newer brand without much research in terms of pregnancy. Since I would have to transition to something else anyway, and since I had been pretty stable for awhile, my doctor and therapist agreed that I would try going "clean."  This way, I have some time to feel it out before we start family planning.  Ultimately, if it doesn't work, I'll get back on something that the doctor approves for pregnancy.

I have been off of the pills for a few months now.  It has not been easy, but it also has gone much smoother than previous attempts.  That said, here are the four biggest surprises so far:


1.  Life has become an emotional roller coaster.

The highs are higher and the lows are lower.  Small setbacks can send me crashing down and feeling hopeless, but one good day can offset a week of the blues.  For better and for worse, every emotion just seems to be hitting at a higher level.

2.  Sometimes declines are unconscious.

Have you ever put on 10 pounds?  You don't notice it as it comes on a half pound at a time, and then one day you realize your pants don't fit.  My OCD symptoms have similarly snuck up on me.  For example, I didn't really feel my reassurance seeking behaviors and intrusive thoughts increasing day by day.  However, I realize now that they are considerably worse than before and it is something I will need to keep an eye on personally and in therapy.

3.  The anxiety and depression increased more than the OCD symptoms.

I was worried about my OCD getting out of line, but it is actually the anxiety and depression that have been the bigger bullies now that the medicine is gone.  Something as simple as balancing my schedule can seem overwhelmingly daunting, and I am constantly jumping to worst case scenarios in my head.  I wake up many mornings with a sense of dread completely unrelated to any intrusive thought.  So far, this generalized anxiety has been one of the toughest things to battle.

4.  It threw off my cycle.

I had no idea that getting off my medication would have an effect on the timing of my periods.  For a few months, I felt like I was getting my period every couple of weeks.  It wasn't until I went to the gynecologist that he explained that psychotropic medication changes can throw off your cycle because it is your brain that tells your body when to have a period (makes sense!).  To be safe, he did some tests, but everything else looks fine.  Luckily, he told me it should balance out, and this last month my timing seems to be returning to normal.


I'm about four months out now, and I just have to continue to take it a day at a time.  Maybe I will find a way to successfully use the tools from therapy to manage my symptoms on my own.  Maybe I will have to go back on some sort of medication.  For anyone out there on meds right now, there is no shame in needing medication.  Just like any other illness, you prefer not to have to remember a pill every day or worry about side effects, but if you need the pills you take them.  If going back on is what is best for me and my potential offspring, so be it.  But for now, Laura's Adventures in Brain Chemistry will continue.  Onward and (hopefully) upward!

Ninety Percent Sure

Read: Risk VERY VERY Small

A few weeks ago, after so much waiting, a number of anxious phone calls and a spout of me crying in a small hospital room, we finally got the results of the pre-pregnancy genetics tests back.

On the test that screened for over 200 potential genetic problems, we discovered that Nathan and I are each carriers for one disease.  However, since it is not the same disease, the risk that we have an infected child is 1/4,400 (0.0227%) for one of the diseases and t 1/3,520 (0.0284%) for the other. 

As for the other genetic test for Nathan, the results came back with a 90% chance that he doesn't have the disease.  Combined with the fact that he doesn't meet the clinical criteria, the doctor felt pretty confident that he does not have it.  However, he did say that they could be even more sure if they compared the results with a blood test from a family member.

Now, this is where I feel I really had a triumph over my OCD tendencies.  Something I struggle with that is very common with OCD and anxiety is that I find it very hard to live with any doubt.  OCD feeds on doubt, and so you want to be 100% sure of everything.  This can lead to all sorts of unhealthy behaviors from checking and rechecking to unhealthily obsessing over horrible possibilities that have only a small remote chance of either being true or becoming true.

You have a feeling that somehow you will be on the wrong side of statistics.  If there's a 97% chance that something is good, it is very easy for someone with OCD like mine to focus on that lingering 3%.  The most ridiculous part is that this fixation on small chances and the feeling that the unlikely occurrence is sure to happen only acts up when considering improbable bad outcomes.  

For example, if someone told me there was a 2% chance I would die tomorrow, I would be very uncomfortable.  I would spend the whole day thinking I was going to hit that 2%.  I wouldn't feel any safety in the 98% chance that I would be okay - I would feel doomed.  But, if it was reversed and someone told me there was a 98% chance I would to die tomorrow, I wouldn't focus on the 2% chance of survival and feel a lot of hope.  It isn't about a misunderstanding of how numbers or chances work as much as constantly fearing the worst while also expecting it as unavoidable.

But when we got these results, I was satisfied.   The odds from the overall couples' screening were clearly astronomically small, but I even feel good about the 90% assurance on Nate's major test.  I heard the results and didn't want to keep digging.

I know we can never with 100% certainty prove the negative.  Even comparing the results to a family member's results, the doctor admits that they still could not make a 100% guarantee.  The truth is that seeking any assurance higher than 90% won't really make me feel any safer.  Starting a family means accepting a lot more risk in my life.  I know by now that the OCD fears and worries aren't going to magically disappear, but accepting these results and feeling good about moving forward was a step in the right direction.  

So, here's to moving forward even when you're only 90% sure.  Sometimes, that's the best thing to do. :)

"So, what's your OCD thing?"

We're not just switch flippers.

You tell someone that you have OCD, and often that person's response is, "Oh, so what do you OCD about?" 

Please stop casually asking this question.

Don't feel bad if you have done it before... it seriously happens all the time.  I get it actually, and it's kind of sweet in a way.

Based on a basic understanding of OCD, you think I'm a little quirky.  Expecting that my answer will be related to hand washing or checking the toaster three times, why not ask? 

What you don't realize is that based on the reality of OCD what you have really just asked me is, "What are your biggest and most shameful worries and fears and how are you irrationally coping with them?"

Compulsions like hand-washing are performed in response to obsessions - major worries and fears that incessantly taunt their victims.  Some people with OCD do not even have observable compulsions and are mainly plagued by the obsessive thought aspect.  These issues do not make for light, casual conversation.

The "What's your OCD thing?" question reveals how little the average person knows about what OCD really is.  To be fair to the average person, even doctors don't always know.  Yesterday at my annual physical when I mentioned OCD to my new doctor she asked a similar question.  This is an educated woman with a degree in medicine, and her question showed me how surface-level psych training must be for family doctors. 

It's a tragedy that there is so little general knowledge on OCD, but there are still ways to be supportive to someone who reveals this part of their mental health history to you.  Here are four quick tips:

1.  If a coworker or acquaintance mentions that his OCD is bothering him, try asking how you can support him. 

2.  If a good friend tells you that she has OCD in private, admit that you do not know much about it but that you are there to listen to whatever she wants to share.  Try to let her control the conversation and what she reveals.

3.  In serious discussions of mental health with anyone, try to respond intentionally without casually brushing it off, making assumptions or cracking jokes.

4. Remember that it is okay to realize that you are in over your head.  Even therapists aren't experts on every mental health problem!  If a friend reveals something to you that you think may be a sign that this person is losing control and could be in danger or dangerous, admit that you are not an expert and try to get help from someone who is!