Is that what they call them? Breakthrough seizures?
A breakthrough seizure is an epileptic seizure that occurs despite the use of anticonvulsants that have otherwise successfully prevented seizures in the patient. ...
http://en.wikipedia.org/wiki/Breakthrough_seizure
"atypical" means not typical. In this context, I take it to mean a different type of seizure from what she has experienced in the past.
... What concerns me is during one of these seizures her head went up and to the right very stiff. I thought she was going to snap her neck. That lasted about ten seconds before she started to shake. ...
That sounds to me like a complex partial seizure that generalized into a tonic clonic. It's a fairly common progression for people who have tonic clonic seizures.
... Anyway I'm afraid if this happens then the jarring will actually cause her neck to snap. I'm I being paranoid?
It's perfectly natural to be concerned. If it makes you feel any better, I have witnessed my wife experience well in excess of 100 tonic clonic seizures over the years. I've been there when she has dropped a glass and fallen/convulsed on the broken shards, when she stiffened up and shattered her two front teeth on a door jamb, when she stiffened up and fell and hit the crown of her head on a window sill opening a gash that gushed blood like a scene from a horror movie. She has fallen in the shower and convulsed in numerous places that didn't give her freedom of movement. In all cases, she never sustained any injuries from body parts snapping. When she goes rigid (the tonic part of the seizure) and falls, she has never been hurt from the fall in that manner (ie. from opposing force to the muscles).
... She started the seizures last yr and that's when she started going through puberty. Her neurologist thinks she has been having them since she was 4 but I honestly don't think so. I have been reading everything I can get my hands on and it seems puberty makes the most sense. Yesterday was the last day of her period. Does that sound like maybe the reason? The ending of her pd?
Yes, it sounds very likely to be a contributing factor. Folks with catamenial epilespy experience greater seizure activity in the days around the menstruation period. My wife actually adjusts the dosage of her medication slightly during these periods. Bear in mind that it is also possible that heavy bleeding during a period can affect the blood syrum of medication even if the hormonal changes aren't directly responsible for the changes to the seizure threshold (so a normal dose of medication may not be providing the same steady level of medication in the blood stream).
Are grand mals the same thing as atypical seizures? What I have been reading has been confusing. It's telling me that a person slumps over when they have these.
Grand Mal is old terminology and no longer used. Tonic Clonic is a more precise description for what most people used to call grand mal.
http://en.wikipedia.org/wiki/Tonic–clonic_seizure
It is possible to have clonic seizures (the convulsing) without the tonic (stiffening). That's one reason for the change in terminology - to allow a more precise description of what is happening for every individual.
... when the shaking stopped she seemed to pass out. Eyes closed. When she opened her eyes both times they were fixed to the right but not looking at anything. She did lose consciousness for most of it.
This is all pretty normal for a tonic clonic seizure. My wife always stops breathing for up to 10-15 seconds after the convulsions stop too (seems like a *lot* longer when you are witnessing it in the moment).
... Is her shaking the convulsions?
Yes. That is the clonic seizure.
... Is it normal to have more then one kind of seizure during an episode.
Many people can have up to 4 distinct seizure phases in an episode - an aura (simple partial seizure) precedes a complex partial seizure (head turn to the side, slurred speech) generalizes into a tonic seizure (stiffens and falls) precedes a clonic seizure (convulsions) followed by the no breathing followed by the post ictal phase (not fully conscious even if they open their eyes and manage to speak / respond confusedly to questions).
... Plus I'm so overwhelmed when talking to them that I can't think straight. The questions come to me later.
I highly recommend you get a notebook and write down questions that you want to ask before you get there. I also recommend a "seizure diary/journal/calendar" where you (or your daughter) takes notes on seizure activity (type, frequency, duration, etc.) and anything you think that might be related (diet, sleep pattern, period, etc.).
... I'm so glad I finally have people to talk to and telling me they still live normal lives without someone always with them. That's the thing I was really looking for. Some assurance that things will be ok. This forum is really helping me cope with this. Thank you guys so much!
There is a decision to be made in balancing safety with freedom. I think most people with epilepsy tend to decide the pivot should be far to the end of the freedom spectrum. Caregivers and loved ones usually think the pivot should be further towards compromises for safety. There is no single correct answer for everyone.
I might offer that if the compromises for safety impact the quality of life too much, there is a risk of killing the spirit - existence without "living" if you get my meaning. I've come to accept that my wife has the right to engage in activities that might put herself at risk (herself only). It's her life after all.
...
I just want to know that she will not die.
No one can guarantee what the future holds. SUDEP is a real, though very small, risk. That said, I would encourage you not to live a life of fear. Carpe diem.
