Yesterday we checked in with the psych again. He thought my son was more present than at the previous session. We are to take the Lyrica slowly to 300mg and increase the Prozac to 60mg as tolerated. He wanted to go to 50mg of Prozac this morning after increasing the dose of Lyrica last night. But he hadn't slept well. Was up from about 2am. It wasnt such a good idea in hindsight. The akathisia hit hard only half an hour after taking the stuff. He couldnt stop the shakes and has returned to lying down to cope.
My son was also given a timetable sheet as the doc mentioned that the illness has taken away his functional routine and he has no confidence in his ability to resume life. Baby steps is his approach. He is to fill in the timetable with one half hour activity a day. This is to be an anchor activity. Something he practices as a discipline. I don't know if he will even fill in a sheet. His usual effort is to totally dismiss it all. I was told not to police him. I don't know how many days i can go letting this slide. It will be a test of my endurance. I feel like a mum still doing his homework.
We also talked yesterday about thinking about three core tasks to do in a day, write them down and then do at least one. The harder the task you set yourself, the more rewarding it will be to your confidence to complete it.
The TMS is still going ahead. This will be targeted and must rely on the functional MRIs obtained from the research project completed at the end of May. I took my son's art along also to show how the fine detail was a bit savant like. This might indicate that the visual processing in the brain has been too finely tuned and could be a target for the therapy.
So From my own interpretation of BDD so far, I see a brain malfunction. The brain creates this FUD, fear uncertainty and doubt. The brain is in worry mode and doesn't really know what to fear. The uncertainty is felt like a constant need to scratch. It must be relieved by doing something. A check or avoid usually works but then the doubt returns and the process continues to repeat.
What is feared relies on the individual person's experience of life. If someone was bullied then they are more likely to become paranoid that people are looking at them and are making judgements that should be feared. If you live in a society that prides itself on conforming then being mixed race might be enough of an issue to cause fear of negative judgement. If a person has more of an aesthetic bent then anything that is visually variant with perfection might cause alarm and provide the context for the fear.
So in my son's case, his brain created FUD. He gave it context and settled on hair because he valued hair and also valued visual perfection. This might have been fine if his life had remained in balance. But it didn't. The worry took over, the obsession stole his functional life. The fear breed.
The odd thing about this illness is that although my son knows his only option now is to medicate his brain. He still misattributes his illness to his hairdo. He does believe that if his hair was fine his brain would no longer be in fear mode. But that is really not possible if FUD comes first and all his own brain is doing is providing context to explain the FUD. It is the FUD that really explains why you feel that pervasive sense of being ugly. You go to the mirror to check or you touch to check or you ask to check. But you never can be certain. The answer is never stored. So you don't learn from anything you do. You repeat tomorrow all the same stories you hear in your head today.
You have an overvalued idea that you need a certain look to be happy or to even date. You tell yourself it all depends on that one thing that is not perfect. The "If only" thinking impairs your judgement so you don't step away from this shadow. You have defined too narrow a focus to value yourself. You fail to see all your own potential.
This is why often the forum becomes a sharing of poor...

