OCD Action

Cuthbert ffoliott
Moderator

Thought I'd bring this up, as a partial reply to Glad who asked for a new thread. Someone (I think it's Ocdlonely) said that neither meds, nor CBT were particularly helpful in her/his case.

New techniques are being tested nowadays, I do not know whether they have already been extensively covered here.

But first this. There are neurosurgical options which have proved successful; but they have their own risks. These are called resections; small fibres in the brain, at the relevant spots, are 'lesioned' or cut. Which means: they can't be made undone, they are irreversible. I myself would find it hard to accept such a method, given that I partially respond to medication alone. But if my life were permanently ruined by OCD, I'd take the chance, I am sure (condition: neither meds nor CBT nor both would work).

The first new option is Deep Brain Stimulation (DBS), done by a.o. prof. Damiaan Denys in Amsterdam. A small 'pacemaker' is inserted very carefully in the brain, and it fine-tunes neural transmission by giving off tiny currents that stabilize the signals in the relevant brain parts. As far as I know it works pretty well, but I'll look up how many patients have been treated and what the risks are.

The above two methods are called 'invasive', which means: the surgeon has to go 'inside'. So: we have one invasive option with irreversible effects, and one with none (since the pacemaker does not damage your brain cells).

The last option is: Transcranial Magnetic Stimulation (TMS). A magnetic field is applied to the brain, from the outside. Noone has to go inside, and nothing irreversible happens. This method has been proven successful in depression; and it is being tested in OCD.

(to be continued)

Thu Jan 14 2010 18:08:56 #
Unregistered

Cuthbert, I don’t have much time now, but I know of people who have had various forms of psychosurgery. I was offered a ‘sophisticated lobotomy’ many years ago, but fortunately for me my family and GP were horrified by the prospect.

There have been several documentaries here about deep brain stimulation, for Parkinson’s, OCD, Tourette’s and depression. Electrodes are inserted deep within the brain while the patient is awake. As far as I am aware the pacemaker is attached later and is inserted below the shoulder. I am considering this surgery and it’s one treatment my family approves of. There is a 4% risk of infection, which can obviously prove fatal. (At least that’s the statistic given by a Florida surgeon, maybe the risk is higher in Britain).

People I know who have received DBS have found changes in their personalities. Although some say the procedure is reversible, others point out that the electrodes kill many brain cells, so we can never be quite as we were prior to surgery. If a patient is unhappy with the procedure the pacemaker can be removed. However, the electrodes are left inactive, but in place, because more invasive surgery is believed to be an unnecessary risk.

Tricia.

Fri Jan 15 2010 13:08:21 #
Unregistered

P.S. Just realized something I said could be misinterpreted. When I spoke of the electrodes destroying brain cells, I only meant while they are being inserted in the brain!

Fri Jan 15 2010 13:34:52 #
Cuthbert ffoliott
Moderator

Hi Tricia -

thank you for adding examples from real life to the thread. There are risks to invasive methods, that is certain. Certainly an irreversible lesion seems frightful; suppose the surgeon makes a 'tiny mistake'?

Personality changes, that's a moot point indeed. Just prior to taking antidepressants I was very afraid that these would turn me into a robot without free will. I really had to consider this: hey, yes, but what's left of your free will with severe checking and hoarding compulsions? What's the use of free will if you can't even leave your own house?

This convinced me that I had to take the chance with the pills. I don't regret that for a moment.

We'll hopefully continue the discussion later...

Cheers, Cuthbert.

Fri Jan 15 2010 14:22:54 #
Unregistered

Dear Cuthbert, I did become robotic when prescribed a high dose of Clomipramine, but that side effect of medication is obviously reversible, so for me that was never a consideration. When a surgical procedure is irreversible, personality changes are a worry.

As far as I am aware DBS is reversible, if the pacemaker is removed and the electrodes remain but are inactive, the patient is exactly as he or she was prior to surgery (apart from the wires through the brain!). Although a neurologist told me the surgery is reversible, Professor Salkovskis pointed out that millions of brain cells are squashed as the electrodes are inserted. He, therefore, does not consider it to be reversible.

People I have spoken to who have received this treatment described a lack of interest in hobbies they had previously enjoyed. One couple (in a documentary) spoke of their feelings on the procedure and its effects. The patient was delighted with the result, but his wife disappointed,, she wanted the man she married back. Couples can also react like this, however, when the OCD sufferer improves with other treatment, such as CBT.

