Struggling with post concussion syndrome, and drug induced movement disorder TD
 

I'm cutting a v long story short here, and will be as brief as I can.

Last year, I had a mild traumatic brain injury, post concussion syndrome and an awful mental breakdown. 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).

Unfortunately the side effect of the antipsychotic was a rare movement disorder called tardive dyskinesia which is both disfiguring and socially embarrassing... Lucky me got this and I am living with involuntary movements (facial tics like grimacing and lip smacking, odd involuntary limb movements and other strange tics), alongside the awful mind blanks, acquired dyslexia and cognitive / memory issues that come with post concussion syndrome.

Fortunately I work part time from home as a self employed freelance copywriter and am lucky I don't have to encounter too many people during my everyday existence. I still do all the usual socialising / play dates and school runs etc for my daughter, albeit with an awfully heightened social anxiety despite my husband telling me no one is bothered by my odd movements etc.

I live life as fully as I can despite all my issues, but have been trying not to fall into the pit of depression that my movement disorder may not go away, or my head injury symptoms might not improve much more. Am I being unreasonable to want to sue the GP who prescribed these pills with the best intention, not knowing they could ever have the effect they did? I only took them for a week and she even told me not to look up the side effects, as she knew that I had was very sensitive to medications and had been worried about all the other drugs I'd been prescribed. But surely not to tell someone about a side effect, no matter how rare, is negligent?

Am I being unreasonable when I also worry about any future jobs or career being affected by my odd movements and my self consciousness about how I believe others may perceive me? I can't ever picture myself working in an office or public again as having to control my movements is a bit like someone with Tourette's... Semi-suppressible but not completely...

I cry often in quiet despair that my life has become what it is. I know others will say count your blessings, and there are others out there with much worse, which of course I appreciate - I guess I am worried about my future and how I would have to cope with the potential changes. 😔

NooNooHead,

Welcome to NeuroTalk.

I think you need to talk with an attorney. You might be better off suing the drug maker. An attorney should be able to tell you.

What drug do you think caused your tardive dyskinesia ?

Was it Reglan to treat PCS nausea ?

Has your doctor used the Abnormal Involuntary Movement Scale (AIMS) to rate your symptom severity?

How is your insomnia doing ? Do you struggle to fall asleep or struggle to stay asleep or struggle to get quality sleep ?

I encourage you to try the vitamins regimen in the Vitamins sticky at the top. Be sure to include the niacin. It has been known to help some with TD. All of the B's are important. 1000 mcgs of B-12, a B-50 Complex and some niacin should be a minimum to start. D-3 is also good.

Canabidiol (CBD, a form of marijuana) has helped some with CBD. If you are in a Medical Marijuana state, you could get some CBD oil and see if it helps. It also helps with some of the PCS symptoms for some people. There are a ton of online sources. Some believe CBD derived from marijuana is better than CBD from industrial hemp. Some states have CBD oil distillers.

Here is a web site with info for you to consider about TD: Reglan & Tardive Dyskinesia – Symptoms, Side Effects & Treatments

My best to you.