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.

Being sad and angry about what has happened to you is entirely understandable. If you want to know whether the treatment was correct I think you need to speak to an independent medical expert. I think it highly unlikely that you were in a suitable frame of mind at the time to have made complex decisions about your treatment.

Have you tried any counselling about your feelings? It might help you clarify what further action you feel you need to take to help yourself find peace with what's happened to you.

So sorry to hear what you are going through although I’m surprised a GP told you not to inform yourself of side effects. In any case it’s happened now and you have to live your life. You say it may eventually go away? That’s a positive to look forward to. In addition you could speak to specialists, maybe a newly available treatment may correct/lessen it? Maybe you should also try counselling? Anyway take care, you sound understandably down.

Retain a solicitor and learn what your rights are. Being told not to advocate for yourself by researching these medications is very alarming.

Oh my goodness I’m so sorry your going thru this. In my 30s I was on some very strong drugs that cured the orig problem but have left me with a bone disease that iwas never told about. Please get advice from as many people as you can. Local pharmacy would prob be a good start, keep going back to doctor or practise nurse. Maybe alternative treatments? Massage, acupuncture, reiki? Good luck!! Would like to know how you get on

Thank you all, I am always positive every day for the amazing things I do have - a good home, food, two beautiful children, an amazing loving and supportive husband - but none of these things can completely make up for the fact I don’t have my good health.

I did look up the possibility of suing the GP who did this, but as it was 3 years ago, it is now probably too late and it would cost too much for probably no guaranteed return. Plus it would be a lot of stress and it would only be me trying to make myself feel better in an unproductive way.

I have days when I am very down about it but have accepted that I was very very unlucky to react after just a week on the medication (‘bloody bloody unlucky’ as a psychiatrist told me once) so the best way to live life is to move forward. Do I feel bitter sometimes? Yes. Am I going to try and look on the positive and carry on? Yes. Life is too short to hold grudges.

Thank you again for your responses. I feel a bit better for them.

Tardive Dyskinesia is a horrible condition, I am very sorry you are dealing with this.

I’m saddened that your GP prescribed these strong drugs without referring you to a psychiatrist. I wonder if that’s something you need to explore because that’s unusual.

Are you able to say what medication you were prescribed?

I'm so sorry that this has happened to you. Telling you not to look at the side effects would be considered quite unethical nowadays. Were you even told that this side effect could happen and to inform your GP if it did?

Tardive dyskinesia is a stupid annoying ridiculous and pointless condition, I agree, but it is nowhere near as bad as watching someone you love - my brother - die slowly from cancer last year aged 35, so I am ‘lucky’ in some respects...

I think my GP was very aware of my reluctance to take any more psychotropic meds as she had prescribed a lot before the Pericyazine and I had expressed a fear about taking any more. I had already taken diazepam, zopiclone, tried sertaline and Citalopram unsuccessfully (I only took a few pills) and then was so desperate at being so completely sleep deprived after a week that I was willing to try anything. At no point did she ever refer me to a psychiatrist to get a prescription for the stronger drugs. It was, ironically, Citalopram that saved me from going mad - I took it after the Pericyazine - but if I had taken it originally instead then I may never had got TD. Hindsight is a great thing...

I hope my story can be a warning to others to research your medication and be your own advocate. I truly wish I had and am paying for it now. I actually self diagnosed TD as my stupid GP refused to believe that I could get it after a week and (typically) said it was down to anxiety..! I’m sure no one with anxiety ever has involuntary movements! 🙄😂

It was only after I saw the fifth neurologist privately that I got a confirmation. He was great, but it had been so frustrating that I had to see so many before I was diagnosed. I guess they don’t like or want to admit these drugs can cause serious harm.

No, I was never told that TD was a side effect. I think my GP probably knew that if I had known about it then I wouldn’t have taken the Pericyazine, hence not telling me. I have days when I genuinely hate myself for not looking them up - I had done for the other medication so why didn’t I for the worst one?! I guess I was just very ill.

They would admit that the drugs caused harm if they had followed all the guidelines when prescribing them as ultimately it would be the drug companies responsibility not theirs. The drug info states that "it usually but not necessarily occurs after prolonged or high dose". That means that it could occur after short term use however rare. I think that the GP was probably negligent in dismissing you when you told them about it after a week.

I have days when I genuinely hate myself for not looking them up - I had done for the other medication so why didn’t I for the worst one?! I guess I was just very ill.

It's not your fault. They should have told you.

The fact that others have it worse does not take away from the impact of your situation on you.
YANBU.
However, you have to live your life the best you can now and you will continue to suffer with the sadness, disappointment and anger you feel.
I think you need to seek counselling to help you find a way to deal with it so that you can find some peace.
I would suggest you get legal advice as you may still be able to do something and it could stop this happening to someone else. And you need to see a counsellor who can help you put it behind you. You need to move on but it's not easy.
So sorry OP

I have developed a small hand tremor because of psychotropic drugs. It isn't great but it doesn't stop me doing anything! I would rather take my medication and be able to function and have the tremor ! I understand that it's making things difficult for you and you probably need to discuss it with the doctor.

Thank you all. RayRayBidet you are correct - I am going to continue to feel sadness and anger without addressing it properly. I did have online CBT and saw a psychologist about a year after I was diagnosed so I have addressed some issues to do with the feelings of embarrassment etc I have about my TD, but not really about the anger and sadness I feel towards my GP. I saw her the other day at my surgery and she walked past and smiled at me - I just shot her a dirty look and thought sad thoughts.

I will look into some more counselling and possibly more legal advice, as I think it may be worth seeing what could happen.

I don't think this is hugely different from the kind of thing you might experience if you had randomly chosen to get the bus into work instead of driving and then been injured in a collision. You made choices that put you in the situation, but the actual injury is due to circumstances completely outside your control.

