Lithium

I have been on lithium for a couple of years.  Compared to other drugs it has been surprisingly good.  I have been on most of the SSRIs, and they definitely affect me more.  Everyone is different though.  I wish I had taken detailed notes about all the side effects and problems I have had with each drug so that I could remember why they are not right for me.  Maybe my doc has that.  I think the general concern about lithium is that it will cause a numbing of emotions and that someone might overhear when someone whispers “lithium” at the pharmacy.

When I first went on Lithium my moods were probably a lot more muted and a lot less sharp.  How else can I explain that?  When I felt something before lithium it would often pierce every little pore with a needle sharp, attention grabbing obsession.  Now that feeling is not as prominent.  Instead, the mood more slides over me like jello, and only certain strong emotions stick into my pores.  When I feel a negative mood now, it is only in my eye cavities, temples, nose and front outer ear.  I know this sounds off to someone that does not have bipolar.  It is not totally a physical sensation, but some aspects of my mood changes have felt physical, especially now that I have been on lithium a while and feel a negative mood.  I can sit in my mood longer than before without the emotion jumping out of my body so instantaneously.  I simmer instead of steaming like a kettle.

I have a couple criticisms of lithium.  The side effect of weight gain is super serious, life altering and extremely painful for me.  The other is that my levels are a bit inconsistent, perhaps to the climate where I live and the inconsistent water intake, and I have to get my blood taken regularly.

Becoming overweight is not all due to lithium, but it does not help that lithium has this side effect and seems to make the fat stick to me.  My doctor explains that my BMI (body mass index) is now at a dangerous place for heart disease, diabetes, osteoarthritis, etc., but due to the ups and downs I still experience in my moods, my weight fluctuation is like the biggest yo-yo diet of all time.  I talked previously about recently developing binge eating disorder (BED), too.  I cannot move like I used to, my skin feels tight, my clothes are ill fitting, I feel gross in my skin, my sex life is non-existent and I genuinely want to die because of this.  I used to be about a size 10 to a 14.  Now I barely recognize what I have become.  Instead of just having the dieting challenges most people do like a lack of motivation and time, my odds are a nauseating mess.  I have to contend with the challenges of illnesses (bipolar II and BED) where the disease AND the cure (lithium, Nardil, an MAOI) increase my likelihood of obesity.  To quantify this challenge, my depression and/or extreme bingeing can cause the rapid weight gain of 20+ pounds or weight loss of 5 to 6 pounds in a week or two.  Most of the causes are excessive exercising, excessive eating, excessive sleeping, no sleeping, excessive working, and forgetfulness to eat, drink or take meds.

My lithium was at .4 around 3 weeks ago, which was the last time I was feeling suicidal.  My next blood test was a .7.  My doctor added an extra dose of lithium to get me to .9 next week if all goes well.  He said I may experience side effects.  I am pretty blase about side effects these days.  My skin is getting as hard as a tree trunk when it comes to some of that.  My last boss told me I was not strong.  If only she fucking knew how much strength, determination, vaginal fortitude and resilience it takes to live with my illness she might be less closed-minded and one dimensional about her world view.  Bipolar causes me to expand my understanding of humans and the unseen universe.  I pity her limits and ignorance.

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Posted in Health, Meds

The Loony Bin – Locked Up & Shocked Up

So this is something that generally freaks people out.  That is understandable.  It freaks me out, too.  Going to hospital and having ECT (electroconvulsive or shock therapy) was like a freaky-good horror movie that you hate watching but cannot turn your head.  I am purposely writing minuscule details about hospital and ECT to get it out of my system and hopefully give more info to anyone out there that needs it to make decisions about their own or their loved one’s care.  P.S. I use words like, “loony,” because I’m reclaiming it.  I think people that by and large have a stigmatized illness, attend hospital and get ECT are often experts at hiding illness and often acting more “normal” than most people.  I know I have played that game for years.  I choose to get the right help these days even if people think I’m batshit crazy.  That’s their issue.

I was at the depths of the human experience a couple years ago.  My memory is a bit vague and shoddy, but I will share what I remember.  I was working full time and a full-time partner and parent to a young child for a few months with only little waves of ebbs and flows to my mood for months.  I exercised, ate pretty well, spent 1.5 hours getting ready in the mornings, kept up with friends and generally was unaffected by illness.  I think I was on a low dose of Seroquel and Lithium at that time.  I gradually started feeling a little low so the dose was increased.  Once I was on more meds I felt slow, foggy and like my ears were not working.  It was not treating my bipolar II well despite it being the most recommended drug for bipolar II (to my knowledge, at least).

