My Doctor is a Hoser

Cover of "Strange Brew"

Cover of Strange Brew

I’m sure all of you Strange Brew fans know exactly what I’m talking about.  Yeah, my doctor is a Hoser.  Or, it’s actually my psychiatrist intern who is on the line.

Today was my first face-to-face with her after being released from the bin.  I knew she was going to be extremely nice and polite during our appointment.  During my last appointment with my NP, I had the distinct impression The Hoser was in big trouble for letting me get to a state where I had to be admitted.  Especially after my NP asked me in a very direct manner how I felt treatment with The Hoser was progressing and if I had any complaints.

Long story short – a 30 minute appointment turned into 45 because she tried to make coffee for herself twice but got completely sidetracked by the coffee pad for the Senseo, the ‘bloody’ computer system is so confusing she can’t figure out how many refills of what I have left, flipping through her agenda (twice!) for our next appointment resulted in the discovery this is April and not May, and we spent a full five minutes where she asked me how she should go about following up with my treatment.  (No, really.  What should I do??)

Maybe this is really 3B Treatment – three beers and it looks good.

So, yeah.  Today was almost a cluster.  Except for one thing.  The best part was when the appointment was over and I was walking down the hall, away from the mental health wing to the main hospital.  That’s when I decided she is a Hoser.  And I had to bite my tong very hard to keep from laughing out loud.  A woman walking away from the Looney Wing, laughing to herself, is never seen as OK.  And that last thought made me want to laugh even harder.

Hey, you gotta take those laughs wherever you can get ‘em, eh?

Back From The Bin

“Check in with yourself and communicate when you think you’re starting to slide into a depression, mania or mixed state.”   I even preach that gospel on this blog. Sure, OK.

It would have been great if I’d taken the advice.

I spent a week cooling my jets in the hospital because I let things go a bit too far and entered a mixed episode.  Thankfully, a change in medication that was ordered the week before the hospitalization started to work while I was in The Bin. It shortened my stay and I am home now, and on the mend.

For those who aren’t familiar with mixed episodes, it’s where elements of both depression and mania are present at the same time.  The Vivien Brand of Mixed Episode inevitably involves depression with severe agitation.  That means instead of sitting in a corner crying, I am not sleeping, running around doing everything with a heavy hand, being overly agitated with the universe and everything in it  and crying.

Working through one of these mixed states is pretty hellish.  Depression meets adrenaline!  Filters be damned!  Everything is worthless and annoying! And nothing is sacred. Nothing.

I’ve agonized over how I should write about this experience. Do I satirize the whole ordeal, using my razor-sharp Mixed Episode Witt that had my husband and son laughing when they would visit me?  Do I describe the impatience and generally unkind Mixed Episode Agitated Thoughts I had toward my Club Mental Health cohorts?  Do I tally and publish the number of times I sat in my room and cried ’cause there’s no putting the brakes on Mixed Tears?

Well, no.  That’s the point  These damn mixed episodes are just so jam-packed full of emotion and mayhem that I really can’t compose a meaningful post within my self-imposed 1000-1200 word limit.

American Hotel, Amsterdam

American Hotel, Amsterdam (Oh, the irony!)

But, I must say this.  For those keeping score, you will no doubt have noticed the hospitalization this past week took place in The Netherlands while my previous stay in 2010 took place in the US.  Both facilities were dedicated mental health hospitals for the not-so-insane.  The experience here in NL, however, was a night and day difference from what I experienced in the US.  Here, I wasn’t locked on a ward, I was given my own room and my shoelaces weren’t taken from me.  It was more along the lines of a hotel for crazy-ish people.  At no point did I feel my dignity was compromised or I wasn’t being respected as a person.  Maybe it was just the crap hospital I was admitted to in Kirkland, WA (Google away…) that handles their clientele inappropriately, but it’s been my overall experience mental health here is handled with much more dignity and grace and less stigma than I experienced across the pond.  So, in my next edition of ‘Round the World for the Mentally Ill, I will have to give The Netherlands accommodations more stars than those in The States.

