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Guest Nasdaq14

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Guest mynameisbrian

Sorry for the delay in replying, Ashley. I have been discussing it all with my husband and daughter.

Thank you again, so much, for your offer, but my family is still so opposed to my having more therapy.

There isn't a way for CBT (or whatever the hell the name is, I don't know the names of all this therapy stuff I use) to not work. Exposure is not always the right way to get rid of anxiety. There are general guidelines that every person with OCD should follow, then there are little specific cases where therapy needs to be switched up for different types of obsessions. Your therapists and doctors have failed you. If you have a thread with which obsessions you have, I can reply to it, or you can send me a message, and I can help you.

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Guest Tricia

Thank you, Billy, you are so right about the 'team' - our loved ones. A friend of mine left a specialist unit in quite a bad way and none of the professionals wanted to know any more. The family team, fortunately, was there to pick up the pieces.

Also, thank you, Brian. I don't have a thread, and won't start one because most of my experiences are not positive and I do not want to discourage others. CBT can be very effective and I truly don't want to list when it isn't. However, I will write to you about my past therapy.

I have a friend in America who has just completed her sixth session of CBT (inpatient). Twice she was treated by experts. I guess you feel they all failed her. Can it not just be that some of us do not respond? I cannot bear hearing that professionals, or those with OCD, have failed. Of course, it's true that not all therapists are good at their jobs and some may have indeed failed us, but that is certainly not true in every case, as even the specialists are unable to help everyone. I am of an age where my friends are mainly over 60 and some of them have battled their OCD for many decades (some, like me, since childhood). I've watched the effort they have put into overcoming this wretched condition. It isn't for a lack of trying, or a lack of excellent therapy - some just do not lose their fear.

We are fortunate to have one of the best therapists in the world in this country, Prof. Paul Salkovskis. He is incredibly positive about a cure. However, when I asked if anyone following his therapy to the letter would be certain to be free of obsessions, he replied, "Anyone is too general. nothing helps everyone. Dealing in generalities can be dangerous, as you point out."

Another friend I have (in NY state) is absolutely desperate. Perhaps you'd be kind enough to have some contact with her?

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Just as a point of interest Tricia, how would your family feel if you went ahead with DBS and that didn't work or caused more harm. Surely that risk has to be equally as high as in the case of them not wanting you to face more general therapy because of how it affects you. The guarantees of success aren't certain and the risks/negatives would be unknown until after the procedure.

Caramoole :)

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Guest Tricia

Hello Caramoole,

My husband and daughter realize there are risks with DBS and also appreciate there's no guarantee I'd be any better. What they don't fear (as they do with CBT and more extreme exposure) is that I will have a total breakdown and possibly kill myself.) I have only myself to blame for their reaction and deep concern, as I really did react so badly after months of exposure to my fears. I tolerated it for some time, but the fear just built and built until I became catatonic and zombie-like.

One exposure task I persisted with for over a year: I placed letters on my bed (in the envelopes they'd arrived through the post - which I fear so much. Normally I'd spend ten minutes thoroughly scrubbing my hands after touching them. Even then, I'd have to shower before going to bed). I simply could not sleep with the envelopes on the bed. I was terrified. Eventually, after a few nights, exhaustion did win over, but the fear remained and for over a year I tolerated it, becoming more ill each day with the stress and poor quality of sleep. On one occasion I intended to drive to my children's village school (eight miles away) and ended up totally lost in a different village altogether. My brain seemed to be shutting down due to overload of fear. My husband began to lose his patience, by this point, feeling the suffering was self-inflicted. My poor children suffered so much during this period.

"Today is the tomorrow I worried about yesterday, and it didn't happen!!" - I just read the quote at the bottom of your message, Caramoole. I don't know if what I am about to write is relevant to my situation at all, but I don't fear anything happening. I just feel fear - if that makes any sense?!

Edited by Tricia
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"Today is the tomorrow I worried about yesterday, and it didn't happen!!" - I just read the quote at the bottom of your message, Caramoole. I don't know if what I am about to write is relevant to my situation at all, but I don't fear anything happening. I just feel fear - if that makes any sense?!

