OCD and Medication

 

pills This week I’m sharing one of my posts from May 2012. I plan on being back next week with something new!

The topic of medication for obsessive-compulsive disorder comes up a lot in blogs, and always seems to incite lively conversation. There is talk of the stigma surrounding medication; some patients admit to feeling weak, or like a failure, for needing meds, even though intellectually they know it’s no different from taking medication for any other illness. Others are adamant about never taking anything because it’s just “not for them,” while some are completely fine with taking meds. There are those who say meds have wreaked havoc on their lives, while others swear that medication literally saved their lives. Doctors themselves confirm that the use of psychotropic medication involves a lot of “trial and error.”

Everyone’s story is different, of course, and I think that’s what makes the issue of medication for OCD so complicated. There’s no set protocol. What helps one person may hurt someone else. What works for someone now might not work for them in six months or a year, or it’s possible one particular medication could be helpful for their entire lives.

For me, the question that often seems so hard to answer is “How do you really know if your meds are helping you?” In a previous post, I wrote about how poorly my son Dan was doing when he was taking various medications to combat his OCD. At the time I thought, “If he’s this bad off with the meds, I hate to think what he’d be like without them.”  Turns out the meds were a huge part of the problem, and once off them, he improved by leaps and bounds.

Of course this is just his story. Others have stories of great improvement with meds. Still others have stories that are not so cut and dried, so obvious. If someone has been on a medication for a year and is feeling “okay,” we don’t know if they would feel better, or worse, without it. Unless we’re able to clone ourselves and conduct a controlled experiment where the only variable is the medication, there is no way of really knowing how a drug is affecting you.

Because of this ambiguity, I think it is so important to share our stories, both of success and failure, in regards to using medication for OCD. Sharing can raise awareness of side-effects, drug interactions, and withdrawal symptoms. It can also bring attention to the possible benefits of certain drugs, as well as new medications on the horizon. While having a doctor you trust is essential, it is also important to advocate for yourself and learn everything you can, good and bad, about the medications you are taking or considering.

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23 Responses to OCD and Medication

  1. lorreleon@bellsouth.net says:

    Dear Janet, I love what you wrote about medicine. One word that I believe keeps the stigma of all psychiatric drugs alive is when someone is prescribed medicine, we refer to it as medication, for all other medical related conditions we use the term medicine. I believe the word medication carries many negative connotations related specifically to people using mental health services.  I  think the best OCD medical professionals (MP) are knowledgeable about OCD but also the ones who are best for you. Even the most knowledgeable MP may not be on the same page as you. Things important to me are 1. MPs who know more than I do about OCD and/or are willing to learn from me as well, 2. MPs who treat me with respect and are working with me, not at me. 3. Effective use of ERP and CBT with medicine and 4. MPs who encourage peer support which is invaluable. 

    All drugs have effects- some are wanted, some are not. It is so important to read possible risks of using the medicine prior to taking it. Recently I learned a prescribed medicine I was taking for the past 9 years for Restless Leg Syndrome can actually cause OCD and/or negatively affect OCD symptoms. So despite my continuing to treat my OCD, I was taking a medicine that was contraindicated for people with OCD eventually creating a condition called DAWS when I attempted to discontinue it. Powered with this information, I am now off that drug. Thank you for your work, Janet. 

    Lorre Leon Mendelson

    • Thank you so much for your comment, Lorre, and I especially like your list of four things that are important to you in terms of medical professionals. Also, I never thought of the term medication as opposed to medicine……..that’s interesting and something to think about. And yes, there are meds out there that can cause or exacerbate OCD. Glad you are doing better, and thanks again for sharing.

