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Tardive dyskinesia and Jabba the Hutt

So recently in the last three weeks I’ve been making the duck face. Not for selfies. Not for fun. No… this has been a scary side effect of the meds.

I spoke to a friend who is a pharmacist about these weird involuntary movements that my mouth has been making on its own. My wife first noticed them at the end of our vacation and asked me to stop doing that. “Do what?” I asked her. “That!” She made a puckered lip duck face. I said in surprise, “I’m really not trying to make those faces.” Weird right?

Well time continued and another friend pointed it out to me. Now I was starting to become concerned. I looked up the side effects of my mood stabilizer and my antipsychotic. They both listed pursed/puckered lips as a side effect called tardive dyskinesia. And this side effect could be permanent if it continued too long. Fuck.

So I spoke with my friend who happens to be a pharmacist. He said that tardive dyskinesia is a potential side effect and that it indeed could be permanent. He recommended that I see my Dr ASAP.  So when I was able to, I went on a walk in to see my GP Dr Goodfellow at the clinic.

I told Dr Goodfellow what was happening. I mentioned that I did not want to be stuck with a duck face or look like Jabba the Hutt with my tongue/lips for the rest of my life.  His exact words: “Fuck. This sucks.” I know.  I was so stable when I take this combo of meds which frustrates the hell out of me. I had just gotten accustomed to taking meds and being ok with the idea of taking them. The idea of going off my meds and switching to something else made me nervous.  I’d have to go through a rocky period of adjusting to new dosages, new side effects and potential episodes of depression and mania before I found a new combination of meds to stabilize me. So we did some research and he prescribed me an anticonvulsant to add to the mix while decreasing the antipsychotic  (which he deems is the likely culprit for my Jabba the Hutt tongue and lip symptoms.) I asked if this combo would work. Dr Goodfellow said, “Well if I could read the future I’d know what Trump tweets while on the toilet every morning. ” I laughed. I love my GP’s good natured humour. I thanked him and off I went.

Today was the first dose of my new med added to my med cocktail so it’s too soon to tell if it’s working or not. I’ll keep you posted.

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Down in the dumps

So the past several days, I would say close to a week, I have been depressed. Not eh, my day sucks, I think I will eat chocolate, depressed. No, this started off with being tired and feeling heavily sedated from my usual dose of nighttime meds. Thinking it was that, I tapered off them a bit (my Dr says I can play with them as I move through mood cycles). I still had this nagging feeling of being darn right physically exhausted. I felt as if I had run a marathon, as soon as I had woken up and wished to go straight back to bed–ignoring the insistently positive dinging of my alarm clock. Then I realized… I think the black dog is back.

When I say black dog, I mean depression. The black dog has been a symbol for depression in my eyes for as long as I can remember. Depression is not new for me. This was not my first rodeo or tango with darkness and I know that it will not be my last.

I went through a period where I woke up, dragged my ass to work, yawned through meetings, slogged my way through work barely able to keep my eyes focused at some points during the day because I was so exhausted. During one of my evening shift days, during the day, I was laying in bed, feeling like I had the inability to physically move. My wife prodded me with some pokes, then began crying. I lay there, I felt like I was unable to comfort her, I began crying too. She said that I was not living. That I was wasting my life holed up in bed. I am almost 30 for God sakes. She asked me — no begged me to get up and go for a run or walk or do something to help with my mental health. We both had a good cry and I went out, forcing myself to a 30 minute run. Afterwards, I went to a relaxation yoga and ended up falling asleep for catnaps during the hour session. The yoga teacher did not seem to mind which was a relief. So tired..

Lets hope that this depressive cycle is on its way out soon. I have to say, I love dogs, but this black dog of mine is not welcome anymore. Time for it to leave.

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These last few manic days…

I had a “hangover” from taking extra Seroquel last night. I was in quite a hypomanic state. And once I realized it for what it was, it was too late– I was there.

It started out with my wife and our kids planning a vacation. I filled most of my prescriptions so I’d have enough of my antidepressant, my mood stabilizer, and my antipsychotic. Except that my mood stabilizer was $100.00 — by itself. This isn’t always a problem, except that we had already shelled out several hundreds of dollars for our vacation. So I asked the pharmacist if I still qualified for Plan G. In British Columbia Canada (I can’t vouch for other provinces), Plan G is available to people who are mentally ill and fall in a lower income bracket so their medications are fully covered. Apparently my Plan G had run out and I wasn’t covered. Fortunately, my benefits from work had kicked in and instead of paying $250.00 for 90 days of my mood stabilizer, I would ONLY have to pay $100. So there was that… I ended up telling the pharmacist that I would go to my Dr and come back with a Plan G form.