My normal weekly psychiatrist visit increased to 2 times a week due to my worsening depression. I had to take off of work for a couple hours for that, and it soon changed to the whole day.  My depression worsened to the point I could not stand up without extreme effort, and my partner had to call my work in partnership with my doctor’s advice that I needed extended leave.  I stared at the wall during waking hours and slept about 20 hours a day.  Showering was impossible.  Sitting up was impossible.  Walking to the toilet took me about 1 hour to psych myself up to the point I almost wet myself.   I do not have food related memories.  The worse symptom is that I became mute.  I was trapped in a numb trance surrounded by thick commercial-grade foam where breathing was nearly non-existent. Death was all I wanted but even if I had a gun in my hand I would not have had the strength to lift it to my head.

My doctor suggested a private hospital, a private room and ECT.  My room was large.  There was no TV, but the shower and bed were nice.  I think I spent about week in bed.  They brought food to me and I had one lovely nurse who had the kindest and most non-judgmental eyes.  I think she probably helped me recover more than anything throughout my stay.  I do not remember eating at that point.

I woke up about a week later.  They started making me walk about 20 steps to get my drugs from the drug closet.  Within a day or two, I was strongly encouraged to go get my meals.  It was weird seeing the people in there.  My fellow patients’ attributes are forever sealed in my memory more than any other memory on this planet.  It is a weird and chilling but somewhat comfortable phenomenon.  I noticed every detail, expression and movement.  I felt as though I was inside a video game and that I needed to dodge other patients.  I went to one group in the 4 weeks I was there.  It was about CBT or social rhythym therapy.  I cannot remember much except the do-gooder patient that was trying to impress everyone with her self awareness.

I did not talk to another human while in hospital except for those caring for me and the family that visited.  None of my closest friends knew about my brain fry or even that I had depression until I disclosed it to them months after leaving hospital.  I was too ashamed. I still have not disclosed to some of my most immediate family members and many friends because of that.  It is too complicated with my family because their dense understanding of mental illness is too swollen in stigma and probably either self denial or self preservation since bipolar runs in genetic material like a reckless steam train out of control.  Now I am less ashamed of myself and more aware of the real-life consequences of disclosure.  I’ll talk about my genetic and family history stuff some other time.  I could write books about real-life consequences of disclosure so I am sure that will come up for me at some point.

TRIGGER WARNING, SUICIDE: So in full disclosure, one of the things that gave me the shits and panic with my hospitalization is that the person staying in the room next to me completed suicide.  I was in my room and heard the nurse yell a code out to other nurses.  Everyone ran panicked.  CPR, etc. Patient was wheeled out covered head to toe by a sheet.  This was obviously something disturbing to witness even if I were well, but it had an effect on my feelings of safety and recovery.

Soon my “shock the fuck out of my brain therapy” began.  Please pardon my French.  They woke me up at about 4:30 am.  No food.  I had to go to this holding space with other patients and sit on ugly wingback chairs with sweaty hand stains that were last upholstered circa 1994.  I felt like a dazed and unknowing cow before it feels the burn of branding or even the electric shock of the abattoir.  We could be seen by anyone was awake at that hour so even in the hospital it felt embarrassing to me.  They would call my name and buzz me into a corridor like those cold white halls of a hospital.  I could see other patients passed out in an adjoining room.  I had to hop up on a hospital bed, and say hello to the same nurse with a long brown ponytail, my crazy shock doc (said with all the love one has for a mad scientist) and the anesthetist.  It smelled like operating room.  They would talk about daily news while they put this tight rubber strap with double belt holes around my head.  It was cold but felt similar to the way the tourniquet does when they take blood from your arm.  They put thick gel goo all throughout my long hair with electrodes hooked to it.  The anesthetist would give me a shot (or an IV, I can’t remember), and my doctor would still be talking about elephants in Zimbabwe or something and sleep would zap me.  [Just so you know,  I think they also used Ketamine somewhere, but do not quote me on that.  It is something I need to find out because my memory is a bit lapsed in that area.]

When I woke, my jaw would be SOOO sore for days to the point it felt like I had been beaten by someone holding bricks.  Nonetheless, I would sit up in a recliner and eat the hospital breakfast they served.  Dry toast with super cold unspreadable butter, corn flakes, stewed prunes.  Uuugh.  I had to sit there 90 minutes or so and was cold and needed a blanket.  My brain felt the way it feels when you are really drunk without the feelings of euphoria.  Things were confusing and memories only existed in the time and place I was present.  I had gel glue mushed in my hair as a tell-tell sign to everyone else in hospital that I had ECT.  Many days I was not strong enough to shower.   I think I had ECT 15 times in my month long hospital stay and as an outpatient for about two additional weeks where relatives brought me back to the hospital.

