Seroquel Update

So I’ve been on seroquel for a couple of weeks now and this is what I’ve noticed.

The main thing I was worried about was increased appetite and weight gain but to counteract that we increased my Topamax to 50mg twice a day.  That seems to have worked to a point.  Most times of the day I don’t feel increased hunger but at meal times I find I’m feeling less satisfied after I eat.  I just use some CBT and tell myself that I won’t feel satisfied no matter how much I eat and the urge passes after a while.  So far I haven’t gained any weight, even though it’s been only two weeks.

I’ve taken seroquel before and it knocked me for six every time.  I would be out straight away and wake up groggy fourteen hours later and this was just on 25mg.  I’m taking 50 now, and it takes me a little while to get to sleep and I tend to sleep for eleven hours without much hangover effect.

Normally I take my regular tablets at about six thirty like I was before and take the seroquel at eight thirty and get into bed straight after.  The first few days on it I was on my phone in bed then I had a night where I didn’t sleep at all despite taking it so I had to come to terms with the fact that I had some shitty sleep hygiene so now I just get into bed and turn the lights off without doing anything to stimulate myself

It seems that 50mg is a good dose of seroquel for me, and I seem to be getting rest on it for now.  I only hope this lasts.

I Need Some Sleep

I’ve just been to see my doctor and we’ve made some major changes because I’ve stopped sleeping.  After all the trouble we went through to get me onto zeldox I hoped that regime would have lasted longer but nope.

The whole thing started last Monday when I had a follow up appointment with my inpatient psychiatrist at the hospital but I showed up having not slept at all the night before.  I explained to her that I took my PRN temazepam and it didn’t work so she got me some seroquel from the hospital pharmacy and told me to take that.  I did, and it worked after a couple of hours.

I showed up at my psychiatrist’s office and she said she had received a letter from the hospital doctor detailing my sleeping troubles.  I told her what had been happening – my sleeping had been varied, but generally I’ve been getting to bed late, or waking up at midnight and not being able to get back to sleep.  I feel that my mood is suffering because of it.

She told me what I had been dreading, that we had to start regular seroquel again.  I had really been wanting to avoid this because I gained so much weight on it last time I was taking it, plus previously I;ve been super sensitive to it and it has knocked me out for about sixteen hours at a time.

She said that weight gain on seroquel was not a guarantee; just because I might get an increased appetite doesn’t mean I have to give into it.  But to try and assist me she raised my topamax from 50mg a day to 100mg because of its appetite suppressant properties.

She also reduced my zeldox from 160mg to 80mg and ceased my valdoxan.  The only reason I was on so much zeldox was to sleep and it wasn’t working but I still need some for my anxiety.  Valdoxan, the melatonin tablet was originally prescribed when I wasn’t on any antipsychotic but starting on lamotrigine caused me to stop sleeping.  That clearly isn’t doing its job, and may be contributing to some bipolar symptoms so it had to go.  And considering it isn’t on the PBS and was costing me sixty-five dollars every month, I can’t say I’m sad to see it go.

She told me to come back in two weeks instead of my usual six to update her on how the sleep situation is going.  If I’m still not sleeping on 50mg of seroquel, she said we will have to consider hospital again.

I will post again in a few days to update on how I’m going on seroquel.

 

Mac

I Can’t Do Funerals

I went to a funeral for an acquaintance from my sports club this week.  It was a brief, tasteful service followed by lunch at the local RSL.  All of us from the club came wearing our jerseys.  I think his family would say the day went well.

Except I was a mess throughout the whole thing.  There weren’t enough seats available so I stood up the back with Pea and spent the service trying not to break down, wiping tears away on my jersey.  At one point in the service everyone took turns to place a rose petal on his coffin.  When it was my turn I went up with my head down because I was embarrassed at being so upset.  Our friend had more to do with Pea than me and he wasn’t crying.

I’m like this at every funeral I go to.  It doesn’t matter who it’s for, how well I know them – not at all in some cases – funerals turn me into a mess.  I get upset then try to hide my being upset because I worry that people will think I’m being inappropriate crying over someone I didn’t know very well.  And if I do know them well I still question the appropriateness of my grief.