So I went on the vacation planning on taking the full amount that I normally took, which I did for several days. When I got back from vacation, I realized I wouldn’t have enough pills to make it to my Drs appointment. So, I started splitting them. Might I Just say now… and I may say it in the future… that this is a bad idea when you are mentally ill. Splitting pills when you have a tendency to go manic (because you have a flipping mood disorder) after cutting down a mood stabilizer and being on an antidepressant at the same time can spell disaster. To add to that thought, I also worked several evening shifts (that end at 11 pm), and then I had to switch back to working at 7 am. So I decided to cut back on my antipsychotic because I didn’t want to sleep past my alarm and be late for work and embarrass myself or get in trouble at work.

So let’s recap… (half)mood stabilizer + (less)antipsychotic/sleep aid + 5-6 hours sleep for several days = recipe for [hypo]mania!

Boy did I get hypomanic. I was posting inappropriate things on Facebook that were raising eyebrows… But the eyebrows were being raised with my wife, without me knowing until she called me on it. Yesterday, I started getting waves of euphoria emanating from my chest. I could see brighter, more intense colours. I rode the wave of euphoria and was belting out songs in the car. I felt so social. I texted random friends some weird messages. I wanted to go out and blow money on random things — but (you’ll be proud), I refrained.

I went to see my Dr (who I’ll nickname Goodfellow). I explained my situation to Dr Goodfellow about needing Plan G. He said that while he’d love to help me out, he couldn’t. He didn’t have any more samples for my mood stabilizer and I’d made too much income last year on my taxes to qualify for low income that the Plan G required for medications to be fully covered. He said I could increase my antipsychotic at bedtime to offset the mood stabilizer if I couldn’t afford it. So I thanked him anyway and off I went.

With my manic energy, I raced home and instead put my intense focus on gardening. I fixed the rock wall in our landscaped garden in the back yard. I pulled weeds. I even got one of the kids to help me pull weeds by one of our fruit trees.

Once I had dinner, things went downhill, I lost my focus and started fighting with my wife. I had likely been in denial that I was manic and needed extra Seroquel stat. I couldn’t help but crave that euphoria that I had from my misfiring brain chemistry that life had afforded me. Mentally ill or not- euphoria would be enticing to anyone. And I definitely love when euphoria comes around. The only thing is… it’s not real. I mean, it’s real for me in my reality, but it’s not feasible. Mania while it feels fantastic at times, cannot exist if one wants a stable life. So you tuck the tail between your legs, accept that you’re manic and have to take pills (that you pay for) to take it away with the trash.

I ended up sleeping really well. And in the morning, my hypomania was gone. I was craving my bed and I hit the snooze button — all things I do when I’m normal. When I’m manic I leap out of bed with vigor ready to start the day. Normal me does the opposite and would rather roll over unless someone poked me, enticing and coaxing me out of my cocoon of blankets with a strong cup of coffee.

After work today I made my way to the pharmacy to pick up my [ridiculously expensive] mood stabilizer.

Alas, mania cannot last. But, I enjoyed it for the short while. And of course apologized profusely for being a twat and denying it to my wife in the morning. For now, I’ll continue to ride the coaster and hope for more stability on the horizon.

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What is Bipolar disorder?

So what IS Bipolar disorder?

I’ll give you the clinical terms after I describe how I think of/experience Bipolar disorder.

To me, Bipolar disorder is a mood disorder classified by cycles of high energy/fast thoughts/euphoric/irritable moods …. as well as low energy/slow thinking/dark thoughts.

My experience of bipolar disorder is like wearing different shades of glasses.

Highs:

When I’m “high”, or manic… colours and lights are more intense. I’m everyone’s best friend (so I think). I’ll talk to anyone who will listen, Crack jokes to anyone who’s around.  I’ll be talking quite quickly and it can sometimes be hard to follow my train of thought because my thoughts are shooting like rapid fire all over the place. I get really impulsive and can do damage with my money, buying things we don’t need for the sake of buying something… I once bought $100s of dollars worth of art supplies in one go and thought that I was the latest Picasso.

When I’m hypomanic I have energy to do everything and end up thinking I can… but I mostly leave a house full of dozens of unfinished tasks which can be frustrating for me and my loved ones.

I can become paranoid when Manic, and this leads me to actually believing people are around to harm me, get me fired at work, steal my money etc.

