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Happy days are here again: My recovery from a life-time of undiagnosed sleep apnea and the Hell of bipolar misdiagnosis and junk meds.

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#1 RisperidoneHell

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Posted 20 November 2016 - 08:29 PM

Hello friends,

 

I am a 33-year old soul from Canada. I am biologically male and identify socially as such. English is my native language, though I have near-native fluency in French and some Spanish.

 

A little over a year ago, I had posted a little bit about myself, including my horrific experience on Risperidone and other neuroleptics and the hellish place that I was at back then.

 

It is with irrepressible elation, then, that I would like to tell you all what is now my wonderful story:

 

Currently, I am nearly six months free of the scourge of Risperidone and other anti-psychotics and junk meds, I now drink alcohol less than I ever have at any point in my adult life, and I am 13 months clean of marijuana.

 

Furthermore, by finally being able to discover and manage the devastating health condition that had crippled me for the first 33 years years of my life – namely one of the most severe cases of sleep apnea to have ever been diagnosed -- I have also overcome the cruel demons that had spent over 30 years not only sapping my cognitive strength, but also devastatingly undermining my emotional, social, spiritual, and physical well-being. I now feel better than I ever have: I feel happy, energetic, focused, and optimistic, all without the delusions and the manic or psychotic symptoms that I experienced the last time I felt this way.

But the path that I took to reach this point and the anguish that I've had to endure for far too long to get here have been so relentlessly torturous that they are not something that I would even have wished on Adolf Hitler.

 

For not only did I have to contend with severe undiagnosed sleep apnea for almost all of my life, but the changes that my CPAP therapy for the condition caused to my body and my mind led me to a severe episode of manic-psychosis, in spite of my only previous history of mental health problems having been a few months of intermittent panic attacks in 2005 that went away after my treating individual attacks with Lorazepam (ativan) for a few months.

 

This condition, which is understandably difficult for psychiatrists and mental health professionals to understand and diagnose, occurs in some people upon getting treatment for severe sleep apnea and is known as CPAP-induced mania (https://www.ncbi.nlm...les/PMC4208920/). While it is more common among patients with a prior history of bipolar disorder, the study that I just linked to shows that it has been observed on occasion in individuals with no prior history of severe mental illness. The psychotic attack led to my being hospitalized and put on meds that may have initially been a necessary evil given the acute severity of my condition, but the consequences of my having taken these meds and my having to deal with their corresponding side-effects led to a severe episode of depression, the complete decimation of my energy, motivation, libido (risperidone and then latuda), and sense of pleasure or fun, a case of Cotard's Syndrome that had lasted for over a year (I thought that I was dead and in the afterlife of Hell and that this was my punishment for the all wrong I had done in my life), and constant delusions of reference that kept feeding the Cotard's Syndrome. All of this led to a second hospitalization and a misdiagnosis of Bipolar 1 with co-morbid alcohol and marijuana dependencies. It is only by quitting all meds in June that I have been able to come out the other side in these past months.

 

That said, I am grateful for the years of torment and, even more so, for the most acute suffering that I particularly endured this past year and a half: For if I were to have been blessed with the gifts with which I have been bestowed without first having had to suffer being constrained by the chains of misery, I would be sorely lacking in the empathy, in the perspective, and in the sense of justice that make me who I am today. Without the past year and a half, I would still be far too petty, far too angry, and far too weak and easily-rattled to achieve anything close to my potential.

 

If I may plagiarize Stan Lee, I would have this great power without also having the awesome sense of responsibility that must come with such incredible strength.

 

With this preamble out of the way, let's move on with the bulk of my story. It is probably quite long and taxing, and I'm not sure how much value it will have for others, but it's a story that I nonetheless desperately need to tell.



