Adult son with OCD (Intrusive thoughts)

[HUNT]

Hello

I hope someone may be able to steer me in the right direction.

I have a 22 year old son who has a diagnosis of OCD.  He was diagnosed four years ago.  He has horrible, intrusive thoughts, related to mind control, fake realities (that type of thing) and his "compulsions" to counter these thoughts becoming a reality, include praying/wishing (all done quietly to himself) and of course, if not done in the right way, at the right time, using the right words, cause him incredible distress and relentless rumination.  He is bright, sociable, funny, kind but this is slowly crippling him.  If you met him, you would not have a clue how ill he can be.  He is in his final year of university, manages his "worries" for months on end, but on average about every three months, they seem to overwhelm him and he becomes very ill. Exhausted from the mental strain, tearful, angry, fearful and at times we fear suicidal.

He has been prescribed Venlafaxine and Olanzapine.  He had tried several other medications, but found the side effects intolerable.  He started the Venlafaxine around October 2019 and to date not had any significant side effects and he (and we) felt he was improving.

Unfortunately, he has crashed again.  We thought his trigger for these "lows" was stress related (exams etc) but having just got through a tough set of exams without any severe OCD issues, he has suddenly become unwell.  I think it is perhaps the loss of structure, that leading up to the exams he'd had - busy with study groups, lectures, exam prep etc.  Ironically that didn't seem to bother him.

He sees a psychiatrist for regular reviews (unfortunately there is now a wait of a month before he can get another appointment) and also a therapist.  We are looking at alternative therapist to see if we can find someone that perhaps is better suited to our sons needs.

My main question at this point is the slight change in this recent episode - his need for constant reassurance from me, either by calling or texting, wanting me to reassure him (by repeating certain phrases, in a certain way) I know from everything I read that I should not be participating in his rituals and largely I don't.  i try to stay calm (although I confess I sometimes lose patience), remind him that whilst he feels awful, he has in the past and has always got better etc. etc. But I'm floundering as to know how best to support him.  Its awful to watch him suffer and I feel completely useless.

Any support or ideas would be most welcome!

Edited February 20, 2020 by HUNT

[dksea]

Hi @HUNT, I'm so sorry to hear about your sons suffering, as a fellow sufferer I can relate directly to that, but I know its also hard on parents/partners/etc. so I am sorry for your difficulty as well.  

Hopefully the doctors and therapists your son is working with are well versed in OCD and how to treat it, having the right professional help can make a big difference.  As a non-Brit I can't speak to the details of how to obtain and ensure that kind of thing in the UK, but I know there are lots of resources on the main OCD-UK site and perhaps some of your fellow countrymen will post here as well.
 

7 hours ago, HUNT said:

He has been prescribed Venlafaxine and Olanzapine.  He had tried several other medications, but found the side effects intolerable.  He started the Venlafaxine around October 2019 and to date not had any significant side effects and he (and we) felt he was improving.

Finding the right medication can definitely be a challenge, since what works well for one person might not work well at all, or have significant side effects for another.  The main type of drugs used to treat OCD would be SSRI class drugs (fluoxetine, sertraline, citalopram, escitalopram, fluvoxamine, and paroxetine).  If your son has tried a few of those and not tolerated the side effects well then that might be why he is on the other drugs.
 

7 hours ago, HUNT said:

Unfortunately, he has crashed again.  We thought his trigger for these "lows" was stress related (exams etc) but having just got through a tough set of exams without any severe OCD issues, he has suddenly become unwell.  I think it is perhaps the loss of structure, that leading up to the exams he'd had - busy with study groups, lectures, exam prep etc.  Ironically that didn't seem to bother him.

While it can sometimes be possible to identify triggers, other times it just seems to happen. Definitely frustrating for those of us with OCD (and other mental health disorders).  I wish it were more like my peanut allergy or lactose intolerance, either I consume something that triggers me or I don't!  I wouldn't spend too much time on identifying triggers if nothing fairly obvious is popping up, you could go down that rabbit hole forever since its hard to isolate things in real life.

At its core, OCD is a malfunction with how we respond to certain thoughts or ideas.  Recovery/management of OCD involves retraining ourselves how not to overreact or respond more "normally" to the intrusive thoughts.  Cognitive Behavioral Therapy (or CBT) to treat OCD focuses on helping sufferers to readjust their responses and thinking about intrusive thoughts so we don't freak out when they happen (which triggers the anxiety spirals).  Compulsions may seem to give us relief, but its only temporary and unfortunately it actually reinforces the idea that these thoughts are worth being troubled over.  Reducing/avoiding compulsions is a key part of recovery and improvement because they are what keeps OCD alive and makes it worse.

It would be very important that your son is working with a psychiatrist and therapist who understand the appropriate treatments for OCD and are taking him down the right path (CBT) for recovery.  But there are a variety of techniques and approaches to CBT and not everyone clicks with a given therapist, so its possible finding one your son can work with and whose approach he can adapt to would help.  However a lot of overcoming OCD is on the sufferer and doing the hard work, over and over and over.  Its kind of like exercise, you can get a great personal trainer, but you still have to do the work if you want your body to benefit from the exercise, no one else can do it for you (sadly, in both cases, lol).  And its not just applying the techniques during therapy sessions, the real work involves applying them daily, either as part of your every day interactions or in specific targeted activities.

One last thing I will recommend is that if you are concerned about doing the right things and how you can best support your son, it might be worth discussing this with his therapist and doctor.  They can hopefully provide you with guidance and advice as well so you can all be working towards the same goals and you can understand what is good/not good to do as you support him. It sounds like you have at least some knowledge in this area as you realize that giving out compulsive reassurance is generally not a great thing, but I appreciate its hard not to alleviate the immediate suffering he is experiencing in the moment, even if holding back is the better long term tool.

Best of luck, I hope some of that has helped!

[Gemma7]

Hi Hunt

I'm sorry to hear you're all struggling so much too.

It's not easy to know how to support someone with OCD and most families at some point will be involved in their loved ones rituals so try not to worry too much, you're really just trying your best with the tools that you have right now. The best thing you can do is help your son access the best CBT he can for his problem. Is the therapist you're seeking through the NHS or private? If it's private then make sure they are at least BABCP accredited. There's more information here on both pathways, 

https://www.ocduk.org/overcoming-ocd/accessing-ocd-treatment/

I also recommend the self-help book Break free from OCD, it's written by three specialists in the treatment of OCD and takes you through the therapy basics. I know it's been a great help to a lot of people here

[HUNT]

Hi Dksea and Gemma7

I am still finding my way around the forum - I am sure there is a better way of replying to you both! 

But I just wanted to say a massive thank you for your messages - your advice and experience is hugely helpful.  It has made me feel more hopeful that there is treatment that works and just need to keep pushing forward until we find the right solution for our son.

Thanks again. x

[BelAnna]

Hi Hunt,

I'm sorry your son is having such a difficult time. He's done so well to get to third year of University despite such significant illness.

Thoughts about mind control and fake realities are usually more typical of delusions so that might just complicate his OCD if he does struggle with thoughts like those, in addition to OCD and might possibly be the reason that he was prescribed Olanzapine; although severe obsessions do share features with delusions. If he does sometimes struggle with delusions, then it's possible that the right Psychologist/Psychiatrist would be able to advise you on how to respond when he is asking for reassurance. I know that for OCD reassurance-seeking you are not supposed to provide reassurance but things may be slightly different if there are complicating factors. 

If your son can afford to see a private Psychologist or CBT therapist then he could start to tackle this blip before it becomes unmanageable! 

 

Edited March 6, 2020 by BelAnna