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Struggling to come off my meds (and battling the system)

P

pinkmetalgirl

Active member
Joined
Jan 7, 2010
Messages
38
Location
London, UK
Hi guys,

I'm having a tough time at the moment and wondered if it was ok to share with you some of the things i'm going through :rolleyes:

After being diagnosed, medicated and being very much a patient of the mental health system for over 10 years (following years of struggling silently as a young person) I've finally been making sense of my experiences and getting my life back together. The road has been an interesting one, to say the least - at at times a really distressing one - but i'm still alive and am very lucky in many ways.

After 10 years out of work, I have a fantastic job (in mental health) and a wonderful husband. After learning more about voices , visions and 'psychosis' I've been steadily moving away from my diagnosis of schizoaffective disorder and towards seeing myself as a human being who has been thru lots of trauma in her life and has a very creative brain that has its own unique way of dealing with, and expressing, that.

So, after a year of reducing my antipsychotic meds I finally took my last dose 3 months ago. The first month was pretty tough - 3 voices that I thought had gone for good came back, along with some nasty visions and really bad headaches. Still, we (my hubbie and I) expected it and I took up Tai Chi and lots of other things to help deal with the stress and the voices (which worked pretty well).

Things started going downhill when I had my first psychiatry appt (one month into it). We explained about the meds (taking care to appear reasonable, calm and in control) and it was like hitting a brick wall. Bam. I'd forgotten how big and strong the mental health system can be when you run up against it. The first doc was lovely, but obviously very frightened by the prospect of me being off the meds. I was called back a week later for an emergeny 'formal risk assessment' and I was terrified that I was on the verge of being sectioned. Not suprisingly, my anxiety levels shot through the roof and everything headed downhill - the voices got worse (making me paranoid), I began seeing patterns in things and feeling like someone was cutting in to my head and showing me something important. I held it together, tho, and survived the appt (including the overwhelmingly negative list of statistics about how I was going to end up in hospital, relapsed and would be more likely to kill myself or others (not stats that really made much sense and no stats at all about the possibilty of actually succeeding!)

Post-appointment things settled down again (usual craziness rather than the intense stuff) and although I struggled to concenrate in general and was finding everything harder than before - I was surviving.

Rather than bore you all with the next few appts (except to say that they've been really challenging), i'll cut to the bit i'm struggling with.

For the past week things have taken a turn for the worse - I know enough about the way things happen to me to know that things are unravelling. I can feel my thoughts spilling out of my head and someone/something reaching inside and putting things there (sometimes stopping me from moving/speaking). I feel that some people are not 'real' people (in that they're sent there to observe me) and I'm really frightened by what's happening. At the same time, I'm struggling with concentrating, making decisions (even what to eat/do) is really tough and I keep getting lost inside my own head. I know that although this feels real that I've been through similar before and I recognise that it might be the start of what I call psychosis. I'm getting better at recognising it, I think. The voices are worse too (talking about me not seeing the bigger picture and alluding to something bigger/badder that is going to happen).

Not being able to work and sitting all day at home going crazy really isn't helping my self esteem - it's been so long since I've felt like this I'm having to re-learn ways of getting through the day (my hubbie and I are favouring lists at the mo - very detailed lists - and today is the first day I've managed to do anything on them!). I feel at the end of my tether in many ways (but fortunately am a stubborn woman and have got through things like this before)

Getting support from the mental health services is a no starter (I've had an emergency appt but am not 'ill' enough for the crisis team yet - although they say I might be next week, which fills me with joy) and apart from my hubbie my support networks are all back home (i moved to London a wee while ago and haven't really grown a support network yet). Am working on it tho and might be going to a drop in tommorow (engage bravery drive)

As well as being frustrated (but not suprised) by the mental health services lack of support - I got a letter today (in england we can get copies of the letters that are sent about us after appointments) where the last doc I saw named my diagnoses as 'schizoaffective disorder' (no suprise there) and 'possible emotionally unstable personality disorder' (aka borderline personality disorder). This hasn't been mentioned to me before (i had the diagnosis years ago, but it was removed after a second opinion) and I really don't have any of the signs/symptoms. When I was in hospital (years ago) it was a different matter (I was really chaotic having been traumatised and then re-traumatised by being sectioned/injected/hospitalised). Still, I've dealt with all that and am pretty emotionally stable and sure of who I am (and mostly happy with it).

It feels like a punishment and a way of not providing me with any support. It has put me in a bind as, from previous experience, once they see you through the lens of BPD they interpret all behaviour as confirming that diagnosis. If I ask for help (and I really do need help at the moment) I'll be seen as being manipulative or a drain on resources. If i tell them I'm suicidal (and I'm getting that way) they'll see it as evidence of my instability and poor impulse control. If I question it i'll be seen as being difficult.

