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It's been years - update


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Hello,

It's been several years since I've been on this site. I'm not sure if the older members are even still here, but I wanted to update you and also ask for a little insight.

So I'm 28 now, but I had very severe Pure-O from the age of 16 to around 25. During that period, I was on a cocktail of various medications, went through huge ups and downs, 4 psych hospital admissions, several years' cocaine addiction, suicide attempts, you name it. I suffered initially from HOCD, then mainly POCD. But also experienced many other forms, although the sexual ones have always been the worst, except when it evolved to existential stuff.

Age 25 I decided to stop taking the contraceptive pill, as I'd been on it 10 years (from age 16, three months after which I had my first severe OCD episode). My OCD practically disappeared over the space of about 3 months. I had a full recovery with pretty much no help from medical services. Stopped taking drugs, moved house, got my dream job, had close friends, improved relationships, wrote and published a book about addiction. I also became very involved in meditation and Buddhist practices, as well as reiki and other energy healing forms. I don't believe, after lots of research, that stopping the pill and experiencing a complete remittance of symptoms is a coincidence. Since then I've spoke to doctors, friends and other professionals and have heard it's not uncommon for the contraceptive pill to trigger extreme psychological states, including OCD and panic disorder. Regardless, I was unbelievable grateful to be alive and to have such an incredible life after the horrors of my early 20's.

After these 2 years of wonderful recovery, and lots of meditative introspection, I began to get to the 'root' of many of my issues. I realised OCD was a mask for deeper unconscious conflicts. I also intuitively felt I needed to begin weaning off medication, as things had started to emerge about their damaging effects and I just felt I needed to do it sooner rather than wait until I was in my 30s or 40s. I weaned off 40mg Prozac over 8 months. Knowing what I know now, that was way too fast.

For the last year I've experienced severe withdrawal, which only recently has been recognised and supported by my doctor, therapist and pharmacist. While I know I have OCD tendencies anyway, the withdrawal (as it always did when I quit cold turkey in previous years and was then hospitalised) has pushed things to a dangerous extreme. Among other things I experience the following: complete non-tolerance to stressors, including stimuli such as light or loud noises, blind rage that is against my nature, OCD fears that developed into psychosis intermittently and delusional thinking, paranoia, tinnitus, head pressure, skin itching, gastric collapse, liver problems, sciatica, black hole depression, panic to a degree I've never experienced before, memory loss, waves of other memories that had been blocked by meds suddenly returning, remembering feelings and sensations that I haven't felt in ten years and had forgotten it was even possible to feel, sometimes nausea, trouble counting numbers or doing simple cognitive tasks, hair loss, etc etc.

I thought I was going crazy at first, but after joining an online support forum and reading recent studies and reports in the news, I've found my experience is frighteningly common. 2 family members and a close friend are now in the long process of withdrawal over approx 3 years due to debilitating symptoms related directly to SSRI medication use. My doctor/psych agrees that recent evidence is beginning to suggest protracted withdrawal syndrome is much more common that previously thought, and is weaning me off at 0.1mg every 3-6 months. (I reinstated at 5mg in May to take the edge off the worst symptoms and so I could function minimally). I am desperate to get off these drugs as I realise, at 28, I have not had a clue who I am for the past decade. I'm angry that medication is dished out so freely when the drug companies themselves state they don't know exactly how they work, and their 'clinical trials' are repeatedly found to be biased. I truly though Prozac helped me, but I wasn't even real on it, I was just numbed while all of my issues were bubbling up underneath. It's very frightening.

So in terms of the OCD, I've crossed some kind of 'threshold' in my subconscious. Instead of just getting a scary thought and then obsessing about it, I lose sense of self and embody parts of whatever it is I'm fearing. Like my mind will experience all the things I'm afraid of, but as if they were a part of me. For instance, I've had waves of having no empathy in withdrawal, which is terrifying to me as I've always been terrified of being a bad person. But during these 'waves', I can certainly feel things that I don't want to be me - including rage, no empathy, viscious thoughts, sexual ones. It's as if a layer of something has been ripped off in my brain, and my personality fragmented into lots of parts. I'm having a 'window', lucid moment now, but during a bad epsiode (it comes in these waves every few weeks or if I am exposed to any kind of stress), all I can do is hold onto the bed or floor and hyperventilate. My mind sort of splits apart and it feels like I'm in a bad LSD trip or something. OCD, funnily enough, has become inferior compared to this experience, but it's still a driving factor.

