Denial

Sometimes I go into huge episodes of denial concerning my bipolar illness.

I don't want to admit I have a disorder with which I have to cope for all of my life.  I want to believe that there is nothing amiss with my brain.  I want to believe everything will be fixed tomorrow.  I want to believe that any weirdness I exhibit and/or experience is simply a result of personality rather than a chemical/synapse anomaly.  I want to believe that I don't have radical mood swings, that I don't need medications to be a stable human being, that everyone has weeks of debilitating depression and then weeks of hyperactivity.  I don't want to write mood diaries, I don't want to self-talk, I don't want to be monitored by psychiatrists and psychologists, I don't want to know that scientific reports indicated that every cycle will only intensify over the previous cycle.  I don't want to believe it.  Any of it.

I am afraid of bipolar.

When I was first officiallly diagnosed with bipolar disorder it took me years to accept the fact that I had a psychological problem.  Crap, I wasn't just an asshole.  There was an organic underlying cause for my weirdness.  And the simple idea that I would need to take drugs, psychotropic drugs (!) for the rest of my life was overwhelming.  No, not me.  I'm just fine. I don't have a problem. I just need a few weeks of talk therapy then everything will be on track again.

Then came the big, giant, crash.  The crash that kept me out of work for months, the crash from which, after two and half years, my docs and I are still trying to find the right med cocktail for stabilization.  UGH! During the initial med trials I struggled with incredibly extreme cycles and side effects.  So . . . OF COURSE I didn't need the meds!  Right?  They were only making me crazy!  These drugs are making everything worse!  I'm dizzy, I'm barfing, I can't sleep, I'm sleeping too much, I'm catatonic! NO!  I'm not bipolar! 

The social stigma of bipolar disorder doesn't help.  Let's do some research on this.

According a (unidentified) polll in Ireland, "The majority of people with bipolar disorder believe that the public are unaware of and do not understand the condition. As a result, as many as one in four do not tell family or friends they have it for fear of social stigma . . . 71% believed that the public were unaware of and did not understand their illness. As a result, 26% did not tell family and friends.  35% had experienced some form of discrimination as a result of their condition." (http://www.irishhealth.com/article.html?id=7874).

And

"Stigma against the mentally ill is bad, and research suggests it is getting worse, says Patrick Corrigan, PsyD, professor of psychology at the Illinois Institute of Technology and director of the Chicago Consortium for Stigma Research. "Mental illness is still extremely stigmatized," he says, "thanks in part to television shows that portray this population as dangerous, in need of supervision, and/or wild and irresponsible. That is the public perception, despite evidence that they are no more dangerous than anyone else."" (http://www.health.com/health/condition-article/0,,20189155,00.html)

I get it, and yeah, I get it., too.  So, maybe that's the underlying root of my denial. And as a result, I think about my bipolar a lot.  And thinking about it ... that leads to another practice in search of balance.  How much should I think about my disorder?  How much should I monitor myself?  When should I attribute strange behavior as an affect of the disorder or simply an aspect of being a jerk (or an artist, or a deep thinker, or a sensitive person, or a competitive person, or a happy person, or a . . . ?  Where is the sane place of equilibrium wherein I stop worrying about myself yet also stop denying that I have a condition that needs constant care?

I'll find it someday. 

This Is Your Brain On Drugs

About seven weeks ago, I had a severe psychotic break.  But, I fortunately found a mental-health care team that promised some hope.  However, there were a lot of surprises and concerns that came along with this, and which are growing.

The first issue is that my diagnosis was elevated to Bipolar I-predominate manic, and currently psychotic.  And, that I had been in a predominately manic mixed-state for at least a couple of years.  Gee, who says life is a bore!

When I had the diagnosis of Bipolar II, it took me a couple of years to come to terms with it, and what it would mean for my future.  And, it took me about five years to become, what I thought was, stabilized.  But, even though I did accept it, I still thought that my life events and decisions were essentially a result of conscious decisions I had made, and that my “eccentric” behavior was simply part of my personality. 

But now, with the new and escalated diagnosis, I’m reeling.  Initially with this diagnosis, I had, and am still going through, all types of phases in dealing with this, both physically and emotionally. 

Emotionally, I am having a hard time accepting this.  I’m realizing that my entire life has been absolutely out of my control—I feel like the bipolar has robbed me of everything pleasant and productive that I could have had/achieved.  I can’t think of anything  in my life that has been authentic, except for art.  At least there’s art.  

