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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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Has Anyone Found Cranial Sacral Treatments Helpful In Soothing Your Brain And Body?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

No need to apologize. Tell your neurologist's about the depression side effect of that medication
As someone who was once labeled as not likely to ever reach a long-term seizure free state (and have… read more

Carbatrol
A MyEpilepsyTeam Member asked a question 💭

I've been put up to 1200 mg per day of tegretol retard. This is the maximum dose and seems very high - has anyone else been on such a high dose and did you suffer any side effects?

Last of 214 replies sign up to view previous answers
A MyEpilepsyTeam Member

The dosages of the meds are increased by your weight. I’m on Carbatrol too. I take them 3 time a day . The total mg equals 2,100 . Plus I’m on 4 other medications.

Epilepsy Diagnosis
A MyEpilepsyTeam Member asked a question 💭

When did you get it?

1950s

1960s

1970s

1980s

1990s

2000s

Last of 101 replies sign up to view previous answers
A MyEpilepsyTeam Member

Diagnosed 1992 I think winter. Oh wait nope summer.

Lamictal
A MyEpilepsyTeam Member asked a question 💭

Does anyone know if 200mg 2x day is a high dose? I mean I could ask my neurologist. Just curious.

A MyEpilepsyTeam Member

I take 1 200 in morning 2 at night and mind are brand name and never had problem but came sz free goning on 25 yrs as also take Tegretol 400mg 1 in morning 1 at night same time brand name

When You Were Told That Medication To Assist You, Did You Choose Surgery Or Alternative Solutions? How Well Did It Work For You?
A MyEpilepsyTeam Member asked a question 💭

I have heard in the past from several friends who have tried many others including surgery, implants or non-medication alternative methods. However, I think it would help if those of you who have to share your experience with those are now at the point where they have been told that medication will never allow them to reach a long-term seizure free state.

If Q + A section was better organized, then I would not have to ask this question, but we have a support site, so we have to do what we can… read more

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member Everyone gets nervous. Usually what helps is if you talk to your epileptologist/surgeon. From the surgeon, I learned there was a better chance of dying from a car accident… read more

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Smart Watch Apps Vs. Embrace 2
A MyEpilepsyTeam Member asked a question 💭

Hi all. My son recently started seizing (grand mal) again after 4 years of being seizure free. I’m looking to buy him a seizure alert device but wanted to know if anyone has any experience with them. I’m currently looking at My Medic Watch App which connects to a smartphone or the Embrace 2 Watch. Are there any other options out there? Your insight is much appreciated.

A MyEpilepsyTeam Member

Hi Becky. My son started having absent seizures when he was 7. At age 15 he suffered from his first grand mal (this happened after his father’s funeral. He died from congestive heart failure)… read more

Was Anyone On Topamax During Pregnancy?
A MyEpilepsyTeam Member asked a question 💭

My specialist has said I can now try for a baby! But i have a few risks cause I’m on 3 medication. 2 are safe but he says the topamax can be a risk...

A MyEpilepsyTeam Member

I had taken Topamax durring my pregnancy. Was fallowed closely by medical specialists for a “high risk pregnancy”. My child was born at 28 weeks with a severely low birth weight. The last few weeks… read more

Has Anyone Experienced A Significant Increase In Frequency And Severity Of Seizures With Perimenopause?
A MyEpilepsyTeam Member asked a question 💭

I am 100% positive that hormones are playing a huge factor in both the frequency and intensity of my seizures but I’m not sure where to start to address it. If anyone has any suggestions, PLEASE let me know!

A MyEpilepsyTeam Member

I started with seizures just as I was coming out of menopause at 54. I’m going to be 64 in June. All of my family and friends as well as myself think my epilepsy was brought on by a hormonal change. I… read more

Vimpat And Memory
A MyEpilepsyTeam Member asked a question 💭

Since I started taking Vimpat my memory has gotten worse. It seems to have gotten worse as my dose has increased. Has anyone else had this problem? Vimpat has also raised my blood pressure

A MyEpilepsyTeam Member

Ask your doc if vimpat messes up your memory. Our epilepsy is not remembering things. My friend who does not even have epilepsy tells me the older we get she even cannot remember stuff.

Has Anyone Been Warned Of The Dilantin And Calcium Interaction?
A MyEpilepsyTeam Member asked a question 💭

I've heard that it's best to take Dilantin 2 hrs from having food with much calcium. Some say calcium makes the Dilantin more difficult to absorb.
Does anyone else follow this?
Does anyone NOT follow this and found no problems?

A MyEpilepsyTeam Member

Hi Linda, Sorry to hear that you're going through so much stress. When a lot has to be done I try to treasure the small breaks in between to take deep breaths, watch short videos, or listen to a song… read more