Can't cope with OCD anymore

[stars345]

I have diagnosed OCD. I had CBT along with ERP (exposure and response prevention.)
This was in 2015. It helped at the time.

However my symptoms have returned gradually over the last 3-4 years, to the point now where I am regularly vomiting, sweating, dealing with severe anxiety, and struggling to concentrate. My trigger now is something completely different than it was back then.

My OCD presents as obsessive thoughts, rumination and some rituals to help, but it's mainly the obsessive thinking and the anxiety state that brings on.

I am on Fluoxetine 30mg. I have previously taken Sertraline.

I don't want to call the GP, they will send me back in a waiting list for CBT and I'm not sure that's the answer?

I have emailed an OCD support charity but after reading their FAQ I can see that they can't really help me.

It's ruining my life. My mind is a prison, I'm torturing myself but I can't stop it. It just won't stop. My mind won't shut up. I'm absolutely miserable. On edge. I think of nothing but the trigger 24/7. And it's a ridiculous trigger. Deep down, intellectually I know this, but it's got to the point where I can't even participate in normal conversation as I'm either thinking about my trigger or trying to decide a plan to escape (I.e run away, shirk my responsibilities, sometimes suicidal ideation).

I can't do this anymore

Youre not alone op. Many of us on the MH board are OCD suffers. We have a support chat on here called general support thread 2 you should join. No answers but have you asked about upping your meds? I'm on 60mg. Finished cbt and awaiting high intensity therapy

I've just recently upped them to 30mg, but it's been around 6 weeks so I could ask for it to be upped again.
I'll have a hunt around for that thread thank you. It's awful, I just want it it to stop.

It's a horrible illness. I wouldn't wish it on anyone

I could have written this exact message a few months OP! It sounds like you are having a relapse! I too had one in December after losing my beloved grandfather. The anxiety is so physically you cannot rest and when you do the “thoughts” stir up and make you anxious all over again. I just wanted to message to let you know if I can get better you can too. You will get through this keep going! A mixture of medications helped me and spending as much time as possible keeping busy!

OCD is a terrible affliction and I'm so sorry it's got so difficult for you again. 2015 is a long time ago but do you remember any of the steps of ERP? My DC has OCD and over the years we have had to design our own steps and work through new issues using the ERP we were taught (at about the same time as you were being treated). DC is now an adult but finds ERP useful still.

@MummytoBoth what medications do you take if you don't mind? Mine are clearly not working. I may need to try something else.

@Homebird8 So sorry about your DC. It's awful. I wasn't even aware OCD could 'relapse'. Last time, my intrusive thoughts prevented me from cooking (because I thought I would stab myself/hurt someone else with a knife) and leaving my home and going any distance because I thought I would be in a car crash. It became debilitating to the point that I refused to enter the kitchen or even let my husband go to the shop. The therapist made me sit in the room with a knife to my arms and made me 'sit' with the thoughts, and realise I wasn't going to hurt myself or him. For the leaving the home he set my appointments for 2 towns over to make me drive for a while.
I feel like the steps are so specific, that I can't recreate them as my trigger is now something totally different. Not even related. I can't face sitting with it, I really can't, also, it's out of my control as well, it's not something I can manipulate to test resilience.

I'm honestly so exhausted.

@stars345 it sounds as though your ERP was helpful but not the same tiny steps as my DC used. Whenever they have had a relapse it's always been something new. It's as if the mind knows how strong you can be with the previous issue and looks for a weak point.

In my DC's case we have had thoughts of external agents trying to harm the family and pets, poisoned crockery, cutlery and food, intolerance of any religious imagery, and biological contamination amongst other things. They have resulted in number pattern repetition, inability to eat, over washing and spitting, dancing and standing on one leg, inability to cross a tiled floor or go past a stick on the ground, and running into the dark and the rain to be away from the feared situation.

