OCD Action

noodles
Member

Hi

I have a 20 year old daughter with severe OCD. She has been in and out of psychiatric hospitals with this disorder, along with BDD and depression for a couple of years now. Nothing has helped and she has deteriorated over time. She is currently in the Priory as an inpatient and is at the lowest point ever. She is on 1 to 1 supervision as she is suicidal. She has had previous unsuccessful suicide attempts before this. There is no improvement as yet. She has only been there 2 weeks so hopefully things will improve with time. I have been online looking for success stories about either the treatment at the Priory or anyone that has improved/recovered from severe OCD, but have come up with nothing. It would really help her if I could find some information on at least one person who has come out the other side of severe OCD and has been able to function again and lead some kind of life again. Can anyone help us? She is in a desparate situation.

Thanks for any help

Mon Dec 14 2009 19:22:54 #
Unregistered

Dear Noodles

Your daughter is in the right place. But please give it time. I was in the Bethlem for three months after suffering in the same way as your daughter (OCD and clinical depression and suicidal). I ended up with at least 80% control - enough to go to univesrsity and get my degree. I had eleven years of remission and am only ill again because of extreme circumstances (ie my mother dying and my husband extremely ill at the same time). But having got the OCD under control the first time, I knew how to get better and this time round with the help of a brilliant therapist and citalopram I have made significant progrees in just 7 weeks. I now hope to get 95% control so I cqan go back to my studies and I know without any doubt that I can do it.

If I could get better at 49 after suffering from OCD for 26 years your daughter can definitely get control too.

Please send her my love and best wihes for her recovery. Tell her to be brave and to face her fears slowly and she will get that control.
Glad.

Mon Dec 14 2009 19:46:18 #
noodles
Member

Thanks for that Glad.

My daughter was supposed to go to the Bethlem, but as she couldnt self care any more they had no other option but in patient at the North London Priory. I am so glad to hear that you managed to turn it around, all we have had so far are bad therapists, hospitals and psychiatric wards that have no idea about OCD...I just hope they can help her here. As a matter of interest, you say you are on citalopram now, can you remember what medication you were on at the Bethlem? My daughter has been on all the antidepressants and anti psychotic medication to no avail. She has just been put on escitalopram and clomipramine instead. I just hope it affects her mood as it is so low. I will read her your post tonight and hope that it gives her some hope. If there is anything else that you think might help her that I can pass on, please let me know, I would be very grateful.

Just so you know, her main problems are mental rituals, "losing" herself or personality into people or objects by touching or looking at them, and also "transferring" traits and personalities from others into herself. Every thought she has is ritualised and neutralised and she cannot move a step without undergoing some ritual. This has to be the worse mental illness there is.

Lisa x

Mon Dec 14 2009 20:11:07 #
Unregistered

Dear Lisa

I was on clomipramine which is the chosen anti-depressant drug for OCD. It works for many people and it did work for me for the first couple of years. The problem was that I would not face up to my fears so they started to lose effect. I also did not have therapists who understood OCD.

I think the answer is for your daughter to really force herself to do the therapy when the effects start to click in - as both clomipramine and citalpopram really do take away some of the fear and make it easier to tackle the OCD.

My OCD centres on contamination. But in the end one sort of OCD is no worse or better than any other. I having really frightening thoughts which lead me to do rituals (such as touching and checking) and to avoid things and I often get 'stuck' in rooms and on the stairs because of my fears.

My therapist told me today that in the end I will have to let the thoughts wash over me and pay no attention to them. The more you listen to them the more credence you give to them. Tell your daughter that everyone has strange thoughts which frighten them but OCD sufferers (for some reason) are less able to shrug them off. Also tell her that when she stops doing rituals at first the fear will be high but that it will eventually go down. Then after a few weeks of practise the fear will be lower util it eventually gets to an acceptable level.

Tell her short term gain means long term pain ie rituals may get rid of the fear but it comes back with a vengeance. My main fear now is drains (and has been for twenty years) although this is the last in a long string of fears I have had to beat. When I first stood on a drain a few weeks ago my fear was up to ten. Today I walked on about forty wet drains in the rain and had virtually no fear whatsoever. I am really proud of myself as I have never been able to do this in my life and I am now over 60.

