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Daryl Brown Show Notes
OCD and Tourette's Syndrome
0:07:15
Daryl grew up in a suburb of London (United Kingdom) with 2 good parents, they are not together, but lucky to have them - a mix of nature and the city - 2 older siblings, 1 younger sibling
0:08:15
But missed a lot of family time due to mental health issues and hospitals - and his behaviour changed on the psychiatric drugs - and he went to special needs school far away - Daryl had some movement disorder and phobias since he was a baby
0:09:15
His brother noticed Daryl had strange movements as a baby and told others that Daryl had Tourette's Syndrome before he was diagnosed - Daryl got much sicker when he was about 9 years old, his OCD (obsessive compulsive disorder) and Tourette's got disabling worse
0:10:15
Daryl OCD caused him to spin around, and do repetitive rituals in a particular way - if it didn't feel like it went right, he would have to start the ritual over again - when it got really bad it was life consuming - he lost a lot of sleep worrying - a common feature
0:11:15
OCD symptoms was frustrating for Daryl, when it got out of control - Tourette's manifested has a lot of arm movements, leg movements, constantly parts of his body moving, even if people couldn't see what was happening with his toes and fingers, known has motor tics - Daryl also had a vocal tic of clearing his throat and making a weird noise
0:13:15
When Daryl's OCD and Tourette's got really bad, it was hard to live with the symptoms, but when mild they felt like a normal part of Daryl's life - for Daryl, only when its a the extremes does is it bothersome, and that may sound strange to some people - it doesn't interfere too much
0:14:15
Daryl remembers that his school was pushed around his phobias - other kids were yelled at, Daryl was yelled at when he coloured outside the lines - he was constantly being punished and he got scared at the way the other children were shouted at as well - they pushed him really hard about his phobias, and he tried really hard to break through and he did, but it was very hard - it all became very stressful and made everything a lot worse - at one point he ran away from school
0:15:15
The OCD and Tourette's was interfering with Daryl's ability to get dressed for school and it was all a stress on his Mom as she had to go to work - as Daryl got sicker, she called the local GP and child psychiatrist and they started prescribing medications - Daryl was only 9 years old
0:16:15
The child psychiatrist was convinced Daryl had OCD and brought an orange sugary liquid for Daryl to drink - it glowed in the dark - turns out the orange drink contained an SSRI (selective serotonin reuptake inhibitor - an anti depressant) - though Daryl didn't have depression - NICE (the UK's National Institute for Health and Care Excellence) guidelines said antidepressants are the standard treatment for OCD
Antidepressants and antipsychotics
0:18:15
Daryl doesn't remember the effects of it, other than it tasted good because of the sugar and it had a cool colour - but it had no effect on his symptoms - because he was so sick he missed some school, so they visited a children's mental hospital
0:19:15
They said he needed to come in straight away - it was a diagnostic hospital, so children would be there for a year, there would be cameras watching them, and meeting with psychiatrists and psychologists and everyone in between - there was also a school so Daryl got some form of education - they put Daryl on anti-psychotic medications for the Tourette's Syndrome, also according to NICE guidelines - even though Daryl didn't have psychosis - so they are giving him both antidepressants and antipsychotics
0:20:15
The antipsychotics had no positive effect on his Tourette's, they just made his movements even more tiring on his body and upsetting - after a few months, his symptoms died down a little bit because some normality to his environment had returned and he was around other children - not because of the medications
0:21:15
Daryl's body also got used to the mixture medications, so he started to feel less tired - but he put on a lot of weight, when historically he was impossible for him to gain excess weight - Daryl also started to experience cravings, but he didn't feel in control of his actions and his emotions were all over the place, which is not like Daryl - crying one minute, angry the next, arguing with everyone, but didn't know why he was arguing but couldn't stop himself
0:22:15
It was frightening and confusing - after 9 months they confirmed diagnosis of OCD and Tourette's Syndrome - Daryl was recommended to go to a special needs school, but it was the middle of the school year and it was a nightmare to find a school - they did find one very far away, but that meant Daryl was not part of his home community
0:23:15
Daryl also continued treatment in a center that specialized in OCD and Tourette's in children and adolescents in south London - but that was also very far from where Daryl lived, so he had to go to that center and then school, and it was too much traveling and stress - and Daryl wouldn't say there was any real treatment - they expected Daryl to continue to take the antidepressants and antipsychotics, there was no plan to come off of them - it was expected that Daryl take them, no questions asked
0:24:15
Living away and going to another school was hard - if Daryl was strange to the other children in the community before, he was a lot more strange when he was removed - he would get teased in the street, and that got worse
0:25:15
Daryl really missed out on any thing in the community and didn't have a social life or a normal childhood - he was a normal intelligent child and wanted to do what every body else was doing - he did get to go home on weekends - the treatment center maybe helped with some of the phobias Daryl had
Seizures. Brain Tumour?