I suppose when you are Bipolar I and didn’t treat the entire spectrum of the illness for over 20 years, extended periods of extreme stress are bound to put you in the hospital, if you don’t ask for help when it all starts to go bad.  OK, fine.  Lesson learned.

Mixed episodes, how I do not love thee.

The Energy Post

Nobody realizes that some people expend tremendous energy merely to be normal.
Albert Camus

Nobody realizes that some people must expend tremendous energy to merely appear normal.
Vivien Brunning

My bipolar disorder is a closely guarded secret.  I believe with all of my heart that I would not have been able to accomplish the professional achievements or maintained the personal relationships I have were I to wear my mental illness along with my heart on my sleeve   While my mother and my grandmother always taught me to be kind to the ‘slow’ person we would sometimes stop and chat with while walking on Park Avenue, I will never forget the looks and laughter from the meanies as they passed us by.  This was a valuable lesson for a six-year-old child.  It’s OK to be ‘different.’  There are kind people who will be compassionate towards you.  But, then there are those who will not.    

Empty fuel gage

Empty fuel gage (Photo credit: Janie B.)

Energy is a precious commodity when you are fighting with bipolar disorder.  Even when you’re not bipolar, keeping up a charade takes an enormous amount of energy.  When you live with mental illness and have made a conscious choice not to disclose your condition, the energy necessary to just  appear normal gets to be too much.  It takes a well orchestrated effort to not be forthcoming with friends, certain extended family members, employers, colleagues and, to some degree, even your own immediate family.  I think about this a lot.  The time, the energy, the orchestration necessary to make faux normalcy seem real. It’s exhausting.      

A lovely woman whose blog I follow published a very frank post. Soul Survivor gives us an account of what it’s like to be one of the Walking Wounded: Betrayal and Stigma.  If you haven’t already, please give it a read.  It eloquently describes what might happen when those of us with mental illness take that leap of faith and confide our condition in some people we thought we could trust.  Reading her post gave me pause and got me thinking: Which one of us may be in the worse position?  Which one of us has to expend more energy?  The one who is honest about their condition and bears rejection or the one who goes to great lengths to make sure they never have to?

Life has thrown my family and me a lot of curve balls in the recent past.  I am mentally fatigued.  I am physically exhausted.  I feel as if my façade of normalcy that was carefully constructed over the last two decades is cracking.  But a conscious choice to not disclose my condition means I can’t just yell to those in my immediate sphere, “Time out!  I’m bipolar, this is too much shit at once and I need to retreat and regroup!”  Not being able to do something sometimes uses up more energy that if you’d done anything at all.

The energy required to deal with mental illness is something I am sure every, single mentally ill person will tell you at times can be unbearable.  We have to constantly check in with ourselves to see how we are doing.  There’s medication, doctor appointments, counselor appointments, feelings of guilt and worthlessness over our disease or inability to fully participate in society, worries over funding our treatment, anxiety about how others perceive us, dealing with the fallout from mania, from depression, from letting ourselves slide too far if we don’t seek treatment the minute we start to feel bad.  This is by no means a complete list of energy sapping BS.  It’s just what my frazzled mind can come up with at this moment.

I’m still pondering Soul Survivor’s post.

Would my coming clean about being bipolar after all these years make things easier on myself?  Is it time to surrender?  Is it time to change the thing about my mental illness I spend the most energy on?  Perhaps my soul could feel a bit of peace if I could be honest when my friends ask how I’m feeling.  Maybe I would be less tired if I didn’t have to measure my words when describing what bouts of homesickness are really doing to me. Every once in a while I seriously consider surrender.  Every once in a while I would like to just come out of the mental health closet like my gay friends came out of theirs, and live a life of truth and relative happiness with who I am the way they do.