Love
Annex

Mon Dec 14 2009 21:00:03 #
noodles
Member

Thanks for that Anne

I just read your post to my daughter over the phone and she listened with interest. I will read this reply too and really hope something clicks in her mind which convinces her she CAN do it and overcome it. I think the more she hears other people have done it, the better....but then thats just MY take on it...she could have a completley different view being the sufferer herself. At the moment, it seems nothing is working, her refusal to challenge things is one of the main problems. I can understand this as her depression and anxiety is so bad after it that she just cant bear it. I hope to god they know how to deal with her at the Priory and can help, I also have to convince her to stay as she is desparate to leave and cries every night on the phone to take her back to Manchester (I think they may section her again if she did though).

I am really glad to hear your story and how you have dealt with the OCD, I know its not a condition you can totally recover from, but you seem to be managing so well, especially if new stressors happen, like the drains you spoke about. It just helps me too as I am losing hope and have never met anyone who has been through the same problem and come out of the other side.

xx

Mon Dec 14 2009 21:18:13 #
Unregistered

Lisa

Please do not lose hope and tell your daughter that she must stay and she can get real control of this illness. Staying is particularly important because in many ways OCD is about getting back the control you think you have lost. So it is best for her to willingly stay. Please tell her this.

Incidentally, I just thought of something I was saying to my therapist today which is intersting. When I was really ill I saw OCD as a curse. But now I have a huge amount of control back I can see that it does have a positive side. For me it has given me a great memory and a wonderful analytical brain. At the age of 61 I have just got my doctorate in politics. So you see we have gifts which compensate. I think that people with OCD tend to be very spiritual people, and very gentle and caring and they also can be very clever. perfection.

My very best wishes to you both
x

Mon Dec 14 2009 21:34:28 #
Liza22
Member

hi

I can sympathise with what your daughter is going through as I too suffer with complex mental rituals. I wouldn't say I have come out the other side as it were as I'm still suffering quite badly at the moment but after being diagnosed and put on anti depressants some years ago I managed to get sufficiently better to the point where I was able to go to uni for three years, have a normal social life and graduate with a very good degree. so while things are bad for me at the moment i cling to the hope that things can and do change and I hope they do for your daughter too.

Mon Dec 14 2009 21:37:23 #
noodles
Member

Thanks Anne for that thought, I will pass that on to. Its hard for me to come up with anything positive to say to her from my point of view that may help so its of great help to me if I get suggestions from sufferes themselves. I never thought about it having a positive side before!

Thanks Liza22 for replying too, I hope things get better again for you. It seems antidepressants do seem to have some effect for people so things might be different in a few weeks time. We have found that complex mental rituals seem to confuse the doctors no end...she had her diagnosis completely changed a couple of months ago by a new doctor who didnt believe it was OCD and diagnosed a psychotic disorder (he didnt know which one) which was disguising itself as OCD. He put her on antipsychotics, which is the only treatment for this....and surprisingly, she didnt get any better. It is really frustrating the lack of knowledge some psychiatrists have around this disorder. At least she is somewhere now where they will have at least heard something similar before. Lets hope the combination of antidepressants she is on works soon. I hope you feel better soon too

xx

Mon Dec 14 2009 21:58:06 #
Unregistered

Dear Lisa

How is your daughter today? Please keep on coming back to the forum to let us know her progress.

We are here to listen.

My very best wishes to you and your daughter
Annex

Tue Dec 15 2009 22:17:29 #
noodles
Member

Hi Anne

Thanks for mailing back and giving your support. She is no better, distressed on the phone. Its hard to talk to her as there is no mobile phone signal in the Priory so the conversation keeps cracking up. That doesnt help matters. Its going to be slow progress I think.

I have copied all the messages on here and from another OCD website that have been really supportive and useful. I have found some success stories on another site that i have copied out for her too. I will take them down to London with me on Sunday.

Speaking to someone today from another group who has been to the Priory himself and has a lot of mixed reviews about how good its success rate is. Some people have benefited and some have not improved. Just hope to god they can do something for her there. At the moment she is not really challenging any rituals, mental or physical and she has already been there over 2 weeks.

