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Grand Mal Seizures: Anyone found out what's causing your seizures?

Posted by nin @nin, Jan 18, 2022

My son suffers from Grand Mal seizures and are controlled with Kepra. However, i still have a big concern and was wondering if anyone here has been evaluated by a Neurologist at the Mayo Clinic to find out what is causing the seizures? I would like to know what is involved in the evaluation and diagnostic testing to pin point what may be causing the seizures and if there a cure. Has anyone here found out what is causing your seizures?

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nin | @nin | Jan 20, 2022
In reply to @santosha "Hi @nin I am currently living in São Paulo, Brazil. Unfortunately, here in Brazil, there are..." + (show)
@santosha

Hi @nin
I am currently living in São Paulo, Brazil. Unfortunately, here in Brazil, there are no epilepsy centers like in the US, Brazil is behind the US in epilepsy treatments. I have already been to several doctors (psychiatrists and neurologists) since my diagnosis of epilepsy in 2019. By the start of this year, I have finally found a good epileptologist and felt very much the difference. At first, I have been diagnosed just with temporal lobe epilepsy. Sclerosis on my hippocampus I have discovered later, after reading that most people with temporal lobe epilepsy have an injury in the brain. The Epilepsy Foundation has been an excellent source of epilepsy education for me. I then asked my doctor at that time, a neurologist, to do an MRI with high definition, discovering I also had small hippocampal sclerosis. What would I have done differently after the diagnosis of my epilepsy if I could go back in time? To have been treated by an epileptologist right from the beginning, if I knew that existed. My seizures also started when I was 12 years old, but in a very mild way and with very occasional seizures. I have lived with my epilepsy for 36 years without knowing it (I am 51 years old now) and I had a normal life until I had a burnout by the end of 2017.
If you have other questions, feel free to ask.
Have a nice evening 🙂
Santosha

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Good morning @santosha and again thank you for being open and providing valuable information. You and @jakedduck1 have been most helpful and I appreciate your time, knowledge and effort. I will pass this information on to my son. I am trying to find him a new neurologist in Phoenix and perhaps I need to be looking for an Epileptologist instead. I hope the very best for you and all whom suffer from seizures. God Bless.

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1 reply
Chris Gautier OR Santosha | @santosha | Jan 20, 2022
In reply to @nin "Good morning @santosha and again thank you for being open and providing valuable information. You and..." + (show)
@nin

Good morning @santosha and again thank you for being open and providing valuable information. You and @jakedduck1 have been most helpful and I appreciate your time, knowledge and effort. I will pass this information on to my son. I am trying to find him a new neurologist in Phoenix and perhaps I need to be looking for an Epileptologist instead. I hope the very best for you and all whom suffer from seizures. God Bless.

Jump to this post

My pleasure @nin. Thank you for your kind words. All the best to your son and you. Let's keep in touch!!!

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1 reply
Leonard | @jakedduck1 | Jan 20, 2022

@nin
Since Mayo has faciin Phoenix /Scottsdale it should be easier to find a doctor specializing in Epilepsy. Epileptologists have an additional 1-2 years of training in Epilepsy so be sure to ask them if they have had this training.
Another thing I wanted to add is if anyone is around your son when he has a seizure it would be beneficial for them to video it and show it to the neurologist.
even though I only take my medication once a day in the morning I used to have problems remembering it even if it was sitting right next to me and I looked directly at it. For some reason it just didn’t seem to register but I was supposed to take it.
I bought my cousin a couple of automated pill dispensers and after his passing in September I brought them home with me. The one I use has a really irritating alarm so I quickly get up and take my medicine so it will shut up. If I just go in and turn it upside down to quiet it down then go get breakfast or whatever it will text me and call me on the phone. I won’t leave me alone until I take the bloody pills. What if your son remembers to take his medicine in the morning I think his best option and cheaper, would be the extended release Keppra.
Best of luck to all,
Jake

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1 reply
nin | @nin | Jan 20, 2022
In reply to @santosha "My pleasure @nin. Thank you for your kind words. All the best to your son and..." + (show)
@santosha

My pleasure @nin. Thank you for your kind words. All the best to your son and you. Let's keep in touch!!!

