I have an unusual chronic electric sensation deep in my brain that might be rare type of epilepsy? I have no uncontrol movement/motor issue. This happened after a chemical trauma to my brain. Eyedrop medication cyclogyl and prednisolone somehow seeped into my brain during sleep and reacted intensely, I recovered after a day but a few days later, my chronic brain symptom started ever since. Unfortunately, my mri and eeg showed nothing. Possibly because maybe this electric sensation I'm feeling in my brain(near pituitary area) is too deep for eeg to detect seizure/sensation? I wanted to try aed to see if it helps with my symptom, but doctor can't refer me to epilepsy clinic/let me try aed without a positive test or some kind of uncontrol movement symptom. Can epilepsy be odd sensation alone without uncontrol movement? If anyone have any suggestion? I'm thinking of traveling to buffalo(im from Toronto) to get a brain mri scan with seizure protocol? Should I try to get sleep eeg test? Any way to get aed? Thanks for suggestion
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Rare/Unusual epilepsy?
- Thread starter strike333
- Start date
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Hi Strike,
Welcome to the forum CWE! What you need to do is go to a Epilepsy Center which are usually at University hospitals or
really big hospitals and see a Epileptologist which is a Dr. that specializes in epilepsy. This Dr. will speak with you and probably
want to do a lot of tests on you. Just like you I had an e.e.g but the damage was so deep in my brain that the e.e.g. didn't pick it up
What you may want to ask the Dr. to do is a PET scan and Spect scan along with a Wada test these tests show a lot more detail.
You won't be able to get any AED's until a Dr. sees you so in the meantime cut back on the carbs and starch foods and stay away
from diet soda or anything with NutraSweet in it. To many carbs and starch foods turn into sugar and that fires up the neurons
in the brain which can trigger seizures. Also if you use a cell phone take note if you are having these seizures when you use the
phone because sometimes a person is cell phone sensitive meaning the frequency of the phone will trigger seizures. I found that
out when my Epileptologist did a e.e.g on me and was using his cell phone on purpose but I didn't know it and when he used his
phone the e.e.g spiked up high. Strong Memorial Hospital in Rochester, NY has a great Epilepsy Center there you should check that
out since it's about 30 min. from Buffalo.
I wish you the best of luck and May God Bless You,
Sue
Welcome to the forum CWE! What you need to do is go to a Epilepsy Center which are usually at University hospitals or
really big hospitals and see a Epileptologist which is a Dr. that specializes in epilepsy. This Dr. will speak with you and probably
want to do a lot of tests on you. Just like you I had an e.e.g but the damage was so deep in my brain that the e.e.g. didn't pick it up
What you may want to ask the Dr. to do is a PET scan and Spect scan along with a Wada test these tests show a lot more detail.
You won't be able to get any AED's until a Dr. sees you so in the meantime cut back on the carbs and starch foods and stay away
from diet soda or anything with NutraSweet in it. To many carbs and starch foods turn into sugar and that fires up the neurons
in the brain which can trigger seizures. Also if you use a cell phone take note if you are having these seizures when you use the
phone because sometimes a person is cell phone sensitive meaning the frequency of the phone will trigger seizures. I found that
out when my Epileptologist did a e.e.g on me and was using his cell phone on purpose but I didn't know it and when he used his
phone the e.e.g spiked up high. Strong Memorial Hospital in Rochester, NY has a great Epilepsy Center there you should check that
out since it's about 30 min. from Buffalo.
I wish you the best of luck and May God Bless You,
Sue
My family doctor finally referred me to an epilepsy clinic UHN Krembil brain institute, which is the best in Ontario. Hopefully they accept me, if they do I have to wait 3-4 months for an appointment. I wonder around how much to see a epileptologist at that Epilepsy center you recommended? You heard anyone taking the brain MRI with seizure protocol if it is any good? Thanks
Hi Strike,
Take my word it's always a long wait to get in to see an Epileptologist at an Epilepsy Center. It's been a few yrs. since I saw
my Epileptologist because he was over 100 miles away from my home and he told me to see a neurologist close to home
after I had the brain surgery but I paid $100.00 just to walk into his office and then he charged me about $100.00 in the beginning
but it went up after that. As long as you have ins. you should be okay. I've had the MRI that you mentioned and that is helpful
but the Dr. also likes doing the e.e.g. I wish you the best of luck and May God Bless You!
