Epilepsy & Seizures Support Group

Hello Graeme,,

Like you, I have always been able to enjoy the show. But, my daughter, well, that's a different story. She learned to 'buddy up' & leave when the lighting or music affects her. She has been dxed w/ photosensitivity seizures, catamenial seizures, Temporal Lobe Epilepsy &&&& 'Hereditary Epilepsy'.

I was dxed w/ Temporal Lobe Epilepsy. But, have not been thru the extensive tests done in an EMU. (Epilepsy Monitoring Unit)

Hope you are having a good day. HUGS!

Love Candi

To have a seizure at a pop concert or any type of concert even movie or seeing a play in theature it would have to be stressiful or stobe lights to cause seizures.

Hey all-
Don't usually post in this group, but thought I'd add my 2 cents as a CNA and former EMT who used to work TONS of concerts and raves.
I also have had a few seizure episodes, which after video eeg and such, were proven to not be epilepsy. Dr thinks they are due to PTSD.
Anyway, Most people I have seen who have seizures at these shows are seizures due to photosensitivity as dancer stated.
Seems that strobes or different kinds of lights at different frequencies set people off...some can be very slow and others can be super fast.
Hope this gives everyone a lil insight and that you are all well.
Oh, one last thought...It always helps to ask you dr what he/she thinks before you go out!
Much love and respect to you all :)

Graeme I forgot to add...I know things may be different here in the US, but as for treatment, we were always very focused on helping the patient get calmed and come out of the seizure. Usually having medics on site at the show & hopefully solving the problem without having to take them to the hospital, unless the seizure was of the grand mal type or there was injury.
Hope this answers your questions.

Trinity,

PTSD can trigger seizures. And hon, if you have had more then 1 seizure it IS considered Epilepsy. No matter what the cause/trigger. Course there are Non-epileptic seizures, too. But, my Sis was told hers were due to PTSD when she was 16. (Father deceased) That was over 40 yrs ago. Since then, it has been H/A, Borderline diabetes, thyroid & now, 40 yrs later, hormonal changes. Her szs were un-medicated till she was dxed w/ hormonal (Catamenial) szs.

I liked your answer about the treatment of 'episodes'. Sounds like you got a good attitude & your team was well informed. Except Gran Mals/tonic-clonics do not require hospitalization, either. That is if they are over w/in 2-3 minutes & we haven't harmed ourselves. It's them 10-20 min non stop that require ER. :( I hope you have a good day. Thank You for such a great response. :)

BTW: Are you on medication for your PTSD &/or seizure disorder? I assume that is the label your DRs put on your 'episodes'? Do you keep a Journal? Hope you don't mind the questions. Very curious! :)

Love Candi

Hi Candi-
I am on topamax 100 mg 2 xs a day, but I actually take that for migraines.
I have been told by a few drs, when my fiance' has become worried when I have my "episodes" and thken me to the er, that they think I am faking it or I have "pseudoseizures", It's so discouraging!
Why in the world would I want to fake something so hard on my body that I hurt like hell after?
You are absolutely right about the GM seizures...if they are short no hospital is needed.
Much love-Trinity

Oh and yesh I do journal on my cell :)

Hello Trinity,

Thank You for answering my questions. I have done my 'homework' on pseudo-seizures. A LOT of ppl are misdiagnosed cuz their tests are 'normal'. :( Like our meds, it takes time, patience to get results. So, Stay on the DR/test merrygoround.

I KNOW my daughter's seizures are the real thing. But, when taken off her meds last mth, while in the EMU for videoEEG, she didn't have a single seizure. Kinda like 'Murphy's Law'. Ain't nothing gonna happen when it's supposed to. ALL my tests, except the last one, came back normal. The last showed 'wavy lines'. Whatever that means. But, I KNOW my seizures are 'real', too.. :)

Did you know that seizures & migraines are associated? Columbia University has a research article w/ their findings.

Since the Topamax isn't controlling the seizures, have you considered 'alternatives' like diet? A nutritionist can help you get started. For more info &/or advice please visit http://www.coping-with-epilepsy.com/

Keep learning about EP. It don't hurt to know as much if not more then them dang DRS. :) Forget the ER. My Sis was diagnosed numerous times by the ER & each DR had a different opinion. So, If possible find an Epilepsy specialist/epileptologist (SP?)

Love Candi

I had a seizure one time at a friend's dance recital when they used strobe lights....it was a mild one and my boyfriend was there to help me.

I ended up not feeling so well so I just left during intermission.

sometimes I do ok but a lot of times with lights it's tricky

Thanks Candi!

So nice to have people who understand. I will keep with it :)