As a person on the spectrum no event makes me question my behaviour more than a funeral.  Am I grieving too much?  What do I wear?  Do I talk to the family or do they want to be left alone?  Should I even be at this funeral?  Did I have enough to do with him to earn a place here?

I’ve got to remember that death and everything around it is awkward for literally everyone.  When I went to this funeral no-one said I shouldn’t be there.  Several people in fact said they were happy to see me.  And as we had lunch at the RSL exchanging stories and memories a sad day turned into a good one.

After all, nothing brings people together like a funeral.

Some Travel Anxiety

I am leaving to go away for a week tomorrow and I’m really nervous.

This trip has been planned for months; it’s a sports trip. I’m going over with a team to play a team from a sister club in New Zealand.  I signed up for this trip because on paper it sounds like an amazing experience that I knew I would be grateful for afterwards.  But leading up to it I’ve been worrying more and more.

It’s a week spent in close quarters with twenty other people, some of whom I don’t really care for, playing a gruelling game during the day against super fit and talented people, and partying until the early hours of the morning, while I know my boyfriend wants to be up early for sightseeing – hello sleep disturbance!

I’m worrying about how I’ll handle myself with so much socially exhausting activity going on. I’m worrying how I’m going to sleep – sleep, as we know, isn’t my friend.  I’m worrying I’ll get injured.  I suppose I shouldn’t worry too much about that last one because I do have travel insurance that covers me for sports.

My boyfriend has been away with the club before and assures me that on his first trip he was nervous too, but found it a great way to get to know everyone. Friendship is forged on common experiences and all that.

When we last spoke this morning he signed off by saying “Remember, money, passport and meds – everything else is optional.” Because oh god the packing.  I haven’t even started yet.  I made myself a list which took about twenty minutes just to make sure I haven’t taken my 3DS and not brought a charger or something.

The medication issue is pertinent. I’m on six different scripts so try organising a week’s worth of meds out of that.  Very entertaining.  And I’ve got to include spares for if I lose a dose.  I’m worried because I forgot to get a psychiatrist’s note for my meds and I don’ t know if I’ll need one at immigration.  The last time I travelled overseas with meds was to the states in 2014.  I was on a lot less meds then though.  I did have a note from my doctor but they didn’t check it.  I’m considering getting my GP dad to write one on the off chance that I do get pulled up because of it.

So I’m anxious, ruminating and…probably going to have a great time. I’ll report back in a week, unless I fall down a hobbit hole or something.

 

Mac

On Christmas Time

In the past week or so, both parents have checked in with me to make sure that I’m ok with Christmas.

As the days wind down I have to say I’m doing fine.  The most stressful part of Christmas for me is the shopping and shopping centres in general.  As December rolls around the local Wesfield fills up with stressed out people, finding a park takes ages, it’s always too hot and claustrophobic no matter what they do with the air conditioning.  This is the reason why I do most of my shopping online and well before the last week.

Trying to find a car park is really the worst though isn’t it?  To a point with the crowds I can put my head down, stick my elbows out and just barrel through to focus on the task at hand.  But you can’t focus on anything if you can’t get into the building in the first place.  Some shopping centre parking situations are so ridiculous they’re getting media attention.

Three hours?  Really?  Everyone’s parking tickets would have expired!

My mother went to the shops twice yesterday – once at midday to do the food shop, and then returned at around 4 to do the last minute presents.  At midday she was circling the parking lots for ages, at 4 she got lucky because someone left.  Today she returned at 9.30 to get some fish and there were no parks.  None.  After driving around for ages she gave up and came home.  She intends to return at about five because she thinks there will be a lull in between the people on holidays and the people who work rushes.

As for me, I asked my family what they wanted in mid November – trying to be organised and all that – but no-one knew what they wanted.  I had known what I was getting my BF for months – new Nike running shoes.  He knows what he’s getting because he couldn’t tell me what shoe size he is, so I had to have him try them on.  The wrapped up shoe box was sitting in our living room long before our Christmas tree was.

