I’m struggling to accept a future with an incurable involuntary movement disorder

[NooNooHead1981]

Long story short, I have a drug induced involuntary movement disorder called tardive dyskinesia (TD) that was caused by me being prescribed an antipsychotic drug for a breakdown after I had a head injury and post concussion syndrome 4 years ago.

I don’t usually swear badly in real life, letalone online, but I am going to let rip tonight as I am thoroughly pissed off with TD. I fucking hate it more than anything in the world. (And that is putting it lightly).

I’m sorry to swear so strongly, but I feel like TD has stolen my life. I really try to feel positive a lot of the time, but I get my positivity from being a mum and looking after my beautiful DC. They have no judgement about my symptoms nor do they care whether I have any depression because of it. All that matters to them is that they are loved, cared for and cherished. And that is exactly what I do.

I’m struggling though with accepting my future potentially may be having TD for the rest of my life. It is so hard to believe that my life is as it is right now. It isn’t how I pictured being aged 37.

Without my DC, I would be in the deepest depths of depression and despair because of my TD. I was doubly unfortunate because I had a head injury and post concussion syndrome before I was given the stupid antipsychotic that gave me TD, so I suffered not only once with my head injury, but twice with the most stupid and pointless bloody disorder known to man. I can cope with the symptoms of a head injury and post concussion syndrome. They were hell on Earth for 6 months and gave me a severe breakdown but I survived (just).

But suffering with TD is worse than any of that. It is the complete lack of control, the not knowing what the future holds, and having my whole life thrown into disarray because of a few pills that were meant to help me.

I’m scared about my future, my life is never going to be the same and I am going to have to find the strength to get and hold down a job, endure horrible social anxiety, and live with this awful movement disorder for potentially 30 years or more.

I’m holding up a very fat finger to TD and shouting ‘fuck off’ very loudly, and although I can’t do that in real life, knowing that I can online makes me feel just a little bit better.

I’m sorry to be so miserable - I just need to vent my feelings sometimes.

That is shit, I’m so sorry. Swear away and swear some more.

I'm so sorry 💐 swear away 🍾🍾

Oh NooNoo, so sorry to hear it’s getting you down so much.What you’re feeling is totally ok - been there plenty of times! But with time it can get easier. I mean, who the hell enjoys health difficulties? I’d think you were either a saint or my likely just damned strange if you never felt like that!

I might know a little of what you’re feeling, I became mobility impaired in my early thirties and thought that was me done, especially since the worst came just after getting myself back into permanent employment. Ah, I thought just a few more years and it’ll be early retirement for me and I’ll go back and live with parents.

Not so, I’ve had my own place 12 years and 13 years later I’m still in FT employment in a fairly good job, even though my mobility has further deteriorated and I no longer walk without mobility aids.

I completely understand your fear, I felt the same way, felt life was totally hopeless and endure the ups and downs of the attendant MH issues. But my life now isn’t what I feared it would be, and there’s more than a fair chance the same will be true for you. I still have my off days and life falls short often of where I’d really like it to be, but it’s much greater than where I wouldn’t like it to be and I can live with that 😊.

Disability has taken quite a lot from me, as it’s hereditary (and there maybe another one hanging around for later) I decided against motherhood, though I’d loved to have had children. I used to enjoy an active social life which I really missed, but now content that my energy levels have me slobbing in front of the tv after a days work.

But i also appreciate what it’s given me. I no longer compare myself with others, stupid when they don’t live under my circumstances, and I’m more resilient, resourceful and would you believe confident than my pre-disability self was.

It sounds like you’re doing a great job as a Mum, and of course your kids love you just as you are - they always will. It sounds as though you take much joy in that and holding on to that when things feels hard sounds good. But in the meantime if giving TD the finger feels right, just do it.

Bloody hell NooNoo you’ve really been through it.
So sorry to hear that you’ve got this condition on top of a brain injury.

Have you any support at all?

Thank you all. Just seen all your kind replies. You have made my week already and I am in tears thinking about how kind people are.

A big un-Mumsnetty hug 💖

Yes thank you TigerPants - my family have been a really good support, despite not knowing really what it is like for me. I’m sorry to sound so down. I’m sure things will look a bit brighter as time goes on.

Just wanted to drop by with some

Thank you too PajamasnoDramas. So sorry to hear how much you have been through too. Are you getting lots of support now? I’m very sad for you but really inspired by how much you have achieved. I only hope that I can do as well as you have.

Thank you dellacucina💖

Op big hugs from me.

I had a sudden life changing illness resulting in emergency surgery five years ago due to a life long condition.

It affects me in many ways and sometimes I can handle it and feel fine with it and other times when I'm not at my best mentally if I've had a relapse in condition I'm angry and frustrated with it all.

It makes me impatient and short tempered but mainly at myself. I want to curl up in bed and fester.

It's a horrible feeling op so I'm sending you and and

Thank you too jinglewithbellson.