But the incredible, unconscious spending sprees, misery I suffered in my teens, twenties, and thirties, all of the dangerous activities and events I blindly participated in, the self-medicating with street drugs, the terrible choice of friends (most of them), and not to mention the even worse choice of men, I now realize was all a result of being bipolar.  And, even though I was able to work in the arts, I turned down opportunities to work as an artist in favor of working in art museums (I did find satisfaction working in the  museum field, but always regretted that I never had the time nor headspace to create some spectacular artworks).   And, while on the topic of work, I have been fired from every job (including temporary clerical jobs) since 2000.  That’s a long time.  I had always attributed it to bad work situations, bad bosses, bad institutions, bad bosses . . . but never to my own behavior.  See, I thought I was managed.

And, now with the new diagnosis, my condition has reached the top level of Bipolar Disorder.  There is no higher diagnosis. This shatters and frightens me.  This is, to me, a giant slap telling me that my life is going to get much, much harder.  With every bipolar episode, there is no turning back.  This means that any subsequent episodes (depressive or manic) will be worse than any that went before.  After one episode, the next will be worse.  Then the one after that will be worse than the previous.  And so on, and so on, and so on.  I thought it was hard enough to begin with, and now I’m really having a hard time accepting that it’s much worse than I had thought.  I’m paralyzed by these feelings.

Physically, for the past two weeks,  I've been essentially unmedicated.  Well, not entirely unmedic­­ated, but medicated at the bare minimum (I’m still on the Lamictal).  This is wreaking havoc with my life.

 Vinnie Barbarino Gimme Drugs

https://www.youtube.com/watch?v=pHpGvRWakhY

 My first (new) Psychiatrist Immediately determined that the Cymbalta I had been on for years was actually making my condition worse, and that the Lamictal, that I thought was the wonder drug, was simply ineffective.  Great.  That day she started weaning me off of the Cymblta (oh, those horrible shock-waves are still lasting), and simultaneously  titrating me up on Geodon.   My team was very concerned with my psychosis (yeah, it was really bad), and their first priority was to bring the mania down.  So, the titration of the Geodon was hot and heavy:

Day One – 40mg

Day Two –40 mg

Day Two – 80 mg

Day Three – 120 mg

Day Three – 160 mg

Day Four 200 mg

Day Five and beyond – 240 mg.

My body couldn’t handle it.  By day four I was so disabled that I was stumbling as though drunk, sweating profusely, and having to crawl up the stairs.  And, crawling up the stairs, I had to take a break mid-way and lay down  to rest.  Even my cats were worried.  They were crawling on me, meowing, and licking me.  Scary.

Day four, with the major jump to 200 mg, I woke up in bed needing to vomit NOW.  I managed to make it to the toilet, but barely.  Scarier.

Day five, with the next radical jump in dosage, I woke up in bed projectile vomiting.  I consider myself lucky to be alive.  The rapid titration essentially knocked me out, and if I hadn’t woken up, I would have aspirated.  Overdose.  Terrifying.

I was taken off of the Geodon and put on Risperdal.  Yuk.  That only maintained the mixed-episode, and made me EXTREMELY angry and aggressive, shaking, and COLD.  So, I decided on my own to split the dosage and take it only at night.  Bad nightmares.  Really, really bad nightmares, and ongoing agitation, cold, shaking, irritability, and a ton of invasive thoughts and ruminating, and a dive into depression.  Hell, sheer Hell.

I phoned in and asked for a Benzo to reduce the anxiety just a little.  My kingdom for a Xanax!  Did I get a Benzo?  No.  Instead I was given Gabapentin.  Now, I have had issues with Gabapentin before.  A few years ago I had to go to the ER for uncontrollable and violent  shaking of my limbs and head.  After 16 hours being shuttled between Physical ER and Mental ER, I was dosed with Neurontin (Gabapentin).  It sent me into an extreme mania.  Now, the important thing to know here, is that my experience with Gabapentin is in my chart.  Why, oh, why did she give it to me?  Did she not consult the chart?

I knew it was a bad idea.  I knew it was the wrong prescription.   But I took it anyway.  And, sure enough, it sparked a mania.  I was up for four days.  But it wasn’t a “fun” mania.  I was shaking, anxious, and terrified about what was happening to me. And I was constantly cold (still).  And, of course, I soon crashed into a deep depression.