The only options I can see are:

a) take the damn meds and be compliant (until I've got some stability back and then come off the medication without telling them)

b) stand my ground but make sure that all my communications with them are 'appropriate' and that I don't ask for help from them at all

As I feel so rough at the mo, the second one seems too difficult - but I don't want to give up and go for the first one. It will feel like a failure and a big waste of time struggling this far. Plus I hate being bullied into it

The BPD diagnosis thing has just kicked me when I was already feeling pretty beaten up. I'm not suprised (I know how the system works) - but am still knocked by it. Really don't have that much energy left anymore

Sorry for the long rant - thanks for listening/reading
 
parker

parker

Well-known member
Joined
Mar 15, 2009
Messages
278
Location
Oregon
Theo Dorpat has a book called: Gaslighting, the Double Whammy, Interrogation and Other Methods of Covert Control in Psychotherapy and Analysis.

i highly recommend this book, it's a little expensive but well worth it. He points out methods used by psychiatric community on gaslighting (control) over there patients. I have found that educating myself on manipulative people has really helped me:)
 
T

terri

Guest
Hi guys,

I'm having a tough time at the moment and wondered if it was ok to share with you some of the things i'm going through :rolleyes:

After being diagnosed, medicated and being very much a patient of the mental health system for over 10 years (following years of struggling silently as a young person) I've finally been making sense of my experiences and getting my life back together. The road has been an interesting one, to say the least - at at times a really distressing one - but i'm still alive and am very lucky in many ways.

After 10 years out of work, I have a fantastic job (in mental health) and a wonderful husband. After learning more about voices , visions and 'psychosis' I've been steadily moving away from my diagnosis of schizoaffective disorder and towards seeing myself as a human being who has been thru lots of trauma in her life and has a very creative brain that has its own unique way of dealing with, and expressing, that.

So, after a year of reducing my antipsychotic meds I finally took my last dose 3 months ago. The first month was pretty tough - 3 voices that I thought had gone for good came back, along with some nasty visions and really bad headaches. Still, we (my hubbie and I) expected it and I took up Tai Chi and lots of other things to help deal with the stress and the voices (which worked pretty well).

Things started going downhill when I had my first psychiatry appt (one month into it). We explained about the meds (taking care to appear reasonable, calm and in control) and it was like hitting a brick wall. Bam. I'd forgotten how big and strong the mental health system can be when you run up against it. The first doc was lovely, but obviously very frightened by the prospect of me being off the meds. I was called back a week later for an emergeny 'formal risk assessment' and I was terrified that I was on the verge of being sectioned. Not suprisingly, my anxiety levels shot through the roof and everything headed downhill - the voices got worse (making me paranoid), I began seeing patterns in things and feeling like someone was cutting in to my head and showing me something important. I held it together, tho, and survived the appt (including the overwhelmingly negative list of statistics about how I was going to end up in hospital, relapsed and would be more likely to kill myself or others (not stats that really made much sense and no stats at all about the possibilty of actually succeeding!)

Post-appointment things settled down again (usual craziness rather than the intense stuff) and although I struggled to concenrate in general and was finding everything harder than before - I was surviving.

Rather than bore you all with the next few appts (except to say that they've been really challenging), i'll cut to the bit i'm struggling with.

For the past week things have taken a turn for the worse - I know enough about the way things happen to me to know that things are unravelling. I can feel my thoughts spilling out of my head and someone/something reaching inside and putting things there (sometimes stopping me from moving/speaking). I feel that some people are not 'real' people (in that they're sent there to observe me) and I'm really frightened by what's happening. At the same time, I'm struggling with concentrating, making decisions (even what to eat/do) is really tough and I keep getting lost inside my own head. I know that although this feels real that I've been through similar before and I recognise that it might be the start of what I call psychosis. I'm getting better at recognising it, I think. The voices are worse too (talking about me not seeing the bigger picture and alluding to something bigger/badder that is going to happen).

Not being able to work and sitting all day at home going crazy really isn't helping my self esteem - it's been so long since I've felt like this I'm having to re-learn ways of getting through the day (my hubbie and I are favouring lists at the mo - very detailed lists - and today is the first day I've managed to do anything on them!). I feel at the end of my tether in many ways (but fortunately am a stubborn woman and have got through things like this before)

Getting support from the mental health services is a no starter (I've had an emergency appt but am not 'ill' enough for the crisis team yet - although they say I might be next week, which fills me with joy) and apart from my hubbie my support networks are all back home (i moved to London a wee while ago and haven't really grown a support network yet). Am working on it tho and might be going to a drop in tommorow (engage bravery drive)

As well as being frustrated (but not suprised) by the mental health services lack of support - I got a letter today (in england we can get copies of the letters that are sent about us after appointments) where the last doc I saw named my diagnoses as 'schizoaffective disorder' (no suprise there) and 'possible emotionally unstable personality disorder' (aka borderline personality disorder). This hasn't been mentioned to me before (i had the diagnosis years ago, but it was removed after a second opinion) and I really don't have any of the signs/symptoms. When I was in hospital (years ago) it was a different matter (I was really chaotic having been traumatised and then re-traumatised by being sectioned/injected/hospitalised). Still, I've dealt with all that and am pretty emotionally stable and sure of who I am (and mostly happy with it).