#2 RisperidoneHell

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Posted 20 November 2016 - 08:40 PM

Since early childhood, it was accepted among myself, my family, my educators, and many of my peers that I was quite intelligent and that I was far more academically-inclined than most of the people around me, especially given that I grew-up in a blue-collar mill town where most people had made their fortunes by either skating through high school or dropping out out-right, and then getting union jobs and starting families. While it had its seedy parts and poverty was not unknown, it wasn't a bad place to grow up and make a life for oneself in spite of its not being the sort of place where intellectual types tend to thrive. Moreover, I have been blessed with an incredibly loving and compassionate family and some awesomely inspiring educators and mentors, including a step-father whose incredible passion and boundless love have transformed my teenage and adult years in ways that would have made them far more dreary had I not been so blessed as to have him in my life.

 

My IQ, as measured at age 15, is 143, and most of my psychometric tests, taken at around age 10, were off-the-charts, though my severe deficiencies in penmanship and other fine-motor skills ensured that so-called gifted classification would elude me. Nonetheless, both my mother and most of my teachers saw intrinsic value in me as a person and as an aspiring intellectual, and did their best to ensure that the talent that I did have would be nurtured, making sure that I would also be treated as gifted in as many senses as would have been possible for me and never consigned to the special education classes on account of my weaknesses.

 

In spite of having such a promising intellect, however, I was always lacking in real-time cognition or in any meaningful ability to think on my feet. I could not speak at the same level at which I could write, I could not express myself extemporaneously, and I spent the bulk of my time as an emotional wreck and a social misfit. Happily, I now find it easier to write than I had ever found it before and I find it even easier to speak than I do to write, in sharp contrast with how things had been before.

 

Moreover, while I was always a good writer and a good test-taker, and my essays and research papers were generally well-received due to strength of the writing itself, I have always been a very bad researcher, and very bad at preparing and working from plans and outlines. I have generally lived in clutter, and I have never been good with schedules, budgets, organizer, or calendars.

 

While I had a theoretical understanding of French grammar that surpassed many of the native speakers around me, the fact that it was my second language exasperated the extent to which my ability to express myself orally in the language was already hampered by the cognitive deficiencies that had been mentioned above. Nonetheless, I count three of my French teachers in particular – in kindergarten, grades 3 through 5, and grade 10 – as being among the most inspiring people in my life and some of the most positive influences that have shaped me into the person that I am today.

 

Alongside my mother and those teachers, I have had wonderful educators who have fostered my love for writing, technology, politics and who have given me a strong sense of social justice and righteousness rooted in their instilling of a very progressive take on Catholic social teaching in me. My high school Spanish and religion teacher – a wonderful woman with Master's degrees in Latin American Studies and Roman Catholic Theology – was particular inspiring in this regard, emphasizing a progressive, humanitarian, living Catholicism through her teaching me about Liberation Theology and Christian Feminism.

 

While I was raised Catholic and went on to consider myself an atheist for a long time, I now considerable myself a Unitarian and post-Christian theist, with a faith rooted heavily in the Social Gospel, the Civil Rights Movement, and Liberation Theology, all of which which I consider to be living continuations of the Gospel and the strongest embodiments of Jesus Christ's work in the modern world. Unfortunately, my work schedule does not currently permit me to be active in any communities of faith.

 

Politically, if it were not already obvious to you all, I am firmly on the progressive left. Labels that I would use to describe my politics include heterodox social democrat, civil libertarian, and anti-neoliberal. Green and pirate politics have also had considerable influence on my ideology, as have old-fashioned social liberalism and socialist feminism.

 

 

Though I have never actually been diagnosed, I have often been labelled as being autistic, as an idiot-savant, and as having some sort of learning disability and various other cognitive impairments. Indeed, alongside my awful fine-motor skills, my hand-eye coordination always lagged far behind my peers. My gait was slightly awkward, I was a lousy athlete, and I couldn't dance to save my life..

 

For reasons that I alluded to above and that I will further discuss later on, I have recently transcended these limitations.

 

Given all this, I don't think I have to tell you how bad things were with respect to friends, women, and all the wonderful social and emotional experiences that make life worth living. In fact, while I had my first kiss and fooled around with a girl during the summer in which I had turned 14, I never had a serious girlfriend until I was 25 (early 2009) and remained a virgin until the age of 26 (later in 2009).

