Feeling suicidal over head injury, and drug induced movement disorder

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I had severe anxiety and insomnia last year after a mild traumatic brain injury and I was so sleep deprived for about a month and a half that the GP considered calling the crisis team... After trying a lot of different psychotropic meds to combat cognitive issues, dizziness and severe anxiety/ insomnia, out of desperation my GP put me on first generation anti psychotic meds and said 'Don't look up the side effects' and there was no patient info leaflet in the box either..

Bloody insomnia, post concussion syndrome and terrible powerful anti psychotics have left me a mess, and after getting an official movement disorder diagnosis of Tardive Dyskinesia this month, I am so glad someone has finally taken me seriously and diagnosed what I believed I had for months. It's such a relief but I hate the fact that GPs can prescribe such strong meds, which I believe only a psychiatrist should be licensed to do, and only for the most serious of cases.

I have oralbuccal involuntary movements, including lip smacking, tongue protrusion and moverments, along with cervical dystonia and other random limb movements from time to time too. To say that I feel depressed, self conscious, embarrassed and almost bordering on agoraphobic is an understatement - but I have a wonderful family and daughter who keep me going. At times, if it wasn't for them I would genuinely be thinking of not being here.

It would be great to be free of this horrible condition... But in an imperfect world, this won't ever happen. I hate psychiatry with a passion.

My head injury also left me with lots of cognitive problems, including being slightly dyslexic and as a copywriter, this just compounds my depression.

I know I have to go on and be strong, but every day fighting my stupid brain and body is so tiring and annoying. I feel sad this is my life now, and look back at how I was a year ago, happy healthy and enjoying life. Now all I think of is my limitations and my struggles with my broken mind and brain.

Please don't say 'It will get bettet' because brain injury generally does but there is no cure for TD, it's horrid. I feel such a freak sometimes. 😩😥😞

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10 Replies

  • Posted

    Hello NIkki, I feel sad to read through your post, its so much pain. BE strong life has always been a battle. Your blessed to have such a supportive family to keep you busy.  In life there are miracles also, you have not seen the future. You will get much better. 

    Down let yourself down, keep strong smile

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    • Posted

      Thank you so much for your kind reply, and support.

      I have days when I feel ok but mostly getting on with life is what keeps me busy and sane... Although the tongue protrusion and lip smacking are bloody irritating, and in an almost Tourette's-type way, I can't fight the urge to do the involuntary movements. Try going outside and in public and having to pretend to cough a lot or cover your mouth so no one sees / hears how weird your mouth looks and sounds... 😞🙄😖

      I would literally give anything to be 'normal' again but taking every day as it comes is my only solace at the moment.

      It's very lonely having such an odd movement disorder that only mental health professionals and doctors have heard of... Maybe that makes me special 😉😜😝😂

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    • Posted

      I can understand you dear, but we all have our little 'problems' that make us unique u know. When am dpressed, I think those who dont have a lot yet are happy.  For eg some people have not been born blind, others have not been able to walk and yet they manage to live with small happiness.

      And do not worry am sure you gona be ok with time. Have faith, will power can change lots of thing my dear smile 

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  • Posted

    What a sad story. I think you may have a viable case against the GP who prescribed the drug that has caused this horrible condition. There is always some risk of tardive dyskinesia with these first generation antipsychotic medications, but the risk is significantly higher in someone with an aquired brain injury, and some studies suggest the risk is even higher in women with aquired brain injury. 

    This is something your GP really should have been aware of. I can't believe that he wasn't aware of these issues.

    I know that suggesting you sue your doctor isn't going to help you. But it is something to consider. 

    There must be support groups for people with TD, perhaps you may find some help in such a group. Recovering from a head injury is challenging enough without having to deal with this horrible disorder too. You can't do anything now about either of these outcomes. But you can do something about how you react to them. I can imagine that you are anxious and depressed. Perhaps you should see a doctor (not the one who made you ill), who can refer you for therapy that might help with the anxiety.

    I hope you are able to find a good doctor that you can build up some trust with.