I went to visit the doc again.  And, as referenced in a previous post, she wanted to check me in to a Mental Health Residence.  “NO.” So, she decided that she was at a loss as to how to medicate/stabilize me, and that she couldn’t help me any further.  She handed me off to a Department of Health Services Community Mental Health organization.  Great, government care.  I took myself down to a lower dose of the Gabapentin, and took it only at night, but it was still giving me problems-I was sleeping, but still shaking and extremely anxious.  And, the depressive episode was becoming worse, and worse, and worse. And I was becoming more and more paranoid.  More Hell.

It took more than a week to meet with the intake process for the new team, and I didn’t get to meet with a Psychiatrist for a week.   Since he was going to be on vacation for two weeks, he decided to not start me on a new regime.   He did, however, prescribe Ativan 1 mg, daily as needed, to last until he returned.

I tried the Ativan . . . nothing.  So I started making calls.  First to the new team, explaining that the new doc had prescribed Ativan, but that it was ineffective, and to please prescribe something else to reduce the anxiety.  Nothing doing.  They don’t know me well enough, and the Psych is out, so no prescription.  Well, I went back on the phone and called the original team to ask for something.  Nope, I’m no longer in their care so they can’t prescribe anything.  “You should contact your new team”.  Grrrrrrrr.  So there I was, anxious, depressed, hopeless, and paranoid.  The case manager from the new team called, “How are you doing?”  “Awful, life is terrible.  I have no hope, and no faith” “Gee, that’s too bad, but hopefully there will be something to help you when the Psych returns.  Have a great day!!”  Have a great day?  Who is this person!!???

I had one more chance, slim, but a chance.  I called my general practitioner and explained what was happening.  He’s seen me for the last five years and agreed to double the Ativan dose and gave enough to last until the new Psych returns.  Now, I’m doped, stumbling, brain-dead, and moving further and further into the depression.  Just get me through the three more days until the new Psych comes back, and please let him have some good news.

Did I say frightened, yet?  There are not many drugs left for me to try.  I’ve been on the following, none of which worked:

·         Depakote -- Anticonvulsant

·         Lamictal – Anticonvulsant

·         Prozac --  SSRI

·         Celexa -- SSRI

·         Paxil -- SSRI

·         Propranalol – Beta Blocker (used for high blood pressure and tremors)

·         Cymbalta -- Serotonin-norepinephrine reuptake inhibitor

·         Abilify – Atypical antipsychotic

·         Geodon – Atypical antipsychotic

·         Risperdal – Atypical antipsychotic

·         Gabapentin – Gamma-aminobutyric acid

So, what’s left to try?  The Anticonvulsants, SSRIs, and SNRIs don’t seem to work, but I’ve still included them in the list of everything else I can find:

·         Seroquel – Atypical antipsychotic (I’ve heard sooo many bad things about Seroquel,  I really do not want to go there).

·         Latuda—Atypical antipsychotic (I’ve heard of this, and have heard good things.  But, it’s used as an anti-depressant.  Maybe it will figure in with whatever other med combinaion they decide to give me)

·         Saphris – Atypical antipsychotic

·         Vraylar – Atypical antipsychotic

·         Iloperidone – Atypical antipsychotic

·         Paliperidone – Atypical antipsychotic

·         Zyprexa –Atypical antipsychotic. 

·         Lithium – Miscellaneous antipsychotic (This is completely old-school medication and requires monthly blood checks.  I REALLY don't want to go to there)

·         Topamirate Systemic -- Anticonvulsant

·         Levetiracetam – Anticonvulsant

·         Symbyax – Anticonvulsant

·         Venlafaxine – Serotonin-norepinephrine reuptake inhibitor

·         Desvenlafaxine -- Serotonin-norepinephrine reuptake inhibitor

·         Sertaline – SSRI

·         Escitalpram – SSRI

·         Bubpropion – Antidepressant/Smoking Cessation

·         Clonodine ----Antiadrenergic agent, centrally acting

·         Verapamil – Calcium blocking agent/group IV antiarrhythmic

·         Armodafnil – CNS stimulant

·         Tiagabine – Gamma-aminobutyric acid reuptake inhibitor

There's not a hole or cave deep enough for me to crawl into and hide, and I’m afraid of my future.  Very, very frightened.

No, I won’t do it.  No way.  Absolutely not.  It’s just not going to happen.

Yesterday my P-Doc told me that she wanted me to enter a Mental Health Residence.  No.  I won’t do it.  No way.  Absolutely not.  It’s just not going to happen. 