Someone also mentioned another unit called Springfields, or something like that, also down South somewhere. Its another specialised OCD unit, but is more rigourous and they push the patients harder apparently. Someone who was severe had improved considerably there with those tactics. Just have to wait and see. A lady who has recovered more or less from OCD may be visiting her also which might give her some encouragement.

I think it will be a stressful and expensive (all the train travel!) Xmas and New Year for me!

Thanks so much for your concern, it is comforting to know others can empathise with your situation. I hope you are feeling ok today

Lisa x

Tue Dec 15 2009 22:57:47 #
Unregistered

Hi Lisa

Please give it time - it took me several months to get better when I was in the Bethlem. The pills sometimes take a few weeks to kick in. This time round, when I was first on citalopram, I was much worse - I was having panic attacks every day as it increased my anxiety. And there was absolutely no way I would or could have challenged my rituals or thoughts. After about three weeks I stabilized and after eight weeks they are really working. In fact I asked my doctor to put me back on them because I recognized their value but had forgotten how very hard the first three weeks were.

I think there are successes and failures at all three hospitals. I also think that the hospital will wait until your daughter is stabilized before they start pushing her. As I have said elsewhere I still do not do my CBT on a bad day as, if I fail, I lose my confidence.

I am a lot better today thanks. I had a panic attack yesterday but sat out my fears and stood by the dreaded drain next door (my new homework for the week).
When I successfully completed it I knew that in a couple of weeks I will be able to bend down and touch it. I did this at the Bethlem and it gave me a huge amount of control.

I am so sorry that this is happening at Xmas and that it will be so costly for you to visit her. I am spending some of the money Mum left me in her will on my treatment as my therapist is not available on the NHS. It will be money worth spent though as, the better I get, the prouder my husband has become of me. It is doing my marriage the power of good. Actually at the height of my illness, 13 years ago I was spending an absolute fortune on toilet paper, dettol,soap and tissues. I was also throwing some of my 'contaminated' clothes away. So at least this is money well spent.

Please give your daughter my best wishes when you visit her. It will be good for her to be visited by a success story. We had a celebrated legendary successful patient come visit us when I was in the Bethlem - we all remembered him from a TV programme. We treated him like a celebrity: 'I am not worthy' and all that. He was a real inspiration to me.
Love
Annexx

Wed Dec 16 2009 9:31:03 #
Parvez Choudhry
Member

Dear Noodles

I am very sorry to hear about your daughter's situation. However, I think she has a lot of factors working in her favour (not least of which is a very supportive mum!), and in any case I believe there is always hope for all people with OCD.

I have heard of many OCD sufferers who have made dramatic improvements after reaching rock bottom and they are now living fulfilling lives. My own story is not very dramatic but at one time in my life whenever I moved my body (even when I just lifted my arm or walked one step forwards) I was flooded with anxiety that I had done something terribly wrong or harmful. There were 3 separate occasions when I came close to committing suicide. But with the help of medication, self-help books, and encouragement from other people, I am now doing well and have a good job and enjoy various activities outside work.

I sincerely wish your daughter and all your family good health, peace, and happiness in the coming year.
Parvez

Wed Dec 16 2009 15:05:24 #
noodles
Member

Hi Anne

Thanks for your post. I am glad the antidepressants have worked for you..even though like you say it takes a while to kick in. I shall tell her that, to give it a few more weeks and see if she feels better then. The trouble is, they are pushing her now when she feels her worst to challenge anything, they cant afford to wait until the effects kick in i suppose.

I am glad to hear you managed to stand by the drain. Its really good that you can do the exposure work yourself and build on that. You know it has worked before so it gives you confidence to do it again. It must be so disheartening though that even when you have done the exposure once and mastered it, it comes back again if you are under stress. Honestly, this bloody OCD has to be the most challenging mental illness there is! At least with other illnesses, medication can stabilise the sufferer so they can lead a bit of a life and dont have to do all this work daily....as long as they keep taking the meds. It must be so exhausting.