It feels like a punishment and a way of not providing me with any support. It has put me in a bind as, from previous experience, once they see you through the lens of BPD they interpret all behaviour as confirming that diagnosis. If I ask for help (and I really do need help at the moment) I'll be seen as being manipulative or a drain on resources. If i tell them I'm suicidal (and I'm getting that way) they'll see it as evidence of my instability and poor impulse control. If I question it i'll be seen as being difficult.

The only options I can see are:

a) take the damn meds and be compliant (until I've got some stability back and then come off the medication without telling them)

b) stand my ground but make sure that all my communications with them are 'appropriate' and that I don't ask for help from them at all

As I feel so rough at the mo, the second one seems too difficult - but I don't want to give up and go for the first one. It will feel like a failure and a big waste of time struggling this far. Plus I hate being bullied into it

The BPD diagnosis thing has just kicked me when I was already feeling pretty beaten up. I'm not suprised (I know how the system works) - but am still knocked by it. Really don't have that much energy left anymore

Sorry for the long rant - thanks for listening/reading
Rai, dont ever be sorry for speaking your mind. What an amazing person you are. How proud you must feel about yourself, I am so sorry I never met you first, your insight is invaluable.

Lots of love and hugs

Terri and Cal xxxx
 
H

happiness12

Member
Joined
Apr 6, 2009
Messages
11
hi rai thankyou for your post it has really help me today as well as dont matter be proud post by rabina and fight how to maintain force of mind when hearing voices ive list read alot of posts and learnt alot from others i feel myself i need medication because i am fighting to control my mood voices and parania and for me everthing would be ten times worse and i wouldn't be able to cope on a day to day but i am am for people should have the own choose to take or refuse because that gives the people the freedom for themselves and people trying not to control them.

i also was diagnosed by one consultant with bipolar and disored and now i am diagnosied as borderline personality disorder. trying to get support for myself is really difficult i have no friends in the community wher i live i found groups are hard and my voices and parania dont help me making friends because of my anger my belife systems of myslef and others . i have problems with agressive women even though i can be agressive myself the women voice in my head i call her the devil god ' very negative a destroer of life.

i thought i could do this all by myself and i cant try and talk to my gp ive been told i can't ask for help when im in crisis i do have respite care but recently ive been using alot more because i haven't been able to cope at home. people say that you can't cure bpd and there is noway of helping me. but i want to change to overcome the voices anger and parania i don't want to be like this in five years time. today my whole body has been acking and lifting up my arms i just feel tired and wacked out my stomach is hurting and feel panicky and just want to sleep because i feel so low and had to sleep alot today tomorrow will be different i will make a list todo things and take some time out for excersise. i can't give in to them even though todauyand yesterday have been bad. all i want is some help in direction to know where im going wrong and not have them control me but i can walk with my head high not always like this momnet where i look down to the floor because i amashamed what is my head thankyou for your stories and positive posts take care all of you rai don;t give up i know when things are against you never never quit try to talk to your doctor again and teach them about you your symtoms not that your a name on a book that your more than that you are unique teach him about your voices about your traumas and voices take some positives of what people have written on this posts and show him educate him and the team they might not understand or won't listen but keep trying. happiness12
 
T

ThePayingRoomate

Active member
Joined
Jul 8, 2009
Messages
41
Stay strong.

If nothing else, that's the message I want to send to you. Stay strong.

People often use the expression about walking a mile in so-n-so's shoes... I think you might have run a marathon in mine. Right down to the BPD crap.

It feels like a punishment and a way of not providing me with any support. It has put me in a bind as, from previous experience, once they see you through the lens of BPD they interpret all behaviour as confirming that diagnosis.
The Navy docs tried to hit me with this early on to get their "pre-existing condition" quota to help the bureaucratic bean counters get out of having to pay for my otherwise well documented service connected injury. As proof they used the fact that as an engineering student at a highly competitive school I'd sometimes study with little sleep for days on end and crash on the weekends. I mean, c'mon... it'd be a joke if it weren't deliberately trying to screw me over.

On another note, I have to absolutely show some solidarity with you when it comes to dealing with some of the shrinks out there who seem to go out of their way to be far more intimidating than some of the most malevolent voices that ever manifest in our lives. I've had some voices screw with me in ways that seem closer to a buddy giving you hell... and others that have tormented me... yet the folks who are charged with ensuring my mental health well-being have often been the ones to take the cake when it comes to making my life a living hell of worry and fear.

My most notable example was when the VA sent me to the psych ward and forced me to deal with scenarios that are clearly listed on their records, right there on their computers, which are known triggers for my PTSD. I was fubar'd for months and refused to go to an appointment without someone with a power of attorney present to ensure they didn't commit any more malpractice (which of course I couldn't sue over in the first case due to sovereign immunity... can't sue the gov't unless it lets you).

So I say, stay strong. Don't let them break you down. You know better than anybody what you need. We may be crazy, but we're not idiots. Some docs can't get that through their skulls.
 

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