In my universe, disclosure of my illness puts a lot at stake. One particular circumstance could blow up in my face.  This issue has an expiration date so close I can almost taste it, but I refuse to tempt fate.  Patience, young Padawan.  Besides sanity, the biggest victim of mental illness is credibility. In order to retain any shred of professional credibility, my condition is best left in the shadows.  The vast majority of people in my industry would never take direction for the ‘serious’ stuff I work on if they knew it was coming from a bipolar.  A bipolar woman at that.  Sadly, gravity does not hold my universe together, lack of information does.

My Mom used to tell me that you can’t un-tell a secret.  As I sit here eating Xanax and typing, it’s becoming more and more obvious that still, even at this point in my life, preaching to the choir while high on benzos is still the best solution.  But, I’m finally in a position where I can whine about how tired of it all I am.  Progress.  Real progress.  Maybe I’ll consider The Closet Question again in another six months when things simmer down.  Right now, I’m off to answer a few e-mails and lie to a few friends in the US that I’m doing just fine.

Junk In, Junk Out

Bar graph chart

Bar graph chart (Photo credit: RambergMediaImages)

I’ve just returned from seeing my Nurse Practitioner, and told her I am most likely her worst patient, ever.  I have the free diary the practice gave me 1.5 years ago (in pristine condition). I have multiple applications installed on my smartphone. I’m beyond spreadsheet savvy. And God knows I have enough pads and pens floating around my house to choke a medium-sized pony.  There is no excuse why I do not track my moods.  But, I don’t.  If I’m depressed, I have zero motivation to do so.  If I’m stable or manic, I just don’t have time for that sh**.

 

After a bit more discussion on this stale topic, the conversation did take an unexpected turn.  Based on the description of how I’ve handled life in the six weeks since I last saw her, the NP believes I may be rapid cycling.

 

Just when I thought my disease couldn’t get any more interesting.

 

After I came home, I did what every good, IT nerd would do.  Scour the internet for  an Android smartphone mood tracking application that will allow multiple mood data points to be recorded for a single day.

 

After an hour of searching, I can find no such application.  Even those BP-ers out there who are rapid cyclers are endorsing apps that allow only one mood entry per day.

 

Well, junk in, junk out.  (The database aficionados know what I’m talking about.)  I need an app that’s pretty robust to determine if A) there is any ultra rapid cycling going on, and B) if the changes in mood are precipitated by certain types of events.

 

So, Dear Readers, I would love to hear from anyone who has found an Android smartphone app that allows the user to record their mood multiple times per day. Anyone?  Please say there is something.  Pen and paper is for wusses and I’m not up to devising an app from scratch (or begging my husband to create one).

 

Disinterested

Meh.

Well, that’s it.  Over and out.

Pug and Dodgeball

Pug and Dodgeball (Photo credit: zoomar)

Nah, I’ll write a bit more.  I’m in that weird place between being well and sliding into a depression.  I’m sad enough to cry at some sappy commercials but not enough to stay in bed for hours on end.  I make it to my therapy appointment, and she’s not suggesting adjusting my med, but she wants to move our next session up by one week.  I have ideas about what I want to do during the day but I just can’t seem to accomplish much.  There’s one word that keeps popping up over and over, too.  It’s ‘disinterested.’

Yeah, I might be headed for trouble, since even therapy isn’t helping right now – it’s acting like a trigger.

Being disinterested is just weird.  The best description I can give for non-Bipolar/non-depressed people is: I’ll start something – like revamping the look of my blog – with determination and a few great ideas.  Forty-five minutes later, the enthusiasm has evaporated and I’m just over it.  I don’t really care whether I follow through or not.  I know I’m doing it, too.  It’s kind of like a mini-rapid cycle that swings from mildly interested to disinterested, but without any destructive consequences.

This is my fourth attempt at a post in five days and I should just hit the Publish button.  Before I either become disinterested again or WordPress eats my words. (WP thought my post on Silver Linings Playbook was particularly scrummy.  Maybe if it wins an Academy Award I’ll be interested enough again to try to write another post.)