  2. I developed OCD when I was thirteen. i was a hand washer. In the eighties I participated in a study through a university to determime if zoloft was useful in the treatment of OCD. Lucky for me I did not get the placebo. I had been too anxious to use medication prior to that time because of all the side effects. OCD interfered with my ability to function and enjoy life. An added benefit was that after I had been on the medicine for awhile my depression lifted for the first time in my life. I struggled for years off and on because I didn’t want to have to take the medication and because the sexual side effects were troublesome for me. But overall, I”ve been on Zoloft off and on for over 20 years. Zoloft is just one of the things that could have potentially saved my life because my depression was so deep that I often contemplated suicide. I still have OCD symptoms, but they are manageable. So I guess I would say that I needed the medication because I don’t think behavioral treatments would have been enough for me. After all, OCD is a biochemical disorder. Best wishes to you on your continued journey.

    • Thank you so much for sharing your story, and I’m so glad Zoloft has been helpful for you. Exposure and response prevention (ERP) therapy is the front line psychological treatment for OCD, but I realize that many OCD sufferers, for various reasons, do not attempt it. I’m glad you found what works for you and wish you all of the best.

  3. Daniel Walks says:

    Chlomipramine, or Anafranil, seems to yield good results.

  4. Medication is a must for me for depression. I have learned that and have no problem knowing that I will likely be on it for the rest of my life. The help it gives OCD is not so clear cut for me. I took Anafranil in the early 90s. Anafranil was the first med specifically approved for the treatment of OCD. But it’s still an antidepressant. My OCD got better on the meds, but I wonder if my depression getting better also helped me cope with the OCD better. I definitely benefited from cognitive therapy techniques through the years too. I believe that it has been a combination of things that have helped me get to this place where the OC is not as big a part of my life.

    • Thanks for sharing, Tina, and I’m so glad you’ve found the right combination of treatments to help you. As you say, it’s hard to know exactly how or even if a certain medication is helpful for OCD. Of course, the main test is how you are feeling.

  5. ocdisntme says:

    You’re absolutely right in saying that we need to share our stories of combining OCD and medication- both good and bad. Just like your son Dan, I too have never had a positive reaction to medication. The thing the medication is targeting is the depression that can go hand-in-hand with anxiety and OCD but adversely it can anesthetize a part of who we really are. The question I had to ultimately ask myself was “Do you want the OCD voices to be silenced at the expense of your own voice being silenced as well?”

    • Thanks so much for your comment, ocdisntme. I do remember Dan saying he felt “flat” on his meds. You ask a great question, and I think the answer will be different for everyone. Of course, reactions to medications are so individual as well. I wish you all the best!

  6. 71 & Sunny says:

    I’ve had meds wreak havoc on my life, and other meds have been a HUGE help. There really is trial and error with this. It’s unfortunate, but it seems to be the only way right now. The medication I’m on now works really great for me, with the exception of sweating and weight gain (although I don’t help myself in that area!). But it makes such a difference for me in my mental health, that I just need to put up with it, for now anyway.

    • It’s all about benefits outweighing the risks, isn’t it Sunny? I’m glad you found what works for you, with relatively minor side effects (easy for me to say, right :)? I hope you had a nice Thanksgiving and thanks for sharing.

  7. worrywartmom says:

    That article really hit me and got my full attention. I have a 17 year old Senior who has OCD. He was diagnosed when he was about 10. His kind of OCD is mental in where he constantly struggles with thoughts, religious issues, etc…
    Anyway, in a nutshell, he has been on probably 6 or so different meds. One works for a while (maybe a year or so) and then it seems to run it’s course, then we switch to another one, and so on. He has been on this latest medicine (Luvox) for more than a year now, which he takes everyday. I’m kind of stuck right now. My son is a great kid, but really, he is so completely unfocused with things in life, homework, chores, etc…He cannot comprehend or remember what you tell him 10 seconds after you tell him. School is a big struggle for him and he even admits that he has a difficult time focusing on anything. I’m wondering if it could be the medicine causing this. I realize he’s been on it for a long time, but my thought is because he is growing and his hormones are changing, that maybe the medicine is working differently. I’m leary about talking to the doctor or changing the medicine for fear he will back track, but then I read in your article that your son was a lot better once he was off of them.

