Friends, Family & Carers Forum

[kristin]

Hi just a quick input as we are in the middle of bedtime routine for my 6yo 

I have tried numerous anti-depressants over the years and a couple worked a bit for a while, one of them I was on for many years (it was rather "set and forget" then) and I would go up and down in dosage depending on how unwell I was. It got to the point where it wasn't helping me at all and the ever-present side-effects got a lot worse. So I got off them, by opening the lowest dose capsule and reducing by one grain a day. It took months, but I did it.

Since then I have tried I think one med but it gave me high blood pressure and didn't help with the depression at all. I was then (at nearly 50) diagnosed with bipolar type 1, and have come to an agreement with my psych that we don't discuss meds unless I'm unrelentingly suicidal (which I don't get anymore). The long and the short is that it is possible for some people to be unmedicated and functional (as I have been for several years) - but you need to work at your mental health like some people go to the gym. I still get unwell at times, and really struggle ocassionally, however I have a lot of support and I am determined to stay well enough without the meds.

Kindest regards,

Krisitn

[CherryBomb]

@Purplewife and @3forme looking back at your experiences, what sort of information, or what sort of questions would you have asked if given the opportunity to meet with the doctors to clarify any concerns? I ask this question so that newer carers will know the types of questions to ask so they can be better infomed.

[3forme]

Its hard to say what information you need when your loved one is very ill, too much information can be overwhelming for us and our loved ones. I found it really hard to think about what medication questions I should ask, it was such a stressful time.It was also hard to remember what I was told.

I guess I would have liked more information on what the clinicians expected the medication to achieve for my loved one. I didn't need to know every single potential side effect, I just wanted the more serious, and more likely ones. I also wanted to know how long it would be before the medication took effect, and weather the side effects would be transient or long term.

I do all my own research now, but always appreciate a clinician who can give me the "nuts and bolts" of what I need to know.

[CherryBomb]

Thanks @3forme - that's a really good point to consider: when you're feeling stressed and overwhelmed, it's hard to take in a lot of information. Getting the basic info, or in your words 'the nuts and bolts' from your doc is good start.

[Purplewife]

I second @3forme. What success looks like would be a great first point - I was so uneducated that I was expecting immediate improvement like pain medication 🙂 I would have liked to know what the doctor is hoping to see from each medication. I would have tailored my expectations then.
Then once things calm down a little the more detailed side effect information would be good. And I should have asked about food/caffeine/alcohol interactions, what physical health tests we should ask for to keep an eye on side effects, and what we could do to ameliorate some of the annoying but not serious effects (like I had no idea about the digestive impacts and could have started a high fibre diet earlier).

[CherryBomb]

We got another 15 minutes before we finish live discussiion. So you've got any final thoughts, now is the time to make them.

[Louise]

Just a word about my own mental health. I suffered chronic anxiety from 4 yrs old which was not diagnosed until I visited a psychiatrist for the first time, aged 30. She diagnosed me with obsessive-compulsive neurosis and prescribed an old-fashioned type of anti-depressant. I met with her three or four times for CBT, which was helpful, and I also had 1 visit from a social worker, but going on anti-depressants was a wonderful relief for me. I didn't regret it for a moment. I had only 1 side-effect, which was constipation, which I managed by drinking a lot of water. That was 15 years ago and I have been prescribed these same tablets countless times by countless GP's since. I have reduced my dose and a couple of times I have tried coming off altogether but didn't cope. Over the past 18 months I have cut down from 1 tablet per day to  2 tablets every 3 days to 1 tablet every 2 days to 1 tablet every 3 days and finally now to 1 tablet every 4 days. Coming off altogether will be a great outcome, but only if I'm truly coping. Which I am! I'm just so happy to be so much less anxious these days.

I don't judge myself as being weak for needing the medication. I won't be proud to cope without it, just grateful if I can manage. Over the past 15 years I've learnt so much about myself and my anxiety that I have learnt how to cope with it. I read a book called Neurosis and Human Growth by Karen Horney which was particularly helpful, plus I have seen various counsellors,priests and psychologists. Also, maybe it has decreased a little because I'm just older and wiser?

[Purplewife]

Thanks for the opportunity to give my input 🙂

[CherryBomb]

Thanks for sharing your experiences @Louise. From what you and @kristin have written, it seems like getting the balance of psychosocial support, coping, and meds for individuals is important.

For other people reading this. Please remember, deciding to make changes to meds is often a big decision, and needs to be done in consultation and under the supervision of your doctor as it could potentially have harmful effect. If you have any concerns please consult with health professionals.

This concludes our live discussion for this month's Topic Tuesday. Thanks to everyone who has contributed so far. You voices will help make a difference.

If you've missed out on tonight's conversation, you still have time to contribute. Just click 'reply'.

[kristin]

Hi @Purplewife 

You could talk to Medicare about the safety net. This covers not only out of pocket expenses from various doctor and specialist appointments but also medication after a certain threshhold is reached. You need to keep your receipts, however if you use the same chemist they should be able to print out a statement for you.

The carer's payment is through Centrelink, but I believe that it's quite difficult to get. Maybe some others on the forum know more about this aspect? When I was caring for my former partner I did look at it but decided me applying for it would make him worse, so I didn't even try.

I hope some of this helps.

Kind regards, 

Kristin