OCD, Medication, and Genetic Testing

mrpuen freedigitalphotos.net

mrpuen freedigitalphotos.net

For those of you who have been following my blog for a while, it’s no secret that my son Dan had negative experiences with medication used to treat his OCD. He was overmedicated, wrongly medicated, and improperly weaned from various combinations of ten different medications over a fifteen-month period. Medication didn’t help him; it hurt him. For him, the best meds turned out to be no meds at all.

There are, however, a good number of OCD sufferers who are helped by medication (usually in combination with Exposure and Response Prevention therapy). But even for those who benefit from taking medication it is often a long, frustrating journey to find the right medication, or combination of medications, that work. We’ve all heard it before: trial and error is the only way to find that often elusive “right combination.”

But is trial and error really the only way?

In this detailed blog post, DeeDee writes about her experiences with genetic testing to evaluate medication sensitivities. According to her, this look into your DNA is typically covered by insurance when approved by a doctor, and results were reported to her in three categories: Analgesics, Psychotropics (antidepressants, antipsychotics), and ADHD medications. In this interesting follow-up post, DeeDee is happy to report that, with the help of this genetic testing, she is now taking the right combination of medications.

I am not endorsing this genetic testing, as I really know nothing about it. But I love the idea! Instead of being human guinea pigs, OCD sufferers (and those who suffer from other brain disorders) could have their cheeks swabbed, and then be presented with a report detailing what drugs, and dosages, might be helpful, what drugs might not work, and what drugs should absolutely be avoided. This sure would have saved Dan (and us) a good deal of suffering.

When Dan was going through his various medication trials, I remember thinking that it seemed like such a primitive process. In this day and age, with all the advances in science and medicine, shouldn’t there be a more sophisticated way to  determine what medications might or might not work for a particular person?

If you are in the midst of “trial and error,” you might want to ask your doctor about genetic testing, and/or learn more about it on your own. And if it is something you decide to pursue, please let me know how it goes. Fighting OCD can be tough; if there is any way to ease the battle, I want to spread the word!



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20 Responses to OCD, Medication, and Genetic Testing

  1. It can be such a frustrating experience trying different meds. I remember my doctor in the past being so excited for me to try a new medicine, one that ended up not being good for me in the long run. I think I’m on a good regimen now, but I would be willing to look into genetic testing in the future if need be. Thanks for bringing this to our attention!

  2. kris says:

    Dear Janet,
    I hope you take some time to read this ,for I am desperate for a solution for my son. Its now over ten years since he first experience severe anxiety. He was then 18, in his second year at uni,doing astro/physic. We took him to the doctor who prescribed prozac for the anxiety.There was no in-depth investigation performed to get to the root of his anxiety. ( he is hyperthyroid, low vit.D )We been on a roller- coaster since. With the prozac he began to developed other symptoms,superficially harming himself, becoming paranoid an anxious. Soon this was changed to venlafaxine which produced severe side effects mainly intrusive thoughts of sexual nature, wanting to harm his family,Soon he was put on Olanzepine which made him bath two or three time a day. Finally he was prescribed Abilify. Initially he was doing well but these thoughts were still present. Eventually it was increased to 25mg ( The highest recommended dose) and he felt like cutting his neck all the time. By that time he had enough of torture that he stopped taking it. He was fine for about three months,but began to withdraw shortly. Quothiapine 50 mg (considered to be a baby dose)was started which completely send him off his head.Again he was assessed and changed to Respiridone,but he never improved. These intrusive obssesive thoughts were there daily. He was paralysed mentally, that he could not go out in case he acted on these thoughts.
    Out of desperation we thought for a second opinion and after nearly five hours of consultation they believe that he has Ocd with a mood component and agreed to treat him provided he was weaned off his medication and had to be monitored vigilantly. Unfortunately this was not carried out as needed. After eight months coming off the medication he has relapsed again. This time the ocd is more apparent.Travelling, buying books with all kind of headings, cds,eating specific food preoccupied withsexual matters.
    I really do not know where to go from here. The doctors are not listening. They have failed to recognise the ocd and have persued with the anti-psychotic despite these severe side-effects.
    Please help

    • Hi Kris, I am so sorry things are so hard right now for your son and you. I am not a doctor and can’t really advise you as to your son’s diagnosis and medication, though certainly some meds can exacerbate OCD.You have acknowledged, and it seems obvious, that things are not improving with your son’s current treatment team, and if I were you, I would try to find OCD specialists to work with your son. The IOCDF is a wonderful resource for doctors, as well as different types of treatment programs, and their site even has tips and questions for finding competent health care providers. Please do not lose hope as there are people out there who can help you and your son. Sometimes finding them is one of the hardest steps toward recovery. Wishing you all the best as you move forward and please keep me posted.

  3. ladytabatha says:

    I’ve been trying to find an appropriate medication now for 6 years. I’m now on 375mg Venlafaxine and 400mg Quetiapine, which is helpful for my mood and anxiety. I think genetic testing is certainly the way forward. Hopefully it will bring hope and relief for many people with long-term conditions.

