I hate my broken brain that can't be fixed

[NooNooHead1981]

I had a head injury and post concussion syndrome in 2015, then was subsequently injured by psychotropic meds and an off label antipsychotic prescribed for severe insomnia and anxiety after. This caused a serious injury and adverse effect, and I now have a permanent neurological involuntary movement disorder called tardive dyskinesia that is a bit like Tourette's and Parkinson's disease combined. It's horrid.

I'm currently sitting here feeling very odd, with the feeling of what is called preminatory urges - the sensation of really wanting to sneeze or yawn (a kind of build up of pressure inside), except that I can't "tic" like people with Tourette's do to release the feeling. This is a common symptom that Tourette's patients have and it is also something that is part of disorders involving dopamine dysfunction.

This is just one thing I have among many other neurological symptoms which will probably never go away. I have accepted having to live with it up to a point, but it's at times like this with this awful sensation that doesn't go away that I literally despise my brain. It's just broken and can't ever be fixed 😪

It sounds horrible, I’m sorry. Do you have someone with you at the moment, or someone you could call for some company?

Do you think your body might be trying to complete a movement that happened in the event?

That sounds really hard. Is it possible to relieve the frustration of that through a displacement activity - like giving yourself a sensation elsewhere in your body that you can focus on?

Thanks for your replies. It's not really the same as Tourette's but it is similar in that the drugs which caused the damage (the antipsychotic) create what is called "Tourettisms", so the biological mechanisms are similar to what happens in Tourette's, but not quite (if that makes sense lol). I'm not really sure about how the physiology of it all works, as I'm not a neurologist but I've done enough research over the past 8 years of having it to know that they are all quite similar.

I think that's the reason people with Parkinson's can get dyskinesia from their medication as they are using it to increase dopamine and its re-uptake. It's all quite complicated I guess which is why I don't have much hope in anyone finding something that will help 😥

Not many people know what to say to help me really as it's such an odd and rare disorder, that even lots of doctors won't ever see many people who have it during their careers. It's kind of a bizarre thing and I only get a good group of empathetic people in my Facebook support groups that I'm part of.

Have you explored creating a different relationship to the pain/sensations? Just thought about this doctor Alan Gordon who’s approach might offer something - when you say you despise your brain and it can’t ever be fixed…

thsi is part 1 of a pain reprocessing exercise. Part 2 was posted a few days later. Various other information on his page and in his book/podcast.

https://www.instagram.com/reel/Co8o7anDGxO/?igshid=YmMyMTA2M2Y=

Just a thought, but have you been in touch with the charity Headway? They work with people with acquired brain injury and may have experience with similar cases.

It sounds really difficult. I imagine it feels rather lonely, being such an unusual situation where not many people will know what you're talking about. Does it get annoying telling people? Do they listen? I find people are only mildly interested in other people's health issues and don't have much to say.

It's so unlucky. Having good or poor health comes down to plain old luck a lot of the time, and it's so hard for those who get the bad luck.

Yes, it's hard as I can't talk to anyone who remotely understands in real life. I get lip smacking, grimacing involuntary movements of my face, eyes, and tongue, and sometimes I have strange tic type sounds where I'll repeat my own words or phrases, and occasionally might clear my throat a lot.

I should imagine that most of the time, if anyone saw me doing it, they wouldn't think much but I'm sure the odd person could think I was on some type of illegal substances. The people I see out and about who appear to have conditions like ataxia and certain other neurological conditions are people who I have great empathy for. Many people just don't get that having good health is something that we should never take for granted. I was expecting to live most of my life being as fit and healthy as I was during my youth. It makes me feel so depressed knowing my middle and old age will be spent in a broken body.

The grief that was described by a Sunday Times writer in an article I read about her anniversary of the neck injury she had was something I could really relate to. She said that the sense of loss of her old self and body was something that she won't ever get over. This is the feeling of despair that I have had at various times over the past few years, and it seems that it's something maybe I need to get some kind of help for, definitely.

I have Tourettes, so similar but not the same. It’s bloody difficult.

I get the feeling where you need to do ‘the thing’ but no matter what you do the feeling won’t go. That’s quite common with tics. I know it’s not the same but I know kind of how you feel.

I've always thought involuntary tics/movements must be quite tiring on the body. I imagine it would make your body ache in the same way as though you'd done exercise and leave you worn out? I don't know. It must be so frustrating.

I honestly don't know the best way to go about accepting your new reality, or if you can ever truly accept it. I guess you first have to mourn for the 'old you', and then find some way to be at peace with the 'new you'. Like totally accepting and recognising the newer version of yourself. So hard.

It’s a grief process, isn’t it? Very hard thing to come to terms with .

She said that the sense of loss of her old self and body was something that she won't ever get over. This is the feeling of despair that I have had at various times over the past few years, and it seems that it's something maybe I need to get some kind of help for, definitely.

the ‘won’t ever get over’ thing is black and white thinking. It’s a very understandable reaction to a loss and scary circumstances, but also it can be rooted in eternity thinking from childhood when the brain can’t process how reality could ever be any different. Really though feelings come and go, we can get used to new realities, not every moment will be full of problems and despair… as adults we can find the grey in life - you may not ever have all the healthy functioning of your body but there’s still many things in life you can enjoy. I think you could really benefit from some counselling to help you through these moments when it all feels lonely and overwhelming. Sending you best wishes