Survey on how you keep track of your seizures

Chibi

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Hi All,

I am currently studying with the Open University on the module TM470 - Computing Project. If you would be able to fill out this survey regarding how individuals record they seizures it mainly aimed at mobile apps. This is contributing to my degree at the Open University if you have any questions please do let me know. Any question you could not like to answer please type in N/A.


Regards
Jennifer
 

Porkette

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Hi Jennifer,
I hope I was of some help to you. I'm sorry I couldn't use the cell phone but they trigger seizures do to the frequency they use this is
known as cell phone sensitive. Wishing you the best of luck and May God Bless You!

Sue
 

Chibi

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Hi Jennifer,
I hope I was of some help to you. I'm sorry I couldn't use the cell phone but they trigger seizures do to the frequency they use this is
known as cell phone sensitive. Wishing you the best of luck and May God Bless You!

Sue
Hi Sue,

Thank you so much for assisting with this and filling out the form. I been learning so much about epilepsy spy due to this project and have come across a few articles on cell phone sensitive as well. I have epilepsy that is triggered mainly by stress however I wanted a better understanding of other people's expirence with the medical condition.

I wish you the best of health!

Thanks again
Jennifer
 

Porkette

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Hi Jennifer,

My Dr. found out cell phones were triggering seizures when he did an e.e.g. on me and I had no idea but in another room not far from me the
Drs. purposely started using their cell phones and when they did they saw large spikes in the e.e.g. and this is how they found out I was cell phone sensitive. What's weird is I talk on my ham radio and that doesn't bother me in the least, when I mentioned this to my Dr. he told me it was because the cell phone frequency was bothering more than ham radio frequencies and there is better filtering in the radio compared to cell phones. I wish you only the best and May God Bless You!

Sue
 

Chibi

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Hi Sue,

Are you on medication to help with this? it sounds like a challenge in daily life for you. My epilepsy started when I was a child and anything that makes me stress just results in me having panic attacks then having seizures somehow. I have been on medication for years and it working.

All the best
Jen
 

Porkette

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Hi Jen,
I've had seizures for 48 yrs. and I've been on 13 different meds right now I'm taking Diamox, Vimpat, and mysoline for my seizures. I also had surgery done yrs. ago to help reduce my seizures. My Epileptologist did a DNA test on me and found out I was drug resistant to all seizure meds that are out on the market now and told me to start using cbd (medical marijuana) take my word when I say that has helped me more than anything. I buy it on line in a mouth spray and squirt it in my mouth twice and day and my seizures have reduced to the lowest in my life. Another thing I have done is using apple cider vinegar with mother in it. I wanted to lose weight so I took 2 Tablespoons of it in the morning then ate my breakfast and I saw a big reduce in my seizures and I did some research and found that the vinegar will help some people who have epilepsy. If you go on YouTube you can see a short story of how the vinegar has stopped a woman's seizures completely. The mother is a good bacteria and protein and that's what's helping reduce the seizures for some people. Also try cold water therapy. All you have to do is put a cold washcloth on your face and the back of your neck 3 times a day and anytime you feel a seizure start up by doing this it calms the neurons down in the brain and stops the seizures. I was in a medical study and I had to take my temp. 3 times a day at the same time and anytime I felt a seizure start. I kept data for the Dr. and they saw a pattern that my temp would go up during a seizure but when I put the cold washcloth on my face the temp went back to normal and the seizure didn't happen give it a try if you want to. I wish you only the best and May God Bless You,
Sue
 

Sabbo

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Hello. I have been keeping track of my seizures in a 3 subject notebook for the past 8 years. I always note the date. For my simple partials, it's no problem to record the time they begin & end. If someone sees me have a complex partial, I ask them to tell me what I did during it. I only realize that I had one when I'm alone if I'm hurt or my surroundings have been altered. Then I write down what I last recall seeing/doing, & note any injury.
 

Chibi

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Hello. I have been keeping track of my seizures in a 3 subject notebook for the past 8 years. I always note the date. For my simple partials, it's no problem to record the time they begin & end. If someone sees me have a complex partial, I ask them to tell me what I did during it. I only realize that I had one when I'm alone if I'm hurt or my surroundings have been altered. Then I write down what I last recall seeing/doing, & note any injury.
Hi Sabbo,

Apologies for the delay in the reply, Just a quick question may I ask why you don't use mobile applications to record your seizures or is down to personal preference?

Regards
Jennifer
 

Chibi

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Hi Jen,
I've had seizures for 48 yrs. and I've been on 13 different meds right now I'm taking Diamox, Vimpat, and mysoline for my seizures. I also had surgery done yrs. ago to help reduce my seizures. My Epileptologist did a DNA test on me and found out I was drug resistant to all seizure meds that are out on the market now and told me to start using cbd (medical marijuana) take my word when I say that has helped me more than anything. I buy it on line in a mouth spray and squirt it in my mouth twice and day and my seizures have reduced to the lowest in my life. Another thing I have done is using apple cider vinegar with mother in it. I wanted to lose weight so I took 2 Tablespoons of it in the morning then ate my breakfast and I saw a big reduce in my seizures and I did some research and found that the vinegar will help some people who have epilepsy. If you go on YouTube you can see a short story of how the vinegar has stopped a woman's seizures completely. The mother is a good bacteria and protein and that's what's helping reduce the seizures for some people. Also try cold water therapy. All you have to do is put a cold washcloth on your face and the back of your neck 3 times a day and anytime you feel a seizure start up by doing this it calms the neurons down in the brain and stops the seizures. I was in a medical study and I had to take my temp. 3 times a day at the same time and anytime I felt a seizure start. I kept data for the Dr. and they saw a pattern that my temp would go up during a seizure but when I put the cold washcloth on my face the temp went back to normal and the seizure didn't happen give it a try if you want to. I wish you only the best and May God Bless You,
Sue
Hi Sue,

These are really interesting methods, apologies for the delay in the response. I had a seizure recently after being seizure free for five years and now I am back to counting down the days of being seizure free. I have been on keppra since I was 14 years old and ended up doing loads of exercise to reduce my seizures however it doesn't seem to be working. I was looking into the Atkins diet to reduce absences however one of my family members is not supportive of this method.

Regards
Jennifer
 

Porkette

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Hi Jen,

I'm sorry to hear that your seizures have started up again. I was on the ketogenic diet and that helped me a lot but it's very hard and strict. I had to fast for 2 days before I began and then slowly work my way on the diet with a dietician. You can by the book "The Epilepsy Diet Treatment" By Dr. John Freeman and this breaks down the diet very good and explains how the diet works it also has a few recipes in it. If you go on amazon you can buy the ketogenic cookbook they have some delicious recipes. Just be sure if you go on this diet that you are not taking Diamox or the diet won't work. Cut back on the carbs and starch foods and start eating high fat foods. My breakfast would be 2 eggs cooked in butter, 5 strips of bacon or 2 sausage paddies along with 1 cup of juice and coffee. I also ate a lot of cheesecake while on the diet but no soda or potato chips and pasta is out during the diet. I wish you the best of luck and May God Bless You!

Sue
 
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