My adult child has OCD which manifests in intrusive thoughts about dying and having various medical conditions. Recently he believes he has ALS. Panic attacks are ongoing and affect every part of his life . He's been dxd with social anxiety, ADD, OCD. He is so super awesome and doesn't deserve to live his life like this. He has had years of therapy. I'm looking at TMS, ketamine therapy, ERS..........he's had CBT. He's on xanax., adderall, and something else for anxiety.
What treatments do you believe in? He has no insurance but I will help him pay if I think something will work!
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I’m not a doctor but I’m speaking from personal experience (and reading) as an OCD sufferer. Has he tried SSRI medications? These medications, such as Zoloft (sertraline), Luvox (fluvoxamine), Prozac (fluoxetine) and others are normally the first medicines tried to treat OCD. THEY MAY TAKE A WHILE TO WORK, and if someone doesn’t know that they might abandon them too soon. Based on evidence in literature and anecdotal evidence, it takes 12 to 16 weeks for SSRI’s to have significant effect on OCD. One reason is because you must use SSRI doses in their higher range, maybe approaching their maximum, to affect OCD. (If his psychiatrist or psychiatric nurse practitioner isn’t thinking along those lines I suggest at least getting a second opinion.) This means you must take some time to ramp up the dose. In addition, one theory of how they help OCD involves more than one step. The drugs help you have a more positive outlook. For depression that’s all you need. For OCD, one theory is that after that positive outlook develops, it then influences and changes certain thinking habits over time, and those changes reduce your OCD.
Also, I use a psychiatric nurse practitioner and feel she does a good job, and their fees may be lower than a psychiatrist.
(SSRI’s are selective serotonin reputable inhibitors, commonly referred to as anti-depressants).
iocdf.org (International OCD Foundation) has helpful information and resources list that might be useful. A support group for friends and family of OCD sufferers, such as the one circled in the attached screenshot, could give you someone closer for information and support.
The page below is part of the IOCDF website which shows some of the Tennessee resources, however you might need to expand the distance for your location.
Most effective proven treatment for OCD is ERP therapy . Check out treatmyocd.com or mental health clinics around. OCD is a bitch, but the treatment process and revelations that come with understanding how your mind works can become a blessing. Our (often sick) minds try to persuade us that they are all it is, but we are much more than our minds. Wish all the best for you and your son.
I suffered from OCD for most of my life and was able to find relief with a combination of SSRI (Lexapro) and CBT/ERP therapy. The SSRI's helped to tamp down the anxiety and thoughts to a point where I could deal with them and the therapy helped me develop better ways of coping. However, it wasn't easy. Like helloworld22 said, it can take some time before the effects of the SSRIs are prevalent. They can also make you feel like crap for the first couple of weeks as your body gets used to it. The majority of them usually go away though.
In my case it took about 2 weeks before I started to feel any effect on my OCD. I remember checking a door at about the 10 day mark and realizing, "I can ignore this.". I almost broke down and cried because it was the first time in my life that I ever had the ability to do so. I've been on 3 or 4 SSRIs in my life and I can say that some of them didn't work. That's okay though since everyone is different and it may take some time to find something that's right for you. I was also able to get off daily Xanax since the SSRI's helped so much. I still take it occasionally if I'm having an extremely difficult day though.
I'm really sorry that your son is going through this, I really am. I understand how hard OCD can be and the toll it can take on the person and the people around them. The good news is that there is hope though and there are tons of people who want (and can) help. You and your son are not alone. God bless.
I can’t tell you how touching it is to see a parent trying to help a child with this. When my mother was alive, she played a huge role in helping me to get support when I was incapable of finding it myself. I will always be so thankful to her for that (and many other things). Your son is very lucky to have you.
I have OCD, social phobia, and generalized anxiety disorder. For years it was debilitating. Over the years I tried everything by way of medication and nothing seemed to help. (Note: I never tried ketamine infusions.) I also did months of TMS, but to no avail. CBT was a bust, too. My intrusive thoughts and overwhelming anxiety continued, centering around death, health, and anything that I valued or loved. Without relief, I eventually turned to alcohol as a coping mechanism, but that was a huge mistake and eventually made the problem even worse.
I still struggle with intrusive thoughts and anxiety/social phobia, but I can now say this: it’s not debilitating anymore, and I’ve actually found some joy in my life (which is a far cry from how it was before). So there is hope! It’s just about finding what best works for your son which can take a lot of trial and error.
What seemed to finally help me was a combination of ACT and meditation/mindfulness. A therapist introduced me to ACT, so I had his guidance through the process. In ACT, I learned to “accept” the thoughts and the physical discomfort that came with them, all without fusing. It was terrifying sitting with the thoughts and mental compulsions, but I learned how to do it, and eventually the thoughts lost some of their power and became less frequent. In meditation, I learned to focus on the breath and not the thoughts. It was so hard at first, but over the course of about 6 months, meditation became my lifeline. With mindfulness, I was able to focus on things like sounds, physical sensations, tastes, sights, etc. Now, especially when I go for a walk around the neighborhood, I have these moments of being truly present (and not terrorized by my intrusive thoughts and anxiety). Strangely and most surprisingly to me, all of this eventually brought me what I can only call a newfound sense of “spirituality.”
This all took a lot of practice and work with a therapist—it still takes a lot of practice and work—but its had a noticeable effect on me and I’m much happier now than I was before. Of course there a good days and bad days, but that’s life.
I’m sure it goes without saying, but everyone has to find his or her own path to wellness. What works for some most definitely won’t work for others. I wish your son all the best, and please let him know that no matter how bleak things seem, there is hope! And once again, he is very lucky to have you on his side.
I appreciate all the nice comments! It is so hard to see him suffer. ACT I will have to look up. Thank you for your encouragement and I'm glad you found some relief! I felt very emotional reading your story. Thank you for sharing!
If using an SSRI, the dose for OCD should be increased slooowly, to a much higher dosage than for clinical depression.
Many find Atomoxetine (Strattera) to have less side effects than Adderall.
Buspar is a safer alternative to Xanax, which is often as effective in lessening the impact of a panic attack.
ERP is the most effective therapeutic approach for OCD, according to many studies. See IOCDF.org for provider directory. If the therapist is not trained in ERP, the treatment is likely to plateau and get stuck after some time. If your son has a trusted provider, that provider can seek training from the IOCDF, with ongoing mentoring afterwards.
If you're in the US, there is vocational rehabilitation which can be very helpful.
ALS is diagnosed by a neurologist who specializes in neuromuscular diseases, via EMG and nerve conduction study. Let the doctor know that FIRST, s/he must gain your son's trust. I can't tell you how many people get a clean EMG and nerve conduction study, but continue to be plagued by an irrational belief they have ALS. The doctor should acknowledge your son's fears, and explain how the testing works. It's quite complicated. Most importantly, the doctor must LISTEN to your son's self observations.
I'm confused as to why I would take him to a neurologist when I think he is anxious and has OCD and not ALS? I do like your advice to make sure he trusts the doc and that the doc should listen to him and not just tell him he has anxiety. Cooper is in the pattern where about every 3 months or so he thinks he has a new disease and has had blood work, xrays, therapy, an MRI.....I'm afraid this testing will go on forever when nothing is wrong. So do I take him to all these drs? I don't think I'm supposed to.. Thanks so much for your reply!
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