F.D.A. Requires Cuts to Dosages of Ambien and Other Sleep Drugs – NYTimes.com

I am thankful I live in The Netherlands where this madness hasn’t caught on. Seriously, those who need regular sleep meds to manage their condition, have a  talk with your doc about concerns you have with changing doses. It may be a good idea for some, but for others it could lead to using potent ‘chasers’ to get the same kick to get to sleep.

http://www.nytimes.com/2013/01/11/health/fda-requires-cuts-to-dosages-of-ambien-and-other-sleep-drugs.html?partner=rss&emc=rss∣=tw-nytimes&_r=0

Significant findings in largest ever study of bipolar affective disorder

One of the largest ever genetic replication studies of bipolar affective disorder has resulted in a significant discovery. It has found compelling evidence that the chromosome known as the 3p21.1 locus contains a common genetic risk for bipolar disorder, the PBRM1 gene. This means, from using a separate dataset of over 34,000 subjects, that there appears not to be an association of this same variant with schizophrenia.

Read the entire article here.

 

Is There Now Evidence Withdrawal From Antipsychotics Can Induce Psychosis?

For those who aren’t regular readers of my blog, I have been struggling to quit Abilify – a powerful antipsychotic medication – without success.  This has been a frightening, long and drawn out process for me, since the withdrawal symptoms I’ve experienced every time I have tried to quit this drug inevitably included a mild psychosis.  What is even more disconcerting is I never had any symptoms of psychosis until I started taking Abilify.

Last night I received a reply from a gentleman named Ed to one of my former posts: Abilify Withdrawal – Round 3: Abilify Wins and Antipsychotic Dependence. It is a very thoughtful piece from a person whose son had a psychotic break after trying to quit antipsychotic medication.  If you read Ed’s comment and follow the links he provided, it seems there is  now evidence  in a just published study that withdrawal from antipsychotics may lead to a psychotic episode.

Ed’s Comment to Abilify Withdrawal – Round 3: Abilify Wins and Antipsychotic Dependence:

I think that an answer can be found in the below post that I made on the Madinamerica site. Why isn’t the Mt Sinai report the “smoking gun”? Please see:http://www.sciencedaily.com/releases/2012/08/120813103250.htm. Although the intent of the research published in Nature Neuroscience was to make antipsychotics more effective or to suggest a new avenue for drug development, the implication of the findings is that chronic administration of antipsychotics creates a dopamine supersensitivity, and hence a vulnerability to psychosis on discontinuation, that is far more sinister and likely than anything I have seen to date. This report was released in August, but I don’t see the reaction I would have anticipated. If this report does not indicate that chronic administration of antipsychotics should never be used except in the most extreme of cases, I’m missing something. The findings, as I see them (I’m not a scientist) are that chronic administration of antipsychotics results in elevated HDAC2 which suppresses genetic expression of the mglu2 receptor. Glutamate dysfunction has long been suspected to be relevant to psychosis. Philip Seeman (the discoverer of D2), who is one of the most renowned researchers in pharmacology showed the dramatic effects of mglu2 activity in 2009: http://www.ncbi.nlm.nih.gov/pubmed/19084908. In short, the the under activity of mglu2 (by implication…Dr Seeman was using mice with no mglu2) results in dramatically greater d2 recepors in high state. This is dopamine supersensitivity or tardive psychosis. Am i missing something? Why am I not seeing a mushroom cloud? Didn’t the Mt Sinai group provide the smoking gun for what Robert Whitaker has been suggesting? In a nutshell, even if you were never psychotic, if you try to discontinue antipsychotics, you are at a high risk of becoming so? Please make this an issue.

After reading both links provided by Ed,  the latest research is very damning, indeed.

Although the smoke from this one is still filling my office, the biggest hurdle I see to this study being seen as a smoking gun is the need at present for a lot of inference to connect the dots. Those of us who have experienced the adverse effects of trying to quit antipsychotics, even laymen such as myself, won’t have much trouble seeing this study for what it potentially is. I think the rest of the world will need the lines drawn in the sand  more clearly before there is widespread acceptance that antipsychotic withdrawal can induce psychosis.

