Sleeping and Seroquel Update

It has been a while since I’ve blogged and I will give an update on my life shortly but today I want to talk about the sleep issues I’ve been having lately.

So as you know if you’ve been reading my blog I was previously taking a maximum dose of zeldox to get to sleep and that worked for about a year, but in October last year that stopped working, and so did the temazepam that I had to take on nights when it didn’t work.  I happened to have an appointment with my inpatient psychiatrist after one of my sleepless nights and she gave me 50mg of seroquel to see if that would help.  It did, and when I saw my regular psychiatrist later that week she prescribed seroquel to be taken regularly.

For a while that worked well.  I was sleeping for about ten hours a night and waking up refreshed with no hangover drowsiness.  But it wouldn’t last.

It started with a few nights where I would have to boost my dose of seroquel to 100mg.  Bizarrely the 50mg of seroquel seemed to not work when I had a full stomach, so I had to watch how much I ate.  I’m aware that increasing your medication without notifying your doctor isn’t a wise move but I do know a bit about my medications and 100mg of seroquel is not a high dose.

Then a few months ago I began waking up during the night at around 3am.  Sometimes I would go back to sleep, sometimes not.  I don’t mind being up in the middle of the night too much because I wasn’t tired and I could have some quiet “me” time.  However is was very disruptive for Pea who is trying to sleep while I’m moving around, watching youtube videos on my phone (albeit with headphones) eating snacks etc.

The waking up was getting earlier and earlier until I was only getting about two hours of sleep.  Sometimes when I woke up I would take another 50mg of seroquel but I was in denial that we had a problem.

Then I started having to take an extra 50mg when I hadn’t eaten too much, or hadn’t woken up.  I would take a 50, lie in bed for a hours trying to sleep, give up then take another 50.  Suddenly 50mg wasn’t putting me to sleep any more.

After going a whole week of needing 100mg to sleep I was willing to admit we had a problem.  Then on Sunday I took 100 and it didn’t work.  So I took an extra 50.  Nothing.  I took another 50 again putting me at 200mg of seroquel.  I went to sleep and woke up feeling pretty flat.

I was despairing of the prospect of seroquel working at all the next night by that point so I called my psychiatrist and told her what I had done, and said I didn’t know what to take that night.  She told me to come in for an emergency appointment.

In the appointment she said that seroquel is used as a sedative but it is primarily a mood stabiliser and when you are taking in regularly the sedating effect will wear off.  Also apparently seroquel does not have a greater sedating effect above 200mg so me taking more than that out of desperation won’t do any good.

She said she will keep the seroquel in my medication regime because I need it for my mood disorder, but she prescribed a new drug for my sleep disorder, gabapentin.  I was surprised because I mistakenly thought this drug was for people with parkinson’s disease.  But apparently it’s used for epilepsy, mood disorders and sleep.

She told me she wants me to get to 300mg of gabapentin a night, but to start with 100mg, go to 200mg the next night then 300mg the night after that.  If 100mg that night didn’t work by midnight, she said, I could take another 100.

I went home and did wh

at she said and even though I was incredibly anxious about whether it would work or not it did and I didn’t have to take that second 100.  I went up to 200 the next night and 300 last night and have enjoyed long unbroken sleep with no hangover effects.

Before I left she told me to call her on Thursday – today – which I will do, and update her on how I went with it all.  I will do that, and keep you updated.

 

Mac

A Very Sober Christmas

I got my antabuse script refilled for the first time the other day marking my first month on the drug.  That makes one month into my six month sobriety challenge.

My sleeping has been amazing.  I seem to need to do a lot of it, and will sleep between 11 – 13 hours a night.  When I was drinking I would go to bed around 8 and wake up around 1 in the morning.  Sometimes I would go to bed on my own, sometimes I would need to take the other half of my seroquel tablet.  I don’t get much of a hangover any more, but I was experiencing dry mouth.  That has stopped now.

My mood has been up and down.  I’ve been stressing out because of this time of year and all the things I need to do and I find I’m taking seroquel to sleep and to calm down.  I’ve also been skipping meals due to being busy and this has a major effect on my mood.  I cannot cope when I’m hungry.  I get edgy and light headed.  The other day I had a hair appointment at 11, which lasted until 3, and drove straight to Pea’s house which in holiday traffic took the best part of an hour.  On the freeway I started to feel lightheaded and was wondering why then it hit me – duh, I haven’t eaten today since having a protein bar at 8 in the morning.

