I think I have been misdianosed with Schizophrenia - help!

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I have just registered on here, and looking for some help on where to get some advice please.

Sorry to unload, but here is a timeline of my events.

Basically 7 years ago around the summer of 2008, I was on holiday with my family in Canada. I had just withdrawn from a course at university, which in itself was a very stressful process, as I felt like I was letting everyone down including myself. I had not been enjoying the course since the start, and had been feeling very very low (in hindsight, it was the beginnings of depression) for about 9 months.

I was prescribed Prozac and then when on holiday, I became very emotional and went off my food, had trouble sleeping, and was generally very tired. 

I started having strange thoughts about suicide/guilt/anxiety/paranoia, and was admitted to a hospital in Canada - 'voluntarily'. This was because I was having strong thoughts of suicide and I was very tearful/emotional, and I also had a strong sense that maybe I deserved everything, and maybe, that even at that moment I might even be being followed or about to be arrested for something, which understandably made me feel even worse.(This was completely untrue, but I was a mess and seemingly delusional at that point).

I stayed in hospital for a short period, 4-6 days I think, and was discharged with instructions to seek further medical/mental health treatment as a precaution when I went back to the UK. Which I did.

Since then, I have had no reoccurence of this 'episode', and whilst in the Canadian hospital, I realised how low I was, and vowed to make sure I never found myself in that situation again.

I have been on prescription medication since then, with a working diagnosis that has changed overtime, under different doctors/psychiatrists.

However, since Canada, I have not felt depressed or suicidal or paranoid, as I know that the feelings were irrational and that I was in fact going through hard life events.

I managed to get a job, go back to university, complete a degree, and I am almost a qualified accountant with a good job and a nice girlfriend who I love and would do anything for. I have healthy relationships with my parents and family, with a good support network and plenty of friends.

I know I am very lucky to have received help at the time, and I am very grateful in some respects that I am in the position I am in. I really don't mean to sound like "oh, look at me I recovered so well!" etc. It's my current situation which is perplexing!

I am now wondering why I still need medication, 7 years after an 'episode'. My diagnosis was initially 'psychotic episode' by the doctors in canada, which seems a bit dramatic. Nevertheless, the doctors and support staff I saw in the months after returning to the UK have used this 'working' diagnosis, and I seem to be stuck with it.

I have had counselling and saw 4 different psychiatrists, some good some bad. I have seen so many as I moved away for university, back again, and feel like I have been lost in the care system somewhere. I saw a private psychiatrist 2 years ago, as i lost faith in the NHS CMHT psychiatrist who was very unhelpful and didn't seem to care, and actually gave me the silent treatment after I asked at an appointment why I was still on medication. He said that the NHS was under-funded (which it seems to be) and basically told me that was why it had taken 7 months to get an appoinment. All-round frustrations boiled over and I saught private treatment.

The private psychiatrist (A very highly rated Doctor in the UK) said straight away that from my record, it seemed like schizophrenia! And that I should just keep taking the medication if I don't experience any symptoms.

I have always found this logic for taking the medication very unsettling, as I do not fully understand how the medication works or the long term side effects that may be caused. There are many I things I wish to do (donate blood, donate bone marrow... etc) that i cannot do, because of this.

I feel worried that i will be on them forever with no chance of a thorough review, because if i ask the question, can I come off my meds, the answer always seems to be no, just because of a 50/50 diagnosis 7 years ago.

I don't know where to turn now. My parents don't really seem to mind as I am doing really well.

Are there other people in a similar situtation to me? Can they be found on this forum?

Sorry again for the long essay, and I hope that I do not sound too ungrateful for the help I received in the early stages.

I have no plans on suddenly stopping my daily medication (even though I frequently miss a dose by accident and seemingly have no side effects.) I understand that there could be severe withdrawel symptons. I am prepared for it to take months, years, longer, to come off. I just want to know where I can get a plan of action for how to deal with this really.

many thanks

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5 Replies

  • Posted

    Richard, I'm not an expert and the only antidepressant I've ever taken was a short course of amitryptiline 45 years ago. I am, however, a former general nurse who's kept up with advances in medicine. The symptoms you describe during your holiday - trouble sleeping, anorexia, suicidal thoughts etc. - do sound suspiciously like some of the lesser-known side-effects of Prozac (which has been documented as being at the root of a number of suicides and even murders). What's not clear from your post is whether you were still taking this drug at the time of the episode.

    I'm also wondering what drugs you're taking now, and whether you're actually on an antipsychotic.

    I haven't lived in the UK for 40 years, so don't know a lot about how the system works. However, I have to say it seems unlikely that your doctors would keep you on medication for so long if you really hadn't had any psychotic symptoms at all during this time, and if your original symptoms were as mild as you've described. I think you should ask for a second opinion within the NHS. I do know that your doctors are obliged to comply with this request, but I also know you'll have to be calm and courageous, and stick to your guns. You'll also be put on a very long waiting list.

    As you very wisely say, you must on no account stop, or even reduce, your medication without medical supervision, as too rapid withdrawal of antipsychotics can cause a more severe psychosis than the original symptoms they were prescribed for.

