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New Here - Pure O, Harm OCD, Intrusive Thoughts History. Just Restarted Clomipramine After Relapse.

thegoffather2 profile image
27 Replies

I can remember suffering with a form of OCD back to childhood. Repeatedly checking things for safety like the gas on the cooker and locking doors. It first became a problem of more severity in 2001, then again in 2008 and has been ongoing but maintained ever since. I have done CBT, Mindfulness and Counseling more than once and the main drug of choice for me has always been Clomipramine. The form of OCD I have had since 2001 I believe to be referred to as Pure O and in particular my issues have always been horrific thoughts containing great detail about harm I would do to my loved ones. Compulsions and rituals would help to ease that anxiety but as CBT teaches us, it is not the productive thing to do. Following my spell in 2008, I was off work for 2 years and on benefits. After getting settled on Clomipramine and doing therapy, I managed to get the condition under control. I did a lot of research about OCD and mental health in general and like to think I am pretty clued up about it all, I then gained new employment as a Support Worker that did include Mental Health Advocacy so I am always kept on top of my training. I managed to travel to see the places in the world I wanted to see, find a Girlfriend, get married and buy a house. This time period throughout 2010-2016 wasn't comfortable, but I was well enough to get by. In 2016 we decided we wanted to have a baby. Unfortunately, one of my main side effects apart from fatigue and excessive sweating was sexual dysfunction. The medication now had to be reviewed and adjusted to enable us to do this. We do now have a 1 year old but since withdrawing from Clomipramine things have been very dark. For replacement, I have tried all the SSRI's, all the recommended vitamins and supplements such St Johns Wort, 5HTP, CBD Oil etc, I have tried eating the right foods, having a well balanced diet and have always exercised anyway but I have had no luck in getting anywhere near the relief I had whilst taking Clomipramine. Since discontinuing with it in 2016 I have also been diagnosed with ADHD (I am apparently part of a missed undiagnosed generation) and Chronic Fatigue Syndrome, which I think is a long-standing side effect from using Clomipramine that never went away.

Since My Son was born a year ago my Harm OCD thoughts have really re-manifested themselves, and are mainly aimed at him. Its almost as if the more joy and love I receive from him, the more intrusive and horrific the thoughts are. Due to this not being my first instance of these symptoms and I am well trained and researched, I know what it is and have been really good at managing the compulsions and rituals. On Clomipramine that would normally be enough to erase the thoughts but unfortunately not this time. Its as if it is more psychotic, like I am now having these images without expecting to do anything to relieve the anxiety. Like I said, I have tried most of the SSRI's including earlier this year, Sertraline which did help with these thoughts but gave me unmanageable fatigue and insomnia, which never eased after 12 weeks. 8 weeks ago, I was then switched to Fluvoxamine, 50mg for a month then 100mg for the second month. I can confidently say this is the worst drug I have been on, bringing more sleep deprivation, returning the intrusive horrific thoughts and culminating last night when I had terrible adrenaline rushes that nearly pushed me towards acting on the thoughts towards my Son and Wife and my response to that was writing a suicide note and planning to end myself before I did anything to them. Luckily my Wife intervened, I broke down and called the Crisis Team. It didn’t get as for as going to A&E for sectioning but it was a possibility. Before taking Fluvoxamine, I was in work (now signed off long term), the thoughts were not there (now they are) and I had never even thought about suicide before. It literally felt a lot more than OCD and I feared I had developed a more psychiatric disorder. I don’t think I really need to go into any greater detail on here as I am sure people are aware of this terrible illness and if you have read all of my very long story above it is much appreciated. I suppose the reason for my contact is for tips around medication and side effects, what people have found affective in these times of crisis and if anyone has had results with counteracting side effects. I have today been given a prescription to restart the Clomipramine. I have got to taper it up slowly as I taper down the Fluvoxamine. I have also been temporarily given Lorezepam in case I get any high states of anxiety like last night. I am hoping I get as good as relief from Clomipramine as before but if anyone can share any tips around counteracting side effects such as sexual dysfunction, excessive sweating, fatigue and basically just being less lazy it would be greatly appreciated. The one good thing I will say about the Fluvoxamine was that it was the first time my social anxiety and sweating improved, but after last night that’s nowhere near enough.