I can also be irritable… the downside of irritable mania is rages at my family, drinking too much or getting in trouble (or almost getting in trouble at work..) My highs are hard for many people to spot as most people would assume I’m just in a REALLY great mood, asides from close relationships.

I’m not very sleepy and I can sleep 4-7 hours when Manic and feel fine with lots of energy to spare.

The Lows

The Lows or depressions of bipolar disorder is like wearing a set of glasses where everything is tinted black and white. Colours aren’t as bright, low energy makes my body feel heavy and Exhausted. The littlest tasks can make me feel like I’ve run a marathon. It’s that exhausting. My mood is crummy and I have felt suicidal in the past because I feel as if I have nothing to live for due to the chemicals misfiring in my brain. With medication my depressions are thankfully low to moderate and not severe anymore, so I cope with depression by being EXTRA tired and negative and thankfully not suicidal.

I can sleep 10-16 hours when I’m depressed. Depression for me mostly hits in the fall-winter peaking in November/December.

 

Now for the hum drum clinical found at NIMH:

http://www.nimh.nih.gov/health/topics/bipolar-disorder/index.shtml

Bipolar disorder, also known as manic-depressive illness, is a brain disorder that causes unusual shifts in mood, energy, activity levels, and the ability to carry out day-to-day tasks.There are four basic types of bipolar disorder; all of them involve clear changes in mood, energy, and activity levels. These moods range from periods of extremely “up,” elated, and energized behavior (known as manic episodes) to very sad, “down,” or hopeless periods (known as depressive episodes). Less severe manic periods are known as hypomanic episodes.

  • Bipolar I Disorder— defined by manic episodes that last at least 7 days, or by manic symptoms that are so severe that the person needs immediate hospital care. Usually, depressive episodes occur as well, typically lasting at least 2 weeks. Episodes of depression with mixed features (having depression and manic symptoms at the same time) are also possible.
  • Bipolar II Disorder— defined by a pattern of depressive episodes and hypomanic episodes, but not the full-blown manic episodes described above.
  • Cyclothymic Disorder (also called cyclothymia)— defined by numerous periods of hypomanic symptoms as well numerous periods of depressive symptoms lasting for at least 2 years (1 year in children and adolescents). However, the symptoms do not meet the diagnostic requirements for a hypomanic episode and a depressive episode.
  • Other Specified and Unspecified Bipolar and Related Disorders— defined by bipolar disorder symptoms that do not match the three categories listed above.

Signs and Symptoms

People with bipolar disorder experience periods of unusually intense emotion, changes in sleep patterns and activity levels, and unusual behaviors. These distinct periods are called “mood episodes.” Mood episodes are drastically different from the moods and behaviors that are typical for the person. Extreme changes in energy, activity, and sleep go along with mood episodes.

People having a manic episode may: People having a depressive episode may:
  • Feel very “up,” “high,” or elated
  • Have a lot of energy
  • Have increased activity levels
  • Feel “jumpy” or “wired”
  • Have trouble sleeping
  • Become more active than usual
  • Talk really fast about a lot of different things
  • Be agitated, irritable, or “touchy”
  • Feel like their thoughts are going very fast
  • Think they can do a lot of things at once
  • Do risky things, like spend a lot of money or have reckless sex
  • Feel very sad, down, empty, or hopeless
  • Have very little energy
  • Have decreased activity levels
  • Have trouble sleeping, they may sleep too little or too much
  • Feel like they can’t enjoy anything
  • Feel worried and empty
  • Have trouble concentrating
  • Forget things a lot
  • Eat too much or too little
  • Feel tired or “slowed down”
  • Think about death or suicide

Let me know if you have any questions or write your experiences.  I’ll write back.

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Hospitalization 1, part 1

Sometimes I keep journals. Both times that I’ve been hospitalized, I’ve kept journals.

Trigger warning: what you may read might be disturbing.

Hospital stay #1, part 1 (January 2016):

I couldn’t take it anymore. People were watching my house. There were whispers at work about my performance and people were trying to get me fired. I told my wife about this but she thinks I’m crazy, that I’m talking nonsense. I’m hearing voices calling my name, and random song lyrics when no music source can be found. It’s maddening.  

I broke.  Somewhere along the line, I shattered mentally. I’ve been clean from coke almost a month – I broke my sobriety on New years eve- and I have no one to blame but myself. I smoked weed occasionally to try to get myself to sleep.

I’ve been sleeping horribly. I sleep for long stretches of 10-14 hours but I wake in fits of panic every three hours or so. I can’t shake the feeling that I just need to sleep. Maybe the paranoia will wane.

