Tics, counting, and repetitive movements

[cellodogsct]

Hello! This is my first post. Since my teen years, I know I've had some repetitive movements of my fingers, ticks/twitches of my eyebrows and face, and counting even and odd numbers, often imagining doing so on my front teeth (sounds a bit odd, but that's what it is!) It was manageable and possibly annoying, but recently, it has been quite overwhelming.

For background: I am in my 60s, and I am a neurologist, and I've treated patients with OCD and tic disorders! During the pandemic, I was unfortunately diagnosed with leukemia. I've had a very tough few years, with initially a year of chemotherapy and months of hospitalization. After a relapse following a year of chemotherapy, three years ago this month, I had a bone marrow transplant. I have a tremendous amount of PTSD related to medical trauma and terrible relapse anxiety, which is very difficult for me, considering I've spent my life in the hospital and with sick patients. I can no longer practice medicine, but I am doing many other interesting things, including getting a Master's in bioethics and extensive volunteer work/patient advocacy in oncology, and assisting many others with navigating the medical system and getting care.

I have a wonderful therapist at the cancer center. I have also started CBT with a psychologist, working on the medical trauma, as well as some aspects of what has been diagnosed as OCD. with ERP. However, I am thankful that I found this website and will start reading posts from others experiencing similar symptoms.

I would love any advice on how to deal with the continuous counting that goes on in my head. For example, when watching TV, often with the captions in place, I subconsciously count the letters in words to the point of often missing the content of the international TV movie or series I'm watching. Sometimes, even when people are talking, I calculate whether what they are saying has even or odd letters. In addition, I have a continuous twitch/flick of two fingers on my right hand, which has resulted in chronic pain in my right forearm and tendonitis, so these symptoms are not benign and just annoying anymore but interfering with things.

Lastly, I fully understand that relapse anxiety is very common in cancer patients, and I have worked with many of my patients with neurological disorders who are fearful of recurrence or exacerbation of the disease. The fact that I can rationally understand that not every bruise I have suggests I have active leukemia again, or on days when I'm particularly tired, doesn't mean I've relapsed is great. Still, it doesn't help the constant ruminations, flashbacks, and fears of leukemia returning. I am a very good patient and work well with my therapists, and I am also on medication that hopefully will help more as the therapy progresses.

Thanks so much for any of your suggestions, and good luck on your journeys!

[LuvSun]

Welcome to the community!

[deValentin]

Welcome to the forum! After all you had to go through and you’re still finding time to study and do volunteer work, it looks to me that you’re coping very well!

I’ll address only the topic of compulsive counting, which is much related to the need for order, symmetry, and precision. As a youngster, before going to bed, I used to line up the clothes I was going to wear the next day in a certain order, otherwise it wouldn’t feel right. Now I function somewhat better, but, for instance, if I accidentally delete an email and I need to rewrite it, even if basically I’m able to repeat the same message, the fact that I don’t quite use the same words in the same order as in the first message still bothers me a little bit.

How do I deal with it? I "feel the urge and do nothing", and with the passing of time it eventually goes away. That’s basically the principle of exposure and response prevention, or ERP. I know I could spend a lot of time trying to remember the exact format of the first message. I wouldn’t feel bad doing it even if it doesn’t make sense to an independent observer and to the logical part of my mind. Actually, it would relieve in the short-term some of my discomfort. So, I would wrongly rationalize that it must be important to me.

It's like for accounting. It doesn’t make sense to look for a mistake that is less than what it would cost in terms of your paid time to look for it. But, if you have OCD, you think you can’t help it if you don’t wait for the urge to look for the mistake to subside on its own. It’s like you counting the letters in the words at the bottom of the screen and missing the purpose of you watching the TV program. In the moment you likely don’t feel bad doing it. It may be only afterwards that you find that habit ridiculous and annoying. Because of that delay, there is a need to make a decision, at the time when you’re triggered, not to give in to the compulsion but wait for it to fade with habituation.

