Andy’s ECT Story

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My name is Andy John Luff and I am going to be 52 years old this year. 

Autism, sensory processing disorder, and akathisia

First of all, I should explain that I was suffering from sensory overload due to my Asperger’s Syndrome which psychiatry attempted to treat as a ‘mental illness’ by giving me countless antidepressants and antipsychotics.

None of them worked of course. Then after two years I was given the drug venlafaxine, which gave me akathisia almost instantly.

I would pace up and down all day and all night for 3 months after having this drug, and sleep would rarely if ever come. 

A psychiatrist recommends ECT

Then one day I saw a private consultant psychiatrist who suggested that I had ECT.

He said “as we have no time to waste and we have run out of drug options”.

Personally I had no idea what ECT was, and when I asked him he said to do my own research about it on the internet.

I was not capable of doing so due to my akathisia (for I was so confused and limited in what I could do by it). 

ECT given without side-effect warnings

Anyway, after signing the consent form for ECT two weeks later, that at no point stated that I could suffer brain damage from it, I went for my first ECT in April 2014.

After one I could not even remember my own name, I had 3 more and went back for the 5th.

I said to the lead ECT consultant at the hospital “no more, something has gone badly wrong with my brain”. They took no notice and all they said was “sometimes it gets worse before it gets better”. 

Brain damage, spontaneous seizures, inability to walk or talk

For the next few months, I lay in bed motionless, had countless seizures and was doubly incontinent.

I can still no longer visualise or remember my own family years later after having ECT, and on some rare days, thankfully they are rare, I cannot even walk or talk.

Lastly, there is no aftercare from psychiatry after brain damage from ECT as they do not even monitor or look for it.

Finding purpose after ECT

I aim to improve each and every day from now onwards, and count every day as a blessing.

Key Takeaways

  • ECT prescribed inappropriately to treat SPD and akathisia
  • Mr. Luff was not informed of risks of brain damage before electroconvulsive therapy
  • Mr. Luff began showing neurological symptoms (memory loss, seizures, inability to walk) Mr. Luff tried to get help from ECT providers which they brush off without performing any tests and instead encouraged him to continue his shock treatments
  • No aftercare, cognitive testing or rehabilitation has been provided to help Andy live his life after ECT with these impairments

Akathisia is a torturous, life threatening condition that can lead to suicide was not recognized or appropriately addressed in Mr. Luff’s case. ECT is not recommended as a first or even second line treatment for this condition.

For comprehensive resources on Akathisia, visit Akathisia Alliance.