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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

Does Anyone Have Any Seizures That Present Similar To A Panick Attack? What About Before An Episode/after One?
A MyEpilepsyTeam Member asked a question 💭

It's happened quite a few times at bedtime most recently last night, i feel heavy and disconnected but also like my body is moving around, my eyes quickly moving around...

A MyEpilepsyTeam Member

After my right lobe craniotomy on 12-16-2020 being a constant burden on my family unable to help out, drive or work had a couple of trips via ambulance to the ER. Seen for: 8/2/2021
Pseudo seizures &… read more

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 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 had more seizures in my 40's than any other time except my teens. The seizures I had in peri menapause were also more severe, causing a loss of memory and balance. It took weeks to get over each… read more

Who Is Excited About The NFL Playoffs Games?
A MyEpilepsyTeam Member asked a question 💭

I’m really happy that Tampa Bay Bucs made it. They’re playing home against Dallas Cowboys Monday night!

A MyEpilepsyTeam Member

I wish I could say something but my husband is a football official (he is an umpire). Both he and. I would be in so much trouble if it was found that he made a prejudiced statement. So enjoy the… read more

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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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

How Often Do You Get MRI?
A MyEpilepsyTeam Member asked a question 💭

I was wondering ,does your neurologist do follow up MRI?if so what's the frequency?
It's been 2 years since my last MRI and I would like to know if my Archonoid cyst has grown during that time as my symptoms have progressively gotten worse and I still have concerns That it may be the cause of my symptoms amongst other reasons.

A MyEpilepsyTeam Member

MRI will depend on your Doctor. And what information he/she is looking for. A lot of times for myself , my Epileptologist would schedule me a MRI appt., followed by a EEG or the Other way around. Then… read more

VNS
A MyEpilepsyTeam Member asked a question 💭

I lost count of how many seizures I had the past weekend. My next neurologist appointment was not scheduled till January. I may have to reschedule it and reconsider the VEEG if the ward is open.
To everyone with a VNS do you believe it has helped? What is the process of receiving one like? I've done some research and it makes me nervous to consider

A MyEpilepsyTeam Member

I would suggest to consider it as a last resort
I had VNS implanted and removed one year later. Complications with the wires in my neck caused nerve damage that I will forever feel, tingly feeling… read more

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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!