Lived Experience Forum

[Mosaic]

For many people who live with mental illness, one component of the treatment and recovery journey can include medication (sometimes more than one). However, over the course of the lifespan, sometimes people’s circumstances, symptoms and/or diagnoses can change. At one time or another, people may find themselves making adjustments to or switching their medication/s. As I’m sure many of you have already experienced, changes in medication can sometimes be an arduous, frustrating and confusing process. 

For this reason, I thought it might be worthwhile opening up a new thread to explore the different ways in which to cope when switching between or adjusting medication. Here are few quick ideas that came to mind, just to get the ball rolling…

• Work as a team. Changes in medication and/or dosage are ideally managed in partnership with your treating medical doctor and/or psychiatrist.
  

• Be patient. Switching or adjusting medications can be a delicate process, sometimes involving a bit of trial and error. It can be hard to know at first whether the medication is working adequately, or if it is the right one for you.

• Ask lots of questions, and stay informed. Some examples of questions you can ask your doctor or psychiatrist might be;

- What exactly is the medication supposed to do?

- How am I supposed to take it (e.g., once daily with meals)?

- When it should begin to take effect?

- What are the side effects, if any, and what should I do if they occur?

As we begin our conversation, I just wanted to quickly mention the Forum’s Community Guidelines around discussing medications, which you can read more about here. We ask that members please refrain from giving specific details about their specific medications (e.g., discussing specific medication names and/or dosages).

With that in mind, I’d like to open the floor for your tips, tricks and ideas! I know several community members have already raised some really interesting insights about their journey with medication. One such interesting discussion that comes to mind was started by @kenny66 - you can check it out here.

A quick shout out to some of our existing members that might have experience in this area - @kenny66, @Akash75, @hiddenite, @Loopy, @Pixie, @Neb, @tabby, @Rick and @kato  – we’d love to hear from you! Have you ever experienced a change in medication? If so, how did it go? What worked for you? What didn’t work for you? What wisdom or insights can you offer to others who may be currently walking through, or getting ready to walk through, a similar journey? Do you have any nuggets of wisdom to share on this particular topic?

Stay cool,

- Mosaic

[kenny66]

That's a big topic and I don't think there is much generalisation that applies. As I have said a while ago I am very pro medication.

I was on medication for DID when I first got obviously ill but it didn't do much for me but helped with some delusions. My MI progressed over time and I went through BP11 and schizophrenia as a diagnosis until I got to my present one of schizoA.

The drugs I used for schizophrenia were partly effective for the hallucinations and delusions but not for mood so these were added quite recently.

The first drug I used for schizophrenia was considered to be the gold standard for this MI. It was fantastic but the side effects were so bad I went of it, particularly the low white blood cell count.

There was a lot of mucking around with some terrible drugs and some not effective but I got onto a good programme.

What I found is it takes a long time and a long time tweaking doses.

I got bad tardive dykinesia and some other involuntary movement disorders which needed a slight reduction in medication to fix. But it took ages to get it right.

One I got continual dribbling from my mouth and another restlessness so bad I was running around at a hundred miles an hour all the time.

So you just have to go through a process of eliminating the ones that don't suit you. Mostly its pretty obvious quickly if they aren't for you.

I found also don't just go with what the psych says you have to have because a lot of times they get that wrong. Stick to what you want and your choices for an acceptable quality of life.

You don't have to stick with something that you don't like because there is plenty of choice just like there is with other illnesses where you don't have to take whatever is dished up to you.

Bottom line is I would be institutionalised without medication. My behaviour can be really out there when I am on it so I hate to think what it would be like without it. Thank goodness most of the time it is pretty hilarious and eccentric and causes no harm.

[Ma60]

The last two medication changes, I have undertaken have been in hospital. This was decided in consultation with my Psychitarist and husband after my previous changes were difficult to say the least. So for those who have private health insurance this can be an option

[NikNik]

Thanks everying for sharing so far! @hiddenite I just thought of you when I read @Ma60 's comment.

Maybe something you could consider?

[WombatBoots]

Hey there @Mosaic, 

I read your post earlier today and have been absorbing it. Thank you for writing/posting, so well written.

