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my Story
Sat, 11/02/2019 - 18:45Topic: Share Your Story
Hi everyone, for the past three years, every 6 months or so my husband (45) would have an episode lasting a few hours where he would be completely disoriented, confused, no memory of the past 6 months-year. Often with this he would have weird tastes/smells and a dejavu feeling. The first few times I took him to the hospital where he he’d MRI, CAT scans EEGs and they would find nothing! They ruled out stroke, seizure and the rest. The only proposed diagnosis they we’re lefy with was aura migraine! Well, yesterday he had another episode. Same symptoms as before. I stopped taking him to the hospital because there was no use. But this time, all of the sudden he became very agitated and paranoid (just for. Couple of minutes) and then the seizure came. Full body. So scary. I thought he was going to die. It ended a couple of minutes later and we got him to the hospital. Again, they gave him MRI, cat scans and found nothing! They put him on anti seizure meds and to follow up with neurologist. I have a couple of questions. Has anyone had the disorientation spells because the doctors are still stumped by those. Also, he has been a heavy (and I mean heavy) pot smoker for 25 years. Every day, most of the day. The only correlation I can find between heavy pot smoking and seizure is anecdotal. I’m curious about people’s experience.
Comments
Thanks so much for your reply
Submitted by Babalush on Sat, 2019-11-02 - 19:29
Thanks so much for your reply! I will do that! So the disorientation episodes sound to you like nonepileptic seizures? Can those be followed by an epileptic seizure because he definitely had a grand mal. And the past they’ve given him stress sets while measuring EEGs trying to induce seizures Andy they haven’t found any abnormality. I agree that the Canabis use is connected. He has also had exertion headaches 15 years ago that came forcefully and left after a few weeks. The doctors say there’s no connection but come on, all these neurological symptoms must Be connected.
There are just as many
Submitted by Patriotrehab on Sat, 2019-11-02 - 19:47
There are just as many different types of non epileptic seizures as there are epileptic seizures. In fact, non epileptic seizures often mimic epileptic seizures so when you say that he had a “gran mal seizure” that could have been a non epileptic seizure as well. The only way to know for sure is by capturing the seizure in the moment while on video EEG and having a trained epilepsy specialist look at both the brain waves on the EEG and the video at the same time. Here’s a helpful website on non epileptic seizures. https://nonepilepticseizures.com/ Please keep in mind that not all non epileptic seizures are psychological in nature. Some are metabolic, others are caused by drug use, etc. When you speak with the neurologist, be sure to ask questions about differential diagnosis to include complicated migraines, non epileptic seizures, cannabis use, and metabolic disorders and what types of tests are available for ruling that out in order to be sure that you get the correct diagnosis.
I’m a licensed clinical
Submitted by Patriotrehab on Sat, 2019-11-02 - 19:18
I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. While someone of my seizures have been “odd smells” and deja vu they are separate and distinct seizures that last no more than a couple of minutes and I have 19 years of abnormal EEGs and even some abnormal MRIs. I even have other types of seizures, but it’s definitely not typical to have several hours of complete disorientation. This is more common in nonepileptic seizures. While nobody can say for sure what he’s experiencing is a seizure or not, I do think an important factor is his cannabis use. Please be sure that the doctor is informed about any alcohol, recreational drugs (e.g. cannabis) or other medications that he is taking as this can be contraindicated and potentially fatal if it is mixed with the anti epileptic medications. Also to be sure that he is given a correct diagnosis, you may want to discuss with the doctor what is called an extended video EEG. This is the gold standard for distinguishing between epilepsy and nonepileptic seizures. Not every doctor has access to this and it may require a referral to an epilepsy center, but given his history...it sounds like it may be warranted.