Each time we have made tiny steps toward the desired outcome so, for example, with the poisoned plates we started with being able to sit a table with the cupboard door open with the plates in sight. Then another step was having them on the table, and another to choose one to eat from, then accepting one chosen by someone else. We worked through this with mugs, glasses and bowls too. One step at a time with a whole week of doing each step at first and later just a couple of days as the anxiety reduced.

Noting down the level of anxiety out of 10 on first exposure each day was vital as was noting the reduction over a 5 and then 15 minute period. This way progress could be seen. If anxiety was at a 10 on day 1 and reduced to 8 over 15 minutes then it was obvious by the end of the week that we started at 5, for example, and ended at 2. This teaches the brain that the activity is safe and the anxiety will subside. When the anxiety response became bearable then we could move to the next step.

Eventually we found there is only a minimal and bearable anxiety response or none at all and we could move on to deal with anything else that was a problem.

My advice would be not to try to deal with everything at once. Pick a battle you need to win. I completely get that you might not want to share what you're going through but can you think what your tiny steps might be if you were going to try this? It wouldn't be a commitment to doing it, unless you want to, but it might remind your brain that there is another way forward which could be helpful.

I hope I'm not being totally impertinent in sharing and suggesting. My heart goes out to you. I know how impossible it can seem. Knowing the ERP works for you is something to hang on to. I apologise if you have mentioned it already, but have you seen your GP about your OCD again this time?

Can you get some private help while you wait for the nhs list? Hold onto the fact treatment helped before. It can again.

My daughter has a very similar difficulty with OCD and obsessive thoughts. It was awful for her. Apparently it runs in families and her grandmother on her dad’s side had it and back then, she had to leave a good job which she loved.

My daughter is on fluoxetine now but also has a private psychologist as well, who specialises in OCD and who she sees periodically.
She has adopted the mindset that she will need to see a psychologist for life and can’t rely alone on meds. It’s expensive but not as expensive as not working at all. She is doing well now and just successfully started a demanding graduate job.
Hoping you can hang on and find a way through it. Definitely surround yourself with good professionals.

I have OCD.

I took Effexor for it and that seem to knock it out pretty well along with therapy.

There are quite a few CBT apps these days, if you want to keep up with CBT between appointments. The one I liked the best is called Woebot.

I managed to get it under control but yes I did have a relapse when I temporarily stayed with a relative who is a severe hoarder.

I’m sorry you’re having such a horrid time at the moment, I’m also someone with OCD and have had numerous relapses after my first big breakdown in 2015.

Fluoxetine didn’t do anything much for me, but Sertraline has been a god send. I have been on various dosages from 25mg a day at the lowest right up to 200mg when really struggling - I find that when I am really struggling a higher dosage helps to almost turn down the volume of the obsessive thoughts, as well as help controls my anxiety physical response which for me feeds into my obsessions.

Having done CBT and ERP numerous times, I have found going back to NHS services useful in the past so it might be worth looking in to a referral - you could perhaps go through IAPT if you didn’t want to talk to the GP.

Have you got any supportive people you could reach out to?

First my mum and now my husband have been through the ERP process with me and they are very helpful when I’m having a relapse. I find being able to say my obsessive thoughts out loud and discuss them, does help me to process things.

But as a PP mentioned, it is something I have to actively manage in my life, and I’ve had to come to terms with the fact I will never be ‘cured’ because it’s just the way that I am wired. For me there is definitely a genetic component as my dad has tendencies and two of four grandparents (one on each side) also probably would have been diagnosed if they were born later.

I've got generalised anxiety but with aspects of OCD and I've found the Dare podcast incredibly helpful. They have an app and a book (it started with a book I think) and both were good, but for me it was the podcast that was really transformative. And obviously you can listen to latest one but catch up with as many as you want when you want/need to. All similar format, covering a range of questions from listeners, including people with ocd type anxiety, and the presenters are just great, really reassuring and lots of humour and warmth. I really felt the approach and ethos just really made sense for me and I could really see the logic of the whole thing. It seems to be more of an ACT model than CBT but quite an active one if that makes sense.

