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What Treatment For Epilepsy? I've Been On 6 Different Meds.
A MyEpilepsyTeam Member asked a question 💭

Every couple of years I have seizures then my Dr wants to try something new or ups the dosage. The meds I'm on now are making me dizzy and off balance

A MyEpilepsyTeam Member

I have been on too many meds to count. I was on phenobarbital, volume, Dilantin, Depakote, Topamax, and vimpat just to name a few. My son is on Trileptal, Keppra, Onfi, Depakote (two, 250 mg, and… read more

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I'm Pregnant And My Seizures Have Increased A LOT. Does Anyone Have Experience With C-section Vs. Vaginal Birth Under These Circumstances?
A MyEpilepsyTeam Member asked a question 💭

I usually have 2-3 grand mal seizures each year. I've had 8 now, in just the first 5 months of my pregnancy. Given my experience over the last 21 years of my life since I was diagnosed, I think I'll have a seizure during labour (fatigue & stress). Its a huge concern of mine and I think a planned C-section is a better option.

A MyEpilepsyTeam Member

I had my sons very young 18 I was pregnant and had our oldest 8.lb 9oz ...ouch !! I did have seizures in my pregnancy and did a natural delivery. Second son was just under 8 lbs ??? You should do… read more

Tegretol/Carbamezapine
A MyEpilepsyTeam Member asked a question 💭

Hey everyone
I've been on tegretol/carbamezapine in various doses since I was about 15. I am now 27
I've been starting to think more about side effects, dependency and whatnot as I get older. Does anyone else worry about this? Like what the drugs are doing to your body? I still have seizures roughly once every two weeks, maximum is usually 4 a month, but I have started looking into alternative treatments as well, like acupuncture and the keto diet. My neurologist mentioned to me that if I… read more

A MyEpilepsyTeam Member

I was advised to iincrease to 600mg morning 800mg in November 2018. It's now March 14 2019. I started having increased seizures from once a month to many more some days having 4. So when I saw my… read more

What Songs Do You Listen To, To Cheer You Up?
A MyEpilepsyTeam Member asked a question 💭

I love listening to music and i have a few songs i listen to when it's a bad day. I'm looking for some newer ones if anyone has one.

A MyEpilepsyTeam Member

Some songs that I like:

#1. Mary J. Blige- Just Fine
#2. Owl City- Fireflies
#3. DiL- Don't Let Go
#4. Joeboy- Alcohol 🍸
#5. Kes- Hello 👋
#6. Efya- Best In Me
#7. Halsey- Without Me
#8. Selebobo-… read more

Does Anyone Use The Watches That Help Detect Seizures? Are There Certain Things You Need To Take It Off To Do So It Doesn't Set Off.
A MyEpilepsyTeam Member asked a question 💭

Will it set off with excessive motion.

A MyEpilepsyTeam Member

I have heard of this but I am afraid to shell out the money only ro have it not work. I'm waiting for it to be out a little longer so I can hear how well it works. If it works well, I would be more… read more

Rns Device Implant
A MyEpilepsyTeam Member asked a question 💭

I'm going to have the RNS implant in March. And all I want to know is has anyone else had it done and dose it work . I go in March to Vanderbilt medical center in Nashville Tennessee.

A MyEpilepsyTeam Member

I have had the RNS for 4 years 1 battery replacement and a ton of adjustments. When I first got it i was having 12-14 seizures a month. Now I'm down to 4-6 so cut in half and some of them I barely… read more

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So After Having Seizures For 14 Yrs Now In The Past 6 Mths They Been In My Sleep Early In The Mornings
A MyEpilepsyTeam Member asked a question 💭

Due to my 1st son being stillborn in 2006 i began the seizures, never knew why, never had them before then. Now in the past 6-8 months ill only have maybe 1 a month but it comes early in the mornings while im asleep

A MyEpilepsyTeam Member

You may want to talk to your Neurologist or Epileptologist . You may need to have an a EEG and MRI . You may have another area in your brain that your seizures are located .

I had a a EEG and MRI… read more

Is It Recommended That People With Any Type Of Seizures Not Drive?
A MyEpilepsyTeam Member asked a question 💭

Is it true that people with any of the types of seizures shouldn't drive? I totally understand why I shouldn't (I experience tonic-clonic seizures), but what about those with the other types?

A MyEpilepsyTeam Member

Some states
Periodic medical updates are required each year until seizure free for 3 years.
AND
KENTUCKY 90 days

Can Someone Put This In Lay Terms, About Life Expectancy?
A MyEpilepsyTeam Member asked a question 💭

Article: https://pubmed.ncbi.nlm.nih.gov/15371287

"Reduction in life expectancy can be up to 2 years for people with a diagnosis of idiopathic/cryptogenic epilepsy, and the reduction can be up to 10 years in people with symptomatic epilepsy. Reductions in life expectancy are highest at the time of diagnosis and diminish with time. Our model provides broad estimates, but it appears that the higher mortality rates in people with newly diagnosed epilepsy translate into decreased life expectancy."

A MyEpilepsyTeam Member

You can’t really say when you go to heaven. That’s God’s choice so I don’t believe that stuff about life expectancy with seizures

Osteopenia And Possible Med Change
A MyEpilepsyTeam Member asked a question 💭

I was diagnosed earlier this week (2-14-2023) with ostopenia in my left leg and hip. I am concerned that this condition may be a side effect of the Dilantin/phenytoin that I take. I'm wondering if I should switch to another seizure med. I know you're not doctors but has anybody else encountered this problem? What action was taken by you and your doctors?
PS I know ostopenia isn't reversible. I'd just like to perhaps lessen the ongoing damage.
Thanks in advance.
Peggy Shore

A MyEpilepsyTeam Member

Physical Therapy is strenuous. I came home and took a 3 or 4 hour nap...lost track.
3lb ankle weights are a lot for this skinny body. When they work me up to 5lbs I don't know how I'll do.