I've also had extremely disturbing thoughts about everything that happened during my very unwell years. Things I did that I'm ashamed off that I'd almost blocked out, the initial traumatic OCD episode at 16 which I never really got over, even though I thought I had (my CBT therapist suggests I have some kind of PTSD from this). What is frightening is realising that my unstable sense of self was triggered by this one moment, and that particular OCD fear turned out to be partly true. I had HOCD and was terrified I had always been gay and never realised, and it turned out my sexuality was an issue. I was deeply ashamed about being attracted to women sexually, but now accept that sexuality is fluid and I'm most likely somewhere on that big bisexual spectrum. It does fluctuate but I'm not really interested in that these days. My problem is that this fear dominated and ruined my life, with all the constant checking etc, and it turned out to be somewhat true. Likewise with a later obsessional fear. I know that the withdrawal is warping my perceptions and sense of reality, but this has been a huge trigger. Recently I did a meditation and experienced an intrusive sexual thought that was enjoyable, no anxiety, a real feeling of attraction and calm arousal. It was only in the few seconds after that I felt anxious. I feel as though the medication has tipped regular OCD over into something borderline psychotic and it is terrifying. I am getting therapy but for now I'm mostly housebound. I haven't killed myself yet though so that's the main thing.

Anyway I'm really sorry for the length of this, it's hard to express myself well with this cognitive stuff. I guess I want to say, for one, that full recovery is possible as I experienced it. It is vital to look into any medications, implants etc you are taking, your diet (my OCD flairs up worse after I eat sugar, grains or dairy) etc. Don't ever think you are the worst case or 'ill for life', as so many doctors like to tell you. Be so so careful with meds, do not stop taking them or keep switching them about. If you do decide to taper, it needs to be done incredibly slowly so your central nervous system has time to recover (years, rather than months). I see so many stories online about people going through this, and I wouldn't wish it on my worst enemy. And also it would be good to have a little extra support, as I'm fairly isolated now (my own doing, down to OCD stuff). I get tapering guidelines and support from the survivingantidepressants.org website, but I would like to connect more with others for the mental side of things.

Thank you so much if you got this far! As dark as things are, I'm confident I'll recover in the long run. I just need to slowly get out of this pharmacological mess, stick with steady therapy, and try to survive the waves of damage. One thing is for sure, if I get through this I will never rely on a doctor's advice again, I'll take responsibility for my own health and wellbeing, and never take my body and brain for granted again. Wishing you guys healing x

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Also forgot to mention my ocd ruminations now are fixated on 'what if you were always a bad/dangerous person underneath'. This has been distorted and fueled by my behaviour in withdrawal and prior to it. I became a very reckless, destructive, impulsive and selfish person when I was at my worst with ocd. I always thought I was a good person deep down but now I see all the pain I've caused my self and others. I fear being a narcissist or psychopath, and a deviant. It's as if I've delved into my subconscious shadow and see that these potentiaks are all actually there and that's why I developed ocd, because I was so afraid of them. It's very confusing, my sense of self has been shattered once again. 

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2 hours ago, Saffie said:

Thank you so much if you got this far! As dark as things are, I'm confident I'll recover in the long run. I just need to slowly get out of this pharmacological mess, stick with steady therapy, and try to survive the waves of damage. One thing is for sure, if I get through this I will never rely on a doctor's advice again, I'll take responsibility for my own health and wellbeing, and never take my body and brain for granted again

Sending you my best wishes Saffie on your journey out of this withdrawal Hell.  I don't particularly want to scare anyone but all too often medication is dished out as the only immediate tool available to GP's to offer help to someone struggling.  It's frequently prescribed within a first 10 minute appointment.  The side effects can be catastrophic and dangerous and even where apparently tolerated, withdrawal can be almost impossible.  I have been through my own Hell with medication issues.  I'm pleased you have a support team in place and hope that with time you find freedom.  Good Luck :hug:

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Hi Saffie. 