 

Oddly enough, I was a very profitable recreational poker player from about 2005 to 2009, though I relied on my knowledge of strategies and calculations more so than my (pitiful) aptitude for reading my opponents and their tells. Moreover, I have always been a pretty fast typist and a decent Guitar Hero player in spite of my poor coordination. I have always enjoyed card games and video games, though the latter interest me far less than they did prior to my crisis.

 

In spite of all these foibles, I was somehow able to make it through university and make the rent in unsubsidized housing by the time I had hit my mid-20s (around 2010 or so), and for the past 3.5 years I have been in a promising career with a wonderful employer that I have held in high esteem since long before I had ever started working there.

 

That being said, a lot of things were still going wrong: I was very dependent on alcohol and marijuana, aside from the few close friends I have made over the years, most of my social circle has consisted of the casual acquaintances that I partied, gambled, watched the game, and smoked dope with, and I was still being dogged relentlessly by my cognitive and social impairments.

 

Moreover, I was sleeping very shallowly and waking up throughout the night, I was always tired and had no energy, to the extent that I was consistently passing out on the couch at family functions, I was getting in trouble at work for regularly losing focus and taking micro-naps, and, by the end of 2014, my girlfriend at the time left me in large part because I would always zone out and nap when we were together, things to which she understandably took considerable great offence.

 

One very positive thing happened during this period, however. In November of 2012, I was 5'4 and weight 229 pounds. Obviously, this was unacceptable. I create a diet for myself that emphasized portion control, calorie counting, and the restriction of simple sugars. By the end of the year, I had taken up jogging, and by June of 2013, I had participated in a 5K run and was down to about 165 pounds. Not great, but good enough for a man of my height to be reasonably healthy and for me to be the recipient of a small torrent of plaudits from my friends, loved ones, and colleagues. My sleep, which had been getting awful by this point, also improved dramatically due to my weight loss.

 

At the same time, I was hired by my current employer, and was slated to start there in June of 2013.

 

Unfortunately, the week before I was to begin my new career, I came down with a severe flu-like illness that left me bed-ridden for days. I was running a high fever, my muscles ached all over, I was too tired to get out of bed, and many of my lymph nodes were swollen. Eventually, my temperature went down and I was no longer bed ridden, but my foot had swollen to twice its normal size, which obviously meant that something was still seriously wrong. I went to the emergency room and had my vitals taken. Everything was fine except that I still had a low-grade fever, but it was clear from everything else that I had some sort of skin or tissue infection for which I desperately needed medical attention. I spent the whole night at the hospital, and was seen by a GP, an infectious disease specialist, and a couple of other relevant doctors. Thankfully, the diagnosis was cellulitis of the skin and shallow tissues of my foot and lower leg, and I did not have any sort of bone infection, blood poisoning, or flesh-eating disease to contend with. Moreover, the antibiotics that they gave me – first through an IV system and then orally – were able to help me beat back the infection after a few weeks, and, as I was well enough to work and not contagious when it was time to begin my training, my employer allowed me to work while wearing a portable IV system and medical slippers for my swollen foot. Unfortunately, the illness had sapped away any motivation that I had built up for healthy eating and jogging, and over the next couple of years, the weight came back with a vengeance: I am currently 246 pounds, though I was over 250 less than two weeks ago and I am no longer drinking pop or eating in excess. It's much easier to give a damn and to be frustrated by a body that cannot keep of with the rest of you when you are awake and no longer suffering in more fundamental ways.

 

 

Circling back to the question of my ceaseless exhaustion, while I had no idea what was wrong with me, by that point it had become obvious that I needed medical attention, so in February of 2015 I went for a physical at a local clinic (I still do not have a family doctor, sadly) and described my symptoms, and he wisely referred me to a sleep therapist.

 

A few weeks later, I got a call from a sleep clinic to schedule an appointment, and in May of 2015, I went for a sleep-study. A few days before my sleep study: two very odd things happened to me. First, I was mugged in broad daylight in a place where lots of cameras would have been able to see my assailants. They stole my expensive smartphone, gave me a black eye, and damaged my glasses. Luckily, they were not interested in my wallet or in any of my identity cards or other personal documents. Second, on the very next day, I joined this huge online poker tournament on a whim, finished 3rd among over 2000, and win enough money to purchase another fancy smartphone. What a wonderful turnabout!