Yes, it makes perfect sense. I have always had that myself :( The quote is meant more in a general life sense rather than OCD wise

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Guest mynameisbrian

Also, thank you, Brian. I don't have a thread, and won't start one because most of my experiences are not positive and I do not want to discourage others. CBT can be very effective and I truly don't want to list when it isn't. However, I will write to you about my past therapy.

I have a friend in America who has just completed her sixth session of CBT (inpatient). Twice she was treated by experts. I guess you feel they all failed her. Can it not just be that some of us do not respond? I cannot bear hearing that professionals, or those with OCD, have failed. Of course, it's true that not all therapists are good at their jobs and some may have indeed failed us, but that is certainly not true in every case, as even the specialists are unable to help everyone. I am of an age where my friends are mainly over 60 and some of them have battled their OCD for many decades (some, like me, since childhood). I've watched the effort they have put into overcoming this wretched condition. It isn't for a lack of trying, or a lack of excellent therapy - some just do not lose their fear.

We are fortunate to have one of the best therapists in the world in this country, Prof. Paul Salkovskis. He is incredibly positive about a cure. However, when I asked if anyone following his therapy to the letter would be certain to be free of obsessions, he replied, "Anyone is too general. nothing helps everyone. Dealing in generalities can be dangerous, as you point out."

Another friend I have (in NY state) is absolutely desperate. Perhaps you'd be kind enough to have some contact with her?

Yes, my comment about them failing you was a bit overdramatic. I've just been in a very bad mood lately dealing with my own obsessions, which are finally starting to subside (for now). And yes, I agree with what your therapist said. There are general ways to handle OCD, then there are the specifics that apply for each obsession.

If your last comment was meant towards me, then yes, just send me their contact details in a PM.

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Nasdaq, I don't know if you have been here at all, but I know you've not checked your PMs. If you do happen to read this, please could you write to me. I have a few questions I want to ask and don't wish to upset anyone further by speaking about surgery, as it's clearly not a popular subject.

Thank you.

I hope you are still doing well.

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  • 4 weeks later...

I've had inpatient treatment at Springfield and I can assure you it wasn't beneficial quite the opposite in fact and from about 20 other patients who spent time there felt it was detrimental to their ocd.

I for one would like more info on these various treatments and would welcome more posts on the forum about them too.

You seem against anything that isn't CBT or ERP as a means of getting better Ashley for some reason and I wonder why?

DBS is reversible FACT!

How do you know that some people aren't treatment resistant?

What is your experience in OCD btw?

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A very confrontational approach DRF, on many counts if you don't mind me saying :(

Whilst I clearly can't respond on behalf of Ashley, I do feel that the charity is within its rights to hold views and opinions on various matters and treatments based on its own research and experience. At this point in time the charity does not support DBS as an effective (or potentially) safe treatment. Having said that, we have had many threads discussing the pro's and cons of such treatment and have not sought to censor such discussion. That doesn't mean that we should support the treatment if we don't feel the benefits outweigh the risks.

I've had inpatient treatment at Springfield and I can assure you it wasn't beneficial quite the opposite in fact and from about 20 other patients who spent time there felt it was detrimental to their ocd.

I'm sure there are very, very many who have benefited also.

Why do you think that treatment had the opposite effect? it implies that treatment is detrimental or harmful which I find difficult to accept. Those who are referred for treatment are usually suffering quite severely, so I would not find it unusual that success rates are perhaps not as high as within the general population.

Within every area of medicine, cure can never be promised or guaranteed...I guess mental health is no different sadly. Hopefully (as with general medicine) that will continue to improve.

Caramoole

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No not at all Caramoole just expressing what I feel.

As for Springfield you had to be there to witness it

too many negatives to mention, scarred me for life that place.

Fair enough if that's the charities principles/beliefs I just think it's a shame really

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I've had inpatient treatment at Springfield and I can assure you it wasn't beneficial quite the opposite in fact and from about 20 other patients who spent time there felt it was detrimental to their ocd.

I for one would like more info on these various treatments and would welcome more posts on the forum about them too.

You seem against anything that isn't CBT or ERP as a means of getting better Ashley for some reason and I wonder why?