I also think the contraceptive pill has negatively affected my mental health when I've been on it. I've been on various different ones over the past 10 years or so, and 2 years ago I also decided to stop taking any kind of hormonal contraceptives and within about 3 weeks I started feeling so much calmer and less anxious, to the point where my partner had started to worry as I acted like "a completely different person" but in a good way and he just wasn't used to it at all. I don't think it's helped my OCD much, as that has always been bad, but certainly my mood and general anxiety levels have vastly improved since being off the pill.

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1 hour ago, Caramoole said:

Sending you my best wishes Saffie on your journey out of this withdrawal Hell.  I don't particularly want to scare anyone but all too often medication is dished out as the only immediate tool available to GP's to offer help to someone struggling.  It's frequently prescribed within a first 10 minute appointment.  The side effects can be catastrophic and dangerous and even where apparently tolerated, withdrawal can be almost impossible.  I have been through my own Hell with medication issues.  I'm pleased you have a support team in place and hope that with time you find freedom.  Good Luck :hug:

Good to hear from you Caramoole! You're totally right, I was gobsmacked the more I found out about these drugs. There's a database of at least 6000 known suicides and homicides with a direct link to antidepressant use. I think we'll probably see a lot more of it coming out over the next few years, there's already a parliamentary group building and putting pressure on to change the warning labels.

When I was last hospitalised several years ago they started putting everyone on a drug called epilum, saying it balanced moods. Everyone was on it, I was for a year. It wasn't until I went to a doctor in london the following year and they were baffled as to why I was on it, as it's actually a drug for epilepsy. They were clearly pushing this drug at the time, it was essentially a guinea pig test. From hearing other patients` stories, this isn't uncommon either. Psychiatrists often receive financial bonuses for pushing certain drugs, it is now legal to check whether your psych has ever received payments or incentives from any pharmaceutical company. 

Sorry to hear you've been caught up in it too, I hope you find some balance. 

33 minutes ago, Lynz said:

Hi Saffie. 

I also think the contraceptive pill has negatively affected my mental health when I've been on it. I've been on various different ones over the past 10 years or so, and 2 years ago I also decided to stop taking any kind of hormonal contraceptives and within about 3 weeks I started feeling so much calmer and less anxious, to the point where my partner had started to worry as I acted like "a completely different person" but in a good way and he just wasn't used to it at all. I don't think it's helped my OCD much, as that has always been bad, but certainly my mood and general anxiety levels have vastly improved since being off the pill.

That doesn't surprie me unfortunately, it's crazy how these things can screw up our system's ability to regulate itself. We've become such a pill popping culture we don't always consider the harm we're actually doing, I still can't believe they hand this stuff out to teenagers and even kids with very little thought. I'm glad some of your symptoms have improved, I know my sister also went nuts when she went on the pill and had to stop it. Ashwaganda root capsules have helped a lot with hormonal fluctuations. 

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hey me90! its me lasthope from siad

I always was against ssri's because of the horror stories ive heard, Ive even heard it causes suicidal/homocidal tendencies, in some people because there liver metabolises it way too fast its like a gene mutation or something and its not that rare. Anyway I must admit though sometimes they do help just a little bit, but yeh in an ideal world Id explore all other options first.

Trying to get the NHS to admit theres anything wrong with the pills they are pushing though you are peeing in the wind, as unlikely as this may sound. Here is my testimony to just what you are saying.

I at one time took rec drugs, and developed panic and anxiety over my heart, my ocd came into effect here also, because I would go to a and e, and they would say you are fine nothing to worry about. I took one statin pill, because I got it into my head my cholesterol maybe high, the effect was devastating, it cramped my finger up an hour later (which is a symptom of long term use) then my muscles spasm'd and my heart rate became high all the time, I couldnt exert myself,  or it'd be like Id just ran a marathon, I would feel sick just walking the dog and nearly collapse, and when Id take my pulse my heart was beating over time for no reason, I also had problems with short term memory my memory would just evaporate I couldnt do sums in my head, I couldnt lift my head properly either, and I also would get a flush into my foot, a hot flush, and no where else, oh and Id sweat profusely for no reason during the night, oh and my stomach wouldnt digest things properly. ( these were all symptoms of long term statin use ), well I knew something was wrong now, and nobody believed me now, because how unlikely and it was all in my head previous, sucks to be me, eventualy they took me into hospital because my ECG'S were abnormal they thought my heart was inflamed, it wasnt.

