Have You Ever Participated In A Clinical Trial? | MyEpilepsyTeam

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Have You Ever Participated In A Clinical Trial?
A MyEpilepsyTeam Member asked a question 💭

I know that if I had a grand mal seizure when I was at Brigham and Women's Hospital for EEG Long Term Monitoring, then a separate recording device in the room (wireless) could have been used in the research for this potential replacement for all of the wires needing to be attached during EEG testing and especially EEG Long Term Monitoring. This was not the standard clinical trial because it is simply getting the patient in the EEG Long Term Monitoring to agree to have the wireless machine in… read more

posted February 26, 2022
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A MyEpilepsyTeam Member

The glue used for the EEG is terrible and it took a long time for my scalp to recover. The smell can't be good for your lungs! The poor technician that installed the beehive will probably damage his lungs from the odor. I wore the beehive for five days also.

posted March 3, 2022
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member - after taking 5 drugs over four yrs to unsuccessfully fight Epilepsy, I went with "plan B". I spent 3 wks in the hospital attached to an EEG to allow my epileptologist to ID where in the brain my seizures were coming from. To date, neurology has located more than 40 different locations in the brain where seizures start. Accurately identifying where someone's seizures start is key to allow a neurosurgeon to devise the best brain surgery approach. Nine months after having brain surgery, and going through a few "bumps in the road", I started to get control of my seizures.

I've been seizure free since Oct 2016. Still taking 2 drugs - Dilantin (invented 1908 & approved 1936) plus Vimpat (invented 1996 & approved 2008). Both of these are Narrow-spectrum AED drugs but prior to these 2 drugs, I was prescribed other drugs that fell into the Broad-spectrum AED category. These did not work for me. Your epileptologist has to try different drugs, for patients that do not respond well to traditional ones, to find out the drugs that work best.

posted February 27, 2022
A MyEpilepsyTeam Member

I was in a observation monitoring room for 3 week with depth electrodes in different parts of my brain and deprived of one medication at a time until I was off all of them then they had me stay awake all day an all night and then sleep all day and stay awake all night and vice versa with and without my medication to see where the sezuires were coming from to see if I was a canadite for brain surgery and that was the test were I found out I was a candidate for the VNS because my sezuires were coming from so deep inside my brain.

posted March 3, 2022
A MyEpilepsyTeam Member

I went to OHSU Oregon Health Sciences University approximately five years ago. They placed a huge stinky beehive on my head, deprived me of my keppra for one week. They tried to create a seizure and couldn't. I have since learned that my triggers are the culprit. I was a neurotic mess at the end of the test. The neurologist later tried to change meds and had the same result. I'm addicted to keppra!

posted February 26, 2022
A MyEpilepsyTeam Member

I've signed up for a few that my Nurse was able to connect me with but none officially for seizure activity. I did for cancer in 1998

posted March 5, 2022

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