    Any thoughts would be appreciated, thanks!

    • Oh, it’s such a tough thing to figure out, and of course I can only tell you of my family’s experiences, which would not necessarily be the same for you. You talk about your son being unfocused, and my son appeared the same way. I say “appeared” because he was actually very focused……on his OCD. He was so busy with his mental compulsions that he always seemed so spacey to us. Could this be the case for your son? Just a thought.
      As far as meds go, I can’t really advise you, but if you are thinking of weaning him off of his meds, please don’t do it on your own- consult your doctor. Good luck and please keep me posted!

      • worrywartmom says:

        Thanks for the feedback, very much appreciated! I love what you said about “appeared” to be unfocused…..when in actuality there are extremely focused, just not on what we want them to be focused on. Oh for sure I would never just drop him from medication, unfortunately we learned that the hard way when my son decided he didn’t want to take the meds and would just throw them away when I gave them to him….we figured this out and got him back on track! I will be talking to his doctor and will certainly keep you posted. Thanks again!

    • Good luck as you move forward. Your son is lucky to have you!

    • mike says:

      I have deep empathy for you when I read the story you share regarding your son.
      Our son was diagnosed with severe OCD in the fall of 7th grade. Dr’s and therapists have diagnosed him as ‘True OCD’ w/comorbidity issues(not even sure what this is but my wife seems to understand) True OCD as I understand is obsessive, intrusive, disturbing thoughts. He did make a lot of lists over the years too and he did go through periods of excessive hand washing but these rituals seemed to wax and wane. I am encouraged to say he is 18 finishing his first semester in college, living in a dorm with 2 roomates. He’s a great person, bright, amazing quick-wit, very caring, very protective of family, friends,animals….. but his ocd is still there just below the surface…………………… I worry about him every single day…….. I have found encouragement over the years in stories posted by others like you and others here. Maybe this is why I feel compelled to share a little about his experiences.
      Before 7th grade he was always very ‘outgoing’, ‘engaging’, ‘life of the party’, really fun to be around and watch him interact……..sometimes not so much for his elementary school teachers but always in their good graces. ….and by the way he was always involved in organized sports through all of this to 12th grade.
      We started to notice rituals in fall of 7th grade, followed by a very quiet disposition uncommon for him that was never before. Normal for a young boy I thought but this was becoming very noticeable. We would hear him crying in his room or in the bathroom and we were desperate to understand why. Nothing had happened to give reason.
      I have always worried about the meds prescribed but I now realize he has to be on them.
      I just want to preface my sons prescribed meds experience with commenting that I know of others w/ ocd through the years that have had succesfull experiences with some of the meds that failed to work for our son. My son was first prescribed the ssri zoloft which presented after several weeks in a complete trance like state. Sitting on the arm of our couch motionless, expressionless, silent for hours. This was stopped after 3-4 months and he was prescribed prozac. Over the past 5 yrs prozac appears to be the best option for him. He went through his first 3 yrs of high school on 60mg daily, socially well adjusted, academically ok, very(VERY) un-organized with everything, unable to focus, couple bad choice disciplinary issues but overall normal/good teenage boy.
      Through 10th grade he went several months once per week to a highly recommended CBT therapist named Jonathan Grayson and enrolled for a short period in the University of Pa’s Center for Anxiety COTTAGe program. He did not complete the program as our son felt it was of no help to him.(stubborn!) The attending Dr and therapist said our son had severe true ocd.
      He seemed good and I was always concerned with his daily meds so when he asked in March of 11th grade to come off meds we had him consult with the prescribing psychiatrist who consented to begin tapering down. Tapering began early March, in hind sight we observed negative differences in his personality by early April that escalated through May/earlyJune(withdrawn from social life) culminating in re-visit to psych Dr in late June who prescribed a low dose of Adderal to go along with the lower dose of prozac(I think prozac 40mg but may have been down to 20mg) Apparently Dr’s think the adderal was not tolerated well by our son and suffice to say he stopped after about 10days and several ER visits( he began hyperventilating every day for no apparent reason) He was then prescribed risperdal to be taken as needed as a means to calm him I believe. Only took several times. Allowed him to sleep soundly.
      Anyhow…….jump forward to summers end(bad summer!) my son was back on prozac(100mg this time) and he has been doing better than ever. Good enough in 12th grade to score well on SAT’s, get his grades up across the board and get accepted to several local colleges where he is currently. He may need to be on medication the rest of his life.
      He still struggles now socially but he is at least comfortable with himself, our large family, his roommates and his ability navigate college life. He works out often which I believe helps him much.
      I have tried to get him to try NAC(n-Acetycysteine) in effort to adjust glutamte levels and I asked his psych dr about new glutamate regulating meds like Rilutek but he does not want to adjust the current med course. I’ve read encouraging news and med studies regarding OCD and glutamate levels and these new meds can be taken with current ssri meds. My son is reluctant to try anything out of fear of altering his current good state and I dont blame him.
      My wife is so good with him and understanding his ocd. She identifies when it is his ocd controlling his actions/habits/behaviors.
      I wish to encourage any of you with similar experiences with your son or daughter to educate yourself on this disorder for their sake……….I have seen the pain it causes in the deepest sense of which I have not written. Be patient and understand the everyday debilitating struggle going on in their brains.
      I’ve never felt so helpless in my life at these times with my son but I am not hopeless.
      There are medical professionals that can help us through and have.
      My son is growing up….. a young man now! Bigger, stronger than me. Excellent shape!
      I pray often that he will be ok……..
      embrace, love, and guide them……..
      most of all be patient
      my son has a great sense of humor so we laugh a lot too !!
      always be there, always remember their struggle.