I’m not taking medication because I find my need for precision very useful in certain tasks like building projects. I’m afraid it may dull it indiscriminately, and anyway, ERP is enough for me to keep my need for precision within reasonable bounds. I'm sure that you found your need for precision equally invaluable as a neurologist, but the problem is that OCD robs us of our flexibility.

I don’t know if my experience may be of some help, but I hope you find a way for your need for precision to leave you reasonably alone.

[cellodogsct in reply to deValentin]

Thank you so much for your reply. Your suggestion is very helpful. I am going to try to create a pause when I feel the urge to count in various settings, and wait until the intensity of the urge passes. I really appreciate you sharing your story!

[deValentin in reply to cellodogsct]

You're welcome. In the course of your studies, you may have heard of Mowrer's two-stage theory: if I feel driven to adopt a certain behavior, it's not necessarily because it removes an external threat, it may be just because it relieves some inner discomfort. My overreaction to triggers has nothing to do with the outside world.

[Natureloverpeace]

Welcome to the community. I would highly recommend checking out the website iocdf.org. Also, the virtual IOCDF conference takes place next month which I highly recommend attending. This is probably the place where you can learn the most from the top experts in the field. You can register for it on the IOCDF website. Health anxiety and OCD intermixed with PTSD are included in the conference schedule. Old school ERP use to be just about habituation but thankfully it has evolved into much more than that which makes it more effective.

[cellodogsct in reply to Natureloverpeace]

Thank you so much. I will definitely check out that website in the conference.

[Cup-cake7 in reply to cellodogsct]

hi. Iv no real evidence but read and listened to very encouraging support and understanding from 'Freedom from Fear Group' the founder is a NZ guy David Johnson wonderful caring human who suffered. He used the late Claire Weeks method she has a book and I'd read it so it really resognated. It's a simply method once you get hang of it

Plus Iv read about GABA calm and or Tyrosine, - Trudy Scott, it seems to help a lot of people if you don't have enough for your system, I'm about to try.

Good luck.

[deValentin in reply to Natureloverpeace]

I don't mean to highjack the thread, but what's "old school ERP"? I'm always interested in keeping up to date.

[Natureloverpeace in reply to deValentin]

Habituation only

[Natureloverpeace in reply to deValentin]

Old school ERP treated just the superficial fears which leaves OCD an open invitation to show up as a different or additional theme because the core fear underlying the person’s OCD hasn’t been addressed. Someone could practice ERP so they could touch a doorknob again if they struggled with that. So they learned to touch a doorknob again which is great but fear of touching a doorknob is a superficial fear. Two people could have the exact same obsessions and compulsions but have a different core fear that drives them. That’s why a knowledgeable and experienced OCD specialist doesn’t apply a one size fits all ERP treatment plan to everyone or even a particular theme. The ERP needs to be custom-fitted to the individual, not the theme. Without the core fear being addressed, the person will likely end up playing whack-a- mole with their OCD as it changes themes or adds on new ones. An OCD specialist can work with the person using the down arrow method to discover their core fear.

ERP is often supplemented with addressing the core fear, Mindfulness, ACT and Inhibitory Learning. Before beginning ERP, a skilled OCD specialist would assess for insight and motivation as well as the level of care needed for the person’s OCD severity level. A thorough education about what OCD is and how it operates would be provided. Any cultural differences that affect how ERP may be applied would be respected.

[deValentin in reply to Natureloverpeace]

Thank you for you detailed answer to my question. I watched several videos/podcasts and read articles about the concept of core fears at the root of OCD. I'm still trying to figure it out as it relates to my personal experience with OCD. When it becomes clearer in my mind, I'll respond to your comment in a separate post so as not to highjack that thread, if you don't mind.

[Natureloverpeace in reply to deValentin]

Looking forward to it.

[Lauragbr]

Welcome to the community! I think you will find this forum as helpful as I have.