The evidence of positive changes is easily observed. In one case a man who was doing very well following DBS, discovered his pacemaker malfunctioned after passing through airport security; his symptoms returned instantly.

At a conference in America, a young lady had been asked to attend by a psychiatrist, who was giving a talk on DBS. The young woman appeared rather apathetic and the psychiatrist picked up on this, as he had been informed that the patient’s depression had completely lifted and OCD symptoms greatly improved. He commented that the lady didn’t seem to be responding that well. The lady’s mother replied ‘Doctor, she’s down on a battery, but you should see her when she’s on full power!’ Apparently the lady was waiting to return to hospital to have a battery replaced

In a documentary on DBS for Tourette’s sufferers, we were shown a man whose condition was very severe, due to his violent tics. Before surgery he was hitting himself frequently. His tics ceased following surgery, but when the power was turned off he immediately began to tic again. The downside was also shown, when a young boy contracted an infection post surgery and almost died.

It’s certainly not to be undertaken lightly. Professor Salkovskis told me it is a ‘barbarous procedure’. I have said that living with a tortured mind is far worse, but I appreciate that everything else should be tried before surgery of any kind is considered.

I have to admit, if I knew that the rest of my life would be as it has been for the last fifty years, and there was no hope of improvement, I would not hesitate with the surgery. When I told my family that there was a 4% chance of infection, which in a few cases could prove fatal, my mother remarked that even if the odds were reversed it would still be worth doing.

Best wishes,
Tricia.

Sat Jan 16 2010 16:06:45 #
Unregistered

P.S. I just found this comment from Professor Salkovskis regarding deep brain stimulation:

"This is a technique which received lots of attention recently and is very dubious. Like other forms of psychosurgery it is probably not effective. I don't believe anyone should receive this type of irreversible and potentially harmful treatment."

I am surprised he said it's probably not effective, when already many people have benefited from it. Tricia

Sat Jan 16 2010 16:53:32 #
Unregistered

Hi Tricia

I would not have had it done if it were to change my personality in a negative way. My mum had ECT when I was a teenager and lost five years at least of her memory - she came out cured but a completely different mum. Yes the CBT has changed me but not my personality. I am just as loving and kind but a lot more determined and am also fun to be with at long last. My neighbour remarked on this yesterday - and was very impressed.
Anne

Sat Jan 16 2010 16:56:58 #
Unregistered

Dear Anne, A friend of mine had so many sessions of ECT that he lost count, partly due to his memory loss. This was for his OCD and it didn't help at all. I presume your mum's was for something else. I would never consent to receiving that, which I would term ‘barbarous’!

The changes were regarded as negative by the partners, in some cases, but not the patients. I think if a person who has experienced great fear for years is suddenly free of it, a few changes in likes and dislikes are a minor side effect.

Of course, CBT is safer and far better when it works.

Sat Jan 16 2010 17:04:04 #
Unregistered

P.S. In some ways CBT can change our personalities, and I know of couples who have parted because of it. I'm certainly not saying that's a reason to avoid it, though!

Sat Jan 16 2010 17:10:34 #
Unregistered

Yes she had a psychotic nervous breakdown. She only realized that she had lost her memory when she regained it. In fact she told me a couple of years before she died that some memories were still coming back 40 years later.

Well if the patient finds that this new surgery is beneficial for them I guess that it is the right choice. A teenager was thinking of having this done when I was at the Bethlem as his life was impossible as it was. He got stuck constantly and his life was sheer hell.

Are you thinking about it then?

Sat Jan 16 2010 17:14:34 #
Unregistered

ps In what way did their personality change?

Sat Jan 16 2010 17:17:09 #
Unregistered

Yes, I have been for some time. It's got to be preferable to the 'sophisticated' lobotomy my psychiatrist tried to persuade me to have back in 1990! He told me I'd be unable to leave my bed within six months without it. I said I felt I'd be unable to leave my bed with it, but he had no sense of humour!

Sat Jan 16 2010 17:20:40 #
Unregistered

Sorry, Anne, I only just saw your last message. Varying ways, mostly minor. I'll come back to this when I can, running late!