I am glad she got the funding for the Priory because no way either of us can afford to pay for private treatment. I am a single parent and not working at the moment due to my own anxiety problems and stress and obviously my daughter isnt either. Manchester NHS Mental Health is pretty skint by all accounts and they wouldnt have funded the place either so it is from the Commissioning Group, not sure where. Its a shame you have to spend your savings on therapy, but if it works then it is worth it. I know what you mean about spending money on stuff as well, the amount of money we have both spent on "new" items for everything she does is unbelievable. She has to have new clothes, new everything, each place she goes, and the local pharmacy is doing a great trade in latex gloves thanks to us, we buy in bulk!

I will pass on your latest message...I am curious as to who the "famous" OCD person was in the Bethlem..."I am not worthy" that made me laugh...anyone that I would know?

Lisa x

Thu Dec 17 2009 17:45:42 #
noodles
Member

Hi Parvez, thanks for your mail.

I am so glad to hear that you are doing well and enjoying a fulfilling life. It sounds like you had OCD quite severe and disabling and managed to overcome it. You say you did it by self help books, medication and support from others. Are there any books that you would recommend? i am so pleased to read another story of someone who has overcome it. Thanks for helping and inspiring me....I really hope my daughter can utilise these forums one day for herself, its hard doing it through a third person as I can get all the advice in the world, but its her illness not mine, and I just hope some of my positivity from this can rub off on her.

thanks again

Lisa

Thu Dec 17 2009 18:21:59 #
nettlenoo
Member

hi
i wanted to write and say anti d's are working for me as anne has said it takes a little while ive been taking mine 8 weeks now and im feeling so much better and more confident i wish you and your daughter all the luck in the world. i found it hard to understand why i was ill so i have empathy for you trying to help your daughter is so difficult but i do believe there is light at the end of the tunnel. stay strong hun and we will offer support and advice to you through this very tough time, your daughter is lucky to have a caring considerate mother such as your self
much love annette xxx

Thu Dec 17 2009 18:28:40 #
Unregistered

Hi Lisa

I do not think that I will have to take medication for ever - probaly only for 6 months. I also hope that this time I will keep my control and not lose it again. The stress I was under was truly huge -enough to floor anyone. I was trying to finish my PhD and visit my Mum in a nursing home several times a week. Then my husband had a brain haemmorage. A month later my mum died. So I had to organize her funeral and execute her will.

The person who visited was called Billy a larger than life rogue who had a violent past and was now afraid of hurting people. He had apppeared on a TV documentary we had all seen about the Bethlem. It was partly his success story which made us want to go there. He turned up one evening unannounced. He had us in tears of laughter he was so funny.

I still get through one of those giant boxes of latex gloves a fortnight, but other than that my expenses are low except for the weekly therapy. Incidentally, a bottle of Dettol now last me at least six months so I am rather proud. The smell haunts me so much I can hardly bear to use it.

I am sorry they cannot wait for the medication to kick in. But if your daughter could face the fears when she has not stabilized she will make fantstic progress when she has. I had to start the exposure when the medication was not working because the fear of what I may have done (apparently gone the down the drain according to my brain)was greater than the fear of standing on the drain. I rang my therapist in desperation and said the fear was 100%. She said that as it could not go up higher I may as well go out and face my fear. My husband who was despairing of me got home from work while I was standing there and he was totally gobsmacked.Since then he has been 100% supportive which is as well since the double galzing people working next door thought I was a total loony standing there in the wind and rain on a wet drain.

Love to your daughter
Anne
xx

Thu Dec 17 2009 18:31:12 #
Lumpy
Member

Hi Noodles

Having suffered with toxic thoughts for almost twenty years, I was diagnosed with severe OCD in September of this year. I relocated from Devon to Cheshire to commence management of a Children’s Home. Regrettably, due to anxiety, I was unable to start work.

I am fortunate in that I receive wonderful support from professionals at Altrincham Priory. I am currently prescribed 100mg of Sertraline and participate in a twelve week CBT group. My Clinical Psychologist is one of the leading authorities in OCD. I fully expect to recover from this dreaded illness.

Recovery is difficult. Fears have to be faced with reassurance stopped. I can recommend the book by David Veale titled Overcoming OCD. In particular, ask your daughter to gain an understanding of her ’vicious flower.’ It is this that is the OCD engine.