To combat my low mood my doctor has increased my fluoxetine from 10mg to 20mg but I won’t start seeing the effects of that for a few weeks. This is done cautiously because some antidepressants can cause rapid mood cycling in bipolar patients.  So far it hasn’t done that to me, and has been a huge help with my anxiety but we’ll see what an increased dose will do.  The doctor says the detrimental effects of binge drinking on my mood can take up to six weeks to lift.

As for temptation, it’s hard to be sober at this time of year.  On one hand, the control has been taken away from me; it’s not really a matter of self control as there are real life threatening consequences stopping me from drinking.  If I were to stop taking the antabuse I would still have to wait a week to start drinking.

Alcohol is everywhere.  On Friday Pea and I went to his company Christmas party.  They had booked a restaurant with a bar that served a variety of cocktails that I would have been all over had I not been on Antabuse.  Instead I drank my mocktails and found I couldn’t have too many of them as they were so sugary.  As everyone at the party got drunker I found it hard to join in on the conversations and ended up retreating into the corner on my phone.

We had parties at my parent’s house on Christmas eve, Christmas day and boxing day.  There was and abundance of beer and my dad’s sangria.  And one thing the antabuse has done is made me suspicious of food.  I’m not sure to what extent that alcohol evaporates out of food when it cooks but I don’t want to take any chances.  But still I get caught out.  My sister passed out some rumballs on Christmas eve and I nearly ate one until mum stopped me.  Luckily I didn’t have to forgo trifle as my aunt doesn’t put alcohol in hers.

New year’s eve is approaching and that will be another challenge but I guess I have to pull out the mocktail recipes I amassed when I was in hospital for new years two years ago.

 

Mac

Centrelink Dramas

I would like to interrupt our scheduled programming of doom and alcoholism for something a bit different.  For the past few months I’ve had a…thing ongoing with Centrelink and it had really been weighing on my mind so I thought it would be best to share it here.

I had been meaning to make this post for over a week but I’ve been really busy what with Christmas chores including organising Pea’s house for my parents’ first ever visit last weekend.  In that time, the issue actually got resolved, but I’ll get to that.

I receive the disability support pension.  I do work, within the limits of what the DSP allows but it is my primary source of income.  Without it I would struggle to afford my various therapies.  I was put on it in 2010 after a lengthy assessment process which I have been told has gotten much worse.

One of the requirements of being on the DSP is regular assessments to ascertain whether you are still eligible to receive it.  Well, I say regular but I hadn’t had one for four years.  I had been assessed twice previously and been deemed still eligible for it.

However, in 2011 the eligibility tables for mental illness were re written to be much tougher, and since then many people on the DSP for a mental disability had been reassessed and deemed ineligible.  These people had been placed on Newstart instead, Centrelink’s jobseeker’s allowance which is $341 a fortnight less than the DSP.  After five years of this, this article claims that now 25% of people on Newstart have a disability.

I’ve heard all sorts of rumours about how the government is cracking down on people receiving the DSP for psychiatric conditions including one article I read that I haven’t been able to find that claimed Centrelink was targeting under 35s on DSP for mental illness.  Sounds ridiculous doesn’t it? Yet when enough people have been coming forward after having their payment changed from the DSP to Newstart, I did start to wonder about these changes and how they might affect me.  But I kept telling myself not to worry until I actually got reassessed.

Fast forward to August of this year and I got a letter from Centrelink saying I was being reassessed. Uh-oh.  The only instruction I was given was to get a medical report outlining all the conditions I had that reduced my capacity to work and return it to Centrelink in two weeks.

So I called my psychiatrist and asked for an emergency appointment.  And got told by the receptionist that she doesn’t do that (I know for a fact that she does, maybe not in this situation but still.) After a bit of back and forth we decided the best thing to do would be for the doctor to call me back.

She called about fifteen minutes later and I explained the situation.  She said she would dictate a report, send it to the dictophone office and the report should arrive back in a couple of days.  Easily done.