Sat Jan 16 2010 17:22:25 #
Unregistered

Whatever you decide, I am right behind you Tricia.

Perhaps psychiatrists think we have no sense of humour. Mine could not believe that I was basically an optimist with a wicked sense of humour. Maybe they forget that the OCD is an illness and not us as a person.

Love

Anne

Sat Jan 16 2010 17:25:37 #
Cuthbert ffoliott
Moderator

Thanks for all the highly informative replies. Amazing what there is to be learned from your contributions... and also what grave differences there may exist between textbooks, articles, and people's experiences.

I'd esp. like to single out Anne's remark: 'Maybe they forget that the OCD is an illness and not us as a person'. Suppose a psychiatrist says: I have an OCD'er here; then he maks a bad mistake. He wouldn't say: I have a flu here. That makes all the difference, and Anne sees it.

There is a long, long way to go still. Perhaps we're only somewhere halfway between the Medieval times, when we were thought to be possessed by the Devil, and some point in the future, when OCD will be recognized for what it is: a neurological disorder with grave implications for our lives as humans.

Sun Jan 17 2010 13:14:00 #
Unregistered

Dear Cuthbert, I have to say that I don’t mind certain labels that others find upsetting. When I worked in a hospital I often heard doctors referring to patients by their condition. Maybe that’s not right, but when these doctors were compassionate and good at their work, then I didn’t think it mattered too much. Many of my friends refer to themselves and each other as OCDers. Many of us refer to those without our condition as ‘normal’. This particular term was discussed here recently, and until then I had been unaware that I had been causing offence to some people. I discussed this with a close friend who often remarks she wishes she were ‘normal‘. We know what we mean and to us it’s not in the least offensive. I realize others view it very differently and I am now reluctant to use the word.

Anne, those people I know of who have experienced differences following psychosurgery have spoken of changes like a complete loss of interest in gardening, when prior to surgery gardening had been their main hobby. One couple featured in a documentary discussed the changes in the husband. The wife said her husband no longer had the same passion for life. She criticized him slightly, looked to see if she was receiving a reaction and then added that he would not have sat calmly with a smile on his face before his surgery, he would have delivered a quick and terse reply. She preferred her old husband. He preferred his new self and admitted without surgery he would have committed suicide.

I have a new dilemma in that without a dramatic change, I am committing my daughter to a life as my carer. Not that I require one, but she is not prepared to move away and live her own life while I am this ill. This added pressure means I cannot remain as I am. I have actually contemplated a one way visit to a certain Swiss clinic. I do wonder if it would be a blessed release for all concerned.

Love, Tricia.

P.S. Very sadly we are not totally beyond the Medieval way of thinking, regarding conditions like ours being linked to the Devil. One only has to go back a few months to discussions on this forum to see that. I was also told quite recently by a highly educated, professional man, that evil was the cause of my illness. I became very angry, because although I do not believe this, I know people who would be very badly damaged by such preaching.

I honestly think we are very close to it becoming common knowledge that our condition is a neurological one, so many believe this to be the case already.

Sun Jan 17 2010 13:38:13 #
Cuthbert ffoliott
Moderator

Hi Tricia -

please don't worry. I myself don't care if anyone here uses the word OCD'er. And since I never worked in a clinic or hospital, I am not conversant with the way doctors usually speak about their cases.

About 'The Devil'... yes, I met quite a few religious people who do not believe in psychiatry at all, or the science of the brain. They say: you have to convert to this or that type of belief, and The Lord, or Jesus will heal you instantaneously (see the guy called 'Legion' in the New Testament).

I deeply respect religious beliefs (non-fundamentalist). But I can't see how these very backwards ways of thinking, or believing, can further our cause one iota.

Tks for all the attentive writings.

Sun Jan 17 2010 14:15:34 #
Truddles
Member

Just wanted to say that I think that it's ok for us with OCD to call ourselves OCDers but I find the professionals use the term very disparagingly. We use it to refer to the fact that we have OCD as a condition, where as the professionals use it to label us as a person. I am not OCD, I just happen to have OCD. They wouldn't say that someone who'd had a heart attack was a 'heart attacker' would they?
Sorry I'm not too coherent today.
Trudy

Sun Jan 17 2010 14:38:28 #
Unregistered

Dear Cuthbert

Your postings have been so very helpful. I too have had the 'posessed by the devil and cured by the Lord' one quoted at me by fundmanentalists. It is extrememly hurtful when I have been a believer all my life. It has totally put me off organized religion.