I hope my post might help others also. Kind Regards.

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27 Replies
Bird-67 profile image
Bird-67

Hello and welcome Jgoffin79,

Oh I do so sympathise with you as I have been where you are several times over a LOT of years and it’s so so scary.

I haven’t found any medication that takes the thoughts away but venlafaxine dampened them. Unfortunately they stopped working after 14 years on them.

I have found CBT very helpful though as you have also had.

I might not have been much help but just to let you know I am here for you whenever you want to talk.

You can also private message me if you want to go into more detail.

And by the way, however much you think you could act on the thoughts I promise you you never ever will.

Good luck 🤞🤞

thegoffather2 profile image
thegoffather2 in reply toBird-67

Hi All

Thanks for the replies, although I obviously do not wish this on any of you, it is a great comfort to know I am not the only one! It’s vicious and I thought I had got rid of it once and it’s awful the bully it being returning to target my child. It’s almost as if the more love and good feeling I get from him, the worse the thoughts later come slowly followed by heavy adrenaline based anxiety.

It’s good to hear you are all getting some relief and raggedcliffs I thank you for your reminder about the awful first 12 weeks on Clomipramine, on day 8 I am experiencing this but will persevere now you’ve reminded me cause I do remember the results taking a while last time.

Bird-67 thank you, I might take up your invitation to private message later on this evening and Samantha I am going to message you also as I have a friend who has had some success with supplements for her Fibromyalgia! Thanks All X

Okhan1 profile image
Okhan1 in reply tothegoffather2

Hi I just wanted to touch base with you? Are you doing better now, did the Clomipramine work? Just checking up on you.

thegoffather2 profile image
thegoffather2 in reply toOkhan1

HiClomipramine has been the most successful in curbing my OCD yet again. I’m not completely cured or how I’d like to be, quite a lot of days are uncomfortable. But I’ve got back to a place where I can work part time and get some enjoyment from life.

I hope you are well.

Thanks

Samantha12 profile image
Samantha12

I really sympathise with you. I have fibromyalgia and harm OCD so I can understand the fatigue and horrific thoughts. I'm currently on amitryptiline which helps me get a decent nights sleep and helps with the fatigue and pains then I take gabapentin in the day to take the edge off the anxiety, it helps just enough to be able to then apply CBT techniques that I have read about- I start group therapy next week and one to one next year...still on the waiting list! I also have the sweating issue but would rather that than the thoughts.

thegoffather2 profile image
thegoffather2 in reply toSamantha12

Hi All

Thanks for the replies, although I obviously do not wish this on any of you, it is a great comfort to know I am not the only one! It’s vicious and I thought I had got rid of it once and it’s awful the bully it being returning to target my child. It’s almost as if the more love and good feeling I get from him, the worse the thoughts later come slowly followed by heavy adrenaline based anxiety.

It’s good to hear you are all getting some relief and raggedcliffs I thank you for your reminder about the awful first 12 weeks on Clomipramine, on day 8 I am experiencing this but will persevere now you’ve reminded me cause I do remember the results taking a while last time.

Bird-67 thank you, I might take up your invitation to private message later on this evening and Samantha I am going to message you also as I have a friend who has had some success with supplements for her Fibromyalgia! Thanks All X

Samantha12 profile image
Samantha12 in reply tothegoffather2

Thanks.

Hi there.I have had similar to you on and off for over thirty years. I reckon probably over three years has been lossy to this illness. I too have tried lots of meds but clomipramine is the only one that’s ever worked although I find it’s hell for about twelve weeks before it really starts to kick in. I would rather suffer the side effects than be extremely ill. All the best.

thegoffather2 profile image
thegoffather2 in reply to

Hi All

Thanks for the replies, although I obviously do not wish this on any of you, it is a great comfort to know I am not the only one! It’s vicious and I thought I had got rid of it once and it’s awful the bully it being returning to target my child. It’s almost as if the more love and good feeling I get from him, the worse the thoughts later come slowly followed by heavy adrenaline based anxiety.

