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mopinko

(71,911 posts)
Tue Apr 8, 2014, 08:13 PM Apr 2014

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

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

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how does this happen? my daughter was dx'd today w temporal lobe epilepsy. (Original Post) mopinko Apr 2014 OP
Major vibes for you and your daughter, my dear mopinko... CaliforniaPeggy Apr 2014 #1
'they are optimistic about treatment, and i think i am going to get my little girl back.' elleng Apr 2014 #2
such a lesson in connecting dots that are not connected. mopinko Apr 2014 #3
The google: elleng Apr 2014 #4
being in both sides makes it general epilepsy, the most heritable kind. mopinko Apr 2014 #6
she even had a few obvious seizures. mopinko Apr 2014 #8
DAMN! elleng Apr 2014 #9
well there were plenty of key docs who could be liable. mopinko Apr 2014 #20
Sounds ok to me. elleng Apr 2014 #21
Now that you have a diagnosis Downwinder Apr 2014 #5
i hope the treatment gets her back to you fizzgig Apr 2014 #7
What a long hard road this has been. LiberalAndProud Apr 2014 #10
yup. it sure does. mopinko Apr 2014 #18
I have blinding, head exploding, puking, fetal position on the bathroom floor migraines sometimes. hunter Apr 2014 #11
common symptoms- mopinko Apr 2014 #13
They used to blame moms for asthma, autism, and homosexuality too... hunter Apr 2014 #17
yup. had some of it outright, in my face. mopinko Apr 2014 #19
What a relief libodem Apr 2014 #12
iirc it started out as an epilepsy drug. mopinko Apr 2014 #14
It seems pretty similar to the neurotin libodem Apr 2014 #16
and yes, feel free to rec this. mopinko Apr 2014 #15

elleng

(136,595 posts)
2. 'they are optimistic about treatment, and i think i am going to get my little girl back.'
Tue Apr 8, 2014, 08:19 PM
Apr 2014


Best thing I've read all year!

mopinko

(71,911 posts)
3. such a lesson in connecting dots that are not connected.
Tue Apr 8, 2014, 09:08 PM
Apr 2014

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

(136,595 posts)
4. The google:
Tue Apr 8, 2014, 09:42 PM
Apr 2014

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

(71,911 posts)
6. being in both sides makes it general epilepsy, the most heritable kind.
Tue Apr 8, 2014, 10:10 PM
Apr 2014

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

(71,911 posts)
8. she even had a few obvious seizures.
Wed Apr 9, 2014, 09:21 AM
Apr 2014

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

(136,595 posts)
9. DAMN!
Wed Apr 9, 2014, 10:25 AM
Apr 2014

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

(71,911 posts)
20. well there were plenty of key docs who could be liable.
Sun Apr 13, 2014, 08:41 PM
Apr 2014

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.

LiberalAndProud

(12,799 posts)
10. What a long hard road this has been.
Wed Apr 9, 2014, 11:14 AM
Apr 2014


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

mopinko

(71,911 posts)
18. yup. it sure does.
Wed Apr 9, 2014, 05:33 PM
Apr 2014

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

(39,005 posts)
11. I have blinding, head exploding, puking, fetal position on the bathroom floor migraines sometimes.
Wed Apr 9, 2014, 01:10 PM
Apr 2014

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

(71,911 posts)
13. common symptoms-
Wed Apr 9, 2014, 02:53 PM
Apr 2014

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

(39,005 posts)
17. They used to blame moms for asthma, autism, and homosexuality too...
Wed Apr 9, 2014, 05:29 PM
Apr 2014

... 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

(71,911 posts)
19. yup. had some of it outright, in my face.
Wed Apr 9, 2014, 08:24 PM
Apr 2014

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

(19,288 posts)
12. What a relief
Wed Apr 9, 2014, 01:51 PM
Apr 2014

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

(71,911 posts)
14. iirc it started out as an epilepsy drug.
Wed Apr 9, 2014, 02:54 PM
Apr 2014

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

very fond of my lyrica as well.

libodem

(19,288 posts)
16. It seems pretty similar to the neurotin
Wed Apr 9, 2014, 04:00 PM
Apr 2014

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

(71,911 posts)
15. and yes, feel free to rec this.
Wed Apr 9, 2014, 02:55 PM
Apr 2014

i am sure many here have similar stories.

thinking of beherenow. we shared many stories.

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