 

Anyways, on to the sleep study we go!

 

I went to this clinic and was giving a small but comfortable bedroom where my sleep study would take place. The nurse gave me a few very basic cognitive and sensory tests that I failed miserably, and immediately, I had a bunch of sensors attached to my body and some sort of sleeping mask applied to my face. I passed out very quickly and slept without interruption till 6 AM, having the most refreshing sleep that I had had in years.

 

That morning, the doctor diagnosed me with severe obstructive sleep apnea and informed me that I had stopped breathing over 100 times an hour while I was sleeping. To give you some perspective on just how sick I was, the threshold for a “severe” classification is 30 breathing interruptions per hour, the worst cases hit about about 120 or so, and this article -- https://www.theguard...lth.sleepapnoea – states that a British sufferer with 90 interruptions per hour was estimated to get an average of 14 minutes of sleep per night before he began his therapy.

In any event, I was given a trial prescription for CPAP therapy, given a list of respiratory therapists who would be able to see me, and left to suffer for another week or so until I could get an appointment. Upon seeing my therapist, an incredibly attractive young woman from the other side of the country, I was given a trial CPAP machine and purchased a $400 mask, and, with that, I began a path to what I would hope would be a better, more restful life.

 

Unfortunately, fate had other dirty tricks in store for me and my darkest days were still ahead....



#3 rapunzel2

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Posted 20 November 2016 - 11:48 PM

wow what a story!!! 14 minutes sleep per night with 90 interruptions. I wonder how you stayed alive during this time!!!! waiting for the continuation of the story!


in 2002- cipramil for half a year, ended it uneventfully. in 2006 - citalopram for half a year, ended in horrific state, ditched the drugs CT. 2006-2008 not feeling well but drug free. in 2008 prozac 20mg + quetiapine 25mg. 2009 tried to stop, ended up in hole after couple of months, started zoloft. 2009-2011 zoloft 50mg. went to 25mg in 2011 summer, it resulted in half a year horrible suffering. reinstated, changed drugs, nothing happened. by 2012 beginning suddenly felt great and CT meds. after 4 months came suddenly most horrible human suffering that's possible. started tapering slowly, GFCF diet and Hardy Nutritionals vitamins in 2013 summer. 

current medications: 1) fluoxetine and quetiapine since Aug 2012; 2) Daily Essential Nutrients by Hardy Nutritionals 10 capsules / since May 2013 + omega3; 3) Gluten-free-casein-free diet since june 2013; 4) free form amino acid complex 3 capsules 5) milk thistle 6) niacin 1500mg

