my Story

Sat, 11/02/2019 - 18:45
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.


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 sounds like it may be warranted. 

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. 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. 

Very much appreciated!

Submitted by Babalush on Sat, 2019-11-02 - 20:07
Very much appreciated!

Hi,Thank you for posting. As

Submitted by Anonymous on Mon, 2019-11-04 - 08:58
Hi,Thank you for posting. As Gianna mentioned in her comments, The effects and risks of so-called recreational drugs vary greatly, they may directly affect the brain and seizures or interact with seizure medications:                       It’s important that you all discuss this further with your husband’s healthcare team to review how his cannabis use may affect his individual treatment plan and if he experiences changes in seizure types/frequency,behaviors, sides effects & symptoms.                    If you have not already, you may want to consider seeing an epileptologist (epilepsy specialist). For assistance finding a specialist near you, please visit: all may want to consider keeping a journal, or diary. My Seizure Diary: a great tool for identifying & tracking seizures, managing medications & side effects, setting reminders, recording medical history, moods, behaviors, triggers,and other personal experiences, that may affect seizures and wellness, which can be shared with his healthcare team.  It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well.   Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or     

I hope you're found a great

Submitted by DubiousDan on Tue, 2019-11-26 - 18:46
I hope you're found a great step to move forward through. There's alot we have in common. I've never liked coffee. But just a couple hits of pot has always been a caffeine, energetic and good mood without being stoned. No more pot anymore. And I can care less for coffee in the morning.

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