It has been some time since I’ve posted and I have a too much to say. Mainly my wife and I have been struggling with the issues that all of you faced with PNES have. Lately it’s been medication issues. It seems that a particular med that my wire relies on is a “controlled substance” that sometimes is abused by people. The doctors have been claiming that because of this they are going to either no longer prescribe them at all or only after drug testing individuals who take them. One doctor even said that they were on a mission to catch these people who are trying to obtain drugs illegally. I would much rather have our doctors in the business of treating patients as opposed to law enforcement.
Of course my wife is not abusing them and uses them in conjunction with other meds for maximum seizure relief. But many doctors are more concerned with the possible abuse of these meds than helping their patients that need them. One doctor, two days before Christmas last year, told my wife that she would not refill her prescription without undergoing a drug test to ensure that the medications were in her blood stream. I asked the doctor if the implication was that she may giving them to another person or selling them and the doctor said yes. I then asked what evidence there was of this and she said there was none. She just wanted to test every patient who took one of six different meds “just in case”.
This is certainly going to be an issue for many of you and I will addressing it often as I seek to make progress with doctors who don’t understand how this can affect those with PNES. Stay tuned.