Meds & Recent Hospitalisation 2020

 

If you aren't familiar with schizoaffective disorder or what it means for a person to live with it, I addressed most of that stuff in my first 3-4 years worth of posting on this blog (2010-13).  Most of my posts are there.

More recently I've undergone a medication makeover : my new psychiatrist wanted me to come off Lithium (which I've been on since 2008), so I followed his instructions and weaned off it from May 2020 - to June 2020.  I ended up manic then psychotic and had a 4 week stay in a public psych ward as an involuntary.  Turns out I need to be on Lithium, despite the damaging side effects it has on my thyroid and kidneys.

My old medication chart was :

- Epilim (mood stabiliser) 1000mg;

- Lithium (mood stabiliser) 875mg;

- Clonazapam (anti-anxiety) 1mg;

- Edronax (antidepressant) 16mg;

- Deralin (blood pressure) 40mg;

- Alodorm (sleeping pill) 5mg;

- Seroquel (anxiety) 225mg;

- Eutrosiq (Hashimoto's) 150mcg;

- Metformin (Diabetes 2) 1000mg.

7 Psych meds!!

The psych meds were changed during the 4 weeks in hospital over June/July 2020 to;

- Epilim 1000mg;

- Lithium 500mg;

- Amisulphride (antipsychotic) 500mg;

- Seroquel 150mg.

Quite a reduction!!

I experienced voices in hospital for the first time in a concentrated manner : I wasn't aware they were happening until I "got well" so to speak.  Overnight after 3 weeks they stopped, only to reappear one afternoon when I was ragged and tired and in need of a seroquel PRN (as needed).  

I "heard" the real voices of people in the dining room but they were saying scathing, derogatory things about me, eg : one of the kitchen staff was hissing (about me) "she's a princess, this one, she thinks the world falls at her feet!".  Various negative loud cacophony of voices all saying nasty things about me and making me feel unsafe; I had my bags packed one night and was adamant that I needed to leave because my life was in mortal danger (due to the scathing criticism of what the voices were apparently saying).  It was horrible.  

I was lucky to only have to experience it for a few weeks; I can't imagine others with more pervasive psychotic illness who endure such voices all their waking hours, or at least for much of it.  It renders you helpless and totally skews your idea of reality.  I think it would take a trained eye to pick up that it's happening; someone would need to ask the sufferer a carefully thought out set of questions.  I'm just glad the Amisulphride took hold with the help of Seroquel.  

A side effect of the amisulphride is that my appetite is less along with having restless legs; this resulted in me dancing (sometimes literally) around the hospital ward and doing laps of the outdoor courtyard.  The net result was my wasted leg muscles from the Hashimoto's disease became strengthened and I regained some long lost stamina and co-ordination.  I ended up losing 7kg in 4 weeks, which was also due to the strict no-sugar diabetic hospital diet.  I've kept up the no sugar diet since being discharged (mostly) and have kept the weight off without doing much exercise. 

Overall being hospitalised turned out to be a positive experience for me in terms of having a meds shakeup (got off the addictive meds like clonazapam & alodorm) and diet improved as well as getting me physically moving.  It's like having a factory reset.  My mood is still great because, let's face it, I went into mania (me and a guy in hospital, this guy Aaron, we used to crack up laughing all the time over nothing).  The mania led to psychosis (as it always does with me if I reach a certain level of mania); my new doctor wasn't to know that being without Lithium would lead to such mania.  I've only experienced being on too much antidepressant as being a reason why I go manic/psychotic, so it was new to me too.