My sisters continued to be coy about present ideas so I got sick of waiting and just bought them both surprises that they’re just going to have to like.  One is getting a new Lorna Jane top for the gym and the other is getting Peter Alexander pyjamas.

My parents did eventually give me some ideas – mum wanted a cooling jacket for her wine.  Huh?  I had no idea where I would find such a thing and in the end just googled “wine jacket” until I came up with something I could order from an online store.  Dad wanted a bottle of port so, given that my BF lives close to a bunch of vineyards we went up there to source a bottle.  It just so happened that as we went to the cellar door for this vineyard where we got the port I saw a whole lot of these cute and colourful wine jackets for sale, but these ones had handles to carry around.  I couldn’t resist buying another for mum.

And yes, this is a secret blog.  My family definitely aren’t reading here.  My BF might be, but he already tried his present on, soooooo…

The last few things I have to do before Christmas is clean the house and help with the cooking.  My jurisdiction of the house is done – upstairs hallway, bathroom, toilet, stairs and my room – and mum will do the ham tomorrow.  She ordered a smoked ham from the local butcher which she picked up this morning.  It smells great.

Today I will go to church with my grandmother and when we come back from that we’ll have the ham and fish.  On Christmas morning – I either wake up inordinately early or sleep in on these meds so we’ll see what happens.  Either I’ll be pestering everyone else to get up for presents or they’ll be waiting for me.

Christmas lunch will be with Dad’s side of the family and Christmas dinner will be with my BF’s family.  I’m not sure what’s happening on boxing day but I know mum has a rib roast.

Christmas is a stressful time for many people but I don’t really feel that stress.  This year is very different to last year when I was in hospital, which was added stress for me and everyone around me.  I’ll be able to enjoy the day more now that I’m not adjusting to new meds, or having to go back to a ward and marinate in all the other patients’ dramas.

Of all the anxiety inducing things that happen to me in a year, Christmas is really unremarkable.

A Doctor’s Appointment and Lots of Hairballs

My hair is falling out.  In freaking sheets.

I can’t quite remember when it started – maybe at the end of last year sometime – but I’m shedding like cat coming out of winter.  I fill up my hair brush in just one brushing session.  There’s always masses of it on the back of my shirts.  When I wash my hair clumps of it can be seen on the floor of the shower.  I swept out my bathroom and created a massive blonde tumbleweed.

It ends up absolutely everywhere – all over my clothes, through my car, my boyfriend’s beard – everywhere.

I’ve been a bit concerned even though I don’t appear to have thin spots on my scalp, but I do have way more hair than the average person.  I’m not sure what’s causing it, my meds, my anxiety or bleaching my hair.  I’m pretty sure it’s not the latter because it appears to be falling out at the root, not breaking off.

My anxiety has been up and down this year depending on what’s going on in my life – I had a particularly stressful end to the college term, but the hair loss has been steady and constant.  As for my meds, I don’t know what could be causing the shedding.  I’ve been on meds before that did it – on epilim I nearly went bald – I had never heard of any of the current set causing hair loss.

After a frustrating afternoon of pulling my furballs out of his shower drain, my boyfriend insisted that I raise the issue with my doctor.  I had an appointment coming up so I promised to do just that.

I haven’t seen my doctor since the Zeldox discussions.  She’s only seeing me six weekly now, as opposed to three.  I’ve been handling things well I think.

On the day of the appointment though, it was obvious that I was having an off day.  I usually take my night time meds early in the evening so I can have a good long sleep and wake up early.  Even though I take the maximum dose of Zeldox I don’t usually experience a hangover effect, but this morning was different.

My boyfriend pretty much had to drag me out of bed when his normal alarm tactic – rolling a chilled can of diet coke across my face – didn’t work.  I slept in the car and when I got out I was immediately overcome with a wave of nausea.  Unfortunately I didn’t have my ginger pills on me.

It was obvious to my psychiatrist was soon as I came in that I was doped up, and she questioned whether I was on too much medication.  I assured her that this episode was unusual.  I must admit I panicked a little – I think every appointment I have with her I’m going to be worried that she’s going to take me off Zeldox.  It’s not just that it works, I’m keen to stay on it because it keeps me thin.

