To be sad and angry I was injured by psychotropic drugs and may never recover

[NooNooHead]

Three years ago I suffered a head injury, post concussion syndrome , and severe anxiety and mental breakdown. I was really very ill and was given a lot of psychotropic drugs including an antipsychotic that has left me with a permanent drug induced neurological involuntary movement disorder called tardive dyskinesia. The movements are similar to Tourette’s-type tics, and it is both disfiguring, painful, socially embarrassing and annoying- albeit supposedly mild - and there is no effective treatment or cure (apart from time. Even then, there is no guarantee it will ever go away.)

I know my GP was only doing her best to help me in my time of crisis, but I still have deep underlying feelings of anger and anxiety about the whole thing, and having been injured and left with an iatrogenic illness, very sad that this is my life now. Although I have accepted it more or less and moved on in some ways, I still can’t completely get over what happened as I feel it was avoidable if I had been better informed of the drug side effects (I was told not to look them up). I realise that I was really probably responsible for my health, but at the time I lacked the insight into how ill I was and completely trusted my GP implicitly as I was very ill and desperately needed treatment to get better.

AIBU to feel so sad still and mourn the loss of the life I once had? Or should I just accept it and make the most of my life as it is now? I realise my condition isn’t life or death, but it does involve a degree of suffering that affects my life on a daily basis.

And on a personal note, GP's don't know shit about this stuff and shouldn't be dabbling in it. I experienced a period of depression shortly after having DS and went to the doctor for help. She knew I was breastfeeding as it had been mentioned several times during that appointment and was also on my notes. She prescribed me Prozac, which is contraindicated for breastfeeding mothers and (if I remember rightly) is transferable through breastmilk. I only discovered this after carefully reading the information in the packet - which everyone should do anyway, but she should not have been prescribing it to me.

Unfortunately this is common because doctors still think they are god

No, I was never told that TD was a side effect it’s not usual practice for a doctor to go through every possible side effect when prescribing a medication, they simply wouldn’t have time and it’d put people off unnecessarily as the chances are slim.

This really winds me up. The side effects can be life changing and absolutely should be warned about. It is a doctors job to warn people. I love the NHS, I think as a first response in an emergency situation we have the best system in the world, but GPs SHOULD NOT be dabbling in this stuff if they are a) not going to be trained effectively b)not going to seek out effective and up to date training and c) NOT GOING TO APPROPRIATELY INFORM THEIR PATIENTS.

Patients cannot give informed consent if they have not been informed.

TwllBach so so sorry to hear about your relative. I can totally relate to what your loved one went through. My initial TD symptoms were both very frightening and awful - but I should have known something was up when I had a severe dystonic reaction to the drug when I was on it (back arching, grimacing, restless legs, oculygric crisis etc). I then had the whole gamut of TD symptoms from tongue movements, grimacing, lip smacking, neck and arm dystonic movements, pailialia, abdominal muscle tightening, making kissing movements with my lips - it was horrendous. I have much milder symptoms now but these symptoms I have learnt to live with. If they had stayed as severe as they were initially I would have become a social recluse and been very suicidal.

I’m so glad there are people on here who can relate and understand. TD is very stigmatising and sometimes I feel very alone.

I also have to be so careful what medication I take now too. I only recently had an elective c-section and I gave the anaesthetist a whole list of drugs I couldn’t take. Even the surgeon who operated on me said he only ever read about TD patients in textbooks, which made me feel even more freak-like. 😂

I hope one day they invent medication without side effects, or can at least screen patients in an affordable east way that would avoid any bad reactions to side effects for those who are most at risk. It would help avoid being injured like I have.

TwllBach would you mind PMing me the name of the focus group you are part of please?

I also recall that it was a different GP who told me to go cold turkey from the Pericyazine (dreadful advice too..!) when I told her about the grimacing, so she wasn’t much better either. I remember the withdrawal cold turkey was utterly horrible - I literally sat there at my DD’s school disco feeling like my legs were separated from my body... it was really odd. Ha! Oh to be me...!

Focus group might be the wrong word... maybe I mean group action? Essentially, a huge number of people that were given the drug as children were all represented by a law firm. The person in question just missed the cut off point age wise for that group but the same firm have started the same action for people that were 'young adults' and prescribed this specific drug. I will chat to the PinQ when I get home from work and see if I can pass on specifics.

I totally empathise with the reacting to other medication - my friend went through a period of coming out in a rash just from inhaling perfume/body spray from someone walking past them in the street. All last summer he would come home with swelling and rashes from being in the sea (his line of work) when previously he had never reacted before.

It's a terrifying thing to go through, and I'm so sorry you have experienced it.

Have you found specific forums for support? I know my friend did and he found a lot of solace in that. I can pass those on too if you wish.

NooNooHead I hear ya. I developed dystonia, (not dyskenisia) from being given Laractil (chlorpromazine) for what turned out to be a personality disorder. In my case I was warned. so the medical professional prescribing was not to blame but I stupidly did not stop taking the drug immediately through fear of being worse mentally. My fault entirely. I feel I have screwed my life up and feel much guilt and shame. Finally plucked up the courage to ask GP for a referral to a neurolgist to see if they can do something for me. I feel like a waste of space to the NHS at times.

to you, it sounds awful what you have been dealing with and it is disgraceful that you were not warned of the side effects. I do find that professionals often deny that side effects. I have since seen other professionals who downplay the effects the largactyl had on me and some try to persuade me that usually dystonia from drugs is only temporary; well it can be if they quit the drug early which i didn't.