After a week of me calling the office every day to check if the report was in I called just as the postman delivered it.  So I dashed out there and took it to my local Centrelink and lined up for an hour to have one of the aides remind me that I can in fact upload medical reports using my phone.  Oops!

So that was done.  Or so I thought.

I thought that all I needed to do was provide my medical report and the assessment would be done in a matter of weeks but we were just getting started.  The next month, in mid September I received a letter from Centrelink telling me that as part of my ongoing case review I had to have an interview with one of Centrelink’s disability officers and an appointment was made for late September.

I was extremely nervous about this meeting and was expecting to be grilled about my condition but the disability officer I spoke to was pleasant and even though I didn’t express any concerns seemed to be trying to put me at ease.  He had with him my submitted medical report plus copies of all doctors letters I had ever submitted to Centrelink, plus some medical records and hospital discharge summaries.  He told me that the fact that I have seen so many doctors works well in my favour, because all these letters and reports serve as evidence that I actually have these conditions and they have been impacting my life significantly.  .

He asked me questions about my symptoms and the severity of them day to day, tying it back in with the kinds of behaviours that were caused by them.  We went through my medications and the doctors and other therapists that I see.  He said that the next step for him was to go to my doctors with what I had said about my symptoms to verify it.  I gave him the details of my psychiatrist and psychologist and that was it.  He ended the meeting by acknowledging that the tables of eligibility were tougher these days but he didn’t think I had any reason to stress.

Now I thought my part was over, that all I was waiting for was for Centrelink to reach out to my doctor and therapist and take their reports to an independent assessor. WRONG.  Fast forward another couple of months – in the mean time I was going mad with worry.  How long is it going to take?  I hear it takes forever to get on the DSP these days, but to get taken off it? What happens when I do get taken off it? Does my payment automatically transfer over to newstart or do I have to apply for that?  What am I going to do in the mean time if it’s the latter? – to late November.  I get a call from Centrelink telling me it’s time for an independent medical exam (their words.) Shortly after this phone call I get texted an address and a date which is in three days time.

So I show up there, for this ‘exam’ and am taken into a room and sat in front of an ipad which has a skype call set up on it.  The person on the other end asks me if I know what I’m here for and I parrot what I was told in the phone call – ‘an independent medical exam.’  She laughed and explained that she is a psychologist,  appointed by Centrelink as a neutral party to verify the information provided by my psychologist and psychiatrist.

Our interview was much like the one I had with the disability officer, she seemed to want to check that my story lined up.  I had to talk about some stuff that has happened since that meeting like my trouble sleeping and starting on seroquel, but really I was just telling the same story over again.

We had some technical issues and in the end our skype connection dropped out, so we had to finish the call by telephone call.  When I told my mum this she was horrified – this woman has to assess whether I am medically able to work based on a telephone conversation? – but I was just glad I wouldn’t have to make another trip into the city for another appointment.

That was two weeks ago, and I thought I was in for another lengthy waiting game.  I concentrated on getting my Christmas shopping done and saving for my car registration before I lost my income.

But then last Wednesday I received this text:

your medical review has been completed.  We have determined you are still eligible to receive Disability Support Pension

Wow.

All this worrying about having my income cut off has been for nothing.  It just goes to show that the system isn’t quite broken yet.

I don’t know when I’ll have to worry about it again, the disability officer said they try to get them done every two years but it’s been four years since my last one.  So at worst I’ll have to go through this again in two years time but who knows, I could be ready for full time work by then.

 

Mac

Starting Antabuse

I started antabuse the other night and have been sober ever since of course.  Starting this drug is naturally a huge deal.  I went into it thinking I could go off and on it so I could drink on special occasions but that won’t be happening.  By taking this you commit to at least six months of sobriety.  Most scripts last three months, this one lasts a year.

The potential side effects of this drug are so serious that my doctor made me sign a contract stating that she had explained the seriousness of it all to me.  So what are these potential side effects?