I had a stress test my heart rate got to exceedingly high rates, 210 just by walking when I began it my heart was 110 the nurses jumped up and said what the hell - the doc then told them it was anxiety - (it wasnt ).

I was a very fit young man at one point in my life I used to box and run 3 miles a day, so I knew that my whole arms going red, feeling sick and incapacitated walking on a treadmill for 15 minutes was not right, oh yeh and ectopic beats I was getting them now, NEVER EVER did I get them , and I used to do cocaine and marijuana, and I never once felt my heart skip a beat, NOBODY believed me. I started researching I came to realise okay there is nothing structurally wrong with my heart, but this is clearly something may be neurological I stumbled across dysautonomia, basically the system of the body being run, the autonomic nerves, alot of people suffer with this, and they REALLY struggle to get a diagnosis because its all put down to anxiety, its not, sure anxiety is a symptom and they overlap but, you know when something is genuinely wrong, and I knew, and there was evidence, now to a doctor as long as your not having a heart attack or at risk fo that, they dont really care, I went to a nurse at the NHS cardio nruse, and explained to him how I think I have POTS.

Postural Orthostatic Tachycardia Sydrome, he told me why would I want that label, and he wrote a report saying that, I "wanted" to have it, I explained to him that I didnt but I wanted validation because when I tell my mother as a young man, I cant lift furniture up the stairs because it knocks me incapacitated and sick, and my heart could even give out, if it was really really heavy and she thinks im making an excuse I need people to know its not. IT WAS ALL VERY PSYCHOLOGICALLY DAMAGING.

I couldnt believe it was happening to me, so I saved and I went to a private cardiologist, who I knew was familiar with dysautonomia, and for around 300 pounds - he told me that it was not POTS, because my increase from laying to standing wasnt high enough but it was VERY possible it was inappropriate sinus tachycardia, caused from dysautonomia, but there was no real cure and the only remedies were beta blockers and intake of water, to increase blood volume.

It was probably one of the most scariest times in my life, it really was. Id stil say I felt better then than I do now though, but yeh those pharmaceuticals unfortunately I do NOT trust them, but yeh the NHS are indoctrinated to believe they are good. It was so psychologically damaging to be so invalidated for almost a year and have nobody listen it hurt my soul deeply.

Oh yeh and its a chronic condition and its got better, but its still there unfortunately, no chance of me doing sports in my spare time anymore :(

I read your 2017 post, and i felt so good you were maybe finally beating your ocd, i was thinking of messaging you but i thought you probably would never come bck here co-incidentally you post a couple days later, im in the trenches myself massively atm i dont know what to do, do u keep any contact with anyone from siad, ive been thinking about how much i miss the forum, and people like highonlife, thissucks, guiltbabe, barkingmad.

 

all the best saffie.

 

Edited by humbleno1
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Hey lasthope! So good to hear from you. I'm sorry to hear you're still suffering also, and that is a really crazy story. Sounds very similar to the ones on the support site for coming off them, my symptoms seem to actually be easier than others. 

To be fair, over the years I've learned to react differently to ocd stuff, but I've uncovered even more stuff in the process. I'm learning healing isn't a linear process.

I'm ****** that the meds have done this, but I'm taking it as a learning opportunity. Most days I wake up and my skin crawls with the transition from sleep, as if every nerve in my body is on fire. Parts of my body lock up, my head throbs as if my brain is being squeezed, I literally forget what I'm saying mid sentence, and am now on a very strict diet for life as prozac destroyed my gut lining. It's all pretty mental, I still can't believe how easily they dish them out given the latest report - that over 50% of people go through serious withdrawal, and 30% have to stop working due to the severity. I believe those numbers could be higher in reality. 

Good to hear from you though, I do keep in touch with one guy off siad, and did have barkingmad/Highonlife on Facebook before I deleted it. I wonder where all the others went.