Like Formerly I am an RMN with nearly 20 years experience and had never heard of that drug before.

I would be surprised if a psychiatrist would have prescribed what is from a very ‘old school’ group of antipsychotic medication to someone who is neuroleptic naive, as in never taken any antipsychotic medications in the past.

Clearly the GP did not act maliciously but I do wonder if there needs to be wider restrictions on what GP’s can prescribe.

The other medications you describe are anti depressants and anti anxiety meds.

I’m sorry for the condition this has left you with, it really is a horrific condition and i can wholly understand your anger. I would agree that counseling is probably the way forward

Like others I’m surprised that the GP was prescribing that sort of drug. My mother has been very poorly and it has always been the psych consultant (with advice from a psych pharmacy specialist) that has determined her medication plan. The GP has nothing to do with her drug treatment. The balance of side effects v stable mental health is a difficult one. She has no doubt suffered from the medication she’s on but she needs it to stay well. She has to have regular blood tests as the medication she’s on can affect white blood cells making it quite dangerous if unmonitored. I hope one day there will be anti psychotic medications that don’t have such horrid side effects and I’m sorry that you have had to experience some of the bad ones.

I’m a GP and we’re not allowed to initiate antipsychotic drugs (can only continue them once patient stabilised on them by a psychiatrist) and I’ve also never heard of pericyazide, in 25 years of working. I would definitely question your treatment if I were you OP.

Wish I could offer some advice. - I've got a very very mild tick in my arm that only started after taking a certain AD I can't imagine how it is for you as I know how aware I am x

TD is a long known and acknowledged side effect of antipsychotics - you certainly should have been informed. I also have not heard of GPs starting antipsychotics, so you are right to make a complaint. You can still do so because the circumstances mean you became aware of the problem much later than the treatment itself.

However, do you mean that 4 neurologists told you your symptoms have not been caused by antipsychotics, before you found one who said they did?

I’m a GP and we’re not allowed to initiate antipsychotic drugs (can only continue them once patient stabilised on them by a psychiatrist) and I’ve also never heard of pericyazide, in 25 years of working.

I think OP means pericyazine.

In fact she states pericyazine not pericyazide. It is an antipsychotic so she hasn't got that wrong.

It is rarely prescribed in most parts of the UK but maybe OP lives somewhere where it is used. Agree it is odd that the GP initiated though

sorry I spelled it wrong as I've never heard of it, never seen it prescribed in psychiatry, certainly never prescribed it myself. If a GP with no additional psychiatric qualifications has initiated this drug, without the recommendation of a psychiatrist, then I think you have significant grounds for complaint OP.
If the GP was acting on psych advice then you don't I'm afraid.

The drug in question was called Pericyazine and is an old first generation antipsychotic drug and no, I didn’t see a psychiatrist at any point during my treatment. I’m sure my GP was acting in my best interests at the time as I really was very very ill - I hadn’t slept at all for nearly a week and was severely anxious. I remember posting on Gransnet once about this and entitled my thread ‘Life destroyed by antipsychotic drugs’ to which some posters didn’t agree it had been destroyed. Well, actually - YES, it has... I have been to hell and back with my head injury and post concussion syndrome then to have this on top of all of it really made it worse. My future job prospects are something I really worry about - if people are discriminatory against those with known neurological disorders like Tourette’s, what the heck will they say about a rare one that no one has heard of?

Oh well. At least I didn’t end up with something brain damage after I was born prematurely. I had 37 years of being ‘normal’ before my movement disorder I guess.

Oh NooNoo I really do hope things improve for you going forward. It’s really unfair that you have had to deal with this and I’m mindful that us talking about how unusual it is for a GP to prescribe these drugs may make you feel worse and I dot think anyone would want that.

If you have the funds I would recommend some counselling as soon as possible. Otherwise, see a different GP to get referred as there will sadly be a long waiting list.

I do hope things improve for you. I’m not on Facebook so can’t vouch for it but a quick google brought up a TD support group on FB, that may be worth a look.

It's not too late to sue if it's only been three years but the NHS is ridiculously difficult to sue sucessfully (assuming the GP was an NHS GP). In your place I would report the gp to the GMC. This reeks of lack of informed consent.

Thank you, Doyouthinktheysaurus. I am on several FB support groups that have international members including some from the UK, so I am getting real life support there.

To be fair, if you met me, you probably wouldn’t even know I had TD as I do try and suppress the movements and they have lessened to the extent that it is now pretty mild.

I’m always aware of having it though, and recent c-section reminded me how things like stress can really exacerbate it loads. I had a massive panic attack during the operation and it felt like my tongue wouldn’t stay still at all - it was literally thrusting past my bottom teeth out of my mouth. It was so very uncomfortable and I am so bloody glad it was only for the duration of the op.

In response to the PP’s question, yes... I saw four other different neurologists who all said it was either a ‘functional neurological disorder’ (HA!) or that they didn’t want me to be more psychologically damaged knowing I had such ac crappy movement disorder, therefore they refused to confirm it. It was only when I saw the fifth doctor that he said he had been an NHS neurologist before, and had treated hundreds of patients many of whom were ‘falling off the bed with TD’.. (!)

I also remember the psychiatrist said he hadn’t seen someone with TD for about a decade (!), and during my ectopic pregnancy and treatment last year, a student doctor came to see me specifically as bad wanted to write a case study on someone with TD who had an ectopic too. I was so flattered..! 😂🙄