Since finishing radiotherapy in August for lung cancer, I have these uncontrollable body jerking throughout the night, arms, legs, head etc. Also, twice now, I've fallen to the floor jerking on and off for nearly 30 minutes. I'm conscious, can hear things, but cannot stop the body movements.
Has anyone else suffered similarly?
Hi Owlman,
This sounds like symptoms you need to discuss with either your cancer treatment helpline or your GP, particularly since you say you have fallen to the floor. I would give them a phone today.
This is a link to our radiotherapy leaflet with information which may be helpful,
roycastle.org/app/uploads/2...
You can also email ask the nurse at lungcancerhelp@roycastle.org or you could call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.
Wishing you all the best
Roy Castle Support Team
I wonder if you could be having seizures. Definitely worth discussing it with your Oncologist and GP. I was having seizures post my treatment and didnt realise until a long time after what they were. You could ask the question Am I having seizures?
I have been to my GP and A&E after my recent daytime event. Had MRI scan etc and nothing abnormal shows. Made me feel like a time waster.
Sorry to hear that you feel like a time waster. Are you still under an Oncologist? Also wonder where on your body you had the radiotherapy? Before I was diagnosed with mine I had several A n E visits but was ok by the time that I got to A n E, I also didn’t think that they had the expertise. If you get no where with Oncologist you could ask for a referral to Neurologist or Neuro oncologist. So frustrating when you feel you aren’t listened to. You could also phone the epilepsy charity helpline to discuss what’s happening and ask for their advice. Could someone video you whilst it’s happening? My Consultant Neurologist asks for photos to see what changes happen
Sorry to read of your current symptoms that sound like seizures. does anyone witness these? when my sister was diagnosed with epilepsy many years ago, it was done on the strength of witness statements from her husband and me as I was living with them at the time. The length of them definitely sounds similar to hers.
Not everything is related to the cancer that we experience afterwards even if our minds want to join the dots to think that's the case. Whatever it is, it could have serious consequences not just falls so do talk to your doctor - your GP if you can get in but definitely your cancer doctor in case it is treatment related but if not, it definitely needs further investigation and hopefully treatment. good luck.
It is good to hear that there is nothing abnormal on your MRI, and this is never a waste of time.
Please let your oncology team know, they may wish to refer you to a Neurologist, or your GP can refer you for further investigation, as your jerking movements are causing you to have a high risk of falls.
You could keep a note of how often it happens, duration, detail the experience and how you feel after the event.
There are things known as Hypnic jerks, where just as you are falling asleep, there are involuntary jerking, twitching movements, one of the known causes is excessive caffeine intake or sleep deprivation.
If you live with anyone, then perhaps ask them to take a video of what happens.
You are welcome to contact us if you would like to discuss anything at lungcancerhelp@roycastle.org or you could call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.
Kind regards
The Roy Castle Support Team
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