I felt about 82% better, but not like, “OMG!! I’m healed Jesus, I’m healed!!”  My memory has been affected, but I do not really notice it because I do not remember what I do not remember, if that makes sense.  I look at pictures of my child, and it’s like, “Oh, I don’t remember taking those photos.”  I find that can happen in normal life anyway, too.  However, I have noticed other gaps in my longer term memory that do not make sense.  It is as though my memory has taken all the marshmallows spread throughout Lucky Charms cereal.  It’s just not as good without the colorful bits.

Okay, as for the long term result, I think ECT lasted about 3 months.  It turns out that I’m largely treatment resistant.  For me, I would give ECT 1.5 stars out of 5.  The reason I would only give it 1.5 stars is because of the trauma I feel around the experience.  It did not last long enough to pay off for me.

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Posted in Health, Medical

Famous Folks Fighting It – Stephen Fry, Robbie Williams?

There’s a documentary out there that is an oldie but goodie where Stephen Fry (famous in the UK) explains his experience  of diagnosis, feelings and behavior with bipolar I.  What makes this 2 hour documentary wild is that he interviews a lot of people that are totally “normal,” but struggle with bipolar.  There is some interesting empirical information around a the world’s largest research study in the world around bipolar.  Stephen covers pregnancy, brain activity, young people, stress, treatments, etc.  For example, it discusses how there’s a 60% risk of becoming extremely ill during pregnancy and childbirth if a woman already has bipolar.  A doctor explains how bipolar related suicide is the leading cause of death around childbirth in England.  No wonder I thought I was going to die during childbirth and pregnancy.  I often wonder if I experienced PTSD from that whole experience.  I was off any meds, only diagnosed with uni-polar depression at that point and had limited social supports.  Anyway, this documentary is entertaining and ideal to share with non-bipolar folks so they get a more realistic and less-freaked-out understanding of the disease.

Another thing is that whole career thing where incredible things then earth-shattering things happen.  I have been there a lot the past few years – promotions one day and unexplained job loss or my resignation the next.  My resume looks like Swiss cheese there are so many gaps in it over the past few years.  Workplaces have felt like powerful psychological abuse (and the toxicity of some of my former workplaces probably were), but I feel my illness certainly has a place somewhere in there.  Unfortunately, when workplaces started shutting down on me they did not want to give feedback on my performance or behavior.  I think some of that was bosses doing a Dr. Google diagnosis on me and potentially discrimination based, but I will never know.  I felt as though I was going into work and doing consistently really well.  I have been unemployed for about a month, and I think I have defined the criteria I need in a job to manage my illness.  These things include part time hours, brain engaging work, quiet environment about 80% of the time, normal hours, commute with minimal traffic, limited large group work (triggers me), steady workflow (no major projects), supportive supervisors and helping society and/or people (but not necessarily dealing with people directly).  Yeah, good luck to me finding all of that in one job.

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Posted in Resources

Bipolar II & Binge Eating Disorder (BED)

Okay party people, I binge eat.  Lots.  I can down the amount of calories normal people have over days and eat it in a 2o minutes.  It’s like food that is orgasmic for weeks then I eat so much and drain our bank account so far that I detest that food and move onto the next one.  Oh the psychological, physical and pleasure center layers that exist with this!  I can’t even begin to sort it.  I’m telling you this because in a few months I’m making a big decision.  I’ve tried a several weight loss plans, medically supported, too.  What happens is that when I go into a period of depression or a mixed episode that all my goodwill and ambition to lose goes out the window.  I hate the way my body feels.  Even my taste buds change.  Most of the time I love veggies, but when my buds change with the fluctuations in my mood, healthy foods that I normally love cause a gag reflex.

The drugs I take in case you are wondering are:

  • Lithium
  • Nardil (old school drug – has to be refrigered and weird diet – MAOI) – Many chemists don’t know what this is and have to special order it (refrigeration req’d)
  • Thyrozine (thyroid meds) (refrigeration req’d)
  • Immovane (sleep – sometimes works, sometimes doesn’t)
  • Adavan (only occasionally for severe anxiety)

This mix works pretty well for me.  I have gained 25 lbs (about 10 kilos) from my latest 2 weeks of bingeing.  It took me 8 weeks to lose that much.  The lithium causes weight gain, too. Doc mentioned a drug called Vyvance today.  The review on its site are AWESOME and HORRIBLE.  It’s like there’s no in between.  If I can take the drug, I would have to go off my Nardil because it’s an MAOI. I’d like to see if I can try it before I can go the surgical route, but I don’t know if it’s wise to get off of Nardil because it works well for me.