One of many reasons acceptance may be delayed is, from what I have seen, psychiatrists in general have blind faith in the efficacy and safety of antipsychotics for people suffering from Schizophrenia and Bipolar Disorder, and have the unfortunate tendency to prescribe this class of medication as a prophylactic instead of in response to a psychotic episode. Take my experience with the two psychiatrists currently handling my case (I have Bipolar I). When I arrived in their practice, I was already taking Abilify prescribed as a cautionary measure by my former psychiatrist. I was only three months into treatment and I was already having adverse effects. But the three psychiatrists all believed Abilify to be ‘safe’ and a great method to rely on to insure psychosis would never happen. No one had bothered to note that I had never so much as experienced even a mild psychosis in my life. It’s been an outright battle to get my current docs to understand just how bad for me taking Abilify has been. It has taken one year handling my case, my bringing them countless printouts of studies and patient experiences, three exams from my GP for weight gain related medical problems and three bouts with mild psychosis for them to understand just how detrimental to my mental and physical health this drug has been. Finally, my two lead psychiatrists have consulted with their colleagues, including the head of the Psychiatric Department of the affiliated hospital, about all the withdrawal problems I’ve had so far. The good news is I now have several psychiatrists in my corner who believe that this medication did, in fact, bring on a mild psychosis whenever I tried to stop taking it. The bad news? I am seen as an ‘isolated case.’

Where do I go from here? Well, there are only three viable options: staying on a very low dose of the med in perpetuity, titering down to an even more ridiculously low dose than 2.5mg every other day or quitting cold turkey and dealing with the fallout. The consensus between all the psychiatrists and myself is to choose the third option and go to bed until the withdrawal is complete, which could take one to 1.5 weeks. But, there is one, large caveat. My family and psychiatrists need to be on standby in case I once again enter a withdrawal psychosis.

The need for a number of people to continually monitor my behavior for the next two weeks and be on 24 x 7 standby in case I have a psychotic episode seems surreal. It makes me anxious because logically I should expect to go through another bout of withdrawal psychosis. And, it makes me angry I was administered this class of med in the first place. When I was placed on Abilify I was not in a full-blown mania, it was done as a protective measure and my then-treating psychiatrist assured me of its safety. Had I known there was any chance of actually becoming even mildly psychotic, well, I would never have swallowed the little, blue pill. I would have stayed in The Matrix of mood stabilizers only.

Throughout the last year, we have seen a wealth of articles spring up in some unlikely places calling out the misuse and abuse of antipsychotics. Once again this past week, an article ran in the New York Times.  A Call for Caution on Antipsychotic Drugs gave Dr. Richard Friedman (a professor of psychiatry at Weill Cornell Medical College) an arena to reach the layman population, underscore the seriousness of this class of medication and condemn casual use for conditions unapproved by the FDA (such as insomnia and use in children).  He is right, of course. But deeper conversation and action are sorely needed. In light of the new studies being published, the immediate follow-on conversation needs to be that psychosis may actually be brought on by the very class of medication invented to prevent it.

I only have experience with Abilify. I cannot speak for anyone else but myself.  Given my experience, and since the 5th and 6th most prescribed drugs in the US are antipsychotics, psychiatrists need to be more accepting of patient claims that these drugs are causing some very serious side-effects. There needs to be a cold, hard look by the psychiatric establishment at the tendency to use this powerful medication as a go-to prophylactic instead of a treatment for a well-defined, serious condition that already includes psychosis. Off-label use needs to stop. There is a dire need for further studies around psychosis associated with the use of antipsychotics. There needs to be more dialogue around and research into the entire class of antipsychotic drugs.

Ed and I have been corresponding outside of WordPress and we would love for this conversation to continue. Please feel free to post in the comments section and / or reblog this post.  

Abilify Withdrawal – Round 3: Abilify Wins and Antipsychotic Dependence

Abilify wins.

I put up a tough fight, but in the end, with serious commitments looming, I decided to surrender and let Abilify have this match.