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He was shaking all over and calling out, ‘suicide, suicide, suicide,’ as he reached the side of my bed early this morning. He wanted a morning dose of Lyrica to be followed, once that kicked in, with his dose of Prozac. He commented that the faint noise of a garbage truck bothered him a lot. I could barely hear it. I took from this that his anxiety is at psychotic levels.
Although he wanted to raise the dose of Prozac again, I advised against it. The headache, anxiety level and return to bed yesterday are all signs of biological unbalance. The neurotransmitters are being affected and he needs to stabilize.
His brain is in FUD mode. Fear, uncertainty and doubt completely control his working focus. He is so fearful it is getting hard for me to watch. The deer in the headlights gaze as he talks. The hand constantly moving to grab body hair. His hand moving frantically to the back of his shirt and descends down his back to check body hair regrowth. I desperately try to control my urge to smack his hand. I just tell him how I am feeling about what he is doing instead.
He returns to bed and the Prozac dose seems to have calmed him down. I don’t hear a call until after 9. I know he can’t control the fear but there is little evidence he is doing much to challenge it either. We are still at the stage where he talks up the hair and I talk up the level of fear as the issue I am welcome to debate.
So what is the appeal of living with such a level of fear in your life. Hope for better and yet fear of the day being just the same as yesterday is a level of acceptance I don’t want for myself. It’s like a resignation. I question this appeal of fear. Where is the emotion of regret and guilt and the desire for challenge? The regret surrounding the loss of another day in your life to this fear. The guilt that I am living this hell with him. The challenge that he could resist his compulsions and check in with some logic. It is not that he is missing out on hearing it. I need to gag myself or leave. I am prone to write postits to give him some inspiration. I know it is for myself that I do it. Am I just doing so much that he has no purpose to fulfil. Nothing to be responsible or accountable for…not even his own illness. I question his motivation to get better. The emotion of regret, guilt and the feeling of being accountable for challenging himself is part of the motivation equation that isn’t present.
He calls for his Propecia tablet. But he doesn’t think he has to have a shower, dress himself, make a bed, open the curtains to see the light of day. He thinks his important activity is to take a tablet and fall back in bed in a heap.
His response to me reading this to him is to tell me he doesn’t give a $#%^. I am riled already by the lack of forward momentum and resignation. It wasn’t going to help my cause but having to recognize an outreach worker is needed to get him to cooperate to even wash hair is hurting me. And that is the problem. There is a strong passive aggressive personality in there. Do you call it learnt helplessness?
He tells me it isn’t appropriate for my blog. I tell him to follow his own advice and start to respond to his own needs and stop calling out. The day isn’t going well. Is it? He calls out for me to turn off the passage light. It is 10.12 am and he is in paralysis mode.
I am going to a hairdresser soon. I am due for a dying, in a different form than my daily experience. The cover up, mask like smile will be worn throughout. How can anyone know what this is like to live through? It is just so painful. This is my son and I had hoped for so much more for him. It feels so unfair. I can only hope things will get better.
I have thought about deleting all this but then again, I am not impervious to this pain. I am hurting and grieving for a happy life but the control to grab it is out of my reach. The carer’s role and family support are a vital ingredient in any recovery. I still need to let the tears flow. I have ...

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You do wonder what life lesson is in the learning when you suffer from such a disorder? Such a long suffering seems to be completely at odds with the type of people who have BDD. They are generally kind hearted, sensitively wired and generally better looking than most. Feeling less than for not being perfect when no one is perfect is so tragic and unfathomable. But I am trying to apply logic to something that is not.
How you feel about yourself is very real when the thoughts and feelings are coming from your own brain. The thoughts are so distressing. It is easy as a carer to try and apply logic but there is no point to the attempt. It is like trying to argue with your own imagination. There is no intersection between what is real and logical and what is imagination. The content of the thought attacks are just a transient manifestation of the disorder. Tomorrow another thought may take its place. Even if it doesn't, the whole dialogue from yesterday will all have been forgotten. My son will often tell me he has no memory for what was decided yesterday. When in your BDD thinking there seems to be no way of storing and diffusing thoughts to memory. The brain is working at too primitive a level.
My son has had suicidal thoughts this morning. He is not so distressed though so he complains that he just hates his hair. I try not to buy in. Let him self talk. This maybe a grab for my attention. The aloneness of BDD is crippling for someone who likes being with people. The laptop and an NBA game again to the rescue. I busy myself with the morning chores.
He got his blood test done yesterday. He believes in having high testosterone. The doc has ordered the tests to show him how to navigate and find what is real and actually question what your own mind makes up. The problem is I expect that no matter what the result is he will still not be able to diffuse the thought. It is hardwired and not logical so cant be reached by reason. It is just an example of a brain malfunction.
We are going to be getting an outreach worker. He badly needs a routine of doing stuff that matters. Getting traction to move out of inertia and into life is a serious issue. I don't know how to tackle it.
Hope we all have a happier day and move towards wellness. Marg

I has been two months since starting the blog. I will list the important changes as I see it.
1. We are now at a world renowned psych who is part of a research team. He is of the opinion that BDD is primarily biological. Neurotransmitter imbalance or structural abnormalities is creating over and underactivity in the brain so thoughts are too intrusive and then cannot be diffused. This results in circuitry loops that seem hard wired and not at all plastic. The drug regime is Prozac 50mg ( We started with 10mg on 26th March ) and Lyrica as needed for akathysia symptoms of apathy and agitation. The bed syndrome.
The Lyrica is rarely prescribed by your usual psychs as it is not PBS funded. It costs a couple of dollars a day. Less than a coffee so still affordable at our dose of 150mg a day. Lyrica seems to be for those who found alcohol was a benefit. But it doesnt seem to trigger compulsive behaviours in combination. There has been no increase in appetite. Yesterday he actually felt a bit nauseous. My son stopped alcohol since 16th January. He has been a binge drinker to handle anxiety so the Lyrica was an obvious adjunct for him.