25. april'13 fluoxetine 40mg -> 36mg (10%); 25. may'13 fluoxetine 36mg -> 32mg (1 month inbetween, 11%); 4. july'13 fluoxetine 32mg-> 28mg (5,5 weeks, 13%); 27. july'13 quetiapine 50 -> 45mg (10%); 15. aug'13 fluoxetine 28mg -> 24mg (6 weeks, 14%); 29. sept'13 quetiapine 45 -> 40mg (1,5 months, 11%); 14. oct'13 quetiapine 40mg -> 35mg (2 weeks, 13%); 16. oct'13 quetiapine 35mg -> 40mg; 17. oct'13 fluoxetine 24mg -> 22 mg (8%); 4. feb’14 fluoxetine 22mg -> 21mg (3,5 months hold inbetween, 5% cut); 21. feb'14 fluoxetine 21mg -> 20,5mg (2,5 weeks, 2,4% cut); 27 feb'14 fluoxetine 20,5mg -> 20mg (1 week, 2,4% cut); 30 mar'14 fluoxetine 20mg -> 19,5mg (4,5 weeks, 2,4% cut); 17 may'14 quetiapine 40mg -> 31mg (22% cut); 31 may'14 fluoxetine 19,5mg -> 17,56mg (9,9%); 13 july'14 quetiapine 31mg -> 25mg (19% cut); 19 july'14 quetiapine 25mg -> 18, 75mg (25% cut, 6 days); 28. july'14 quetiapine 18,75mg -> 22mg (-15%); 9. aug'14 fluoxetine 17,52mg -> 17,12mg (2,3% cut, 10 weeks, over 2 months); 19. aug'14 back to 17,52mg due to bad withdrawal symptoms; 20. oct'14 fluoxetine 17,52 -> 17,2mg (1,8% cut); 28. nov'14 fluoxetine 17,2 -> 15,6 (9,8%); 9. feb’15 fluoxetine 15,6 -> 14,4 (7,7%); 3. may’15 quetiapine 22mg -> 19mg (-14%); 27. may’15 fluoxetine 14,4mg -> 12,6mg (-12,5%, 1,8mg); 2. july’15 fluoxetine 12,6mg -> 10,6mg (15,9%, 2mg); 26. oct'15 fluoxetine 10,6mg - 9mg (15%, 1,6mg); 18. jan'16 quetiapine 18mg -> 15mg (17%); 16. mar'16 fluoxetine 9mg -> 7,4mg (18%); 22.may'16 fluoxetine 7,4mg -> 6mg (19%); 19.sept'16 quetiapine 12,5 -> 11,25 (10%); 26. sept'16 quetiapine 11,25 -> 10,25 (9%), 3 oct'16 quetiapine 10,25 -> 9,25 (10%); 10 oc'16 quetiapine 9,25-> 8,25mg (11%), 14 nov'16 quetiapine 8,25 -> 7,25 (12%); 9 Jan'17 fluoxetine 6mg -> 5,8mg (3%): 18 jan fluoxetine 5,8mg -> 5,6mg (3%); 6 feb fluoxetine 5,6mg -> 5,4mg (4%); 19 feb fluoxetine 5,4mg -> 5,2mg (4%); 5 mar fluox 5,2 -> 5,0 (4%). 

 


#4 Altostrata

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Posted 21 November 2016 - 01:37 PM

Congratulations, RisperidoneHell. Your earlier Introductions topic is here  ☼ RisperidoneHell: User name says it all :-(

 

Thanks so much for coming back to tell us you're doing well.

 

How long were you taking Risperidone? How did you go off it? How long did the withdrawal syndrome last? Did anything help relieve it?


This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

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#5 jmncrr

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Posted 21 November 2016 - 01:50 PM

Great story and agree with Altostrata with the questions posted. I would like to know also what withdrawal symptoms you had?


Been taking paroxetine 20 mg for 20+ years for depression. Taking 300 mg of wellbutrin since October 2015 for adhd and depression. Take fish oil, calcium, and a multivitamin. Started taking risperidone late January 2015 3mg for a misdiagnoses of bipolar. Started tapering risperidone late July 2016. As of late September tapered down to 2mg at 5% a week off current dose. Oct 21/2016 1.58 mg Nov 21/2016 1.26mg No withdrawals so far.

 


#6 RisperidoneHell

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Posted 21 November 2016 - 09:09 PM

To be honest, I switched from risperidone to Latuda in late October of last year and I had the same problems on it.

 

I was then on a cocktail of abilify (25 mg), wellbutrin (150 mg xr), and lithium (1200 mg) for a few months that was not as bad but still not what I wanted for myself.

 

I've been med free since early June, and it's hard to tell what was lingering depression/Cotard's/delusions of reference and what was actually withdrawl, but there doesn't seem to be anything in particularly. I'd like my sleep to be less interrupted, but when you're obese and have severe sleep apnea, not even CPAP can fix everything. That should get better as I drop the weight.



#7 RisperidoneHell

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Posted 21 November 2016 - 09:11 PM

Here's an exchange between myself, "Dave", and a friend that I spoke with for the first time in at least 2 years: "Angela"
 
hey


Hey Dave how's it going?

 
Great. You?