Shallow, I know.

I didn’t talk much because I was so tired but somehow I convinced her that I’m going ok.  We raised the hair loss issue with her and she told me what I already knew – that none of my meds were known to cause this.  She also said that while it might seem like a lot of hair falling out, if I can’t see any thin spots then I probably shouldn’t worry too much.

I was probably in and out in under twenty minutes, and that was me done for another six weeks.  It looks like I’ll still be scraping furballs off my shower floor for the foreseeable future but hey, at least I get to stay blonde.

Mac

Antipsychotics Update

The Zeldox saga continues.

At my recent psychiatrist appointment we were discussing my Zeldox dosage again.  My BF came with me because he was unhappy that I’ve been taking both doses at night – he read up on the drug online and came across this from the NPS website:

Unlike most other atypical antipsychotics, ziprasidone must be taken twice daily with food. Absorption of ziprasidone may be significantly reduced if taken without food”

He interpreted that to mean that I shouldn’t be taking both doses at night and complained to my doctor that he thought it wasn’t safe.  She assured him that it’s perfectly safe, and that loading me up at night is the best thing to allow me to sleep.

Also, my sleeping has improved a lot now that I know I have to take it with food.

I asked her if I could have a script for maxolon due to some nausea I’ve been experiencing in the mornings and she refused – apparently zeldox can interact with maxolon and cause dystonia.  I’ve been told to go to a health food store and look into natural therapies for nausea.

She also sent me to get an ECG to make sure I have no abnormal rhythms which is a risk for the drug.  Not going to lie, that has been bothering me ever since.  I got my ECG that afternoon and haven’t seen the results yet, but this is just another example of my mental health messing with my physical health.  I did some more reading on the nps website and found this:

A small but increased risk of sudden cardiac death has been observed for all antipsychotics — consider the individual’s cardiovascular risk profile before prescribing an antipsychotic

Yikes.

I know it’s a small risk but it’s just another thing to worry about.

Mac

Antipsychotics and Me

Finding the right medication is often a balancing act between how well it works and how many side effects you can take.  While I’m aware that I have to live with some effects – there’s no such thing as a quick fix in psychiatry after all – I’m still holding out hope that I can find medication that works and doesn’t pile weight on me, or zonk me out all the time, or give me such bad memory loss I’m blanking on my personal details.  I’ve been through quite a few now and I’m really hoping that this current one is the one that sticks.

I started on Zeldox in December last year.  I had been on it before, and it was a disaster because my doctor put me on 40mg straight away and I was violently ill for weeks.  This time we started with me taking 20 mg to start with, with my psychiatrist aiming to have me settled on 100mg.

I talked about my experiences getting on the new medication regime in the rehab diaries, but the complications with my medication didn’t end once I left hospital.  There have been side effects that only became problematic later.

So, back to the end of my hospital stay.  I’ve just been discharged and I’m taking 80mg of Zeldox – 20 mg in the morning, and 60 mg at night.  I persisted with the daytime dose for about three months but midday drowsiness was a persistant problem, and is a problem for me for any antipsychotic medication I’ve taken.

I’d take the pill at about nine a.m.  I’d feel great for a couple of hours, then start feeling a bit seedy around midday.  Generally I couldn’t get through the day without a midday nap.  For those eight hours between the nap and night meds however I can’t deny I felt fantastic.

I put the problem to my psychiatrist in an appointment scheduled when I would normally be napping.  She agreed that I appeared over medicated, and put a stop to the morning Zeldox.  But, would I mind trying to take all of it at night?

So I did.  Still on 80mg of Zeldox but all at night.  While I was much more animated during the day, and could go places without worrying about crashing suddenly in public, not taking the drug during the day did see my productivity go down.  I had trouble focusing,  I was restless, and just generally more anxious.

Then came something that every happily medicated person with bipolar disorder dreads: I stopped sleeping.

Generally when this happens it’s time to change up the meds but I was not prepared to give up on Zeldox just yet because….well, I’d been losing a lot of weight on it.  That might sound petty but I’m willing to hold onto any drug that doesn’t push me in the other direction.