According to DailyMed,

“Disulfiram plus alcohol, even small amounts, produce flushing, throbbing in head and neck, throbbing headache, respiratory difficulty, nausea, copious vomiting, sweating, thirst, chest pain, palpitation, dyspnea, hyperventilation, tachycardia, hypotension, syncope, marked uneasiness, weakness, vertigo, blurred vision, and confusion. In severe reactions there may be respiratory depression, cardiovascular collapse, arrhythmias, myocardial infarction, acute congestive heart failure, unconsciousness, convulsions, and death

 

So.  This drug can kill you.

All the websites I’ve looked at recommend not taking it less than 12 hours after drinking but my doctor said 48.  She also said if I wanted to stop taking it it would be a week before I would be safe to drink but I found some websites that said two.  If and when I do decide to go off it I will wait two weeks just to be safe.

I received the script on Thursday but, as I had been drinking the night before I was unable to start that night.  The pharmacy I go to for my scripts is a bit of a drive away so I wanted to make sure they had it before I went and got it.  When I was talking to my psychologist about going on it she told me that antabuse is fairly rare and they probably wouldn’t have it sitting on their shelves.  So I figured I could call them that day, and if they didn’t have it, I could get them to order it in by the time I was headed that way the next day, and could start it that night.

I called them, and they did in fact have it.  They said they would reserve it for me, not something I was aware I could do at the pharmacy.  Clearly there are a few problem drinkers in that area.

When I went to pick up the antabuse the pharmacist said “now I don’t know if you’ve been warned but if you drink on this you’ll get all the effects of a hangover without the fun part beforehand.”  Well that sounds positively tame compared to what I found above doesn’t it?  I told him I understood and I paid for it.  And oh my god it was expensive – $79.99 for…I’m not sure how much is in there actually.  It’s either one months’ worth or three months’ worth.  So it’s not on the PBS.  Pea thinks that’s because the government wants to make up all the alcohol tax they’re losing from the sober problem drinkers.

I started taking it that night, with my nightly seroquel.  Pea thought it would be funny to lick one of my tablets then have a beer.  I was a bit worried about him, but he had no bad effects come of that.

I’ve been taking it for three days now and I feel fine.  I do have a morbid curiosity every time Pea opens a beer wondering if I should take a sip just to see what happens.  But I’ve been told by enough people that would be a bad idea – mum tells me I will want to die.  My psychologist told me about one of her patients who started drinking on antabuse and after only one beer was so violently ill he need to go to hospital by ambulance.

I’m aware that I haven’t talked much about my problematic drinking on this blog (they don’t like to label people as alcoholics anymore) and that’s mainly because I don’t know what to say.  I don’t know when and how it started, I don’t know why I do it and I don’t know how this will affect me long term.  Being in hospital didn’t help, it just dried me out for a little while then I was back at it again.

I had a blood test yesterday to make sure I haven’t damaged myself with all this irresponsible drinking.  I had one in hospital and I was fine but I’ve been doing it heavy since then.  I won’t find out the results until later this week.

Not drinking for five days hasn’t caused me significant distress, ok I cried the first day but only because I had a crutch and now it has been taken away.  I wasn’t experiencing any dependency symptoms apart from that withdrawal episode I had last Tuesday but nothing like that has happened since then.  Antabuse is a prick of a way to get sober because the control is taken away from you.

But I was out of control before.

 

Mac

The Strange Episode Explained

So I went to my doctor yesterday.  Dad was meant to come with me but he was late because he went to the old address that he has in his address book at work.  Which is funny because my psychiatrist has been there for six years but oh well.

After my episode on Tuesday night, Dad sent my doctor a fax detailing what had happened, concluding with the statement that, in his professional opinion as a doctor, I was on too much seroquel.

She asked me if I was still drinking a lot and I said I was.  She said that, in her opinion as a psychiatrist who has dealt with many problem drinkers on seroquel before, my Dad’s conclusion was incorrect.  What he described, she said, sounded like delirium brought on by alcohol withdrawal, compounded by seroquel on top.

I’m on 50mg of seroquel at night.  By accidentally doubling it I had taken 100.  That is a lot for me but, as she explained, not a high dose of sedatives at all.  That alone wouldn’t account for the sleepwalking.

She asked me I if was getting any other symptoms of alcohol dependence like shaking. I said I wasn’t, but that I felt anxious on days where I wasn’t drinking.  And when I do drink, I can’t stop at one.  So I thought that I would have to so something that I have been putting off but now I feel like I’m out of options – go on antabuse, the drug that makes you violently ill when you drink.  She said that if I’m going to do that we need to talk to Dad about it because to take a step like that you need family support.