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@santosha - Most definitely will stay in touch!

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nin | @nin | Jan 20, 2022
In reply to @jakedduck1 "@nin Since Mayo has faciin Phoenix /Scottsdale it should be easier to find a doctor specializing..." + (show)
@jakedduck1

@nin
Since Mayo has faciin Phoenix /Scottsdale it should be easier to find a doctor specializing in Epilepsy. Epileptologists have an additional 1-2 years of training in Epilepsy so be sure to ask them if they have had this training.
Another thing I wanted to add is if anyone is around your son when he has a seizure it would be beneficial for them to video it and show it to the neurologist.
even though I only take my medication once a day in the morning I used to have problems remembering it even if it was sitting right next to me and I looked directly at it. For some reason it just didn’t seem to register but I was supposed to take it.
I bought my cousin a couple of automated pill dispensers and after his passing in September I brought them home with me. The one I use has a really irritating alarm so I quickly get up and take my medicine so it will shut up. If I just go in and turn it upside down to quiet it down then go get breakfast or whatever it will text me and call me on the phone. I won’t leave me alone until I take the bloody pills. What if your son remembers to take his medicine in the morning I think his best option and cheaper, would be the extended release Keppra.
Best of luck to all,
Jake

Jump to this post

@jakedduck1 Thank you. One of the things I want to mention to my son is the extended Keppra and since we are looking for a new specialist, that will be a question to be sure to ask. He could use an automated pillbox. If it's no trouble for you, can you provide me with the brand name of this dispenser that texts or calls your phone? I was the irritating alarm for him when he lived at home and well now, I think he relies solely on his alarm watch. (sigh) Thanks again, always stay safe.

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Leonard | @jakedduck1 | Jan 20, 2022

@nin
Hello again,
I bought the one pictured some years ago.
It's the e pill med smart Model #660. I think it's equivalent to the med smart plus but I'm not positive. I paid $900 for it. They have several models ranging in price in this particular brand from $79.00 up. I think the plus model costs $1,000 or close to it. There are quite a few different brands with all sorts of prices.
I must say with my bad memory it does give me piece of mind.
My mom was my memory and always reminded me to take my pills before she passed away. May I ask how old your son is?
Jake

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2 replies
nin | @nin | Jan 21, 2022
In reply to @jakedduck1 "@nin Hello again, I bought the one pictured some years ago. It's the e pill med..." + (show)
@jakedduck1

@nin
Hello again,
I bought the one pictured some years ago.
It's the e pill med smart Model #660. I think it's equivalent to the med smart plus but I'm not positive. I paid $900 for it. They have several models ranging in price in this particular brand from $79.00 up. I think the plus model costs $1,000 or close to it. There are quite a few different brands with all sorts of prices.
I must say with my bad memory it does give me piece of mind.
My mom was my memory and always reminded me to take my pills before she passed away. May I ask how old your son is?
Jake

Jump to this post

@jakedduck1 - I did see that one or one similar. It appears that you have to subscribe for the text/mobile features. I have to look into it and see if he will agree to having something like this. My son is 28 years old. I feel that the seizures have affected his memory somewhat and this is just another added concern. Thank you for sharing the dispenser info and pictures.

REPLY
nin | @nin | Jan 21, 2022
In reply to @jakedduck1 "@nin Hello again, I bought the one pictured some years ago. It's the e pill med..." + (show)
@jakedduck1

@nin
Hello again,
I bought the one pictured some years ago.
It's the e pill med smart Model #660. I think it's equivalent to the med smart plus but I'm not positive. I paid $900 for it. They have several models ranging in price in this particular brand from $79.00 up. I think the plus model costs $1,000 or close to it. There are quite a few different brands with all sorts of prices.
I must say with my bad memory it does give me piece of mind.
My mom was my memory and always reminded me to take my pills before she passed away. May I ask how old your son is?
Jake

Jump to this post

@jakedduck1 Thanks for the link as well.

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