I went back to my doctor and told her what was happening – and had her despair over my continued weight loss – and she agreed that we should persist with Zeldox for now.  While my weight loss has been bothering her, I previously gained 20kg in a couple of months thanks to other antipsychotic drugs.  She’s very mindful of not putting me on anything likely to repeat that.

So to fix the sleeping and other positive anxious symptoms she decided to jump from 80mg to 120mg of the Zeldox.  She told me to try taking 40 in the morning and 80 at night, but to switch to all at night if the daytime dose was knocking me out.

That worked – for a week or so.  Eventually my sleeping became problematic again, and taking 40mg during the day was making me drowsy.  Though again, in the afternoons I was feeling fantastic.  But life isn’t forgiving of a need for a siesta so I started taking it all at night.  I still wasn’t sleeping, and my anxiety symptoms returned during the day.

So at my most recent appointment she told me to jump 40 mg again so that I was taking the maximum allowable dose, 160 mg a day.  Because I do seem to do better when I take it during the day she told me to split it 80 mg at night, 80 mg in the morning and to persist with this for a while just to see if we couldn’t make it work.

I tried to make it work.  Taking 80mg of a sedating antipsychotic as soon as I got up had me feeling like I had been hit by a train for the first half of the day (and of course feeling fantastic the second half.)  I persisted for a few weeks but it just didn’t get better.  I tried setting an alarm for 4 am to take it, hoping to be able to sleep the sedation off before I had to be anywhere but it still lasted until about 11 am.  It was so strong that if I had to be anywhere before that time, I had to get someone else to drive me.

So now I’m back to taking it all at night.   I have been sleeping fine, still a little drowsy in the mornings but not scary sedated.  While my mood might be more stable on a daytime dose of the antipsychotic it looks like taking something at that time just isn’t realistic.  I can’t deal with the sedation.

I wish I could be one of those people who gets on a particular dose of medication and stays on that dose for years but medicating me is like a game of jenga – carefully building a complex structure and taking pieces away, hoping the whole thing doesn’t collapse.  Which it inevitably does.

Mac

Bipolar Disorder Feature On Australian Story

This week the ABC’s Australian Story did a feature on the Newling family’s journey with two out of three children diagnosed with serious mood disorders, with two very different outcomes

Watch it here:

Or read the article on the younger brother Nic here

This feature provides an insight into the way kids with mood disorders are treated in the Australian system; Nic had access to more help than most but getting the right diagnosis is still so difficult.  Like me and so many other teens with bipolar they persisted with a depression diagnosis and feeding us anti depressant drugs that that just make us worse.

Getting a timely diagnosis for bipolar is difficult at any age but it’s so important because generally the longer we go without treatment the harder it is to control.

This story does have a happy ending for Nic and I feel so much more motivated just for having watched it.

I hope you all get something positive from this

Mac

The Rehab Diaries Week 6 – Get Me Outta Here!

I’d started getting restless.  It was obvious that I was getting overcooked.

I’ve heard staff and patients carry on about the evils of becoming institutionalised.  Getting used to being taken care of.  I don’t know that I’ve ever experienced that but I do know that after a certain amount of time in hospital I start feeling very anti-institution.

It’s not that it doesn’t happen – for the long term unemployed chronically unwell, particularly the youngsters, hospital seems be their primary social outlet.  I’m sure I don’t have to explain why that’s problematic.  But me, I’m independent by nature.  Even six weeks in I’m struggling to take set meal times in good humour.  Breakfast at 7.30-8.30.  If you sleep in like a normal person who hasn’t got anywhere to go, bad luck it gets cleared away and you miss out.  Lunch at midday.  Dinner at 5.

I miss being able to go for a walk without signing out and specifying a return time.  I miss driving.  I miss having the freedom to choose what I eat.  I miss baths.  I miss shaving.  I miss being able to watch more than an hour of youtube videos before I’ve used up my downloads for the day.

I’d established on fluoxetine and had seen definite improvements.  My irritation had toned down a lot and I was feeling general good will to those around me.  Even hearing guitar boy mindfully strumming away down the corridor didn’t make me uneasy at all.  I know my irritation towards him has been unfair; he keeps to himself and refuses to participate in the drama and politics of the other youngsters on the ward.  I can respect that.