0:26:15
Daryl stopped going to the after school day center after about 2 years - but there was no plan to stop the medication - sometimes there were promises that maybe one day in the future if their treatment miraculously works, he might be able to stop the meds - but there was no realistic plan to stop them, even when he stopped going
0:27:15
Daryl continued on the medication until he was living on his own and was 21 years old - Daryl had some seizures and passed out a couple of times - he didn't know yet it was from the medications - Daryl just attributed the new symptoms to OCD and Tourette's
0:28:15
Even though it was a special needs school, Daryl joined the football (soccer to North Americans) team and started to lose the excess weight - but it was hard to run, he was wheezing, because of the medications - but it was good to play football for the short periods he could - because the meds changed Daryl's behaviour so much, he was always arguing and he wasn't the same person - their only explanation was that Daryl had mental illness - as a result, Daryl lost contact and relationships with his siblings
0:29:15
The medications also blunted Daryl's impulsivity - he ran into traffic once - Daryl knows that he did not think that way before the meds, or since he stopped the meds - another time he took all his meds at once, not to kill himself, but because he couldn't stop the impulse
0:30:15
When Daryl was 21 years old he got very, very sick - and his erections stopped working properly - his penis wouldn't respond as it previously had with women - nor was he having the spontaneous erections like other young men
0:31:15
That was very scary - Daryl looked at the leaflets for the medications and saw sexual dysfunction far down the list - he went to the psychiatrist and he said it was probably the medications, we know about this, go off the medications and every thing will go back to normal - he just had to get a blood test to check on things - the results showed that Daryl's prolactin was through the roof - and wouldn't go down for a long time and they said that was impossible, 'nobody's prolactin stays that high'
0:32:15
They thought maybe it was a brain tumour causing high prolactin, but didn't really elaborate and left Daryl thinking he may have a brain tumour and wondering how long he has to live - but it wasn't a brain tumour, his prolactin levels normalized but his thyroid was messed up - eventually his blood tests normalized but the symptoms didn't go away and his 'willy' never went back to normal - the doctors kept fobbing him off, 'sometimes it takes a couple of weeks' - 'sometimes a couple of months' - then they said it was impossible because the drug had completely left his system and it had nothing to do with them
Withdrawal weirdness
0:33:15
Then they started to say it was caused by a mental illness - the withdrawal actually caused a weird psychosis, deluded and confused thinking and weird adrenaline, all sorts of symptoms like brain zaps, even to his genitals when they were over-sensitized during withdrawal, like when he ejaculated when he was shopping, it is known as PGAD - Persistent General Arousal Disorder - and this is known to happen temporarily during withdrawal - but at 21 Daryl knew this was not normal
0:34:15
But the doctors and psychiatrists didn't believe in that, but Daryl knew full well what was going on and wondered how little did they know? - he looked up on the internet the medications he was on - they had added another med, Lyrica, to his antidepressant and antipsychotic, and the doctors touted how is was a 'wonder drug' and 'amazing'
0:35:15
Who knows how many other people they've given it to - its classified as a class 3 drug now, a street drug - Daryl never had an apology for that either - so he had to withdraw from all of those meds - they don't know how these meds work, even the drug companies don't know how or why - Daryl felt fear realizing for the 1st time how little these psychiatrists and psychologists really knew
0:36:15
The anxiety caused by withdrawal was a lot to deal with - also brain zaps, a full body 'electric shock sensations' during withdrawal as described in the NICE guidelines - Daryl started by tapering off the medications by cutting up the pills, but at 21 and his dick not working, and realizing the so-called experts didn't know much, was very scary and he wasn't going to keep taking them - he completely stopped taking them after about 4 weeks because they were making his dick numb and not work
0:38:15
Daryl wanted to know who did this to him and why - he felt targeted in that they were giving a child with disabilities medications that they did not know how it would affect him, its really abusive and he didn't feel like he was safe - and it is very lucrative for these pharmaceutical industries and in reality it is very dangerous and nobody stepped in any where
0:39:15
When Daryl was off the medications, there was no change in his OCD or Tourette's symptoms - there was no need to take these substances - Daryl says you would think they would have questioned that
0:40:15
Daryl advocates for safety measures to be taken and joined the Everyday Psych Victims Project and he's interviewed a few people who've been through the mental health system to give them and himself a voice - there is a 'side effect' charity with some psychiatrists and psychopharmacologists that know about this and have read the research, they're called Rxisk http://www.rxisk.org/ - and they are very aware of the permanent sexual side effects of antidepressants
Brain Zaps and a Marathon
0:41:15
Both SSRIs and SNRIs - they've started a campaign to raise money and awareness - so Daryl signed up for a marathon to raise money and awareness for them - but it is hard to ask people to give money because your dick doesn't work - and it is not a mainstream charity, and some people won't donate for that reason - but Daryl followed through and did the marathon even though he missed all the training due to injury, but managed to finish somehow
0:42:15
Daryl has always liked sport, football, exercise - during withdrawal needed to distract from the horrible physical symptoms, and one of the ways to deal with that was to go for a run - doing sprints especially helped to manage his adrenaline - however, it felt like his life plans had been thrown out the window and he was very upset about what had been done to his genitals
0:43:15