Not to bad at all  whatchya up to these days
 

Just trying to rebuild everything now that I know who I am and the truth about all that's happened to me.
 

Oh?

The bulk of my cognitive, social, and emotional impairments had actually been caused by undiagnosed sleep apnea. I got CPAP therapy for it in early last year, I was so overwhelmed by the change to my mind and body that I developed CPAP-induced manic-psychosis, was hospitalized for a few weeks and placed on meds that left me with no motivation, no energy, no libido, and a constant oppressive boredom that fueled this set of delusions that had me convinced that I had died and was in Hell.

 

Oh my goodness Dave

 

I was hospitalized a second time, diagnosed with manic-bipolar, couldn't come out of depression no matter what I did, quite the meds cold turkey nearly 6 months ago, have been gradually feeling better, and now I've gained back all of my cognition from the CPAP therapy without any of the mania, delusions, or paranoia that had come with it last time.

 

Thats great! Quite a scary adventure but im relieved to hear you are feeling better

 

Essentially, I went crazy because I was unprepared for the changes that recovering from sleep apnea would create on my body and my mind.

 

Well of course who would when you have so much dramatic change all at once

 

Now I realize the condition had kept me caged and impaired since I was very young, and it was when it got so bad that it goes me my girlfriend and nearly cost me my career that I asked a doctor about and got referred to a clinic. I was getting the equivalent to less than 14 minutes of sleep a night at my worse, and it had been there undiagnosed for most of my life. When I was diagnosed, I was having 100 breathing interruptions per hour while I slept and waking up constantly throughout the night. 30 is considered severe and 120 is about as bad as it can get.
 
And I had to figure it all out on my own because nobody knew how the treat the mental health problems that I had developed after starting my therapy.

The good news is that I drink a lot less, I've not done drugs in over a year, and the experience has left me far less petty and prone to getting angry over stupid things.


I can speak extemporaneously in both English and French with minimal effort and I am able to write elaborate political rhetoric in seconds. It's pretty ******* sweet.

 

Wow Dave the personal growth you have acheived is incredible!
Way to climb that mountain and crush it!
I giving you a big giant hug!

 
 

Perhaps, but I still need some time. The dramatic change that this is has made to my cognition, to my mental and emotional well-being, and to my prospects and expectations for my life is a lot to come to grips with. I have to relearn who I am, what I am capable of, when to restrain myself and when to unleash, and how to relate to people and to the world around me given the extent to which I've changed.

 

*hugs*

 

You will get there, dont rush it! You may lose some people as you go, you will have people who surprise you and new people will come into your life but first things first just do you. Figure you out. Determine what is next and go after that

 

Right. My family is not entirely confident in the narrative that I've come up with it (reasonable), but things are going incredibly well at work, my new boss is also a good friend of mine going back the past 3 years, we spent like 40 minutes talking about all this stuff yesterday, and she's got my back and has seen a lot of the same things that I see.
 

Sometimes it's hard to just gear down and get through the day-to-day stuff when I constantly have this feeling as though I can transform the world and everything around me via sheer willpower. I know that's bullsh*t and that I have to build up myself before anything like that is even remotely plausible, but it's hard not to get caught up in the dreams sometimes.

 

Have you put your dreams to work? Sometimes it helps taking little steps towards them to tame the screaming urge

 

Professionally, I still want more time to know that this is all real to assess where I want to go with my career. Personally, I need to concentrate on dropping weight and getting my house in order, both materially and metaphorically. I have more radical goals, but having them taken seriously and becoming achievable will be contingent on my achieving what I need to personally and professionally and on my being able to build the right networks over time.

 

Well it sounds like you have a healthy plan. So continue down that path. The clearer tbings become for you the easier things will be come

 

Yeah, I'm definitely at my sharpest right now when I don't let myself get consumed by the big stuff and just let things develop stone by stone. I'm nearly 250 pounds and I'm 5'4', so that'll take some patience to address, though I'm a few pounds lighter than I had been last week.


Edited by scallywag, 22 November 2016 - 09:26 AM.
formatting to clarify who said what






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