Whooshka!! There went a few years!!!! 2017-2020 Summary;

 Ok, so it's been a few YEARS since I posted.  Let me explain;

        - I contracted Hashimoto's disease in 2017/18 (autoimmune disease affecting thyroid);

        - Being on Lithium is mostly what made my Thyroid malfunction;

        - This affected my movement (loss of strength in legs/muscle strength);

        - It affected my mood (depression on top of depression);

        - I stopped the few going out things I was doing (eg : AA) and isolated more;

        - My doctor changed my meds because I was getting anxious (put me on Seroquel);

        - During a hospital admission I Stopped Smoking (May 2018) and commenced Vaping w/Nic

            (NB: I Have been Smoke Free since May 2018....Vaping is amazing; truly the way out of the 

            Tobacco Prison...I couldn't recommend it highly enough; after 30 years of tobacco; no more                         cough);

        - With saved smoking money and increased Seroquel appetite I overdid Uber Eats 2019;

        - Nov 2019 was diagnosed with Type 2 Diabetes (admitted to hospital w/blood sugar of 19.6);

Meanwhile during all this, my old PDRSS support worker got me onto the NDIS; I applied in early 2018 and was accepted.  It took quite a bit of paperwork.

The first year of NDIS was frustrating because I was agency-managed, the key element being all service providers had to be NDIS approved, and there weren't enough businesses in my area that had been accredited to get me what I needed.

The second year (2019/2020) I changed support co-ordination and was plan managed which was a lot better, and I started to get services I needed.

Now in my third year (2020-) I am getting the hang of it and things are going great so far; within the limitations of lockdown.  It has helped to have an ethical and highly skilled Support Co-ordinator to help me get the supports that I need, for instance now I have a psychosocial OT who helps me quantify my living goals and habits so that I can see how and by how much I can improve.  I also have an exercise physiologist who is like a degree-qualified personal trainer/dietitian/psychologist : whatever, he is the bomb.  I see him twice a week and he puts me through my paces (exercises while we talk).  Additionally I get a housecleaner and gardener and home delivered meals.

You may wonder why I qualify for such help : when you have (1) significant mood swings, (2) a track record of really bad self-care, (3) significant side effects from medication (eg: Hashimoto's & Diabetes) and (4) nobody in terms of friends or family who can offer practical help and (5) an illness which is permanent, although it fluctuates in severity and symptoms; it precludes me from regular work, socialising and a lifestyle which most people can navigate independently - All these things and more - it's a much better way of giving someone like me a leg up and hopefully developing long-lost habits and behaviors which will improve my quality of life.

It helps me feel like life is worth living again. 

Getting a support worker : April 2016

I've been fortunate enough to have been assigned a number of outreach workers for over a decade.  These professionals come from a variety of backgrounds (usually mental heath or social work).  They've differed in strengths and weaknesses; the best ones are usually intuitive and have good memories for what you tell them about yourself.  They come to your home either weekly or fortnightly, initially just to chat and get to know you and build up rapport.  They then go about helping you set and achieve goals, like self-care and managing your affairs.  The downside is because they are all government funded their services are available usually only for 12 months or so.  That's why I've had close to a dozen workers in around 15 years.

You are given a single worker at any given time, and the demand for them is fierce, so there's often a waiting list of several months.  I waited 5 months for my current worker, a twenty-something young woman called Maddi.  We've met three times thus far.  I don't feel rapport with her at all.

I know I should be grateful to get any sort of help (especially because it's free), but honestly I am finding her very formulaic and impersonal.  Two days ago she came to my house for a visit and I was not in a good way; very low mood and hazy.  She kept rattling off questions about my goals and I refused to play ball, giving monotone answers like "s'pose", "yeh", "nuh", "dunno".  I was waiting for her to address my mood but she ignored it, and left after 15 minutes.

Now you might say I was being a bitch, but I genuinely was struggling for words that day and wasn't up for her line of questioning.  The fact that she just took off didn't impress me either.  I had hoped she might just ask me how I had been, or how I was feeling that day.  Instead it was straight to the pre-arranged agenda, which pissed me off.  So I blocked her.

It appears that this is one of Maddi's first jobs (she told me she used to work for Centrelink).  Maddi has a psychology degree, so she's no dolly.  I've had many more workers who were more gifted and experienced than Maddi, so I could be judging her harshly.  It's just a pain in the arse to have to break in a green worker; to guide them as much as they guide you.