I’m going for another consult for weight loss surgery in a couple weeks.  I don’t know what the answer is, but I’m not happy with my weight.  I’m not happy with the feelings of being out of control with food.  I’m an addict.  No doubt.  I checked out a nonprofit place for eating disorders, but their waiting list is super long.  Once concern I have for the surgery is that I hear it can push you to depression because of the food deprivation and side effects like vomiting and having to eat tiny bites.  I’ll see what they say.  Toodles.

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Posted in Binge Eating, Meds

Why You, My Dear, Are Clueless

So, I have good old bipolar 2.  I was diagnosed about a year ago *for sure* but I’ve had other doctors suspect it or hit me with the diagnosis and other questionable diagnoses previously over the years when they were fresh out of McDonald’s U or when we built about as much trust as I have for a new mechanic telling calling me “Sweetie” and telling me I owe $3,000 for a part I can’t find on Google.  None of these docs really knew me – I tend to call BS on anyone making a diagnosis faster than it takes me to read an article in Psychology Today.  I have been harmed by professionals’ incompetencies over the years way more than I have been helped.  The doc I see now was conservative in his diagnosis, sent me for a second opinion and worked with me a year or two before he put me in that box.

If you don’t have “it” you probably do not have a clue.  I did not really get it until I had my 4th of 5th ECT (electro-convulsive therapy) where they shock the frittata out of your brain.  I’ll tell you more about that turning point sometime in the future. What I thought bipolar was is really based on a few things.  I had this roommate in college who seemed classic bipolar 1. Shopping sprees, sex – lots of sex, out all night, 3 day old dark eye-makeup rings style depression.  I also thought it was like Catherine Zeta-Jones, Kurt Cobain, the main character in Homeland or Ian on Shameless.  I thought they were crazy when I received the bipolar 2 diagnosis.  I am mostly nothing like the Hollywood version.

I do not know where I end and where the illness begins.  That’s important.  I had a relative tell me at about 5 years old that I’m very “pouty.”  I remember that comment like a pine cone in the foot. I did not ever feel pouty inside in the same way that you see a child look pouty.  I remember a click – a shift – a drop off a cliff.  Did I have it then?  I think I could have.  I am an introvert and what they call “moody,” but I think I used to be INCREDIBLE at hiding it.  As I have reached adulthood I care less about hiding my mood for others.  I feel moods INTENSELY like how immediate grief sits in each cell.  My mood changes can be triggered by not having my favorite item in the grocery store.  Other times, it would not bother me whatsoever.

I am delightfully inconsistent.  I had a *max* of 3 hours of sleep a night for a month (no naps).  Some nights I would not sleep at all.  I was not super driven, but I was steady in completing work I wanted to finish.  I KNEW I had to crash at some point, but I did not know what that meant for me.  I crashed.  I was suicidal, extremely irritable, angry, shaky in my legs, teary, unable to rest properly, lonely, agitated, unable to process logic, achy in my whole body, binge eating, and heard static sounds a lot.  Triggers came every 10 minutes instead of every few days.  I gained about 20 pounds in less than 2 weeks.

What I learned from my latest depressed episode I learned that hotlines generally make situations worse because workers/volunteers are not adequately trained or skilled.  Professing you are actively suicidal means a trip to the loony bin (I use that language to “take back” the stigma as a person with mental illness, not to increase it).  Confidentiality and record keeping is dicey.  Lying is not an effective to work through feelings of suicide.  A worker once told me I “was not bad enough” to be calling and hung up abruptly.  If he only knew….Similarly, mental health forums censor keywords like “depressed” and “suicide” so they cause me more angst because I cannot express myself accurately.  Crisis chat is similar to the phone but slower.  Pretty much I learned that it is a really, really bad idea to need acute care where I live.  I need to avoid getting that low again, if possible.  I must get help to take my meds correctly because I cannot do it on my own during those times.

What I did right  
One thing I did do right was telling my friends that I was unwell.  I told about 10 of them, and 2 or 3 were really there for me.  I know that my other friends were in spirit.  My partner is so loyal, and it pains me that I hurt him when I am unwell especially when thoughts of suicide hammer at my guts.  I do have a bit of energy when I am depressed (sometimes), and next time I need to give it to him.  He keeps everything going when I am unwell, and he emotionally supports me extensively.  I think it could impact him less if I can still do chores that help keep the household going.

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Posted in Actions, Meds