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Has Anyone Else Noticed Sounds As A Seizure Trigger?

Has Anyone Else Noticed Sounds As A Seizure Trigger?

I have noticed one of my triggers is audio related (answering of a cell phone for instance or when I call someone and it starts ringing) as opposed to visual triggers. Has anyone else noticed this? Lights flashing do not bother me at all but certain pitches and sounds can trigger an aura for me... typically involving cell phones.

A MyEpilepsyTeam Member said:

Hi Brandi,
I actually believe that rain could cause you to have a seizure. Even though I'm not there to see when it happens there can be many factors related to rain that can trigger your seizures. It could be the sound of rain, the sight of rain, the smell of rain many of those factors or a combination of them can lead to you having a seizure. Next time it rains and it causes you to have a seizure go through all the numerous things that happened and mentally check off all the options of what could have caused your seizure and you could very likely figure it out. Think of it as your own experiment. I have found out so many things about epilepsy by running small experiments on myself and none were dangerous and I found out so many things it has confused everyone. They cannot answer many of my questions because you can't find it anywhere. When you see the look on a Neurologists face or any specialist you can tell they are totally stumped but I can answer it easily . It doesn't really matter what your Neurologist knows. They have good book knowledge but so many things are not even in books or on the internet. Now specialists just listen to me and I teach them things they have never heard before but can't explain at all. To them it is something new but I have known it for 35 to 38 years. I met one lady on here that knows how to stop a seizure in progress and I can do it also. I'm not sure how she does it but I know how I do it and have actually done it right in front of a number of different doctors and they can't explain it at all. I just tell them what I had just done in front of them but they will never be able to understand what I just did or how I did it. I remember last year stopping three seizures in front of one doctor and three guys that had just graduated from medical school and they didn't know what to think of what I had just done. I remember asking one of the young guys if he knew that a person can actually stop a seizure and his response what "Nope". Then I said to him will you just learned something new. Never forget you have the ability to learn and know things about epilepsy and seizures that cannot be answered even by specialists but you will know the answer. Another thing I found that helps is to also have book knowledge like they have then you can speak at their level. Many times your personal knowledge will be so advanced it is basically not able to be understood by anyone but you and God. Hope that helps Brandi

posted almost 5 years ago
A MyEpilepsyTeam Member said:

That sure is expensive. I think it's because so many people are trying to get it and there is just not enough cannabis being grown for everyone. I know a lot of parents are getting for their young children, and that puts us adults in a difficult position because we need it also. I remember telling my neurologist about cannabis also. I knew it would be something that was new to him so I proved it be showing him that book next to my name. I could only find less than half a page in the huge book about the use of cannabis and how it works and that book weighs 9 lbs and is Phd level. I showed it to him and he read it and understood it and then he said he had no problem with me using it. I'm not sure if you have seen the documentaries by Dr. Sanjay Gupta. He has made 3 of them and they are all on YouTube. Click on this link and watch the whole documentary https://youtu.be/Dn9eTC1mNTk it's pretty interesting.

posted almost 5 years ago
A MyEpilepsyTeam Member said:

Hi Brandi.
You will be surprised how much you can find out about the types of seizures you have and the triggers for them. I have found out so many things about mine it's almost hard to believe. I have had arguments with different doctors because they think what I'm talking about is impossible. I speak to them with authority and I am so confident in what I know they don't even try to argue against me anymore. I'm not threatening at all, but when I speak they realize I know a lot and if they challenge me they always lose. Just like your doctor thinks that rain cannot cause a seizure and doesn't believe it's possible he is just dead wrong. I gave you those three example just of the top of my head, and any of those or a combination of them can definitely cause a seizure. Some specialists think they know everything, but there is so much they don't have any clue about. I have seen that so many times. I remember having a seizure in front of my Neurologist and stopped it, then I told him what I had just done. He could do nothing but agree with me. It might not be in a book or on the internet but it is factual. Your doctor really needs to listen to you, that is usually the problem with Specialists they just don't listen. If they don't listen to you they have a bad bedside manner and unfortunately some are that way. I have had a couple of specialists like that who just wouldn't listen to me, because they thought they knew it all. The Neurologist I see now knows I know a lot and I have taught him a number of things about epilepsy and seizures he never knew existed. There will be some things you will learn that no one else will ever be able to truly understand completely except you and God.

edited, originally posted almost 5 years ago
A MyEpilepsyTeam Member said:

I understand most of what my neurologists say's but what boggles me & makes me want to find a new 1 again is because he said at this point he don't know what else to do for me. I'm on meds my blood work always comes back ok he tried to put me on medical marijuana but insurances don't cover it at all & it's $1000 an oz. I cant afford that that's more than my rent & he wants me to get 2 ounces a month I just can't

posted almost 5 years ago
A MyEpilepsyTeam Member said:

Hi Brandi,
Most neurologists like to use a terminology they learned in college or medical school. If they wanted they could make it easier for most people to understand, but they stick to what they know. When I started teaching people I was using that terminology also so people assumed I was a doctor or medical student. Then I realized my mistake and figured out a way to explain complex things with words every one could understand. It is a lot of information I give out but it isn't confusing to people, but I'm never quite sure how much they remember. Why neurologists don't explain things and make it easy to understand I'm not sure, I think they enjoy what they believe is their superior intellect. I know many of the terms they use so I can follow it and understand them, but I know many people will not be able to. It's usually only specialists that can understand that terminology, so I avoid it as much as possible so people can understand what the heck I'm talking about. General Practitioners, Family doctors, Physicians assistants usually don't understand it either, even many Specialist in different fields of medicine don't really understand what the words mean. I remember asking my Neurologist why he why he became a Neurologist and his answer was " I wanted to know and understand things that most doctors don't understand ". By him saying that shows me he likes that fact that he feels superior to most other doctors because he knows things most other doctors don't have a clue about. I'm not saying he is a bad person, he is a nice guy and I like him, but I think most Neurologists think that way. That is more of psychological thing, like a superior complex. I think most people like that feeling of being superior to others, I hope I don't sound like that to you I'm just trying to help as many people with epilepsy as I can. But I do explain our condition to other even if they don't have epilepsy, so many people don't have a clue about it and I don't want others to have to go through all the crap I went through. I figure the more people that understand our condition the less frightening it will be and one day the stigma that comes with epilepsy will finally be gone.

posted almost 5 years ago
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