Paroxetine 30mg is good for obsessive thoughts.

It’s not you. It’s not your fault. It’s just an unpleasant illness that does respond to
treatment in the end. 💐 that you richly deserve.

Thank you all for the input. I really appreciate it. @Supersimkin2 I cried when I read that I deserve treatment. I've told myself for so long it's ridiculous and I should be thankful for the life I have, not wasting it shaking in the bathroom over some ridiculous thought that won't leave.
@cherryassam I totally forgot you could self refer! Thank you I have done that today and got a txt to confirm.
@HappyHedgehog247 I searched my area for a private psychologist who specialises in OCD and found the therapist that helped me in 2015. He must of left the NHS and set up his own practice. I have emailed him today. Even if I can only afford a couple of sessions, it's something.

I will also call my dr in the morning and ask for some different meds maybe and suggest what has been said on here. I literally just want a quiet mind. Is that even possible? No more constant thoughts running, ruminating. I'd give up my entire personality, the things that make me, me. If it meant I was happy and free of this I'd do anything, take anything.

@EmsL Podcast saved and ready to go for later thank you.

Mindfulness apps (Calm, Headspace) and being in nature are the only thing that I have found to help

I spoke with the therapist today who treated me in 2015 and he will see me from next week. It's going to cost so much money but I'm at my lowest point, I really am. I vomited today at the thoughts. I hate this so much. I can only hope that it will work and make life bearable, just survivable, because at the moment I feel awful, like there's just no point

That sounds like positive progress, going to see your therapist

Did he help last time? If so, there is every reason to believe he will be able to help you again this time.

He really did help. So it's the best chance I've got really, if not I'm hoping he can recommend a therapist that would.

He seems to think that my symptoms are presenting as PTSD from a traumatic time about 6 years ago, and has suggested EMDR, although we are having a full session next week to go over my full symptoms and possible treatment.

It sounds like really positive news that you’ll be seeing him from next week. It will hopefully be helpful to talk about different treatment options.

Different things work for different people, but I find it helpful to try and keep as much of my brain busy as I possibly can when I’m really struggling with rumination and thoughts, especially when waiting for treatment to start.

fellow OCD gal here! Remember that antidepressants work differently for ocd, studies show they take longer to work and you tend to need higher doses. So don’t be afraid to get to the top of the dose. I did with sertraline and it’s really helped. EMDR helped a little, CBT and lots of research about OCD helped. But maxing out the meds was what really kicked me out of the horrendous cycle. I’ve had ocd for 30 years so it’s deep inside my whole being, and like a PP said I don’t think it’ll be “cured” but I can absolutely live with it, I can see the light at the end of a tunnel, I can label my thoughts.

Finally if you’re desperate I’ve seen some really promising looking studies for people who are medication and treatment resistant for OCD. Look up MAC clinical research. I don’t work for them or anything, but I’ve been following some of their clinical trials.

I completely understand, fellow OCD sufferer here. Worth upping to 40mg, apparently up to 60mg recommended for OCD. Xx

@CityofRojas I will look up that trial. I believe that mine is a big mix of PND, OCD, anxiety disorder and PTSD, but the OCD side keeps the thoughts from all the rest going in my head. Makes me obsess over it all and the anxiety kicks in from that. I honestly wish I could have a break from my brain.

I read a comment somewhere and the person said they didn't want to die, but they didn't want to live. And I resinate with that.

I'm not actively suicidal, but I can't live like this.

@Jeannie88 I'll try upping the dose before I come off it and try something else then. I just want my mind to quiet. I'd give anything to be silent in my brain.

@stars345 has found our support thread on this board. Everyone is welcome to join if you'd like. Gemeral support thread 2 x

Are you able to link the support thread here, as I can’t seem to locate it? Thanks

I'm so sorry I'm not sure how to but its at the top of the MH board now x