It’s good to hear you are all getting some relief and raggedcliffs I thank you for your reminder about the awful first 12 weeks on Clomipramine, on day 8 I am experiencing this but will persevere now you’ve reminded me cause I do remember the results taking a while last time.

Bird-67 thank you, I might take up your invitation to private message later on this evening and Samantha I am going to message you also as I have a friend who has had some success with supplements for her Fibromyalgia! Thanks All X

thegoffather2 profile image
thegoffather2

Hi All

Thanks for the replies, although I obviously do not wish this on any of you, it is a great comfort to know I am not the only one! It’s vicious and I thought I had got rid of it once and it’s awful the bully it being returning to target my child. It’s almost as if the more love and good feeling I get from him, the worse the thoughts later come slowly followed by heavy adrenaline based anxiety.

It’s good to hear you are all getting some relief and raggedcliffs I thank you for your reminder about the awful first 12 weeks on Clomipramine, on day 8 I am experiencing this but will persevere now you’ve reminded me cause I do remember the results taking a while last time.

Bird-67 thank you, I might take up your invitation to private message later on this evening and Samantha I am going to message you also as I have a friend who has had some success with supplements for her Fibromyalgia! Thanks All X

Sallyskins profile image
Sallyskins

It can be tricky getting medication right. I've had good experiences with it, and was on clomipramine for many years. The only real drawback with it was that it made me feel dopey and was known to fall asleep on my desk at work! Obviously though it works well for you, it isn't good for you, or your relationship, to have sexual dysfunction.

I've been on sertraline now for quite a while, and it's better as it doesn't have the dopey side effects. I top it up with a low 5 mg dose of an antipsychotic called aripiprazole. I am not psychotic, but a low dose with an SSRI can boost the SSRI's effects.

I did try St John's Wort but didn't get on with it at all. I don't think it is effective for OCD.

I do sympathize over your feelings of harm. One of the many horrible things about OCD is that it targets the things that matter most to us, that are most precious and meaningful. Of course you would never harm your son, and I'm sure you know that, but that doesn't mean the feelings are easy to bear.

Be careful of taking anything for your ADHD since you have OCD as it can make an already hyperactive part of the brain even worse.

thegoffather2 profile image
thegoffather2 in reply toSallyskins

Hi Sally

Thanks for you reply. Unfortunately, I have tried everything else, all the SSRI's including Sertraline and all different supplements including St. Johns Wort. I wouldn't have gone back on Clomipramine without a lot of trepidation and thought. I just need to be the most affective me I can for a bit and have a bit of relief. I hear what you are saying about the ADHD drugs too. I am seeing a specialist in January to discuss options and will raise this. Thanks for your advice. Can I ask about your add on (aripiprazole) as my CPN has mentioned that to me before. What does it help with?

I hope you are doing well with your recovery :-)

Sallyskins profile image
Sallyskins in reply tothegoffather2

Thanks! Some people do struggle with getting the right medication. I'm sorry that it's happened to you.

Clomipramine is a pretty good medication, though as you know the side effects can be a problem. I decided to go with the suggestion of aripiprazole after a lot of thought, as I had previously tried another antipsychotic called sulpiride, which can also give a boost to an SSRI, but it made me put on a bit of weight and I didn't want to gain any more.

So being assured that weight gain was unlikely with aripiprazole, I went on it. I haven't had any weight gain with it, and it suits me well. It's something to do with dopamine, but don't ask me the molecular science behind it! It is supposed to boost the SSRI's effects. I immediately found my mood improved. Colours appeared brighter, if you get my meaning. I'm on quite a high dose of sertraline, 300 mg, which is occasionally prescribed for OCD and can go up to 400 mg.

There are new drugs being developed for OCD, which is surely a good thing for the people who don't do well with current medications.

I have heard also that gelatin can help with OCD. Just plain jelly! I did try it for a while but didn't persist and am thinking of giving it another go. After soaking the gelatin sheets and mixing them with hot water you can either let them set and eat as jelly, which is not very palatable unless you make it into a dessert, or you can drink it down.