Her reasoning was that because she has switched up my med combos three times in the last month, and none of the cocktails are working, she wants me under 24-hour surveillance so that other mental health care providers can watch me and observe how I react to a new med combo.

 

 Med Time

Now, at first this might make sense.  The residence houses, in addition to patients, a couple of live-in psychiatrists.  Hmmm, OK, there’s definitely an environment wherein I can be observed.  However, what percentage of my perceived behavior and reaction to new meds is actually based on my reaction to a strange environment?  Strange house, strange bed, strange food, strange bathroom, and strange crazy people who are, like me, doing their own crazy jive. And, furthermore, there wouldn’t be any of the personal comforts I have to keep myself stable (or at least try to become stable).  My hobbies, my cats, my gardens, my pillow and blanket--even my chicken noodle soup and saltine crackers! 

Just the act of taking a trip and being in a strange environment is stressful enough to trigger a psychotic break.  And, I’ve been directed to have no social interactions for a while.  So how would living in a strange environment, socially interacting with strangers in a very personal situation be conducive to stabilizing me?  This, I simply can’t understand no matter how hard I try.

The bottom line is No.  I won’t do it.  No way.  Absolutely not.  It’s just not going to happen.

What's in a Word

I've always had a robust vocabulary, and have found great pride in being able to access, in a split second, the right word for any particular occasion.  But, oftentimes a psychotic break, or a new med combo, puts a damper on everything and hinders my ability to "find my words".  When this happens, though, there is still the wonderful realm of bipolar-specific vocabulary.

There are words and phrases that simply roll off of the tongues of those with bipolar, and do so without requiring much thought or effort.  We know these words, they are a regular part of our day-to-day communications.  And, with this, it's like being a member of a secret society or club, whether or not one wants to.

Here's a short list of some of those special words/phrases:

• SSRI
• Shock Waves
• Hypomania
• Mania
• Mixed Episode
• Rapid Cycling
• Situational Depression
• Depressive/Manic Predominant
• Baseline
• P-Doc
• T-Doc
• Cognitive Remediation (well, Cognitive "Anything", reallly)
• DSM
• Psychosocial Function
• Euphoria
• Lassitude
• Equilibrium
• Mood Log
• Internal Critic
• Shame
• Guilt
• Burden

And, finally, a phrase undeniably familiar to anyone with Bipolar Disorder:

• "How is your mood today?" vs. "How's your day going today?"

Do you have any bipolar-specific words, phrases, descriptors?  I invite you to share with a comment, so we can get the most from our secret-club member benefits!

Rust Never Sleeps

Take it any way you want:

"Never underestimate the power of the underdog"
Neil Young's 1979 album with Crazy Horse
The philosophy in which artistic complacency is avoided

Devo's slogan for a Rustoleum advertising campaign

Or the scientific explanation that iron exposed to oxygen will not cease to oxidize

Whatever the case, I'm back.  And I'm back in full swing.  I've been living in a mixed episode for a couple of years, and it's now come to a head.  I didn't realize it was happening, it was evolving so slowly.  So, now I'm back with a T-Doc and a P-doc after having been without for five years--since leaving Texas.  (How many things am I grateful for in that last sentence? HA!)

Has my writing style changed?  Maybe, but I'm pretty sure my sense of humor and general view on life haven't.  What?  What's that?  My general view on life?  Well, that's something I don't really have a grip on at the moment.  My friends, I'm truly lost at this point in my life.  But, I'm working my way back . . . 

https://www.youtube.com/watch?v=4YSbGXNXfVg

So, welcome me back while I embark again on the path toward balance.  I'm still rusting along, and I hope to keep on blogging and simultaneously become stable.  I have a bunch of tales, anecdotes, observations, ponderings, and findings to pass along to you.  

Let's see what happens.

Well, I've had it with Abilify (vilify).  It makes me fat and bloated, and gives me such terrible night sweats that I rarely get more than four hours of sleep before the bedclothes and mattress are soaked.  So, what's a bipolar girl to do?  I'm taking myself off of it. Mostly, so I can get a decent night's sleep.

Now, I'm a little nervous about this.  I first began taking Abilify (vilify) about three years ago on an "as needed" basis.  And that worked just fine.  My doc (at the time) prescribed that when I felt a depressive swing coming on I was to pop an Abilify (vilify) each day for a couple of days so as to keep the trough from becoming too low.

