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Epilepsy

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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Anyone Have Any Tips On Getting Doctors To Listen?

Anyone Have Any Tips On Getting Doctors To Listen?

So, I’ve been trying for nearly a year now to get my medication changed (Lamotrigine). I hate it. It makes me feel terrible and makes living life as a university student very very difficult.

I had an appointment with a neurologist and when i expressed all the problems i had he dismissed me and told me that i was in a “good middle ground” because the seizures i’m having are small and only last a couple minutes (i get really confused and have to remind myself where i am, what’s happening, etc)… read more

A MyEpilepsyTeam Member said:

I would like to know the same thing. My daughter has a rare condition of epilepsy, she is 8 yrs old and i finally snapped today via e-mail to head of pediatric neurology. I have HAD IT!!!

posted 3 days ago

Seizures Every 6 Months?

Seizures Every 6 Months?

My son has been getting better at remembering to take his medication on his own but continues to have seizures every 6 months almost exactly even if he takes his medicine on time. Has anyone had experience with having seizures every 6 months?

A MyEpilepsyTeam Member said:

One thought that crossed my mind, that your son’s seizures maybe triggered by seasonal change. My questions is what seasonal months are they changing ? Is it between Fall into Spring and Vice versa… read more

posted 4 days ago

Does Anyone Else Ever Wake Up Sometimes In The Morning And Have A Jerking Motion, Not A Seizure Just Jerking Motions?

Does Anyone Else Ever Wake Up Sometimes In The Morning And Have A Jerking Motion, Not A Seizure Just Jerking Motions?

.

A MyEpilepsyTeam Member said:

I sometimes have jerks or tick like movements when im over exhausted, and sometimes people well tell me they notice much more of those jerks or ticks before a full out seizure happens. ( not before… read more

posted 6 days ago

Has Anyone Had Or Has Seizures That Start With A Severe Thumb Cramp?

Has Anyone Had Or Has Seizures That Start With A Severe Thumb Cramp?

My Grand Mal seizures always would start with my right thumb cramping up to a point that it feels like my hand is peeling back open on itself. It's the worst pain you could ever imagine. I would start praying to go unconscious so I wouldn’t feel it anymore. Then that's when the convulsing and actual seizure would start after I blacked out. I would wake up 20-45 minutes later very confused and with a headache and all the blood vessels above and around my eyes would be popped from straining soo… read more

A MyEpilepsyTeam Member said:

What's great bout this is you know those horrible seizures are controlled. We all have unique types of feelings,sensations at start of seizure. Body parts used most- as you said your thumb reacts at… read more

posted 6 days ago

Have Anyone Had Children During The Epilepsy Exspireince ? , Being Diagnosed Epilepsy?

Have Anyone Had Children During The Epilepsy Exspireince ? , Being Diagnosed Epilepsy?

I am 25 years old , is scared to have children because of my disgnose , I need a little support ,

A MyEpilepsyTeam Member said:

Yes. My daughter actually has a few pair, just in case we lose a pair which we are known for. My windows are tinted so dark they are illegal Bc she and I both, her worse than me, can barely walk… read more

posted 3 days ago

Epileptic Surgery???

Epileptic Surgery???

My son is in the process of being tested for temporal lobe epileptic surgery. The neurologist told us it will stop the seizures. Has anyone in the group experienced this or have any positive feedback?

A MyEpilepsyTeam Member said:

I had laser ablation in 2020 , the first 8 months i was seizure free, then i started to slowly get seizures again. Now i get them sometimes, mainly around my period. Or missed meds. I used to take… read more

posted 6 days ago
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Has Anyone Been On Vimpat? I Noticed It Makes Me Angry Has Anyone Else Had This Effect?

Has Anyone Been On Vimpat? I Noticed It Makes Me Angry Has Anyone Else Had This Effect?

A MyEpilepsyTeam Member said:

Thank you it is definitely a challenge to find both the right doctor and the right meds I’m glad you found some that works for him I’m glad you shared it let’s me know I’m not alone with all this

posted 4 days ago

Gelastic Epilepsy

Gelastic Epilepsy

Hello friends,
I have gelastic epilepsy and have been on the search for anyone with this exact seizure as well. If anyone can connect me that would be great!

A MyEpilepsyTeam Member said:

Hi Christina . Did you know, that you have a rare type of Epilepsy? 1 maybe 2 children out of a 1,000 kids w/ Epilepsy may get this. It even more rare for you to be diagnosed with this. It’s more… read more

posted 8 days ago

Medical ID Vs. Service Dog

Medical ID Vs. Service Dog

I have non epileptic seizures and I would like to get some peoples opinion about different types of medical Id bracelets/necklaces or anything that is similar compared to getting a service dog.

A MyEpilepsyTeam Member said:

I have a Medic Alert bracelet for a long time and i guess it works when i am alone and have a seizure. But a member from this site recommended to get a My ID bracelet also which i am very satisfied to… read more

posted 9 days ago
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