DBS is reversible FACT!

How do you know that some people aren't treatment resistant?

What is your experience in OCD btw?

I agree on Springfield sort of, in that I hear mixed feedback. Some find it helpful, some less so. But there are several other specialist OCD clinics, not just Springfield.

As for your CBT question. No idea if you are making some suggestion I have ulterior motives, if you are suggesting that, then I don't. Shall I tell you why I promote the use of it? Simple, two reasons. In the last 10 years I have met people who have overcome their OCD, recovered, cured, obsessions but no anxiety or compulsions, call it whatever you like, I have met them or spoken to them and the one thing they all had in common was CBT, some with meds, some without. I have also spoken to people who have tried every other therapy out there and they still end up back here, so that is reason one.

Reason two is because right now it is the best we have for treating OCD and is what the NHS and most of the world recommend. If a new treatment is shown to be safe and effective that is better than CBT then I will be totally on board. But lets be clear about this, DBS is not that treatment!

So that is why I advocate CBT. If and when a better therapy or treatment comes along I will be on board with it, until then CBT remains what this charity, the NHS and most of the world recommend for the treatment of OCD.

What we do need to do though is improve the quality of CBT and the therapists, and I did my bit by arranging a conference last week to do that, and I will keep working on improving the quality of it.

Are people treatment resistant? Some could have said I was 10 years ago, but I am not now. So the question is not that are people treatment resistant, the question needs to be 'what can we do to make them respond 'better' to treatment. Again, DBS is not the answer to that.

Now onto my experience of OCD. I am a sufferer whose life was dominated by OCD for 15 odd years, and I am now reclaiming my life back and along the way I intend to drag other people along with me to reclaim their life back.

People can choose to believe what I, the charity and many other say, or they can choose to ignore. I hope in time the work of our charity will help make others with less belief now, have more belief in the future.

I hope that answers your questions.

Edit Note: Missed the comment about it being reversible. Just because you wrote the word FACT does not make it a fact. Unlike many people, I don't just swallow press releases where DBS is claimed to be reversible, I ask around. DBS is not reversible, you can remove the device and if you are lucky there will be no complications. But, if the procedure goes wrong, the side effects like seizures, epilepsy, death, mood changes etc, etc ca not be reversed. Neither can any damage caused by drilling two holes into a persons head, tissue will be damaged.

Edited by Ashley
Edited to respond to point I missed
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I'm sure there are very, very many who have benefited also.

Why do you think that treatment had the opposite effect? it implies that treatment is detrimental or harmful which I find difficult to accept. Those who are referred for treatment are usually suffering quite severely, so I would not find it unusual that success rates are perhaps not as high as within the general population.

Exactly, our own Fobic as often stated on here that Springfield whilst not taking her to full recovery, helped her turn her life around to be less dominated by OCD. Equally, there was another lady on here whose husband had to help her use the toilet which took so long, 7 or 8 hours at a time she only went to the toilet once a day, and Springfield helped her get her tolilet time down to 10 minutes.

So whilst I accept that Springfield does get mixed reviews, it does get good reviews too.

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DRF, I saw this thread had been written on and so hoped we had heard from the German fellow again. Apologies, that is rather tactless of me! I am very sorry to hear that your experience at the Springfield was not a positive one. There's a member here (Fobic Fairy, I believe) who speaks so highly of it and says it's given her her life back.

I don't know anyone else who has been to the Springfield (other than two men who were in last year's documentary on OCD) but I have several friends who were inpatients at the Bethlem's OCD unit. A few regretted going there and none is any better. However, again, it must have successes otherwise it wouldn't still be in existence.

I would like to ask you some questions as I was considering the Springfield at one point. I had better do so via PM (if that's OK with you) otherwise It may upset other forum users.

I nearly stopped posting here altogether as I am deeply upset by the comment about the shame of this thread. I guess it's why we've lost our German friend. It's such a shame as there should be no shame in exploring every possible treatment - especially when such surgery looks very promising.

Edited by Tricia
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I nearly stopped posting here altogether as I am deeply upset by the comment about the shame of this thread. I guess it's why we've lost our German friend. It's such a shame as there should be no shame in exploring every possible treatment - especially when such surgery looks very promising.