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    • Posted

      Hi there,

      I was still taking prozac at the time of the episode.

      What i didn't say in my original post, is that although I tried to come down in dosage once, about 5 years ago, i was under stress during my new degree (which I went onto complete), and purely because of exam nerves and precaution due to what happenend with the first episode, they put the dosage back up again. That was with the first psychiatrist I saw in the UK, who was actually very good.

      I then moved back to university for my final year after the summer break, and came back, and when I asked for a review, it took 7 months, with a different psychiatrist, because i was low priority. That was when I went private because I felt like I was getting nowhere with that doctor.

      Im currently taking 15mg aripiprazole and 150mg venlaflaxine daily.

      Most people i speak to about this topic can barely believe it because I do not experience any symptoms and haven't done since the little blip 5 years ago.

      Thank you very much for taking the time to reply. I am seeking advice on other forums.  Some people have recommended that i get hold of my medical records if possible to clarify everything

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    • Posted

      I see, Richard. That clarifies things a bit. But since, as you say, you've been OK and without major stress factors for the last five years I don't see why your mental health team can't consider a very small trial reduction to see how you go - preferably not of both meds at the same time as that can muddy the waters. It's not as if you're on the minimum dose of either of them, so it would seem unreasonable not to try a reduction. In any case, if you hit a problem, they could reinstate the original dose with no ill-effects.

      Although I worked in the NHS in the 60s and early 70s I don't know a lot about how it works these days - apart from my experience of my mother's last years. However, I suspect you're being fobbed off because it takes resources to monitor someone who's on a withdrawal programme. If this is indeed the case it's absolutely disgusting, because both drugs carry significant health risks, especially when taken long-term (as I'm sure you're aware). Obviously, in cases where they bring about a real improvement in mental health it's worth taking the risks, but all antipsychotics and antidepressants should be given at the minimum effective dose.

      Requesting your medical records sounds like a good idea. You couldn't do that in my NHS days, but I know it's possible now. Have you tried approaching MIND or SANE, both of which are UK mental health charities? (You can google them.) I don't know how much help they could give in your case, but I know they can direct people to all kinds of other resources.

      I really hope you can find a solution. It sounds as if you're doing all the right things to start the ball rolling.

      With very best wishes,

      Lily

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  • Posted

    There are couple of good reads that may help clarify things for you. "Saving Normal" is written by a Dr who was involved in writing the DSM IV. Also "Harm reduction guide to coming off psychiatric drugs" by the Icarus Centre. Long term these antipsychotics have been shown to cause permanent brain damage so you don't want to be endlessly on them UNLESS it is the only way that you can function. All psychiatric diagnoses are subjective, so you are right to question them. Good luck.
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  • Posted

    Hi richard

    im going to try n keep brief as poss, I had similat episode 7 years ago also, ha must of been somethink in the air oj any ways my symptoms were paranoid delusion I thought my mum tried to poison me daft yes I no shes the most supportive caring mum ever , also combined with mood of ups and down but not so much as to be bipolar , I also had a bit of thought disorder at the time, it was a short episode, since then I have seen many psychiatrist and I no mentsl health system is in dire straits and has been for a long time,

    I hadto request and pay 50 pound for medical notes from gp as when I kept asking the label of illness they just ssid psychotic episode and they treat symptoms as they dont like to give labels, only when requesting my medical notes , I then discovered I have also been diagnosed with schizophrenia! Total bumma, I have been on aripiprizole ever since I tried prozac at one point and it nearly killed me as the 2 are not supposed to be taken together,

    I only triedprozac as mood was blunt flat effected from aripirizole alone' anyways , I have tried numerous occassions at comeing off meds with psychiatrist supervision everutime unsuccessful , firstly took about 1 year symptoms to reappear then after commencing aripirizole again 6 months for symtoms to reappear, so over a 7 year period I have tried and my symptoms come back I have paranoia and thought disorder , it really gets me down, becsuse I hate taken aripiprizole it gives my side effects , you probolycant telltne diffetence noe as youve been on so long with no breaks, but iv had a few big gaps off em and I start to feel lighter brighter everythink really but then after certsin smount off meds , symtoms do appear, it gets on my nerves as I feel trapped, as bein a victim to a horrible tablet , and illness, going rou d n rou d incirles, this is my petsonal experience yours maybe different its a long haul and tiering too, I think you should be given the opportunity to come off meds as we all have rights especially now your well, but psychistrist explained thst sverutime meds stopped snd illness occurs this is very damaging to the brain recovery, us as people suffer confidence building afterwsrds etc, snywsys I have my psych appoint on tuesday to see if I can have an additional anti depressant , I might adk for venafelaxine the one your tsking I will see what he recommends as am feelin low and tiered, amd consysntly hungry , as long as he doesnt prescribe me prozac with my abilify and try n kill me like my previpus psychiatrist did then I should be ok!

    Ps soz not so brief just mental health is so in depth theres no 2 ways about it ha, hope to hear from you soon

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