I do hope you can sort something out with your medication. It can be a great help. But are you also getting CBT?

thegoffather2 profile image
thegoffather2 in reply toSallyskins

Wow, you sound like you really know your stuff. Yes I started CBT today, its a refresher, I have done it before but think I need topping up.

I wonder if the aripiprazole would work the same added to Clomipramine with it being a Tricyclic. As you say it helps with Dopamine which is what some of the ADHD drugs work on also.

Yes, I really wish I could have tolerated Sertraline as it did help with the thoughts but the insomnia, drowsiness and toilet issues were too severe. I am glad it works for you. I am really please you are getting some results from the combination.

Sallyskins profile image
Sallyskins in reply tothegoffather2

Not sure that I know that much! It could be worth asking about whether clomipramine and aripiprazole go together.

Good that you have started CBT. It isn't an easy therapy to do, but it is effective.

Sallyskins profile image
Sallyskins in reply tothegoffather2

Another development I have been reading about is to do with glutamates. There has been some research involving excluding monosodium glutamate, widely used as a flavour enhancer, from diet having a beneficial effect with OCD patients.

thegoffather2 profile image
thegoffather2 in reply toSallyskins

Sounds, interesting. You will have to let me know if you get any results. Thanks again

Sorry you have had such a bad time. I found clomipramine brilliant but takes 3or 4 months to kick in. I am gutted as been discontinued in uk. Yes

thegoffather2 profile image
thegoffather2 in reply to

Hi

Who has told you it has been discontinued? I am in the UK and am still getting it. I know there has been a shortage but not discontinued

in reply tothegoffather2

Pharmacist also gp told me discontinued. Been on and off it for 20 years and hate having to change because I know it works eventually.

thegoffather2 profile image
thegoffather2 in reply to

I’d see if you can get a 2nd opinion, it’s definitely available up here in Nottingham. I’ve only just restarted it and I doubt they’d have let me if it was going to be discontinued

Thanks. I am in S Wales. Hope I can get it somewhere as I find it works best even though it takes ages.

thegoffather2 profile image
thegoffather2 in reply to

Yeah I’m on 3rd month and just starting to get the therapeutic effects again. Side effects are a bugger though!

Have a look into it, it’s definitely available up here

Corgi86 profile image
Corgi86

I know what those adrenaline rushes feel like. I have felt them many times. It feels like an incredible force pushing you to act on the thoughts. I really hope the Clomipramine helps you again. Ocd is such a terrible disease.

thegoffather2 profile image
thegoffather2 in reply toCorgi86

Hi

Thanks for the comment, it already is helping. It’s just the bloody side effects now!!! 😩

I suppose you just have to weigh up which you can tollirate more, the side effects or Pure OCD, at this point it’s the latter I need relief from

Pob76 profile image
Pob76

Hi, I’ve been going through a relapse of harm ocd after ten years of relative normality. My seroxat crapped out on me in November.I’ve tried Mirtazipine with no luck and now I’m on fluvoxamine for the past two weeks and I’m in hell. Today I’ve had the same adrenaline fuelled panic that had me convinced I was going to hurt my kids.This nearly broke me but I’ve calmed somewhat and resolved to see my GP tomorrow. I’m still concerned that it’s still to early to quit on the fluvoxamine? Maybe a benzo would help with the panic,I’ve never tried them before and am scared that they’ll make things worse...anyhow thanks for your post and your bravery in sharing,it’s brought me some comfort knowing that what happened me today doesn’t mean I’ve cracked and turned “psycho”. I just hope I can get this under control again.

thegoffather2 profile image
thegoffather2 in reply toPob76

Hi

Sorry to hear you’re going through this again. The Fluvoxamine was absolutely fantastic for my social and generalised anxiety, irritability, sweating etc.... just didn’t work for me with the OCD or intrusive thoughts, to be fair I didn’t take the dose high enough or last the 12 weeks. Since I switched, the OCD and thoughts have improved but all the other stuff has came back as side effects 😩 This doesn’t mean however that it won’t work for you, maybe ask about benzo use to help whilst you get to the higher dose needed? Everybody’s different. I’m glad my post was of some help, feel free to private message me if you ever want to talk! You will get there 👍

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