Am I switched on?? Not knowing is agonising

Hello everyone,
I'm new to this forum but hoping someone can advise me. 12 weeks ago, I had a deep brain stimulation (DBS) system implanted in my body. I am a participant in a research blind trial in alleviating system of epilepsy from which I suffer. I am switched on or off for the first 2 months, then alternated to the opposite on/off position. I was switched on or off about 6 weeks ago now and I have no idea if i'm switched on or off, I have to wait until the 4 months has passed until I find out if I was switched on or off during each 2 month period. I then have the option of having the DBS pacemake/battery or whatever you call it switched on or off. Now I appreciate this is a really controversial question. I would like to find out if I am switched on or off as the not knowing is absolutely agonising. My symptoms have improved negligibly, although that may just be a placebo effect so i'm guessing that I am switched off. Does anyone know how to tell if the battery in my chest is switched on or off? I would so much really like to know. Could I use some sort of multimeter or oscilloscope to check?
Many thanks,
Josh.

3 Comments

Defeats the object

by IAN MC - 2013-01-13 08:01:20

Hi Josh I can understand you wanting to know; I would.

But as you appreciate the whole point of double blind trials is that neither the patient nor the researcher knows whether a placebo or not is given ; otherwise subjective bias can influence the conclusions. If the trial is now over and you have to wait another 4 months for the results I can really sympathise with you but my advice would be ...be patient !!

How would knowing help you in any way ?

Ian

Advantage of knowing

by jdaviesep - 2013-01-13 09:01:33

Hi IAN MC,
Yes, I know, it does defeat the object, i'm just impatient. One advantage of knowing though, is that can arrange with the trial team for tune-ups. If i'm switched off, then I will be travelling to the medical centre (which is over 4 hours travelling distance away) for 'fake' tune ups.This I would obviously not look forward too. 8 hours travel (there and back) just for a pretend tune-up. If I knew I was 'on', then I would obviously be requesting as many tune-ups as I could as the travelling wouldn't be fruitless. But yes..I need to be patient.
Regards,
Josh.

Josh

by IAN MC - 2013-01-13 10:01:56

So your trial is still ongoing ! .. a real pain in the butt if you have to do all that travelling to no avail but logically and scientifically it is best if you don't know,

I once took part in a clinical trial in the pharmaceutical industry; I gave blood every day for 8 weeks which was a real pain in more ways than one ... yes, you've guessed it, I was taking a placebo . What we do for science eh !

Cheers

Ian

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