When I was really ill I saw myself as an OCDer largely because I had been told by my doctor that I had a 'personality disorder.' My last two therapists saw OCD as an illness which latches on to your brain but can be prized off by different means. This has helped me to see that I am not OCD it is an illness.
Had I not seen it this way I would not have got through 12 years of Uni. In fact I told none of the lecturers or supervisors at Uni that I had the illness and put it down as a unspecified condition. Had I not done this I would not have felt an equal and would have been afraid that they would make concessions.

Please keep on posting you offer really good advice.

Anne x

Sun Jan 17 2010 14:47:18 #
Unregistered

Dear Tricia

I now understand why you are contemplating surgery. You are so brave posting your feelings on this forum.

I am so sorry that you were so low you were thinking about Switzerland. I have had these feelings of despair many times in the past and know only too well how it feels.

I am worried that it may take away your previous hobbies/interests. Having said this it may well not. When my husband had his brain haemmorage (the cental lobe which affects emotions) and subsequent operation, I was told it might change his personality. Angry people frequently become delightfully loving and peaceful. In fact, as I told the specialist two months after, he is exactly the same but slightly more stroppy. And he is even more infatuated with his writing hobby. So I guess all situations are different.

If surgery will make life better for you and allow you to go out, to meet friends (including me) and try new pursuits it will be worth it. I guess I am really lucky that CBT worked for me. I never wanted OCD and hated 'sad glad' and am so pleased to be mostly me (Dr Anne) once again.

Love
Anne x

Sun Jan 17 2010 14:58:15 #
Unregistered

Dear Anne, If I suffered periods of depression/despair, but had good times in between, it would be different. I am so very tired of living in fear, and to be honest, Anne, it's all I've ever known. I think if surgery didn't work I would opt for Switzerland, that's if they are still taking people like me, I believe they have begun to tighten up on who they will help.

I have always felt I am a burden to my family. I was so ill as a child and my mother did not want me around. I know I caused my father such distress. These days it’s my husband and daughter I am affecting. I am certainly not prepared to ruin my daughter’s life as well. It was hard enough for her when she was a child, she certainly shouldn’t be tied to a neurotic mother for life.

As to the surgery taking away my hobbies. I really am so restricted now, because of the OCD, that I have none. I tried to venture out and experience events which I believed I would enjoy, but the pain and fear far outweighed any brief pleasure. A trip to Amsterdam to hear my favourite orchestra was disastrous. I was a very keen gardener, when my OCD was purely the obsessional kind, without compulsions. Now I am terrified of the soil and struggle to walk down my garden. I haven’t done so for four years. I felt my clarinet was contaminated and avoided if for years. When I began attending concerts, I forced myself to play my clarinet daily. After a year, I was still trembling with anxiety and eventually I admitted defeat. One way of playing vibrato without any conscious effort!

So, for me, if I lost all interest in concert-going and my garden, it wouldn’t matter. In fact, it would be a blessing, because now I mourn the loss of such pleasures and deeply wish I could participate in my hobbies. Those who have changed through surgery don’t appear to hanker for what they once enjoyed, they are merely perplexed that something they knew they once loved, no longer has the slightest appeal. I did joke with a doctor (who was very pro surgery) that I might lose my love of music. I said I could always switch the pacemaker off to listen to it and turn it back on afterwards. He laughed and nodded. I was joking, but actually I do wonder if it would be possible to control our obsessions in that way, and be able to revert to how we were with the flick of a switch. It doesn’t seem so far-fetched!

Anne, as you described with your husband, there’s no guarantee how changes in the brain will affect us. I suppose it comes down to what quality of life a person has, whether they would choose to undergo potentially character changing (and life-threatening) surgery. I am so reluctant to describe the depth of my problem, because it sounds as if I am attention-seeking or fishing for sympathy, and I am truly doing neither. I am merely being honest and explaining why I would be prepared to do almost anything to change.

