how does this happen? my daughter was dx'd today w temporal lobe epilepsy.

[mopinko]

NOT PTSD
she isnt having hallucination because she is crazy, same for the anxiety, the puking, the headaches, the pain.
yeah, they were all in her head. just not because her mother is evil. how about that.

but ffs. she had extensive neuro/psyche testing that came up with the ptsd dx.
how the hell could they have missed a serious case of epilepsy?

the best bad news ever, tho. omg. i was just so confused by the whole situation. i know shit happens sometimes that parents dont see, but her she was really a happy little kid.
she has physical stuff also, and has gone through a lot of things little kids shouldnt have to go through, and i always sorta put it on that. plus years of pain problems can really burn up a brain.

they are optimistic about treatment, and i think i am going to get my little girl back.
wow

[CaliforniaPeggy]

1. Major vibes for you and your daughter, my dear mopinko...

I hope you get your little girl back too...

[elleng]

2. 'they are optimistic about treatment, and i think i am going to get my little girl back.'

Best thing I've read all year!

[mopinko]

3. such a lesson in connecting dots that are not connected.

we just happened to have a house break in when this was getting ramped up. when she started seeing people on the street when she was walking home, well……..
that is really the core of the ptsd. seeing things in the shadows, plus extreme anxiety, making you puke even, plus the emotions of a 18 year old coming unglued. oy oy oy.
we have so long to go.

this one place especially. shrinks and neurologists are starting to talk more, but they have a long way to go.

another thing i never wanted to ask the google, but it is possible that her sister has this as well. she has terrible puking issues.

[elleng]

4. The google:

Temporal lobe epilepsy (TLE) is the single most common form of partial seizure.[2]
Temporal lobe epilepsy is not the result of mental health disorders or fragility of the personality.
Individuals with temporal lobe epilepsy have a high prevalence of depression.

Incidentally, Temporal lobe epilepsy may be a less likely explanation for the revelational experiences of prominent religious figures such as Abraham, Moses, Jesus, Mohammed and Saint Paul because they had complexity of their interactions with their visions, a lack of reported stereotypy, an absence of amnestic periods and an absence of reported automatisms or generalized motor events with their revelatory experiences. Psychiatric conditions with psychotic spectrum symptoms were reasoned to be a more plausible explanation of their revelatory experiences.[59]

http://en.wikipedia.org/wiki/Temporal_lobe_epilepsy

[mopinko]

6. being in both sides makes it general epilepsy, the most heritable kind.

her sister has a very similar story.

they mentioned head injuries to her. she had an er visit when she was little, but from my quick google, unlikely to be the cause. besides, her sister took way more tumbles than she did.

can my world just stop spinning, tho? lots of good things happening, but i feel like i am on an ice flow or something the way things keep shifting.

[mopinko]

8. she even had a few obvious seizures.

bright lights and all. told the doc, but, well it's just that little crazy girl looking for drugs.

she also has a tremor that is related that has halted the tattoo apprenticeship she was in the middle of when the shit hit the fan.

its really unbelievable. if her sister turns out to have it, i am going to have to kill a few people. she has seen more doctors for her headaches and puking than i can count without puking.

[elleng]

9. DAMN!

If it weren't a series of docs I'd suggest legal liability; as its more than one, I'll just suggest plain old widespread foolishness, idiocy. Worse than that, as they can't rely on woman/mother's description of events. I do know how 'ignorant' med profession has been re: alcoholism.

[mopinko]

20. well there were plenty of key docs who could be liable.

not just a shrink, but they put her through neuro/psyche testing. i mean, wtf.
the physical stuff goes on and on, but there is some serious bullshit on that front, too.

really, i'd rather just tear them limb from limb.

[elleng]

21. Sounds ok to me.

[Downwinder]

5. Now that you have a diagnosis

she can get treatment and start getting well.

[fizzgig]

7. i hope the treatment gets her back to you

my best to you guys

[LiberalAndProud]

10. What a long hard road this has been.

With the diagnosis comes hope. Does it feel like you csn breath again?

[mopinko]

18. yup. it sure does.

she is feeling pretty good today, too.

she never gave up on her future, but she thought it was a lot farther away, on a much rockier road.

[hunter]

11. I have blinding, head exploding, puking, fetal position on the bathroom floor migraines sometimes.

Even with modern meds I still have occasional worthless days. Migraine meds take away the agony but leave my mind fuzzy.

I'm speculating that "temporal lobe epilepsy" carries with it a fair amount of PTSD.

I know I feel that way about my migraines and asthma. The violence related PTSD stuff is similar, but not so bad intellectually because I know it's old scars and not my own body sabotaging me yet again.

[mopinko]

13. common symptoms-

yeah, she kept seeing things in her peripheral vision. hello?
other daughter heard voices and spoke to spirits. hello?
oh, but their mom is a bitch, so…...

and yes, just as she was about to step up, go to college after high school hell. we had all won.
then crash

she is now totally confused about who she is. she has gender dysphoria, and she thinks she has multiple personalities, because her anxiety can take over, and make her fire up. or collapse in.
i cant imagine how hard it is to come of age with what she has gone through.

i tell ya what, tho, she is my hero. she has been treated abysmally by doctors. in fact, i have urged her repeatedly to sue even before this. but she just would not stop until she got answers, until someone listened.
sincerest thanks to the handful of docs in her life who did their jobs and treated all of us all like human beings.

[hunter]

17. They used to blame moms for asthma, autism, and homosexuality too...

... it's still like that in some backwards places.



Sadly many of the people we seek help from, doctors and mental health professional included, still base some or all of their practice on superstition. As a consequence people suffer inappropriate or unnecessary care, or are blamed, bullied, and judged (or worse) for circumstances that are innately human and not consequence of "poor" parenting, evil spirits, "wrong" thinking, moral weakness, and the like.

[mopinko]

19. yup. had some of it outright, in my face.

tried to get her gastro to re-sign her 504 plan for school. all it really got her was excused absences and tardies. this was likely the time when the the seizures started. she was exhausted, not sleeping, having unexplained pain. she looked like hell on toast.
doc told me, right in front of a 5th grader, that i was just coddling her, and needed to drag her our of bed and send her to school.
i think it was probably my most epic f-bomb

[libodem]

12. What a relief

To have a solid dx. I had years of debilitating migraines with an aura after a fall from a pony as a kid.

Seems like many of these types of incidents should be investigated as a type of atypical seizure disorder.

I think the action of the Lyrica I take for nerve pain may protect me from having the frequency of migraines I used to experience. They are rare now.

[mopinko]

14. iirc it started out as an epilepsy drug.

but that sort of fall is absolutely associated with focused epilepsies.

very fond of my lyrica as well.

[libodem]

16. It seems pretty similar to the neurotin

I used before but I don't have to take it as often nor as much of it. I'll bet Lyrica is pretty similar to, Neurotin, an anti seizure drug. I have seen it used like Depakote for seizures and to reduce 'behaviors'.

I also have a theory about some cases of intermittent explosive disorder having roots in undiagnosed seizures. Depakote is used sometimes with documented results.

[mopinko]

15. and yes, feel free to rec this.

i am sure many here have similar stories.

thinking of beherenow. we shared many stories.