I'm not forgetting that I had two years of complete recovery, no diagnosable ocd or anxiety or depression. So it's totally within the realm of possibility. My goal is to get this rubbish out of my system over the next few years and finally find out who I am. I keep getting these little memories or sensations or smells that pop into my consciousness, it's like slowly waking up from a dream I didnt know I was in for the last ten years. Super weird, I wish I'd never complicated things with meds but here we are. 

Really hoping you find some balance too, I've found it's always an all round approach to healing of any kind. Not just one therapy, but lifestyle, diet, movement etc. Have you had any remittance in your ocd over the last couple years? 

Edited by Saffie
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2 hours ago, Saffie said:

Hey lasthope! So good to hear from you. I'm sorry to hear you're still suffering also, and that is a really crazy story. Sounds very similar to the ones on the support site for coming off them, my symptoms seem to actually be easier than others. 

To be fair, over the years I've learned to react differently to ocd stuff, but I've uncovered even more stuff in the process. I'm learning healing isn't a linear process.

I'm ****** that the meds have done this, but I'm taking it as a learning opportunity. Most days I wake up and my skin crawls with the transition from sleep, as if every nerve in my body is on fire. Parts of my body lock up, my head throbs as if my brain is being squeezed, I literally forget what I'm saying mid sentence, and am now on a very strict diet for life as prozac destroyed my gut lining. It's all pretty mental, I still can't believe how easily they dish them out given the latest report - that over 50% of people go through serious withdrawal, and 30% have to stop working due to the severity. I believe those numbers could be higher in reality. 

Good to hear from you though, I do keep in touch with one guy off siad, and did have barkingmad/Highonlife on Facebook before I deleted it. I wonder where all the others went.

I'm not forgetting that I had two years of complete recovery, no diagnosable ocd or anxiety or depression. So it's totally within the realm of possibility. My goal is to get this rubbish out of my system over the next few years and finally find out who I am. I keep getting these little memories or sensations or smells that pop into my consciousness, it's like slowly waking up from a dream I didnt know I was in for the last ten years. Super weird, I wish I'd never complicated things with meds but here we are. 

Really hoping you find some balance too, I've found it's always an all round approach to healing of any kind. Not just one therapy, but lifestyle, diet, movement etc. Have you had any remittance in your ocd over the last couple years? 

do you think they are useful even as a short term fix i mean while u are on them u dont feel too negative do u? or do u? and thats cool i would of liked to speak to highonlife again in particular, ive had moments but in 2012, i went to the police and confessed to a pocd thought, which was a pretty traumatic experience for me, it took me many years to get over all that. now im a father and got a new challenge, so not goodatm, going to get some privte therapy hopefully end of this month.

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Wow, that's intense. Congrats on becoming a father, ironically people with pocd and the like are some of the best parents, but it must be tough. It's funny how things change though, there's always new challenges and you can only do your best with whatever turns up next. 

In terms of the meds, they did numb the symptoms from a 'top down' level as my therapist calls it. It's not that they don't have an effect, but we don't really know at what cost. Many of the long term effects of ssri's are only becoming known now, and you have to weigh up the risks. For me personally I have known too many people wrecked by them, and from this experience if I'd known the potentials I wouldn't have touched them with a barge pole. With a condition as serious as ocd, it's just not worth the risk. I'd just advise anyone to do their own research and take caution. 

I've had help through somatic experiencing, which is a good way to address the automatic nervous system resoonse that ocd ingrains in you. This combined with cbt could be very helpful. Do you do mindfulness or meditation? That is an important tool to develop too. Really hope you get some relief, just remember the potential is always available. 

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  • 3 weeks later...

Hey me90! I actually think I have the same username that I did on SIAD lol. I can’t offer any great advice but I wanted to let you know that I care about you and do think of you from time to time. Im so sorry to hear that you’re having such a hard time with withdrawals and OCD. You’ve helped me out quite a few times in the past and it was (and still is) deeply appreciated! I hope that’s not too weird coming from someone you’ve only chatted with a few times on the internet ?

Also, hi lasthope! I recognize your name from SIAD! ?

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constantworrier, that's so kind. Thank you, it's really helpful to connect with others online again, I wondered recently what happened with everyone from SIAD. I'd like to think they're off recovering and living fuller lives. Your words are really appreciated x

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