As to ‘character changing’ this makes me contemplate something a fellow OCD sufferer said. This probably goes against so much of what others here would agree with, and some might find it offensive. But, my friend pointed out that she found it hard to know what was OCD and what was personality, as the two merged somewhat. Yes, she knows her fears and cleaning rituals are OCD, but so many things could be classed as personality. This person has a friend who doesn’t have OCD, but she has an obsessional personality. Both woman have immaculately clean homes and there seems to be a very fine line between the two. The differences are more apparent when the OCD is extreme.

Trudy, It’s possibly wrong of me, but I never saw anything offensive with the way the doctors spoke about patients in hospital. No, they wouldn’t say they had a ‘heart attack’ but they often used to say they had a ‘myocardial infarction’ which of course is the same thing, and I dare say that way of referring to patients still goes on. Some who spoke that way were very compassionate towards their patients, and as long as they were it didn’t matter to me.

In Frederick Toates’ book, he continually refers to the ‘obsessional’. This never bothered me, and as an ‘obsessional’ himself, he obviously doesn’t mind the label. I did ask him what the difference was between an obsessional personality and an obsessional personality disorder (or OCPD). His reply was that the second invariably lives alone! Again, this does reinforce my friend’s opinion that our OCD and our personality can be intertwined.

Cuthbert, I admire you, but I am afraid I don’t deeply respect religious beliefs when they spout nonsense about psychiatric illnesses. I have witnessed the damage some have done. Two friends and I have been told to throw away our medication, read the Bible daily and repent. We were also told to avoid psychiatrists. I pointed out to one priest that he accepted that insulin should be administered to diabetics and yet would not accept a chemical to correct an imbalance in the brain. Why these otherwise intelligent people can still believe that mental illness is due to demonic forces, I don’t know. I am all for respecting others’ views when they don’t cause damage, but when they do I really struggle.

Thirty years ago, I was very vulnerable, and quite gullible. I was seeking relief from the mental pain, and when doctors failed to provide it I searched in many other places. An American evangelist promised a cure. First, he had to discover what sin had caused my affliction. He delved into my past, asking the usual questions about abuse of drugs or alcohol and sex before marriage, but came up with nothing. He then asked about my mother and as soon as he heard she had once read Tarot cards he had his answer. This man nearly pushed me over the edge, claiming Satan was at work within me, stating that I must avoid all doctors and trust in Jesus. The Old Testament read like a horror story to me at that time and I developed new obsessions on top of the old. Fortunately, I was rescued by my doctor and escaped the brainwashing of this man. Others are not as lucky.

Love, Tricia.

Tue Jan 19 2010 14:26:00 #
Cuthbert ffoliott
Moderator

Hi Tricia -

thank you for that monumental post of yours. In fact, I can completely sympathize with you re: fundamentalist religion and mental pain. Actually, we in Holland have a rightwing Christian government right now, and it is almost palpable that they don't admire psychiatrists and psychologists. One can see this in the cuts in health care for the mentally ill. These people believe secretly that psychiatrists are no good, that mentally ill folks should repent and pray to God.

As for me, this is a completely obsolete, Medieval point of view, and highly dangerous at that.

Trouble is, these believers can't discern what the Bible says about healing and superstitions. There is nothing in the Bible that prohibits believers from seeking real spiritual help and care in whatever form (I mean: mental). The Bible is extremely wary of fakers and conmen in mental matters, that much is true. Well, I agree with that point of view: I wouldn't want any voodoo artist to help me with my OCD. Or Uri Geller. Or a clairvoyant, charging much cash.

But fundamentalists often aren't that very bright (allow me this description). They can't make a difference between a psychiatrist and someone reading tarot cards (your example), or looking into a glass ball.

I know a girl who discovere that she was lesbian. She came from a very fundamentalist Christian family. Everyone turned against her, when she was open about it. She was forced to take 'lessons' from mr. Reverend. He inquired whether she had ever done unholy activities. She admitted to having done a game with others: glasses were turned and the kids tried to 'read the future'. A completely innocent children's fun game.

Not for these people. She was driven out of the parental house, the family, and eventually ended up as a heavy drug addict.

I hope I could make it a bit more clear what my point of view is in religious matters and mental illness. Religion can, as almost all other human activities, be used for the good and the (very) bad.

Cheers, Cuthbert.

Tue Jan 19 2010 14:42:14 #
Charles Greenwood
Blocked

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Mon Jul 19 2010 12:27:45 #