And it worked, for a while.  Then, a big depression hit me, and a simple few days of Abilify (vilify) didn't do the trick.  I took a dose each day for a few days, but then the depression persisted.  I tried this over and over and finally gave in and began taking it every day.  This was three months ago and I've been taking it daily ever since.  And I hate it.

So, this should be an easy issue to resolve, right?  I should simply go to my psychiatrist and explain the problem and start working with her on a med adjustment.  The only problem is that I don't currently have a psychiatrist.  I'm unemployed.  I get my meds from a non-profit clinic and don't have the funds to see a psychiatrist (talk about walking a treacherous line).  So, I'm on my own, and this scares me.

I've been searching the internet for various information regarding self-weaning and each and every article starts with something like, "The first step is to consult your doctor before discontuing Abilify" (vilify).  Great, well, I already knew that.  So, first step avoided, on to the next step.

eHow tells me that in Step 2, "The tapering should be done over the course of weeks--not days--and you should proceed as slowly and cautiously as you possibly can. Quitting the medicine cold turkey will cause psychosis and will alter your emotional state drastically. You may shake, be fearful, faint, suffer worsening psychosis or suffer a nervous breakdown by trying to wean yourself off of Abilify all at once or too quickly."

Wonderful.  Well, I already knew that, too.

Step 3 tells me, "Slowly begin to decrease the amount of Abilify you take. It may be better if you taper off your dosage every week. It is possible to taper down your dosages over the course of a few days, but generally this is not a safe process and withdrawal symptoms may be severe."

Check, I already knew that as well.

In Step 4 I'm advised that, "Once you have weaned yourself, you may begin taking new medicine to alleviate symptoms of your disorder. It is crucial that you do not start taking Abilify again.

Uh, does that mean I shouldn't go back to the regular routine of taking it as needed?  Crap, wish I could afford a psychiatrist.  OK, hmmmm, I guess I'll move forward . . .

Step 5:  "Do not be surprised if withdrawal symptoms continue even after you are no longer taking Abilify. General withdrawal symptoms include difficulty in thinking, concentrating and conversing; suicidal thoughts; emotional instability; shaking; mild to severe anxiety; panic attacks and changes in abstract thinking processes."

Gee, sounds like I run the risk of being bipolar.  Whatever.

So, my friends, I'm going to start by taking a half dose daily for a week (if I can manage to get those nasty little pills cut into halves), and then move on to taking a half dose every other day for two weeks, and then stop.

Wish me luck.

Don't Sweat the Small Stuff

Over the last few months I've been experience nights sweats.  And these sweats are major.  They're full-blown soak the sheets, blanket and pillow case sweats.  When they wake me up I can feel droplets of sweat dripping down my back.  It feels like bugs crawling on my skin.  I've had to change the sheets many nights because there was simply not a square inch of the bed that was dry.

This goes beyond annoying, it disrupts my sleep--what precious bit of it I can get, thank you ever so much agitation and hypomania.

So, I've decided to hunt around and see if people with bipolar disorder have a higher incidence of night sweats.  I did a lot of searching on the internet and really didn't find any reports of the disorder causing night sweats.  But, I did find a lot of reports of common medications used to treat bipolar disorder as causing night sweats.

One report I found was particularly informative.  eHealthMe.com conducted a study of night sweats experienced by people with bipolar disorder.  The results were based on data from the U.S. Food and Drug Administration.

The data showed that 62.54% of the subjects studied were women (and thus, 35.48% men).  And, the highest incidence occurred in people between 40 and 49 years of age (43.86%.  22.81% for the 30-39 group; 17.54% for the 50-59 group; 10.53% for the 60+ group).

What was interesting to me was the link between night sweats and medications.  Here's a list of the medications and the percentage of night-sweaters using them.

Lamictal -- 37.93%
Seroquel -- 32.76%
Depakote -- 25.86%
Aspirin -- 13.79%
Geodon -- 13.79%
Abilify -- 13.79%
Zyprexa -- 12.07%
Klonopin -- 12.07%
Zoloft -- 10.34%
Risperdal -- 10.34%

Well, that suggests something about my particular situation.  I've taken Cymbalta and Lamictal for years, and would take Abilify when I was able to sense depression coming on.  For the past few months, though, I've had to adjust my meds and have been taking the Abilify daily.  Hmmmmm, interesting.  I think I've found the culprit.  Apparently, for me, the Lamictal doesn't cause the sweats, but the combination of Abilify and Lamictal does.

Well, I can't exactly go off of the Abilify, so I guess I'll just have to sweat it out.