Life destroyed by antipsychotic meds

Sadly I think your brain injury and depression have coloured your opinions of professional medical personnel Yogadatti They spend so many years training and for the most part work incredible hard Some illnesses are not easily diagnosed they can be complex and present differently in different cases. drugs are not an exact science as no one body will react the same and indeed some patients can be very insistent on what they expect to be given The doctors are not infallible

Blimey yogadatti that's the medical profession dismissed then isn't it?
I think your sweeping statement is both ridiculous and untenable.
Do you know better?
It takes years and years to qualify and gain experience as a medical professional, and only seconds to consult Dr Google and be a self-appointed expert.

Just wanted to add NooNoo that it might help you to try and rethink this a bit - your thread title says that your life has been "destroyed" - that is a very black and white and maybe slightly over the top word. Your life has indeed been changed with a result that it is not what you might have wished, but truly it has not been destroyed.

I spent much of my life working with people with serious disabilities and their lives were different from how they might have wished, but they wrung every drop of value from them.

This IS NOT a "pull yourself together" or "there is always someone worse off than me" unfeeling statement but just an attempt to ask you to "reframe" your problems a bit. As long as you feel your life has been destroyed, then you will never feel satisfaction in what you CAN do. Count your blessings seems trite and trivial when you are suffering but it does have a value at some level.

I do not blame you for being peed off with the hand you have been dealt; but a lifetime of feeling that will not help you to enjoy those things you can in life.

I know it is hard when you feel so down to see that there are good things in life; but it is worth the attempt as that can be part of the cure.

It does sound a bit "Pollyanna", but has great value - I have lost a great deal of my mobility at a younger age than I might have wished and my OH has PD, and I too became very depressed; but now I try and concentrate on the things I can actually manage and I have found this to be a help in this situation.

I do actually think through each day 3 things that have gone well and that have made me happy. It really is worth totting them up each day - I am sure you are totting up the bad things! - at least it will give some balance.

One other thing that the passing years has taught me is that it really does not matter one jot what other people think!!

I hope you can try and get the best out of the good things in your life; and that you and yours have a lovely Christmas.

Yogadatti that was a very harsh and sweeping statement. Sorry if you have had bad experiences in the past. Your post is not helpful to NooNoohead.

It is a very sweeping statement to suggest that "GPs do not know what they are doing half the time." Clearly that is a ridiculous statement.

NooNoo - my DD had a revolting dirty piece of cloth that she dragged everywhere with her - she called it her NooNoo. I am sure you are neither revolting nor dirty

I used to work for a brain injury service and know that a head injury can produce some symptoms that are very difficult to describe or define and that are very much hidden from view and very hard indeed for outsiders to understand. I remember the battles I had with the benefits agency to convince them that people really did have serious problems. There was nothing external to see - things like being unable to sequence an activity - putting your trousers on before your pants for example!

Living with a brain injury can be very trying. I am so glad that your family is by your side to help you through.

Noo.......I don't think GPS know what they are doing half the time.
They read about the effects of the medication out of a book...they do the usual, "don't worry about side effects they are rare"....but what they don't take into account is that someone has to be the statistic.....I know, cos I am that statistic.

Personally, I would complain, complain, complain....the trouble is with this country is
No one wants to make a fuss...doctors aren't infallible,but they should know more than the patient, and most don't if you have anything complex. I have brain injury caused by bad medical treatment and depression cos by bad doctoring.....

Sadly I do think the only people, who understand the frustration are those that experience neurological difficulties and depression and anxiety caused by them, like myself .

I am glad you have such a supportive kind husband and a lovely child. They will help you through this I am sure.





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Thank you once again for all your replies.

It's been over a year since I took the Pericyazine so the effects should have had enough time to wear off. To be fair, they are so much better than a year ago when I was really bad - my lips were puckering madly, I was making kissing noises and my tongue was clicking along with the lip smacking, grimacing and dystonia which made my neck twist and my abdominal muscles tighten. Quite scary but def much better than that now, thankfully!

I do still get funny post concussion symptoms: I still find I have slight acquired dyslexia, I've lost my imagination and 'mind's eye' and I get very strange moments when I wake up when my brain struggles to remember anything - like my whole knowledge / memory of the world / facts / life etc has disappeared. ??