It's still early days, I've only met her 3 times.  But my gut says don't put up with shit and don't put up with someone who is out of their depth.  I can always request another worker, but over the Xmas period there'd be a wait.  Probably a few more months.

I know I began this post as if it's a privilege to get a worker; and it is to an extent, it's not a right.  It's just that when they are inadequate it is very frustrating.

Meds, moods and foul weather

Update:  Well I was wrong about Latuda; it's an anti-psychotic, not a mood stabiliser.  So when I went into hospital in June to do the swap, it was Saphris that was removed, not Epilim.  Since then I've done another meds swap; this time at home for an anti-depressant called Edronax, which supposed to put you off smoking.  The Lexapro was substituted this time.

I had one superb week on my new anti depressant; then a nosedive.  So the latest telephone instruction from my PDoc is to double the second anti-d (Brintellix) and if no improvement then an extra half tablet of the Edronax.  No major side-effects from the Edronax other than a bit of disrupted sleep and lowered appetite.  I've lost 2 kilos!

Have to be wary of mania as always.  Nothing like a good dose of anti-d to send me rocketing.

The weather hasn't helped my mood; Spring in Melbourne was more like a mild winter, save for a couple of hot days.  The average temperature has been 17 degrees Celsius, often feeling colder due to wind chill.  We also had a colder than average Autumn, so it feels like we haven't had warm weather since March.  Too long ago!!!!  Surely December and the advent of summer will see some sunny days?

Smoking reduction making me depressed: can't lift anti-depressant or I'll go MANIC and psychotic

Sigh.  What a difference 3 weeks can make: yes, I have been successful in continuing to reduce smoking down to about 16 a day, but my mood has slumped majorly.  My psychiatrist has maintained that cigarettes act as a mild anti-depressant all along and now I see his point.

I saw my psychiatrist last week and he is interested in trying a new mood stabiliser on me: Latuda to replace Epilim.  He said Latuda is weight-neutral and also has an anti-depressant component to it which might be a safe way to raise my anti-depressant levels.

For those who haven't read previously, ever since I swapped from Zyprexa (I put on 30 kilos) as an anti-psychotic to Saphris (weight neutral) in January 2013, I have struggled with low mood.  When my psychiatrist did the hospital-based swapover I had a major manic and psychotic episode and have tried minimal levels of Pristiq, Lexapro and Brintellix since.  The levels have to be minimal because the Saphris isn't as sedating as Zyprexa and I react to "normal" anti-depressant" levels while on Saphris by going manic and psychotic.

The net result is that due to low levels of anti-d I have experienced no lift in mood for any sustained period.  Maybe feeling ok, even happy for a week maybe then BOOM back down again.

Like this weekend:  I put a small wager on a couple of football teams to win, and they did.  I doubled my money.  I withdrew the bulk of it to safely be back in my bank account and didn't feel elation or happiness.  I felt relief.  Now I can afford to get my dog clipped.  Just deadened emotions.

For anyone else out there who goes through depression regularly, I feel for you.  I wouldn't wish it upon anyone.  It's like the rest of the world is participating and you're encouraged to, told to, quizzed as to why you are on the sidelines.....people want to help you but they just don't get it.  Hopefully I can stick fat with reducing the smokes and maybe there'll be a hospital stay soon to jump onto Latuda.

Sleeping better despite an Indian Summer In Melbourne for March 2016

Life has improved in the last month; I am starting to get in the habit of being asleep by midnight or 11pm.  This has made a big difference.  More energy and improved mood.

I've also improved my diet; no more meal replacement shakes, only real food. This has helped my energy levels as well.

