Epilepsy

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Please answer this as it is very important to me.

Please answer this as it is very important to me.

Does anyone have any progressive myoclonic Epilepsy? If so could you add me on WhatsApp on this number please? (Phone number can only be seen by MyEpilepsyTeam users) This is extremely important to me as there is a chance that I may have it. Thanks, Courtney x

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A MyEpilepsyTeam Member said:

My Epilepsy is Frequent With My Absence Seizures, Freeze Seizures, Flash Seizures And Grand Mal’s Every Few Weeks, I Was Born With Seizures And Have… read more

posted 1 day ago
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I have trouble walking and slurred speech with a migraine and I don't know why

I have trouble walking and slurred speech with a migraine and I don't know why

I've had all the diagnostic testing in my brain, there's nothing pressing against the brain. It's all normal, also get lightheaded, and it all starts before the pain comes.

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A MyEpilepsyTeam Member said:

its a lot of things. meds, aura seizure, and/or a non epilepsy seizure. it probably the meds side effects.

posted 1 day ago
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Keto diet pills

Keto diet pills

Has anybody tried the keto diet pills? If so, did it effect you with your prescriptions for your epilepsy?

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A MyEpilepsyTeam Member said:

@A MyEpilepsyTeam Member i was 11 or 12 year old when i was first put on the keto diet. i was on 3 large meds 3x a day. almost immediately i was lowered… read more

posted about 20 hours ago
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Seizure Activity Explained in Detail? When or have you ever had a neurologist explain to you what many different seizures feel like?

Seizure Activity Explained in Detail? When or have you ever had a neurologist explain to you what many different seizures feel like?

I never had a neurologist or any doctor take to time to explain to me that not all seizures involve convulsing, falling, fainting or locking up. For years I contemplated suicide because I thought I was losing my mind, becoming "slow," becoming psychotic, etc. It took me years and my own exploring and research to learn that a lot of what I was and continue to feel or experience… read more

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A MyEpilepsyTeam Member said:

Thank you all ! I to live positive, Epilepsy does not or will not define who I am, Knowledge is power!

posted about 8 hours ago
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Auras: Who all gets auras at least sometimes before a seizure and what can you remember some of your auras to be?

Auras: Who all gets auras at least sometimes before a seizure and what can you remember some of your auras to be?

What do you feel like? What do you smell? What do you see?

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A MyEpilepsyTeam Member said:

When I first started having seizures I had no warning signs and that went on tell age 10 all the way until the age of 29 then I had 2 brain surgery once… read more

posted about 4 hours ago
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Toprimate time for a change i think

Toprimate time for a change i think

I have been on Toprimate since September 2018, i have gone all the way up tp 400mg on extended release with Onfi 20mg daily. Then i went back down to 200mg XR and CBD oil 50mg daily. Right now I am on 300mg XR daily, a waterpill during my pre menstrual cycle for catamenial epilepsy and CBD oil 75mg daily. Once I go above 200mg of toprimate i feel severe depression. It's so bad. It brings me down so much. Right now the 300mg isnt stopping my seizure activity and i still feel… read more

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A MyEpilepsyTeam Member said:

Try Trileptal but DAW the script.
It used for many things I've been on it Aug is 20yrs.
They use it for mood disorders and bipolar I found out a few… read more

posted 2 days ago
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Keppra/levetiracetam or lamotrigine/lamictal

Keppra/levetiracetam or lamotrigine/lamictal

I am currently on Dilantin and does not seem to be processing through my body the same after taking it for 40 years and been having spikes in my phenytoin levels over 30. I also have been experiencing more side effects. My neurologist is suggesting to switch me to keppra/levetiracetam or lamotrigine/lamictal. Any thoughts or experiences?

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A MyEpilepsyTeam Member said:

You can always ask for samples before taking the plunge.
I've been on Trileptal for 20yrs and have no issues. I'm prescribed the daily max of 1200mgs

posted 2 days ago
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Jock Itch

Jock Itch

A bit of an embarrassing question this but my epilepsy developed because of an autoimmune disorder and the steroids I'm on give me jock itch (foot fungus) from time to time. Has anyone else experienced this?

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A MyEpilepsyTeam Member said:

Talk to your doctor and or pharmacist for recommendations...as they know what meds you are on, and what might reaction it might have to meds...

posted 1 day ago
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Do you let your boss/supervisor know you have epilepsy?

Do you let your boss/supervisor know you have epilepsy?

Sometimes when I'm at work I have concentration problems/dizziness. I slow down, but I don't want my boss to think that I'm lazy or don't want to do the job. The job is very demanding, & I have to go at a fast pace. I'm thinking of letting my supervisor know, but I'm afraid of getting fired.

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A MyEpilepsyTeam Member said:

I think it is important to tell your boss and to teach them seizure first aid. Epilepsy is not something we should be afraid to talk about. It is… read more

posted about 19 hours ago
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Has anyone been to the Mayo Clinic?

Has anyone been to the Mayo Clinic?

What was your experience? Was it worth it?

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A MyEpilepsyTeam Member said:

My sister has MS and she’s gone to the Mayo Clinic several times. Her experiences were all excellent.

posted 4 days ago
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