To test my anxieties I went on leave one night with BF for a dinner and movie date.  A few weeks ago that would have been impossible but with the improvements I’d been seeing I was keen to try some regular world stuff again.

It went well.  I sat through it, even though it was a long movie and the cinema was very crowded.  I’m still hyperaware of the movements of all people around me so when there’s a lot of people in one space I get overwhelmed.  There were no meltdowns in the cinema that night however.

After last week I finally felt that I’d had some quality time with my therapist.  I was talking with her on the Tuesday of that week, saying that I was doing so much better in just one week and that I’m totally ready to go home.  I was prepared in my doctor’s appointment that week to ask for a discharge appointment on Friday.  She reminded me that, being a voluntary private clinic, I can actually leave whenever I damn well want.

Generally when a patient has reached the end of their treatment plan discharge planning begins a week or two in advance.  We talk about the support systems that we have in place, which outpatient therapists we’re going to see, whether or not a referral to day programs is appropriate.  The doctor has to record a final diagnosis (which in my case is practically a paragraph) and fax a bunch of discharge summaries to our various community care providers.  The number of appointments is usually planned around the patient being discharged on the day of the last appointment.  As we know however, patients can abruptly decide to check out without discharge planning.

I hadn’t had those conversations with my doctor yet.  I like to think that discharge planning for me isn’t hugely complicated; my care team is well known to my doctor and hasn’t changed much in the last few years.  I believe she was waiting to see how I established on fluoxetine before she started talking about it but in our appointment she accepted that I was doing better.  I told her I wanted to leave tomorrow.  I expected her to be taken aback but she said she was willing to support that, and set about writing discharge summaries.

Given that I’ve mentioned patients checking out without discharge appointments several times now, you’re probably wondering…how does this happen?  Well, all it takes is to inform the nursing staff and they’ll bring you the discharge papers.  My doctor ordered them and that evening a nurse sat with me and asked me a bunch of questions from a sheet of paper like, did I have accommodation? (yes.)  Who would be picking me up? (BF would.) What is your plan for the next few weeks? (moving house.)

I signed off on my details again, and when they provided me a feedback form, I wrote about the Christmas fiasco, saying I think everyone would have coped better with some more staff on.  That was that, and she left me to pack my things.

The morning of my victorious exodus discharge I was really only waiting for one thing before I could leave – scripts.  And the CMO took his sweet time with those.  BF arrived at 9.30, we got kicked out of my room at 10 so they could clean it for the next patient.  We finally got hold of him at 10.45

And by then I’d started feeling unusually drowsy.  While we were waiting for the scripts the nurse unit manager burst in and asked me if I noticed anything different about my medication that morning.

As soon as she asked I realised what must have happened.  I take 80mg of zeldox a day.  60 at night, 20 in the morning.  This morning I’d taken the 60.

My nurse came in at 8 as I was preoccupied with trying to force my running shoes into my carry bag (how do I end up leaving with double the clothes I came in with?)  This particular nurse hadn’t dealt with me and my meds before.  I took the cup, swallowed it without looking and got back to work.

I couldn’t remember if there were extra pills in the cup, but I did think it went down harder than it usually does in the morning.

The nurse was trying to say that my meds couldn’t have been wrong because I would normally question them if I saw something odd.  And it’s true, after the contraceptive pill debacle I always looked over my meds before taking them.  This mornings, of all mornings, I decided to make an exception.  ARGH.

So my return home wasn’t the joyous occasion it should have been because I rolled straight into bed and crashed, leaving my poor BF to work on his laptop instead of celebrate.  Then I couldn’t sleep that night because I could only take a 20mg tablet to balance the overdose out.  Nurses, take note.  Double check what you’re giving out, just because it’s not life threatening, doesn’t mean this shit doesn’t matter!

So that’s it.  My rehab journey this time around.  I may do a post talking about what I’ve been up to since I’ve been out –  I haven’t been overly interesting but there has been some changes.

Mac