Sue
Take my word it's always a long wait to get in to see an Epileptologist at an Epilepsy Center. It's been a few yrs. since I saw
my Epileptologist because he was over 100 miles away from my home and he told me to see a neurologist close to home
after I had the brain surgery but I paid $100.00 just to walk into his office and then he charged me about $100.00 in the beginning
but it went up after that. As long as you have ins. you should be okay. I've had the MRI that you mentioned and that is helpful
but the Dr. also likes doing the e.e.g. I wish you the best of luck and May God Bless You!
Sue
I read some epilepsy patient may be candidate for surgery if they don't tolerate medication well? Do you think specialist would respect patients who want surgery even though medication works for them? Perhaps some patient may lie that the drugs are't good just so they can ask for surgery? Do you think surgery is a lot more possible than before for epilepsy patient due to laser/gamma knife surgery technology? What's the picture in all this? thanks
I read some epilepsy patient may be candidate for surgery if they don't tolerate medication well? Do you think specialist would respect patients who want surgery even though medication works for them? Perhaps some patient may lie that the drugs are't good just so they can ask for surgery? Do you think surgery is a lot more possible than before for epilepsy patient due to laser/gamma knife surgery technology? What's the picture in all this? thanks
Hi Strike,
You can set up an appt. to see a Epileptologist at an Epilepsy Center where they have the neuropsychologist
and neurosurgeon working with the Epileptologist as a team. Where I went as long as you were having seizures
and it wasn't a risk they would do the surgery. I was drug resistant, so it didn't take long to get in for the surgery
but I will tell you that you will have to go through a lot of tests to make sure it's safe to have the surgery done with
no risks. I had ultrasound surgery done the gamma knife surgery wasn't out yet but take my word that's the way
to go because all they do is pinpoint the area that is triggering the seizures then they cut into you and put the gamma
knife on that area and the damage is gone by using HF radio waves. Often a person can go home the same day
they had surgery but sometimes they will want the patient to stay overnight for observation. I will tell you that you
are going to be tired for a couple of weeks after surgery which is normal and you will only be able to eat soft foods
for awhile because it hurts to chew food. I wish you the best of luck and May God Bless You,
Sue
You can set up an appt. to see a Epileptologist at an Epilepsy Center where they have the neuropsychologist
and neurosurgeon working with the Epileptologist as a team. Where I went as long as you were having seizures
and it wasn't a risk they would do the surgery. I was drug resistant, so it didn't take long to get in for the surgery
but I will tell you that you will have to go through a lot of tests to make sure it's safe to have the surgery done with
no risks. I had ultrasound surgery done the gamma knife surgery wasn't out yet but take my word that's the way
to go because all they do is pinpoint the area that is triggering the seizures then they cut into you and put the gamma
knife on that area and the damage is gone by using HF radio waves. Often a person can go home the same day
they had surgery but sometimes they will want the patient to stay overnight for observation. I will tell you that you
are going to be tired for a couple of weeks after surgery which is normal and you will only be able to eat soft foods
for awhile because it hurts to chew food. I wish you the best of luck and May God Bless You,
Sue
Hi strike,
That's great to hear and I wish you the best of luck. One thing you may want to do is write down any
questions you have and take them with you so you don't forget to ask them. I have done that many times.
Wishing you the best of luck and May God Bless You,
Sue
That's great to hear and I wish you the best of luck. One thing you may want to do is write down any
questions you have and take them with you so you don't forget to ask them. I have done that many times.
Wishing you the best of luck and May God Bless You,
Sue