2. His intrusive thoughts are still there but he is not calling out and in such distress with them. He has no disorganised speech in recent days. We have had times when, Sink holes or Sonic sounds going backwards has been yelled from his den of doom. This is not happening now. I did fear we were heading for schizophrenia. But my son always told me it was just happening because he was so terrified and just couldnt think. It was as though the anxiety was coming in like an ECT shock.

3. All his compulsive urges are still there even if he isn't doing them as much. He has a shower only because he wants a Propecia tablet and I want him to do the exposure. Despite my best efforts he still touches and never thinks to put on any barrier to stop himself. He wears his hat to get to the car in the driveway in a quiet suburban street. He is depressed and suicidal but still not exercising. He lives in his underwear and watches NBA from a laptop on the bed. Surgery is still an option he would consider.

4. On a positive note, he has stopped asking me about his stories in the last couple of days. He actually said his amygdala was firing once. I hope this is the start of creating some distance from the content of the thought. A bit too hopeful maybe.

The aim is for my son to recognize he has a brain disorder and be able to say he has these bizarre thoughts because of his brain. This perspective should allow him to disconnect from any emotion the content of the thought could generate. This is not likely to be easy when the thoughts have been hardwired into the panic alarm part of his primitive brain. I am not sure really that the alarm system isn't firing first and then the contextual thoughts follow. Still we do know that if you stop compulsions the thoughts generally stop with OCD so hopefully we can do his with BDD too.

We are now at least on a positive path and have some direction to follow. Hope we all get through this. Marg

We have upped the dose of Prozac to 50mg. This had the effect of reducing his intrusive thought attack almost immediately this morning. He is still left terrified to do anything. He tells me the touching was unbearable this morning. This is not going to work as an excuse not to shower. This is an exposure I expect from him. He hates looking at his body hair but he is going to do it. He has relied on excuses for too long. His personal motivation might not be there yet so my enforcement will be. I just have to expect something from him for my own sanity.

As I mentioned the calling out about his stories of hair loss stopped very soon after taking the Prozac this morning. He tells me the stories are still there but they feel like they are not so intense. He was able to watch a game of basketball and hasn’t been distressed. The game of basketball finished and now he tells me his DHT is out of control. Bed rescue. The story is so useless and self-defeating. But it is part of his BDD loop in his brain. He is powerless at the moment to turn it off. As soon as the distraction is over, the BDD thoughts enter. He is not mindful of what he is thinking. He is not purposeful to direct his mental energy to some physical willingness to engage life.

What will I be doing with my mind today? Such a question never seems relevant.

As he has remained in bed all day, I haven’t given him a midday dose of Lyrica. He doesn’t seem to be needing more sedating. Lyrica is a drug for epilepsy, an anticonvulsant. It is approved for use in GAD in Europe. The doc considers GAD usually accompanies BDD in some way anyway. It works to slowly reduce glutamate and norepinephrine neurotransmitters. It dampens down reactivity. This has allowed us to up the Prozac with much less disturbing akathysia. That is the awful internal restlessness, jitters and shakes that can accompany all our attempts to take SSRIs.

We are nearing the two month mark in blogging our attempts to overcome this exacerbation. As we seem to conquer one compulsion, another one takes its place. He can now visually body scan his own leg hair and induce a panic. Too much hairiness equals too much DHT equals hairloss. You can see the deer in the headlights look on his face as he does it. I am powerless to stop it. It is very hard to live with. The only thing going for us is my son’s willingness to battle through with the medication.

On another positive note. We are going in for 3 MRIs this will be part of a study on oxytocin. These MRIs will then be used diagnostically to target the transcranial magnetic stimulation. We are booked in towards the end of May. It will be interesting to see how his brain looks and if anything odd shows up. From the readings I have done, the amygdala is more illuminated than normal.

BDD is thought to be a biological disorder of the primitive alarm system. The alarm system is built around the amygdala. Just waking up can trigger the amygdala to fire. This then trips fear stories to arrive in the brain to provide context for what is alarming. So my son fears going bald. This is his learnt fear. Why he can’t diffuse this fear like other people can is because it is linked to this alarm. If he even thinks of it, he causes alarm sensations. So trying to avoid any thought of balding seems the only option. If the fear doesn’t eventuate then the alarm subsides. This is why plastic surgery is sort. It provides a short term fix for a fear that seems so consuming. But the alarm system is still faulty. Another story soon is born out of feeling the fear and thinking what is the worst thing I can be fearing. Give that feeling context and your new BDD has arrived to torment you. The surgery will not work and can never work because the content of the fear is not the problem. It is the generating of fear in the brain coming out of the amygdala.
If you can ever get your head around this understanding and realise your amygdala is sending fear stories you might be able to think yo...

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