But it doesn't just affect his genitals, it affected everything, how he felt and related to the world, especially at that age - so he focused on sport as a distraction, and that gave him some experience for the marathon, but he only played football twice about 2 weeks before the marathon - he ran until about half way then started walking and the last 10 kms was painful and a 6 hour finish time
0:44:15
Daryl tried to train through the injury as much as he could, but it came to a point where he was doing more damage - but he was determined to show up at the start line
0:45:15
He thought he would walk it, but when you line up at the start line you run with everyone else and he just tried to keep going - the music, crowds and kids cheering so he kept going as far as he could
0:46:15
With the brain zaps, his dick not working properly, or ejaculating sporadically, and pain in stomach - and that has not gone away, there is not a day that he is not constipated - Daryl had been medicated for over a decade, all through puberty
0:47:15
It impacted his emotions, angry one minute, sad the next, hyper the next - impeded his ability to think - he had to untangle his delusions and illusions - the adrenaline and emotions were all over the place and exercise even those out a bit - Daryl will turn 30 soon
0:48:15
In his early 20s it was extremely difficult to socialize, he felt like an alien, and he didn't want to do those things like flirting - it was horrible to be the only one in the world in that situation
0:49:15
He didn't think he'd ever socialize again, he wondered what planet he was living on - there is less pressure now to be flirtatious, so its a little easier - but he still often feels terrible when he compares himself to other people - so it still affects him a lot, but less so
Post SSRI Sexual Dysfunction
0:50:15
Daryl still has quite a lot of pain, the stomach pain can be quite nasty - he does part-time work and volunteering, but the social part of his life is always missing - he has a leg injury from 2 years ago and still no diagnosis and he's limping very badly, he barely made it down stairs this morning, and this is after having hip surgery - there is talk of a hip replacement and pain killers but not sure what will happen with that
0:51:15
His hip and leg problems could be due to pressure from his bowels, he doesn't really know - and there has not been much research on side effects of psychiatric drugs - and he's been put off seeing doctors
0:52:15
Daryl likes watching football, but would rather be playing - he likes writing songs on his guitar and going for a jog - so exercise is a big part of self care and he's not sure what he'll do if his leg doesn't get better - though it hurts a lot to play guitar
0:53:15
Daryl has a couple of good friends that he could tell what has happened to him and they still liked him as a human being and that helped a lot because he felt he wasn't interested in flirting any more - some people thought he was going through a strange weird period, or was dealing with trauma, and that pushed people away as well
0:54:15
Daryl was wary to be public about his experience, set up a website and did a couple of videos, and started telling people in his life as well, to share his experience
0:55:15
There was no outpatient groups for adults, and they weren't allowed to socialize with other patients outside the hospital or clinics - one of their concerns is they don't want patients to meet, and they don't want patients to talk about their experiences with medications - Daryl thought he was the only one having this side effect and was on his own, and wasn't allowed to talk to the others to see if they also had this side effect - it is called Post SSRI Sexual Dysfunction (PSSD)
0:56:15
It means that the sexual side effects of SSRIs continue even after you stop taking them - he discovered others on the internet and that's when he decided to do something about it, since keeping it a secret wasn't working so well - it felt good to know there was other people, and that he was doing something about it - he also found other people that had bad experiences in the mental health system as well like Speak Out Against Psychiatry, Friends of East London Loonies, and The Every Day Psych Project
0:57:15
Daryl doesn't want this to happen to any one else, and the lack of regulation - it is criminal except they've got themselves covered legally - there is no reason except bank balances and careers that are set up on misinformation and secrecy and it needs to stop - and Daryl deserves validation that it actually happened instead of living his whole life with some imaginary thing that isn't happening
Doctor denial of PSSD
0:58:15
When he was a child, being around other children also going through similar experiences was good, but the drugs were not necessary
0:59:15
The school could have been more accommodating to a child instead of being so aggressive when that child wasn't exactly how they wanted them to be - but the staff were nice - he was scared before going in that the staff would be in white coats and do weird experiments on him, which they did, but not that they were collecting the data on their experiments - the staff were nice and well meaning, but obviously somebody should have intervened and stopped them from drugging every one into oblivion
1:00:15
His relationships now with his parents is good, but its taken a chunk out his life - when Daryl told his Dad about PSSD, his father said he was worried this would happen - his Mom was upset to, she was lied to and told the meds were safe - but the doctors insist that there can't be any permanent harm once the meds are out of the system - there is no risk, 'there's nothing to lose' as they say
1:01:15
They try to convince any one in his life that Daryl is mad and its not real - and they tried to turn his family against him and not to believe him - so its obviously very upsetting to go through - when Daryl was going through withdrawal he was paranoid so it was difficult to speak to his Mom and Dad - and he missed out a lot of life with his siblings
1:02:15
Daryl feels like his OCD and Tourette's symptoms are part of him, and they are not always at their worse - so its not the worse thing in the world - Daryl has hunch, in listening to other parents, that vaccines as babies may be causing tics and stuff - but there is a lack of research on vaccinations as well
Connect with Daryl Brown
Twitter: @RunAgainstCastr
Daryl's blog: PSSDblog
Daryl's marathon campaign
Info about Post-SSRI Sexual Dysfunction: Rxisk
The Everyday Psych Victims Project - Their YouTube and Twitter