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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

What Is Your New Years Resolution(s)?
A MyEpilepsyTeam Member asked a question 💭

my new years resolution is to to be healthyer. just wondering what is your new years resolution(s)?

A MyEpilepsyTeam Member

MarleneFerraro: thank you and good luck to you as well! i always have a list of things i'm working towards. Sometimes i dont hit the goal by the time i set it so i reevaluate and adjust what i need to… read more

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.

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

About Flashback Problem
A MyEpilepsyTeam Member asked a question 💭

I went out yesterday purposely and I'm happy again! I can't wait for this weekend! I'm going to finally do open mic again! Last time was 2020 and I blocked him. I spoke a little ruff to him first

A MyEpilepsyTeam Member

Hum

Does Anyone Get Scared When You Since That You Are Going To Have A Seizure
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

Yes but for me it happens in stages,firstly i feel a different sense of reality, secondly i realise my coordination/balance/vision is impaired and thirdly i realise whats happening between a fog of… read more

Has Anyone Had Brain Surgery To Correct Their Seizures? Im Scared And Would Love To Hear Your Stories And Get Any Advice I Can
A MyEpilepsyTeam Member asked a question 💭

I've got complex partial seizures with identified abnormality in my temporal lobe. Seizures are focal so my neurologist said surgery is an option I should consider, but I'm pretty scared and not sure it is worth it. My seizures aren't very bad and I could still lead a mostly-normal life but I plan to become a doctor and with sleep deprivation being a major trigger for me it may prevent me from pursuing my desire to work in a hospital (which means long hours). Im not sure about the process of… read more

A MyEpilepsyTeam Member

I had surgery in July of 2004, a left frontol lobectomy. I guess my only side effect was that my IQ increased to an above average level, it's working well, my last seizure was in 2011 and I still take… read more

Withdrawal From Clobazam
A MyEpilepsyTeam Member asked a question 💭

As part of my little medicine cocktail I'm on 20 mg am ,20 mg am of clobazam ( Onfi ,Frisium) I'm still awaiting contact from my new neuro.I decided to reduce the night time dosage to 1 tablet .I know it's a benzodiazapine & strong Anybody had problems weaning themselves of this ? I don't intend to reduce it any more TIA

A MyEpilepsyTeam Member

I din’t have Onfi but do have friscium!

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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When Seeking A Second Opinion?
A MyEpilepsyTeam Member asked a question 💭

I was wondering when you seek a second or third opinion from a doctor do you tell ,share include all your diagnosis from previous doctors, neurologist .
Should that information be included?
would those previous diagnosis or medical opinions affect the opinion of the new doctor your seeing?
That's what my concern is really is that they will just agree with previous diagnosis.

A MyEpilepsyTeam Member

I have a neurologist of whom I am not fond. However, she is in practice with a man I do like. Is there a gracious way to say I would prefer to see this doctor?