Atonic Seizures or Drop Down Seizures

Posted by vkhalfpapp @vkhalfpapp, Tue, Nov 26 3:21pm
  1. My special needs daughter, age 37 , started having these seizures a year and a half ago. Was wondering if anyone else have dealt with them and what their experience have been with them. My daughter is on 3 types of medicine and has had the VNS Stimulator put in last August. We still are experiencing multiple seizures a month, with 2 surgeries from falls.

Liked by Leonard

I'm sorry your daughter is having Atonic seizures. I've had Epilepsy for 52 years but never had an Atonic seizure. I know very little about them. Do people with Atonics get Auras? Does your daughter? I suspect not because of the injuries. Are they Focal Motor Atonic or Generalized? Any loss of consciousness or awareness?
What medications is your daughter on?
I don't have a lot of confidence in the VNS. Has it decreased the frequency of her seizures?

Below is a link on Atonic Seizures. If you scroll down people talk about their experiences.
https://www.epilepsy.com/learn/types-seizures/atonic-seizures
Take care,
Jake

REPLY

Hello @vkhalfpapp and welcome to Mayo Connect,

Thanks to @jakedduck1 for responding to your post. He is one Member who has had personal experience and knowledge that most of us have not had regarding seizures/epilepsy. Is your daughter being seen by a neurologist who specializes in seizures?

I found another like with information about these seizures. It is from Cedars-Sinai.
https://www.cedars-sinai.edu/Patients/Health-Conditions/Atonic-Seizures.aspx

Liked by Lisa Lucier, Leonard

REPLY
@jakedduck1

I'm sorry your daughter is having Atonic seizures. I've had Epilepsy for 52 years but never had an Atonic seizure. I know very little about them. Do people with Atonics get Auras? Does your daughter? I suspect not because of the injuries. Are they Focal Motor Atonic or Generalized? Any loss of consciousness or awareness?
What medications is your daughter on?
I don't have a lot of confidence in the VNS. Has it decreased the frequency of her seizures?

Below is a link on Atonic Seizures. If you scroll down people talk about their experiences.
https://www.epilepsy.com/learn/types-seizures/atonic-seizures
Take care,
Jake

Jump to this post

My daughter is Developmentally Delayed so she is unable to tells us of any Auras. She does lose awareness when she has one for about 3 to 5 seconds and than wants to know what just happened. Her medications are depacoat, keppra, and globasam. The VNS stimulator seemed to help a little for a short period. Right now she is in wheel chair and can only put a little weight on injured leg for transfers.

Liked by Leonard

REPLY
@hopeful33250

Hello @vkhalfpapp and welcome to Mayo Connect,

Thanks to @jakedduck1 for responding to your post. He is one Member who has had personal experience and knowledge that most of us have not had regarding seizures/epilepsy. Is your daughter being seen by a neurologist who specializes in seizures?

I found another like with information about these seizures. It is from Cedars-Sinai.
https://www.cedars-sinai.edu/Patients/Health-Conditions/Atonic-Seizures.aspx

Jump to this post

She is being seen by a neurologist. He says he has many patience with seizures, but very few with this type.

Liked by Leonard

REPLY

@vkhalfpapp
Hi,
I wanted to give you a couple links in case your not already familiar with them. They may have members with Atonic Seizures who could be more helpful.

COPING WITH EPILEPSY
https://www.coping-with-epilepsy.com/forums/
EPILEPSY FOUNDATION
https://www.epilepsy.com/
Have you ever considered taking your daughter to an Epilepsy Center to be evaluated by an Epileptologist? Mayo Clinic has a level 4 Epilepsy Center which is rated #1 in the U.S.
In case you ever consider it, here is a link to Epilepsy Center locations.
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
Wishing you the best of luck.
Jake

REPLY

I am sorry that your daughter developed Atonic seizures. They are so worrisome because of the sudden hard falls. My son, now age 41, started having seizures at age 3. Up until that time, no delays or problems. After about 2 months of having a grand mal seizure every 2-3 weeks in spite of Phenobarb and then Dilantin, we took him to a pediatric neurologist at what was then called Children's Memorial Hospital (in Chicago, where we live). She put him on Tegretol and a few weeks later, he started having drop/Atonic seizures in addition to the grand mal seizures, which continued and became more frequent. He would drop backwards very suddenly while fully awake, as if he had been shoved hard. After a bad fall on concrete which required stitches, we got a helmet for him. The Atonic seizures continued (1-6 a day), but at least his head was protected. He was then hospitalized for several weeks in a fruitless attempt to uncover the underlying cause of all his seizures (which was never found). His EEGS had been normal, and while hospitalized he had quite a few. Suddenly the neurologist "saw something" on a new EEG and she abruptly yanked him off Tegretol and started Depakote instead. She told us that Tegretol was contraindicated with his type of seizures. Within a few months, the Atonic seizures tapered off and then stopped completely, and he has never had one since. He's been off Depakote for many years, and his seizures–except for the Atonics–have been when he is asleep. He still has an grand mal seizure about once a week, usually in the early morning hours. Medical Marijuana seemed to decrease the seizures.

Liked by Leonard

REPLY

Thank you for your information on atonic seizures it really helps hearing about others experiences. My daughter's returns to neurologist in a weeksuccessful and a half for regulating her VNS stimulator. We are going to try the Medical marajuana since the VNS has not been too successful. Next step he says is to do some cardiologist testing.

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