It was January.  I had a day off work and was crying when she came home to find me losing my mind. I worried she was going to harm me. She informed me she was going to take me to hospital and that I could get better there. I couldn’t get a psychiatrist apt fast enough out patient. My wife phoned a good friend of ours, a retired nurse named Elle. Elle ended up taking me to a hospital outside our city- not the one that I work at…

Elle sat with me for a long time in a private waiting room outside emerg. Hours seemed to drag on like sand slowly eroding the pyramids. A nurse did my Intake and took all my information. I don’t recall what was sad, just things like “certified” , “stay here till a psychiatrist sees you” . Elle only left my side to get me food which I was grateful for. I was given an arm band and stamped certified. The Dr came in and prescribed some meds and left. Once I was given a bed, it was a hallway bed outside CDU. The nurses were watching me closely.

After Elle left, the nurses gave me curtains with wheels on them to give me semi privacy.  As soon as I had my little blue pill called zopiclone I was out. I don’t remember a whole lot. The first few days melded into one another. I was admitted on a Monday. Today I am told is Thursday.

 I feel waves of guilt. I can’t help it. My family counts on me to work hard and long to be the bread winner. My wife is off work because of health issues. Here I am losing my marbles.

Sometimes I think the nurses are here to poison me. I have a lot of allergies I listed when I was admitted. Corn. Peanuts.  Hazelnuts. Almonds. Seasonal allergies. And what do I find in my stir fry? Fucking corn.

They sit behind the desk laughing. At me. Nurse D and Nurse G seem nice… but can they be trusted? I told them about the corn and they seemed really apologetic but I don’t know if I can trust them. I was in the hallway for 3 nights with nothing but a cloth curtain protecting me from anyone.

I was given a psychiatrist. Dr Niceguy was very thorough. He prescribed me Prozac and Trazadone. The Trazadone knocked me on my ass and I ended up sleeping 16 hours. He lowered the dose. He said “I don’t want you sleeping all the time.”

My psych nurse friend at work, JC came to visit. He bought me a tea and the nurse said we could go outside as long as I promised to come back. We sat outside emerg on a bench and watched a young 20-something year old strip off his shirt and wave it like a lasso in the air. He ran down the hill. A team of nurses ran after him. “Don’t you be trying that,” JC said.

My wife and Kat came to visit layer with food and laughs. Kat’s roommate Elle is a retired nurse and very stubborn.  Elle’s son parties a lot. He apparently said “Nope, I’m surrounded by bitches. I’d be in hospital if I felt like that. Because bitches make you angry. And I’m surrounded by them.” I hadn’t laughed that hard in awhile. Harder than laughing at half naked-run-down-the-street-with-nurses-chasing-man.

The nurses kept trying to fuck with me. There were nuts in my dessert. I am allergic-hello! Hard to get better when people are trying to poison you…

Nurse D and Nurse G seemed nice. Nurse G got a little too close for comfort. She touched my arm and rubbed my shoulder. I wanted to crawl in a hole and hide.

Finally, today, I got moved to the psych ward. Where I was deemed I belonged. I’ve worked on psych wards before, but as an employee, I’ve always had a key card. Here I had nothing. I was on the other side of the locked unit doors and I had no key. The unit is old, with outdated colours on the walls. Scuffs on the walls. Low ceilings. Cracked paint at the door frames. Two padded rooms with metal toilets and mattresses on the floor.  I knew those were for code white/violent patients.  I shuddered.

First patient I met was Kris. He’s 26. States that the unit is shaped like a “q”. I guess he’s right. He says nurses chart on how guarded he is and how much pacing or staring he does.

I’m in room 121, bed A. My roommate is Kay. She’s 29 and very quiet.  She says she’s in for depression.

I think I’m going to go crazy in here. I’m not allowed to leave. I feel claustrophobic. Some guy named Larry keeps talking about babe’s that have big asses but nice faces.  His face clicks every few seconds.  I think it’s from his meds.

I’m not allowed my cell phone unless I get a day pass which has to be approved by a Dr, like Dr Niceguy. So I have novels I can’t focus on, an Xbox in the living area with shitty games and no exercise room except walking the unit or unless I decide to talk to the interesting characters I’m too paranoid to talk to. Great.

I just heard my name clear as day being called in the hallway. I rushed over and NO ONE was there. My brain… is broken? How do I fix this? ..every second ticks by slowly, painstakingly slow like someone tearing at a hang nail. I lay in my bed wishing for my night time meds… while hearing Larry talk to someone who wasn’t there outside my door. I have no music. I can’t focus on a novel. I am in pain.. this is pain. 