Titering down very slowly and using the every-other-day method really did work. I was down to 2.5mg every other day and had great results doing this for two weeks.  It was at day five of being completely off the med when I noticed the subtle withdrawal signs creeping in, and by day seven I made the decision to go back to the 2.5mg every other day until the end of next month.

I don’t want to discourage anyone  who is also trying to remove this drug from their regimen.  Keep at it, and do it safely.  This is just a really tough nut to crack.  For me personally, there were two extremely stressful events that occurred just two days apart shortly after I stopped taking Abilify altogether.  It was just bad timing.

Or, was it?

Let’s get technical; what I was sliding into was  a mild psychosis.  Racing thoughts, mild paranoia, mild emotional changes, mild personality changes.  Even my husband noticed.  Wait – isn’t this why my dose of Abilify was increased late last winter?  Why, yes, it was.  So, after I stabilized on 2.5mg every other day again, I researched whether or not antipsychotic withdrawal can provoke psychosis.  Lo’ and behold, an abstract with the exact title appeared among my hits.

Evidence for a rapid onset psychosis (supersensitivity psychosis) following clozapine withdrawal was found and weaker evidence that this might occur with some other antipsychotic drugs. Some cases were reported in people without a psychiatric history. It appears that the psychosis may be a feature of drug withdrawal rather than the re-emergence of an underlying illness, at least in some patients. Meta-analyses of withdrawal studies have suggested that antipsychotic discontinuation may also increase the risk of relapse over and above the risk because of the underlying disorder, but not all individual studies show this effect. Mechanisms may relate to brain adaptations to long-term drug use but data are sparse.

Not conclusive but there’s enough there to make one wonder, especially since I am so sensitive to Abilify in the first place.

Of course the big question is whether what I experienced was indeed withdrawal or my manic-depression rearing its ugly head again.  I am, after all, Bipolar I.  Antipsychotics reduce the level of dopamine so when the drug is cut off the brain needs to get used to making it again.  Quite a tall order for a brain that can’t regulate itself in the first place.  So, were the symptoms of mild psychosis due to my brain trying to kickstart dopamine production again?  It turns out there is a set of three criteria to determine whether or not the symptoms experienced are a result of withdrawal:

  • [Keeping in mind the half-life of the drug] The problems begin immediately after reducing or stopping the drug. (If the original problem has been treated, it should be some time before the symptoms come back, if ever.)
  • The symptoms disappear if you go back on the drug, or raise the dose.
  • You are experiencing new symptoms as well as some of those that were a feature of your original condition (flu-like symptoms as well as depression, for instance).

[The above information came from a wonderful pamphlet from www.mind.org.uk called, 'Making sense of coming off psychiatric drugs.'  It is highly worth the read, covers many types of psychiatric drugs (not just antipsychotics) and can be downloaded as a PDF booklet for 1GBP here.]

Bingo.

Withdrawal.  Again.

As it turns out, the half-life of Abilify is 3.5 to 6 days, so the onset of my withdrawal symptoms completely fits the profile.  My symptoms disappeared after beginning the drug again and the personality changes and paranoia completely evaporated within 36 hours of my jumpstart, 5mg ‘superdose.’

Being armed with this knowledge makes me all the more anxious to cut antipsychotics out of my regimen entirely. I understand that should I be unable to manage mania or psychosis in the future I may have to return to using this class of drug.  The plan for now, however, is to return from an extended trip at the end of September, cut the 2.5mg dose every other day into even smaller slivers and take to my bed if necessary to quit Abilify once and for all.

The moral of the story is antipsychotics are very serious medications and should not be taken lightly.  Nor should the withdrawal some people experience.  Patients need to be their own advocates when making decisions regarding to take or not to take this class of medication and the Misuse and Abuse of Antipsychotics needs to be addressed.

As I said at the beginning of this post, if you’re reading this and trying to eliminate antipsychotics from your cocktail, do it smartly.  Consult with your physician, educate yourself about the drug you are taking, it’s half-life and the potential withdrawal symptoms.  Don’t rush.  And if it doesn’t turn out the way you hoped the first time around, don’t be afraid to surrender, regroup and try it again.