You made choices and decisions, but they were the kind of choices that everyone makes ALL the time, and usually they have absolutely no severe consequences (like taking the bus in my story above).

I think the key problem for people in this situation is accepting that the world doesn't work the way we are told it does. Being a good person doesn't mean you get treated well by the universe. Terrible things happen to perfectly good people. We are told so very often in our childhood that good behaviour will be rewarded that when something awful happens to us, we can end up believing it means we did something terrible wrong. But it is a totally flawed premise.

OP you didn't do anything that anyone else doesn't do all the time. You aren't bad because it happened to you, you are just spectacularly unlucky. You didn't deserve this, and it really absolutely isn't fair, or a reflection on you or your decisions. If you can make proper peace with that then you will really be able to begin to move on from this awful event.

Thank you M3lon for your kind and insightful post. I am going to stay positive and be philosophical about the whole thing and not let it affect me too deeply. I think if I ask the question ‘why me?’too often it will eat me up.

I’m sure if it was ideal world, the decisions I made at the time would have had no bad consequences- but this is real life, and I have to accept that life doesn’t always give you what you’ve expected so as they say, if it deals you lemons, make lemonade 😆

have your side effects been reported to the yellow card scheme? you can do it yourself

OP I realise this might not sit well with you

but if your GP was in a sort of emergency position - mention of a head injury makes me think that - then they would have thought they were acting in your best interests?

I have anxiety and depression so have taken a range of drugs on that point. I also had a spinal injury so took a range of drugs to address that. I know the side effects of all them could be pretty dire but I also had a severe injury which needed to be treated and sometimes even the doctor has to do a "wait and see" thing.

were you in a position where you could process the information "this has a risk of TD" and would it have affected your choice to take it if they said "1 in x number of people get it after taking this"?

I just wonder if suing the doctor is the right thing here.

It’s a sad truth that almost all medications carry the risk of side effects. I can understand the GP advising you that in their opinion it’d do more harm than good to look up the side effects, she couldn’t actually prevent you from doing so so I’m sure she felt confident in giving her own opinion on the utility of researching side effects but as you say, the decision not to was ultimately in your hands.

If the medication was prescribed according to clinical guidelines and you’re one of the unfortunate few who’ve suffered serious side effects it doesn’t mean the doctor did anything wrong in prescribing what they did, just that there will always be a percentage of patients who react badly and it really truly sucks that this time it happened to have been you.

I don’t think you have any claim against the doctor, they prescribed what they believed was the right medication for you at the time and unless they were way off the nice guidelines their practice is defensible. It sounds more like an issue of struggling to come to terms with what happened and accept that you can’t go back in time and change the way things went. Counselling might help.

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.

You have every right to feel the way you do btw, I’m not surprised you’re struggling with acceptance. But maybe acceptance will be easier to find eventually if you can stop looking to blame, if that makes sense? The GP did the best they could to try and help you. It was a bit iffy they advised you not to look at side effects, but if you’re a particularly anxious patient who has a tendency to research them obsessively and decide against treatment that could help on the off chance you might get a rare side effect I think the advice is sound (and it is only advice).

That's proper shit.
Although I'm not sure why your GP was prescribing what is a relatively rare antipsychotic (I've been a mental health nurse for nearly 5 years, trained for 3 before that and have never heard of Pericyazine) this usually the realm of psychiatrists for obvious reasons. Psychiatrists also do not prescribe without first discussing the side effects unless someone is acutely unwell, at least non of the psychiatrists I've worked with have ever just allowed someone to blindly accept medication without a discussion first.

I know that's no help but if be putting in a complaint at least about the GP. Once they get to the point they are trying multiple psychotropic drugs it should be deferred to someone with more expertise, unless of course your gp specialises in mental health.

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 is not, or at least should not be true for antipsychotics. They carry side effects (known as extra pyramidal) that can be life changing and are irreversible. These side effects are quite common. I've supported hundreds of people to start antipsychotic medication and we always have this discussion beforehand unless They are too unwell. We also very closely monitor (or ask the service user to report to us) the side effects so the medication can be stopped if we see the onset of extra pyramidal side effects.

I see, Formerly, and I defer to your experience on this. So I guess it’s possible OP’s GP was negligent in prescribing a psychotropic medication without doing the due diligence you say is typical? I’m surprised she prescribe it without being a psychiatrist.

Gp should have referred to trick cyclist, they are experts, she was clearly out of her depth. Sorry for your trouble op. You might look at no win no fee lawyer.
Also try a support group? Survivors are 'out there' and some quite ill but very radical. More mainstream groups e.g. Mind may help on legal and counselling side
Good luck

OP I really feel for you. Without being toooooo outing, someone I love had been prescribed a terrible drug as a late teen a few decades ago. This drug is now blacklisted for children and not routinely prescribed anymore. This loved one was on the drug for more than ten years, closer to twenty, and wanted to come off it. They went to see their GP, who advised a 6 week taper and then was left to it.

This person had a catastrophic breakdown. Severe depression and suicidal ideation, TD, physical pain, intrusive thoughts, muscle spasms, reactions to chemicals, a reignition of a dangerous allergy that had laid dormant.

The GP tried to tell him that it was because this drug had been keeping those symptoms at bay all these years. We did our own research and eventually contacted an expert in the field. This person has had to cut down their medication (as the GP initially DOUBLED the dose of it when the breakdown occured) mg by mg and is just at half the dose two years on.

The heart break and all round awfulness this has caused is devastating. This person will never be the same and it has ruined three peoples lives. The evidence IS there, READILY available. You have been failed, the person in my life has been failed. I wouldn't rule out suing - we are part of a focus group being led by a lawyer at the moment.