It was hard rereading that. It was even harder to write/share that. That’s the end of part 1. I’ll post part 2 another time.

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Seroquel, sugar and weight gain-arg!

So because of a recent manic episode/early psychotic symptoms that I experienced, my Dr increased my Seroquel dose. Seroquel/quetiapine is an antipsychotic medication that brings down mania, soothes psychotic symptoms and can act as an antidepressant for some. For me, it helps with all of the above.

So far I’ve gained 5lbs in the week and a half that I’ve been on the increased dosage! I just cannot stop eating… it’s not a matter of willpower here, because I’ve been trying to eat bell peppers, carrots, sweet fruits and protein to combat the intense sugar cravings. Yet I seem to still cave and fulfill my cravings. Yesterday I had McDonalds, pie for breakfast and sweets at work that a patient’s family brought in. UGH!

In the past I’ve been pretty good at satisfying my cravings appropriately and not giving into intense sugar cravings. But it seems Seroquel either shuts down my metabolism to that of a 50 year old menopausal woman, or I’m simply weak and I can’t combat the intense cravings. *sigh*

I brought this up to my wife, and she said, “NO. Do not stop taking your meds.” I hear her. When I’m unstable, I get pretty bad rages, and do some damage financially… which has put me in hot water in the past. So now I have to choose stability and just accept the weight gain for what it is. I have to start hitting the gym regularly. But I’ve been so busy trying to work my ass off to rectify the financial damage I’ve done while I was manic. It’s a catch 22 right now…

I have to see my dr again. He said he might prescribe Tegretol in order to combat with the intense cravings. He said I might lose weight on it, but the thought of taking ANOTHER medication brings it’s own frustrating. I’m already taking three different medications to control my bipolar cycles. I may have to take him up on it if this weight gain doesn’t stop though, or I won’t fit my clothes!

For now, I have to choose stability over possible weight gain and sugar cravings, which is frustrating. But it’s life.

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A little about me

I live in a city in beautiful British Columbia, Canada.

I am… a mother, daughter, sister and partner. I work in Healthcare at a hospital and I also do art and photography. I am artistically inclined and I would say, very creative.

I also happen to be gay, but this is not who I am, it happens to be one part of me.

In the past I have been diagnosed with… anxiety, depression, PTSD, ADHD, Borderline personality disorder, and you guessed it… Bipolar disorder (my latest diagnosis).

I haven’t always been mentally ill… at least not to the levels that I can become now when I’m unwell. I was always a sensitive, creative and kind dreamer. As a child, I wished everyone would always get along and I wished I could save the world from its brokenness. Lately I’ve had to save myself many times. I’ve fought addiction a few times (and won)- hey I’m still here aren’t I? 🙂

If you have any questions shoot them my way, I’ll do my best to answer.  That’s all for now.

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Stable… for now.

I would like to point out, that I am chemically stable, for now. What a relief. This past March… I stopped taking my meds consistently. Now, for someone with a brain chemistry that is out of whack, that is not good. It can tip the mood balance to either depression or [hypo]mania. I say [hypo]mania, because some people with Bipolar experience either hypomania or mania. Hypomania means little mania and is the only type of mania experienced by people with Bipolar 2 or Cyclothymia.

Back on topic, I experienced some sort of mania this past March… I came out of my usual winter depression, raring to go, to do things. My mind raced like a luxury car on the autobahn. I couldn’t concentrate on one thing at a time. I felt waves of euphoria bursting out my chest. I was belting out songs in the car and at work. I felt giddy… I felt TOO good. Until nights… when things would get on every last nerve and I exploded with rage. I started drinking and smoking pot.

The reason I stopped taking my meds was, I started self medicating with cannabis/weed and falling asleep on the couch most nights. Because I was sleeping well, I figured… “Guess I don’t need to take my Seroquel since I’m sleeping fine.” Big mistake. My counselor pointed out that I take Seroquel for more than one reason. I take it to balance my mood. It acts as an antipsychotic/mood stabilizer and antidepressant. By not taking it, I opened myself up to early signs of psychosis. I know this, because I’ve been psychotic before and it’s very unpleasant. (More on that later).

Thankfully my doctor increased my antipsychotic and added a dose for daytime to bring me down from the trees to ground me. So far it seems to be working.

So now, I’m taking an antidepressant, a mood stabilizer and an antipsychotic. Sometimes I look at the handful of three pills in the morning and shake my head. Then I shudder and remember how psychosis felt… and the rages that ensued on my part.

Stable is good. Even if it comes because I have to take three little pills in the morning and four at night.