      • Mike, Your comment brought tears to my eyes as I can sense how very much you care about your son, who by the way, sounds so much like my son Dan. I’ve never heard the term “True OCD” but assume it’s the same as “Pure OCD” in which the sufferer’s compulsions are mental and therefore not typically visible. Dan also took several of the drugs you mention, including Adderall, which was a disaster for him. As I mentioned in another comment, I’m not familiar with NAC and would like to research that when I have the time. You are so right that we need to learn all we can about OCD to support our loved ones, and I am so happy that your son has been able to get such top-notch care – Jonathan Grayson and Univ of PA’s Center for Anxiety are well-known and extremely reputable. I am thrilled that he is doing so well and wish your whole family only the best. Thank you so much for sharing and I hope to hear from you again!

  8. Mark says:

    I was offered medications by several health professionals, but turned them down due to prior negative experiences with prescription drugs, as well as watching friends go through the mental health system and have poor reactions to their medications. One thing I found useful was an amino acid called n-acetylcysteine (NAC), which really helped to slow down the racing thoughts and associated anxiety.

    • Thanks for sharing what helped you, Mark. I am not familiar with NAC at all. I checked out your site quickly and I think it’s very valuable. Wishing you all the best and hope to hear from you again!

    • lorreleon@bellsouth.net says:

      My psychiatrist recommended NAC to me as well and I cannot tell if it makes a difference but I’m glad to hear another person is taking it as well. Thank you Mark. Sincerely, Lorre

  9. Senad says:

    I have tried dozens of med, from zoloft to prozac, to seroxat.

    And from risperidone to quintieapin to aripiprazole.

    These atypicals above made thinks only worse, zoloft was disaster for me, prozac did little, seroxat helped a lot but residual symptom remained, then my doctor prescribed me a levomepromazine, old typical antypsihotic, and bingo, massive reduction of all symptoms.
    So i would advise to give a shot on levemepromazine
    btw first couple of days i felt worse on levemepromazine, but after fifth day i startded to feel better.

    • Thanks for sharing, Senad, and I’m glad you found something that works for you. Of course, medication is a very individual thing and what works for one person might not work for another. Wishing you all the best for 2015.

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