I hope I have some time tomorrow to write some more about my experiences.

Just quickly what I will say is my medication has been as up and down as my MI was. 

Juggling meds and getting to the right "recipe" it's so trial and error. 

Through SO much help once I found mine, my living has been so much better

again thank you 

@Mosaic

[Mazarita]

I've been taking psych meds for about 25 years. I'm going through change of medications for bipolar now - ramping up one medication and then, in about a week, introducing another. Here are a few basic guidelines I try to follow:

Don't go cold turkey off medications. From past experience I know this can produce extremely painful, sickening symptoms. Slow weaning on and off medications is always the way to go. These days I usually like to go on and off slower than recommended because of how difficult I've found the transitions in the past, especially with anti-depressants. 

Do it in consultation with a psychiatrist/doctor. I'll admit I have sometimes withdrawn from meds on my own in the past but I plan to avoid doing this again. I have just ended up taking meds again anyway, with the help of a psychiatrist or doctor.

Tell loved ones/anyone you live with. It's usually helpful for them to know that I will be going through a more difficult time than usual. This can help them make allowances and not be so rocked themselves if I behave in strange or difficult ways. These people can also help monitor how things are going.

As with many people, my experience of psych medications is somewhat ambivalent. They are not a cure. They often only really offer relief from some symptoms while bringing new problems with them. But it is also apparent that I am better off with them than otherwise.

[kato]

Hey everyone, just saw this post..... for some reason or another i am not getting email updates...

What everyone has written is good, especially about making sure you keep well in touch with your g.p and psych team, i found what was helpful was don't be afraid to say to the dr's, let's take it slow, and gradually over an extended time span titrate the medications, i know sometimes we need to be hit hard with something to help bring us out of a bad state, but i think where possible longer the better when starting a new med or a new combination.

My reasoning is purely because then you can monitor the side effects if any easier, they shouldn't come on so strong if there are side effects, when i got treated last year, and re-medicated after being med free for awhile, i had weekly dr's appt's and we increased one particular med quite quickly, to help me to level out quickly, but once that happened, we gradually increased my other med over time to what it is now, i think 5 months of increasing maybe more my memory is not the best, but we would increase and then do a blood test after a month to check the levels in my system, and then increase because it was not high enough, and when the third med was introduced, again slowly increased over a few months to monitor any side effects.

I do have a good g.p who i can be quite open with and basically tell her how i would like to proceed with increase or decrease, or changing to a slow release one etc etc, i know not everyone has this luxury i will call it.

but what everyone else has said as well 🙂

[Light-worker]

I have just been through changing meds and it's not easy I have a baby and a 3 yr old.
My biggest problem was social isolation I have no family here, my husband travels, and is preoccupied with work and my friends are limited. I also don't like to talk about things with them.
I have got through this but not without some trama to my family particularly my 3 year old.
I suffer from rumination/depression and anxiety.
My medication had made me aggressive not ideal with little ones.
Top tips-
Walk every day
Bikram yoga (I had to push for this with my husband looking after the kids) amazing for the mind my salvation.
Vitamin B complex as many omega 3's fish oil and flaxseed oil tablets I was taking fish oil 3 times a day.
Something to look forward to in the near future (a goal) do something you love (mine is art)
Balance (some time for some headspace)
I also used an Application for iPhone called 'headspace' it has 10 free sessions of 10 mins
Grounding yourself- when I start going off into my head I use my senses to bring myself back to the room (noticing the floor walls furniture ( you can also imagine drawing a line around an object)
I also read a book on CBT on how to erase thoughts that are troublesome.
drink lots of water
Hope this helps, unsuccessfully 10 days off the old medication and into the new finally feeling good.
Xo

[ozmaninireland]

Im off meds last 2 weeks.
Been anxious at times...
Was on a medication for adhd. I can concentrate well without it if i try.
I feel that the benefits of being off it are far greater then any sense of control or mentally together ness i get while taking it.
Hell is only a state of mind.im lucky i have built a strong faith or this would not be possible.

[ozmaninireland]

Great advice
Not alone with the sense of social isolation.
Ever got involved with charities or other community based groups?