At which point my Dad entered, apologising profusely for being late.  She reiterated what she had told me about her diagnosis of my episode.  He shot an accusatory look at me and asked if that meant I had been drinking at home.  She said no, I was experiencing withdrawals from drinking heavily at Pea’s place the night before.

We talked to Dad about me going on antabuse and he was a little taken aback but agreed that I needed to take that step to stay sober.  She said that taking this drug meant that I was committing to six months of sobriety, and laid out the facts – I can’t start it until 48 hours after my last drink, and I can’t start drinking until 7 days after to stop it.  And if I do drink while on it, the effects are life threatening.

Because taking this drug is such a big commitment she made me sign a contract stating that I understood the nature of this drug and the ramifications of drinking on it.  That’s a new one – never had to sign anything for any of my meds.

My doctor ended the appointment by telling me to come back in three weeks and telling me that if anything goes wrong, she could get me in that day if need be.  She thanked my Dad for his involvement and told me I was welcome to bring any of my family members to my appointments, including my mum (I’m not sure I’m ready for that.)

Afterwards Dad and I went for lunch at the pub on the corner of the street my psychiatrist’s office is on and I had the most amazing burger (huge beef patty, crispy bacon, American cheese, onion rings, pickles, barbecue sauce and ranch dressing.)  Dad was joking that I should have one last drink but I wanted to start antabuse the next night.  I couldn’t start it that night as I had been drinking the night before.

Well, that’s all for now.  I will be back to talk about my experiences when I start taking the antabuse.

 

Mac

A Strange Episode

I woke up this morning to the familiar sound of my fan humming but something didn’t feel right.  I opened my eyes and sat to see that I was in fact in my sister’s room, in her little single bed, not my own.  I can’t remember how I got here.  Ominous.

My dad came in.  “oh you’re awake.  Do you remember what happened last night?”

“no…”

“I think you’re on too much seroquel.  I want to go with you to your doctor’s appointment tomorrow to talk about this.”

He left me, still feeling confused and I went into my room.  The sheets had been stripped off the bed and there was a towel on the floor.  I went to take my tablets…and found that was impossible because my whole medication drawer was missing.  Someone had taken it right out of the cabinet.

The presence of the kitchen scissors on top of the cabinet gave me pause for thought.  I used these scissors to cut my seroquel, but I remembered putting them away.  Yet I got them out again.  It looks like I might have accidentally taken a double dose of seroquel.

I went downstairs and found mum with my medication drawer sitting on the kitchen bench.  She told me what happened last night from her perspective.

Mum and dad got home to find me trying to get out of my bed room but the wardrobe doorknob was jammed under the door handle so my door wouldn’t open.  My dad fixed the door from the other side and opened it to see why I was unable to do it myself and realised that I was…not awake.  Mum said “Mac, go sit on the bed”  Which I apparently did, then Mum noticed where I was standing there was a puddle.  Of urine.  I pissed myself and now I was sitting on the bed in my wet pjs.

Due to all this activity in my room I started to wake up, but I was groggy and not talking sense.  Mum found some dry pjs and sent me into the bathroom to get changed which I did.  They decided to put me to sleep in my sisters room.  As they were taking me in there, Dad said something about me being on too much seroquel and I said “oh I need to go take my seroquel” to which they both said NO!

Mum took the medication drawer because she reached the same conclusion as I had; that I had taken and accidental overdose.  She wants to keep my meds with her until they can fix me up with a Webster pack or something.

I’m not sure why but I’m surprised my parents aren’t mad at me for peeing on the floor.  I guess it wasn’t really my fault – well it kind of was, if I was more on top of my medications that wouldn’t have happened.  But still, I’m a little old to be wetting myself.  I guess what I’m feeling is embarrassment.

I will see my doctor tomorrow and Dad is either going to come with me or write a note, he hasn’t decided yet.  I’m hoping he isn’t going to try and convince her to take me off it because apart from this episode I have been sleeping well on it.

I will be back tomorrow with more.

Mac

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.