I now know that everybody, whether they have OCD or not, has inaapropriate thoughts. It is the meaning that we sufferers of OCD attach to these thoughts that is the problem.

As a result of this meaning we attach ’petals’ to our thoughts which keep the flower alive. Petals are:- the seeking of avoidance, undergoing rituals, experiencing anxiety and developing an ’attentional bias’ to whatever our obsession is. All of this adds meaning to the toxic thought (The Vicious Flower) and hence the fear increases. This is the essence of CBT. (Cognitive, Behavioural Therapy.) Thoughts influence feelings which influences behaviour. All three factors influence one another.

Sufferers of OCD have common traits. These can be inflated responsibilty, an over importance of thoughts, intolerence of uncertainty and perfection.

I will get better and I am sure your daughter can and will recover. I hope the information I have shared with you, that I have gained from being a patient at The Priory myself will assist.

Lumpy
x

Fri Dec 18 2009 16:29:48 #
Truddles
Member

Hi Lumpy,
Hope that you are ok.
Your post was very informative, I learnt quite a lot from it. I agree with what you say. I have read the book but at the moment I'm finding it difficult to remember what I've read. But I liked and understood the 'vicious flower'.
Thank you
Truddles

Fri Dec 18 2009 16:40:06 #
Cuthbert ffoliott
Moderator

Hi Lumpy -

nice call. You are spot on with that remark about 'inflated responsibility'. I must admit that at first, long ago, I thought it meant: self-importance. That is not the case. It stands for: feelings of guilt, an exaggerated burden of being somehow responsible for all kinds of worries and harm that may beset others. Personally, I think it also is linked to an awful dread that can strike a person with OCD; e.g. a woman who just gave birth may have horrific fears about throwing the newborn down from the balcony. This never happens. The fear is about: am I a good person? How can I be a good mother if I get this awful fears in my head?

It's almost as if the brain of the mother conjures up impulses meant to make her feel as guilty and bad as possible.

Bye, Cuthbert.

Sat Dec 19 2009 12:00:11 #
Unregistered

Dear Lisa

I am off the forum for a few days. But I just thought I had better write to find out how you and your daughter are coping.

My thoughts are with you both
Love
Anne

Sat Dec 19 2009 17:07:15 #
noodles
Member

Hi Lumpy

Thanks for that. I am glad you are getting help and starting recovery from your OCD. It sounds as though you have a good psychologist, and that is one of the main things ( i have heard from other people) that can assist in recovery...unfortunately there are a lot of bad psychologists out there too.

My daughter is under David Veale at the Priory in London, he is one of the leading figures in OCD so I hope that he can help her in some way. Its a shame she wasnt referred to the Altrincham Priory ( we live in Manchester) if there is a good specialist there...it would have been easier on all of us as travelling down there each week is no picnic, and very expensive for me.

I know she has that book, as he gave her a copy but she cannot read anything at the moment, so i may get a copy for myself and read it.

Thanks so much for your words of encouragement

Lisa x

Tue Dec 22 2009 19:41:38 #
noodles
Member

Hi Anne

thanks for your reply and ongoing concern.

It made me smile, that bit about you standing on the drain and the double glazing men wondering what on earth you are doing! Good for you!! Sod what everyone else thinks

Daughter still struggling, very down and upset constantly, I just have to keep telling her its part of the process to get better. HOpefully she will come out of it soon.

I hope you have a lovely Xmas and new Year.

bye for now

Lisa x

Tue Dec 22 2009 19:45:30 #
Truddles
Member

Hi Lisa,
How did Christmas go with you and your daughter? I expect that it was a struggle for you with all the travelling etc. Is there any sign of improvement or are things still difficult?
I have been thinking of you.
Truddles

Sat Dec 26 2009 17:04:04 #
Unregistered

Hi Lisa

How are you both doing? I have been worried about you both.

Please give your daughter my love again and tell her to keep on fighting. We will be here for her when she leaves the Priory. So she will have plenty of support. I have decided to stay on the forum indefinitely and am now a proper member.

Best
Annex

Sun Dec 27 2009 18:27:30 #