You are all absolutely right though - most people don't notice and provably couldn't care less if they did. I am very self conscious of the lip smacking and funny mouth movements / facial expressions I make, but my psychologist pointed out that I prob don't do this as much as I think. The worst thing is doing it somewhere when it is very quiet, or pulling an odd face around others - then I get more self conscious about it.

grannyactivist - wow, two family members with TD? What are the chances of that?! What meds did they acquire it from? How long have they had it and how severe is it? Do they manage ok?

One of the five (!) neurologists I saw said he thought I was predisposed genetically to TD having been born prematurely and weaned off heroin, so I should never have been prescribed the neuroleptic with my medical history and head injury. Hindsight is a great thing..!

Time will ease things, I'm sure.

I am so sorry for how you find yourself now and with the best will in the world the more you think about it and worry about it the harder to get better so the CBT and distractions are good exercises I should add that you ve been very lucky to get CBT as here there are waiting lists of more than a year

What I m a bit muddled about is was the major mental breakdown caused through the minor brain injury or was that a separate illness

I don't think suing a 'kind doctor' who has worked so hard to give you medication for what you have presented with ...insomnia and anxiety , is your answer Nor do I think there is any relevance in looking stuff up we can really bring on side effects by waiting for them to start You sound as if you have been taking a variety of drugs for your mental health issues which you say didn't work I m sure you were asking for more choices and as you say your doctor gave them in desperation to help you

My mum was given some sleeping drug when in full throws of Alzheimer's that gave her a mouth tremor however it did stop a few weeks after she came off the meds.... how long since you stopped taking them?

Hang in there and you may well hopefully find it all disappears given time you sound as if you have a supportive family and you say you still socialise and get on with life no point in worrying about future jobs etc worry will only make things worse use you CBT and distraction exercises, do relaxing things swimming, sauna if you can in your free time and try your hardest to see it as a passing phase easier said than done I know but if you are naturally an anxious person it will just enhance your panics

Good, good luck So horrible when things are out of our control

So sorry you are living with these problems at the moment . Brain injuries are very difficult to treat and your GP was trying to help . I think suing the GP would add so much stress and could possibly make your symptoms worse . My Son sustained a brain injury caused by lack of oxygen while he was alone and unconscious whilst having multiple pulmonary embolisms . His symptoms are very strange , he does not `see things` or rather he sees them with his eyes but his brain does not interpret correctly . hence he gets very frustrated and quite low at times . Saying all this - he has improved slightly over the last 6 months and I guess he will keep on improving but at a painfully slow pace . I think that brain injuries are like this for most people . Are you sure that the TD is as a result of the Meds ? Could you give it a set time ie 18 months to see what improvement you get , maybe giving yourself this time will take the pressure off and give yourself time to heal . I live with a neurological condition myself and know how distressing it is but other people hardly notice xx

I think ' Travel hopefully' should be your mantra. Give it time and the TD will likely slowly settle down

NooNooHead (love the name ) I know that to you it seems your involuntary movements are hugely noticeable, but to others they're rarely worthy of note; I say this having two family members who have the condition. Like you they acquired TD through taking drugs to help with mental health problems, but the reality is that without the drugs they could not have continued to live reasonably settled lives. You know from your experience of CBT that the key to living with the condition is to change, challenge or adapt your thinking and you also know the benefits of getting support during 'low' periods.

So, welcome to the Net of the Grans where we have advice and support, listening ears, warmth - and an odd contrary opinion just to keep everyone on their toes.

Have read your post and couldn't just read and leave. So very sorry for your difficulties and so glad that other posters have some good advice and positive input for you to read. Am of the persuasion that time will change things in spite of how it feels today - your daughter is one very lucky girl to have such a devoted mum - she needs you to be a completely positive one too.

Hang on in there - you have so much going for you. Your loving family is your greatest asset. They will be with you while the medication's effects wear off.

You must also remember that others may not be as conscious of your tics as you are - my OH is very aware of his tremor, but really others do not notice. Take heart from this.