Sorry Tricia, I am not sure where you get this 'promising' from, but it is not. Like I posted before, DBS has been around years and years now for OCD, and they still do not have a clue. It offers huge risks with little reward from all the data I have seen, so no Tricia, we are still a long, long way from it being 'promosing'.

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I know that's how you view it, Ashley, and I realize you have more feedback than I. But, certainly some I know of are doing very well post op. and it would have been good to hear more from the German chap who has said he's still doing well ten years on.

By the way, I know many, over the years, have spoken about the expense of surgery (as being just one of the reasons for opposing it) and please do correct me if I am wrong, but I have a feeling Fobic Fairy said her six months at the Springfield cost £250,000. I am not saying a penny was wasted as clearly her life is worth more than that, it's just that compared with surgery (around £30,000?) it does appear to be even more expensive.

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Yes I was wondering where the German guy has gone, I hope he's ok. Think some of the responses were a bit harsh tbh. Thought it was refreshing to hear his experience with other treatments and BBBs experiences too.

Sure Tricia PM me and I will enlighten you regarding my Springfield admission.

Ashley what are the HUGE risks you talk about?

Btw I think you do a great job for the charity and obviously you've suffered this terrible illness (which I think personally is the worst illness EVER!) so don't think that I'm being condescending to you at all, just being a little inquisitive and just believe people should be able to share their views even if you don't fully support them.

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believe people should be able to share their views even if you don't fully support them.

Maybe, but I have a duty of care to the desperate and vulnerable people with OCD that use our services to highlight the realities of DBS. People are absolutely entitled to make their opinion, but I will always try and ensure they do so informed.

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Ashley, I know we've spoken about this before (your edited note below) but it isn't just press that speaks of DBS being reversible, neurosurgeons do too! Actually, the wires are not removed (if the procedure fails to work, so if we are being 100 per cent accurate it is not reversible). However, unless something untoward occurs (which can happen even with taking medication) a person post DBS, with pacemaker removed, but wires in brain still intact, will be back to square one. Unlike other procedures aimed to destroy parts of the brain, which are totally irreversible.

I'm not considering DBS on a whim (I've done a great deal of research) and two doctors and my whole family approve it. It is certainly less barbaric (and more reversible) than the holes a psychiatrist advised me to have drilled in my head 35 years ago!

P.S. Just want to add that taking clomipramine can be irreversible. It has affected my heart. Had I known this forty years ago I never would have taken it. A drug (never used for OCD) has killed my mother. It kills thousands but is still used. DBS is far safer than many pharmaceutical drugs!

Ashley's Edit Note: Missed the comment about it being reversible. Just because you wrote the word FACT does not make it a fact. Unlike many people, I don't just swallow press releases where DBS is claimed to be reversible, I ask around. DBS is not reversible, you can remove the device and if you are lucky there will be no complications. But, if the procedure goes wrong, the side effects like seizures, epilepsy, death, mood changes etc, etc ca not be reversed. Neither can any damage caused by drilling two holes into a persons head, tissue will be damaged.

Edited by Tricia
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Their are VERY serious risks with CBT too as people can become very anxious and suicidal just like meds can be too.

Although I do believe meds should be the first line of treatment I also believe that when you feel you've exhausted all avenues then having other options out there to consider is surely a positive. (Especially if you have no quality of life anyway)

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Yes desperate and vulnerable people that it could help!?

What are the realities you perceive regarding DBS Ashley?

I was actually offered DBS by a well known Professor of OCD but didn't feel quite ready to try it as wanted to try more therapy first.

Edited by DRFCno1
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if its reversable then those that implement it , would be happy to have it implemented onto them ?

Legend, you've asked this before and I am sure if a neurosurgeon were suffering as some here with OCD are, then he or she would be very willing. However, why should they take even the small risk of fatal infection etc., unless they are in torment. It would be idiocy!

P.S. Legend, I've just seen two other messages. How many neurosurgeons in the world have very severe OCD that has not responded to other treatment? We need to ask around!

By the way, did you find out anything from Rob Willson?

Edited by Tricia
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