As a result I am starting to tackle the housework bit by bit, which also lifts my mood; both a sense of achievement and pride.  I've got a long way to go but at least I've started.  My psychologist suggested I attempt it a room at a time, even if it's only a few minutes when I can muster it.  So, for instance, I wiped 3 cupboards in the kitchen the other day.  There's about 12 to go, and it might seem slack not doing it all at once, but that's all my energy can manage some days.

The other significant thing is that I'm quitting smoking again, only this time I'm doing it with the guidance of a health psychologist using Nicotine Replacement Therapy.  I've been wearing a patch for almost 4 weeks now, and have reduced from about 30-35 cigs a day to about 20 and now down to 15 since last Friday.  I have the Nicorette mouth spray as backup for cravings but haven't used it yet.

Some people believe it is unsafe to wear a patch and smoke at the same time; that's not true; you can't overdose from nicotine.  You're more likely to have a heart attack from chain smoking than using a patch and smoking simultaneously.

I've noticed my mood dip a bit since Thursday; my psychiatrist has warned me that cigarettes act as a mild type of antidepressant and that people with mood disorders can be susceptible to feeling down as they reduce or quit.  He's given me some samples of Brintellix 10's in case I need to use them but of course I have to ring him first to get the green light to take them.  There's always the chance of me going manic if I take the Brintellix 10's along with Brintellix 20's and Lexapro 10's.

So overall things are better than last time I wrote but a few hurdles have to be leapt before I'm in the home straight.

I've set myself mid-May as my quit smoking date; I smoke roll-your-own tobacco as it is cheaper (the average packet of 25 cigarettes in Australia costs $25; the government tax the shit out of it to try to get people to quit; it's been pretty effective; I would no longer dream of smoking at an outdoor cafe due to the grief you get from other diners).  Anyhoo, I am reducing each fortnight by one pouch of tobacco (50 cigarettes).  So I've gone down from 25 to 21 and will go down to 17 then 14 then 10 then 7 then 4 then quit.  I'm managing under 20 ok the past few days so hopefully it's all good.

I need help; life is not good at all. 2015

I have worked out that I have been clinically depressed for almost 3 years now.

I haven't cleaned most of my house in all that time.  This means the cheap linoleum floor in my kitchen makes a sticky sound when I walk across it.  There are daddy-long-legs cobwebs everywhere.  The light switches have grime all over them, as do handles everywhere.  The kitchen cupboards are stained with brown streaks of dried liquid such as milk which I've spilled and now it has turned brown.  My bathroom is a cesspit of mould.  You get the picture: Addams-Family house.

Then there's the garden: tall weeds everywhere.  I paid a man to mow the long grass recently.  All the plants need pruning desperately.

You'd think I'd have woken up to myself long ago and demanded help from my psychiatrist with my meds.   He has tried me on 3 different anti-depressants since January 2013.  They haven't worked.  It all lies with me being on the Saphris, the antipsychotic he put me on in January 2013.  Saphris is the key.

In 2012 I was drinking heavily, and was on Zyprexa.  Aside from the drinking I was functioning better than I am now, except the Zyprexa had caused me to gain 15 kilos (which I could ill-afford).  My psychiatrist offered me a deal: an anti-psychotic that didn't make me hungry in exchange for me quitting the booze.  I said ok, and haven't drunk since Xmas day 2012.

When I was in hospital switching from Zyprexa to Sapphris in January 2013, I had a manic and psychotic episode.  My doctor later explained that the Saphris didn't have the sedative qualities  that the Zyprexa did so as a result I had to be on a slightly lower dose of anti-depressant.  I am highly sensitive to having too much anti-depressant, despite being on Lithium 1000mg; Epilim 1500 mg and Saphris 25 mg.  Not even 10mg Lexapro and 20mg of Brintellix has helped.  This has seen my mood dive since March 2013 when the last of the mania wore off.

I accept that I can't "demand" an increase in anti-depressant from my psychiatrist; he calls the shots.  But my life has become worse and worse.  I am not coping.  Sometimes I think about overdosing on pills, but I know I can't.  But this is hell.