Noonoohead I am sorry about you have suffered so much following your injury, but you wrote: I was helped by my very kind GP who prescribed various psychotropic meds to help with insomnia and severe anxiety. One of these was a typical antipsychotic that she gave me in desperation after other meds didn't work (antidepressants and benzodiazepines / sleeping pills).

Two things stand out.
1. You say your GP was very kind.
2. She prescribed the anti-psychotics 'in desperation'. Presumably after pressure from you.

And you're thinking of suing the woman? Doctors are human too, have feelings like everyone else, and the vast majority of them do their best for patients.
No wonder so many of them find medicine such a stressful career choice.

Reading this for the first time, my first thought was, how can we know how many of your distressing symptoms are due to the medication, and how many to the original brain injury, however mild?
The workings of the brain are still very mysterious, after all the research. But one thing is agreed, it has a power of self-healing , especially in younger people like you.
I hope and pray that your psychologist is right, and in time your symptoms will slowly improve.

Thank you all again for your kind replies.

I do try to relax as much as I can, and have had a lot of CBT, psychotherapy and mindfulness training to help me to accept and deal with things. These techniques are helpful and I do try and employ distraction techniques to take my mind off all the odd symptoms etc.

I do listen to my family and I know I am blessed to have such supportive friends and family around. Without them - and my daughter in particular - I would have felt severely depressed a long time ago.

Hopefully this too shall pass. My psychologist says it may take up to five years. I guess in a lifetime, that is nothing. I'm praying that it will go by then and in the meantime, am trying my best to carry on with life. :-)

NooNooHead so sorry about all the things you are struggling with at the moment. Suing will not change anything and will just add to your stress.
Hang on in there and try to relax as much as possible so that you aren't too wound up about anything. Your family sound very supportive so lean on them and do listen when they say things are not as obvious to others. When we are the one suffering we always think others see far more than they do which is just not the case. If you can relax a bit more it may well help. As Jane says, 'this too shall pass'. (((hugs)))

Possibly very hard to be exactly sure what might be the root cause of your problems. I expect you've had quite a cocktail of meds following a brain injury and mental breakdown. Your GP will have been acting with the best of intentions and may have prescribed that specific medication due to potential interaction with other meds? I don't know. I don't suppose you'll ever know. Its the not knowing and looking for something /someone to blame that sounds like its torturing you. Its a rotten situation. There is daylight though, it may not be permanent and you sound like you're lucky with your family.
My motto is 'this too shall pass'- and it will!
Good luck.

Yes your life has changed and it's difficult to accept that but work with what you have. Draw on the support of your family , you survived your brain injury for a reason, find other things you can do. Try a blog, you are clearly articulate and may find other help out there in the wide world
I agree with your GP too much internet research does not always help.
Try to stay positive, you are doing well. Embrace a new and different life - good luck.

Thank you for your reply.

My GP said specifically not to look up the side effects of the antipsychotic so it wasn't something I was aware of. I was only on a week's worth, so she obviously didn't think the reaction that I had was going to happen. It was a first gen drug so it was one of the older antipsychotics.

Yes, I was probably naive and silly not to research the side effects, but I had researched every other drug I was given and didn't want to take any more - this is why she knew I was worried and told me not to look up the side effects.

I agree that suing my GP isn't the answer, but she isn't the one that has to live with constant involuntary movements daily, the feeling of my tongue moving around all the time and feeling too big and the fact it may not get better. I suppose I am taking out my anger on her in a way... which I guess wouldn't help anything.

There aren't any help groups for this kind of thing as I doubt many people have TD in the UK, letalone would have heard of it. Perhaps I could join a group for people with Parkinson's or dystonia... I may look them up.

Life goes on and does get better. I guess I am struggling to accept this is who am I now. :-(

I'm a little confused here, tardive dyskinesia is not an uncommon side effect of some of the meds you mention. Your GP should have been aware of this and warned you. I'm out of touch with current medication so can't advise. You are angry and upset but suing the GP is not the answer, everyone reacts differently to medication. The tics etc you mention seem huge to you but others do not see them as such a big issue believe me.
Don't give up, talk to your mental health nurse, is there a support group for others in your situation.?
Sounds like you have a supportive family, trust them , this too will pass.
Bon courage