    • Hi ladytabatha, I don’t think anybody should have to go through trial and error for six years to find medication that works for them. Let’s hope that this genetic testing proves to be worthwhile so people can take advantage of it.

  4. Reblogged this on Jackie Lea Sommers and commented:
    Super interesting! In my case, “trial and error” took five years and a near-death allergic reaction …

  5. This is so interesting. A psychiatrist recently told me about testing that he did on one of my patients – a young boy. All it took was a tongue swab – and a report back from the lab. They were able to determine that SSRI’s were definitely a no-no for him. And they got him on meds that he tolerated well. A true blessing for him and his family.

    • Wow, Angie, that sounds too good to be true! How wonderful that he didn’t have to actually take SSRI’s to know they are not a good match for him. Thanks for sharing.

      • Actually, I left out much of the story. Sadly, it was a bad reaction to the SSRI’s that prompted the psychiatrist to try the swab. Luckily, the test prevented more poor reactions. It’s a very new test and it could be helpful to many, many others in the future. Hopefully, some of those will avoid having to have the negative effects.

      • Oh dear, I knew it sounded too good to be true :). Still, I’m guessing he would have had even more problems with meds if it weren’t for the testing.

  6. C says:

    Oh wow, I hasn’t heard of this! Interesting even though I don’t think medication helps the root of ocd. Thanks for this post, Janet.

  7. jstewart84 says:

    I have a wonderful therapist who strongly believes that Zoloft works best for OCD and I agree. It is the only medicine I have tried, but it has worked wonders for me with very minimal side effects. We took a really slow approach and increased the dosage at a very slow rate, which I think was so helpful. This paired with talk therapy has been a lifesaver.

  8. Merianna says:

    Thank you so much for this information. Genetic testing would seem to offer a lot of hope when sometimes you just feel there is not much to grab on to out there. My heart goes out to all who have suffered from negative reactions to medications taken with the expectation of yourself or a loved one feeling better not worse. In my own situation I tried Prozac, Celexa, Paxil and Zoloft with side effects of dizziness, increased anxiety, inability to sleep without tons of Xanax. I was left to feel blamed for “not being able to tolerate the side effects” long enough for the medication to work. After suffering at each medication attempt, trying and feeling badly at my “failure to tolerate” because this is what I was advised I needed to do. Finally, so dizzy I couldn’t get my head off the pillow, desperate, scared and anxious I thought to myself “could my blood pressure be causing me to feel so sick and dizzy”. I asked my husband to go to the drug store and buy a blood pressure machine. When he returned I had him take his for a baseline and then mine. Again we repeated it. Sure enough my blood pressure was so low that my husband called with the reading to the doctors office. We got a call back to stop the medication and not take anymore. Medication can have powerful effects. Although rare, there are documented cases of suicide because of an adverse reaction to a psychotropic medication. Genetic testing would save lives and suffering. I for one am going to look into seeing if I might be a candidate for genetic testing. It would be wonderful to take medication with reasonable assurance that It won’t cause worse harm. Thank you again for educating me and others.

    • Hi Merianna, Thank you for sharing your experiences with medication. How scary! You bring up a good point about feeling “blamed” for not tolerating horrible side-effects. I have heard people say they felt like a failure for not being able to stay on certain meds.Please keep us posted about the genetic testing. Good luck!

  9. Gail says:

    I am so interested in the story of your son as my 23 year old son is on a similar path at a renowned institution ( I would love to know where your son was) He has been there about 6 weeks after spending 5 months at a “failure to launch , mentoring and life skills program .It was at this other program that a psychiatrist diagnosed my sons ruminative thoughts as OCD along with the results of psychological testing. please be assured that we are not clueless parents. our son had several failed attempts at college in spite of being extremely bright and an honor student in high school….thus the failure to launch avenue….Now we find ourselves on this OCD journey( we are not saying that OCD is not a correct diagnosis) that has been anything but rehabilitative. in the past 6 weeks he has been on and off 7 different medications at least! We have been assured that med management is a strength at this institution ……if so , why is our lovely kid a quivering, jittery, teary,defeated mess…..he cannot get stabilized enough to do ER P effectively . We are worried sick . We want to have faith in the experts we have researched and been reassured that where our son is is THE place.Why then do we still feel the need to seek continued reassurance and for guidance from local experts. I am glad I stumbled on your blog , it has reassured me that questioning has a place…..

    • Hi Gail, Thank you so much for sharing and of course I do not think you are “clueless parents.” I think you are like most of us here, parents who are trying to do right by their children when what is right is not always clear.
      Your son’s story does sound similar to my son’s (at least the OCD treatment part). If you’d like to email me at: ocdtalk@yahoo.com to talk about it more, that would be fine.
      Please don’t lose hope……OCD is treatable, and your son can go on to live a wonderful life. Sometimes one of the hardest parts of OCD is getting the right treatment!

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