    At least you haven't lost your intellectual capacity or your ability to look after yourself and your child. You have a loving supportive family.

    The human spirit can be amazingly resilient, it may take you some time and it may be very difficult but I'm sure in time you will adjust to your new circumstances. 

    I know that encouraging or kind words can't assuage the anxiety and sadness you must feel, or quell the anger it would be perfectly reasonable for you to feel towards the doctor who has injured you.

    That power of love you feel for your daughter is a strength you can bring to bear on any problem you feel. So you must know you are an immensely powerful woman. You can overcome your fear and anxiety, you can succeed for yourself and your daughter.

    I wish you all the luck and love in the world, but more than that I wish you the power of your own conviction.

    All the very best.

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  • Posted

    Always research any meds you put in your body.  Many meds can cause problems if, say, you have glaucoma.  Your doc isn't going to tell you all the possible interactions with other meds, foods ( did you know that with many drugs you cannot eat grapefruit or cranberries!) but you have to be proactive.  When people tell you not to google this or that.  That is absurd.  Knowledge is power.  Docs are not gods, they are people and some are more knowledgeable than others.  When they tell you NOT to look up side effects, they want you to remain ignorant of something they don't want you to know.  And that advice can be deadly.  Feel free to blast him for that "advice" as it sounds like incompetence to me.
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    • Posted

      I was as proactive as possible at the time and had looked up all the side effects of benzos and z-drugs I had been prescribed, which is why my doc knew I was wary of drugs and their potential side effects. Tbh I was in such a bad place at the time that I had really very little options left and I wished that I hadn't been so stubborn about trying Citalopram sooner... That would have been the drug that would have helped my insomnia and anxiety far better than anything else.

      I was suffering immensely with the after effects of a head injury and post concussion syndrome too, all exacerbating any anxiety and insomnia I had already. I truly wished I'd been as vigilant with the anti psychotic as I was with the research into the other drugs, but you can't change the past.

      My GP was only doing what was in my best interest at the time but it is a little unfair to put the blame on me too. She probably had no idea I would be in such a small minority that would react so adversely to dopamine blocking drugs after such a low dose. 😥😞

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    • Posted

      I wasn't blaming you at all.  Proactivity is a learned behavior and sadly, most parents don't teach it.  I understand that there are times when we are so sick or hurt that we cannot make good decisions for ourselves.  Have a friend or family with you (in the doc's Ofc) when you are like that that is able to ask the doc questions regarding your health, side effects, etc.  I have a durable power of attorney regarding my medical decisions with my husband and best friend on it.  It is invaluable and in my files at docs and the hospital I use.  And, yes, both husband and friend have used in in several cases.  We cannot do it all and at times, have to rely on others to get good care.😎
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    • Posted

      Don't worry, I wasn't offended! 😜

      I am kicking myself for not being so proactive at the time but my mental health was so bad that the GP was going to call the community crisis team to help as I was in no fit state to do anything.

      My life had been great before the head injury and all the after effects, but having endured cognitive and memory problems, difficulties reading and processing info, severe insomnia and anxiety and then TD, I often feel like my life has reached pretty much rock bottom. My poor family have endured a lot of the fall out and looked after me as best they can, but they're dealing with more serious health issues of another family member so my 'problems' seem trivial in comparison.

      I look for the silver lining but am mostly a glass half empty person a lot of the time so really have to try hard to get through each day. My mind is a million times better than 6 months ago, but the movement disorder is the truly crappy thing I've been left with, not the post concussion symptoms. I often remember my health as it was a year ago and get very down but there's no point in dwelling on things I can't change.

      Life goes on... 😞😥

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    • Posted

      So true, sweetie.  Everyone on this site has had their life altered in significant ways and it takes so much to reach acceptance of who they are now.  Mind you, that is not who you will be in a year or five, we just never know.  Glad you have your kids to love on you and for you to love back.  Being the most loving mom you can be will benefit all of you.  Kids don't care if you are different because they know your heart. Their little eyes radiate the love they feel for you and they are likely a big reason you are so much better than a year ago. Take care of yourself and love this new you, in progress!
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