I hope you have lots of support too. I’m sure it is hard but you sound a really strong person, and it is aleays inspirational to hear about how others cope too.

NooNoo you have really been through it. No wonder you are feeling angry and down about it. What a dreadful run of events you have had.

I don't know if this will help at all, but I used to have a friend with TD, similarly brought on by psychiatric drugs. He is sadly no longer with us due to another unrelated health condition, but he lived apparently happily for many years with the condition, and it didn't stop him having a successful career and a very busy social life with a wide circle of friends.

Be kind to yourself as you continue to adjust to the uncertainty. Have you had any counselling or therapy to help you grieve and adjust? You definitely can have a happy and successful life with the disorder, but sometimes it can be helpful to get some support in getting there.

I was talking to ds about this today. He has an ASC and at about 17 developed Tourette’s in the form of gross moor tics. He’s mid twenties now. He said to let you know that for him, whilst it can be really ducking frustrating (I quote) he has learntto live with them and there are days where he really doesn’t notice. He also said he was told this by doctors and others and didn’t believe them. He sends you a ticcy hug!

Motor tics!

Thank you for your kind words and message Gilead - I am sending your lovely son a big involuntary movement hug back! 😂

Hi NooNooHead I understand because I have a very mild version of TD caused by the high dose of Aripiprazole that I have to take for my Schizo Affective Disorder.

I grind my teeth during the day especially when stressed which can be really uncomfortable (and doesn't look very nice) so I chew a LOT of gum to try to mask it & it also helps with the discomfort.
I also have involuntary hand movements which I can't stop.

My psychiatrist knows but like he said I need to be on that medication at that dose the alternative is that I get psychotic.

It sounds as though you have TD a lot worse though & I really feel for you.
I'm unsure if it can improve or if there's any medication that can help the symptoms?

Hi tierraJ, I am very sorry to hear that you have TD too. Mine is supposedly mild too, but it doesn’t feel like it at times!

I got TD from just a week on a typical first generation antipsychotic called Pericyazine, which was really quite a rare reaction and I had to self diagnose my symptoms before anyone would believe me. My stupid GP kept gaslighting me and saying my symptoms were all owing to anxiety (yeah, who smacks their lips and grimaces with anxiety?!) and it was so frustrating to have nobody believe me.

I saw 5 different neurologists before one confirmed that I had TD, and he instantly said it was TD based on the symptoms I described. To say it was a relief to get validation is an understatement...

When my symptoms initially emerged, they were really frightening. I had a severe dystonic reaction while on the drug which included back arching (opisthotonos) so it was pretty unsurprising when a month later after I cold turkeyed that I started grimacing, lip smacking, tongue and mouth movements, having toe, arm and finger movements, along with abdominal muscles tightening and repeating my own words (palialia).

I’m much better these days but it has taken 4 years to accept my condition is now part of my life and who I am. I still have odd moments of grimacing and lip smacking, along with very severe movements when I am really stressed (during my c-section op last year, my tongue was practically coming out of my mouth!) but it is something I can live with in a better way than before.

That isn’t to say that it is not bloody hard at times. I feel really uncomfortable and self conscious when I have movements in social situations, but I guess nobody notices as much as I do.

I’m really unwilling to take any meds to help with it, as I am now very sensitive to anything I put in me, natural or otherwise.

Sorry about the misspelling of your name TightPants!😂

Thank you too Tolleshunt, I am so sorry to hear about your friend. It is very encouraging to hear he did so well in life despite his TD, I can only hope that I can be as strong and happy as he was.

No worries NooNoo I think I prefer TigerPants!

Good news that you have a supportive family - that’s so important.

Please try not to feel self conscious when out, most people are too busy to notice or are too wrapped up in themselves!

Thanks NooNoo, he was a great guy.

NooNoo you have every right to be angry and to rant.

I have essential tremors, at the moment in both hands, legs and internal body tremors, I know that at any point in the future it could progress to head too. I've had my fair share of anger and tears. Nowadays I try not to think about it really, the fear and anger of knowing ill be so fucking useless in the future was eating me alive.

Though, trying to eat peas does give me the stabby rage

Take care of yourself, and frankly, fuck what anyone else thinks

Thank you TheCanyon... I am sure it will all be ok. I’m so sorry to hear about your essential tremors - is it something that you have had for long? I have had TD for over 4 years now and have accepted my condition as best I can, but I get lots of moments when I sit and cry at how unfair life is. I don’t know anyone close to me with anything similar so I’m alone in feeling depressed a lot, but I then try to consider those who are less fortunate than me and be grateful that things could be worse.

to you.

I have an ok amount of support, I have struggled a bit with the NHS to get it though. I’m pretty independent - until it comes to carrying and lifting stuff and I don’t really like asking for help, but I know I need to drop my pride at times.
Aww, no need to feel sad for me really, I think I’m mostly over it now. Good to see you’re sounding a bit more positive