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Old 09-24-2006, 01:30 PM #1
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Default Seizures and "Aunt Flo"

I think that I am on to something but needed it to happen again before I could point my finger at an ovary and scream, "YOU!" at it.

I am 99.9% positive my period is triggering the worst seizures I have. These differ from all of the others, and they are so bad I would prefer a drop-seizure in public over them any day. Just so you get the idea of this pain.

Just so I can go better into detail here, I was in labor, literally, for over two months. Flat on my back, sucking up shots, steroids and magnesium sulfate every single day - but the labor pains never stopped. I am OK with pain, my pain tolerance is very high, high enough that I didn't notice I was in pre-term labor until it was too late, and the other time, I had to get emergency surgery because I blew off 'cramping'.

It isn't a good thing! I wish sometimes I were better able to notice pain, but then again - that may mean these seizures would hurt even more.

Next, I am pretty good with shocking material. I was 14 when I was told I had the pre-cancer cells on my cervix and acted as any normal teen would, "Am I going to die?" No? Great! I've had so many cancer scares and haven't even hit 30 yet. I am always the calm one.

Now, on to these evil seizures. They scare the living crap out of me and have caused me to question if I was dying or not. They are THAT bad. I go blind, I can't move, I can't talk, and the pain is so awful I cannot hardly stand it. I noticed something though, they only come once a month and as I started to review my journal - they always come the day before my period. My period is not regular, it's always a surprise.

The weird part is that they are worse each time, and they started about 5 months ago. They are 'new' for the most part. My other seizures are typically painless unless I hit something on my way down, they do hurt afterwards but just your standard headache, muscle aches, etc.

I don't know what these things are, my doctor says seizures - but my cycle and I are going to have a faceoff here soon should this continue. I was almost ready to call my doctor and beg for pain pills. I don't even take pain pills, ever! I may use a Relpax for a migraine I can't ditch, but that's all. Simply put, this pain may only last a day or two but it is horrible pain. I compare it to my Trigeminal Neuralgia - it is like it has moved all around my body.

I don't know if I can do anything about this, but has anyone heard of such a thing? Google is not helping me, and I dread next month already. I am half tempted to ask them to just take out my womanly parts to save myself a lifetime of once-a-month agony.

Sorry for ranting, but these just stink. I've been in bed since Thursday for the most part because of it. And I am still tired.
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Old 09-24-2006, 10:05 PM #2
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Thumbs down been there, done that!

They're called "catamenial seizures". I know, because I had them myself,
for years. It always happened either the first day of my period, or the
day before my cycle started. And, mine were always grand mals.

I did try to take "the Pill" to stop my period-since I couldn't seem to get
the seizures under control-but the AEDs I take made the "Pill" useless.

Now, having said that, I should tell you that I haven't had anything like
that for several years. Probably because the combination of Keppra and
Dilantin is finally controlling my GMs.

The only thing I can suggest is to have your neuro and your GYN work
together to try to find a solution for you. That's what they had to do
with me-my neuro and my GYN sent messages back and forth trying to
figure out what they could do for me. Eventually, I stopped having the
seizures during my period and then they stopped altogether.

Good luck!
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Old 09-25-2006, 10:32 AM #3
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Thank you soooooo much. I'm calling them both today!
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Old 09-25-2006, 10:36 AM #4
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You're welcome, Ellie! I'm glad I could help!
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Old 09-27-2006, 09:33 AM #5
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Ellie, have you talked to your doctors yet? How did it go?
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Old 09-27-2006, 10:14 AM #6
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my 15 yr old started these last year before she got her first period. She has always had E, but last year, and the year prior to her first period, her E got signifignatly worse. she is on three meds, with the VNS. the three days prior to her period, she is almost a catatonic zombie princess. tired as all getalong, and pale as a sheet. Just a complete nightmare. After it starts, she goes back into her regular seizure pattern.

Ovaries, uteruses...who needs em'.
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Old 09-27-2006, 11:29 AM #7
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Quote:
Originally Posted by Braindrain View Post
Ellie, have you talked to your doctors yet? How did it go?
She didn't call me back

Quote:
Ovaries, uteruses...who needs em'.
That's what I plan to tell my GYN when I meet him/her!!
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Old 09-27-2006, 11:46 AM #8
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nice to hear Im not the only one awaiting a call back. or two, or perhaps...three!
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Old 09-27-2006, 12:06 PM #9
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I can't wait for menopause...or a hysterectomy, whichever comes first!
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Old 09-27-2006, 01:51 PM #10
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Well, I am only 29 years young () and wanted another child, but they did a 'suggested' tubal ligation when I was 22 due to endometriosis and scar tissue from an un-diagnosed ectopic pregnancy. It put me at an even higher risk, so I really wouldn't mind losing the organs since the only reason I'd want to have them is too far out of reach for me to do anything about it.

Hell has a better chance of freezing over before I care to keep any of my 'womanly' parts. They cause me nothing but problems, I don't think they have done more than one good thing for me. The only good thing was having my son, although I spent nearly 3 full months in the hospital keeping him in.

I always tell my partner they need to create a lemon law for humans. Maybe he could get a refund.

And yeah, I am almost ready to give up on calling my Neurologist. Always by the time she calls back I forget why I even called her. I should just mail her my stack of post-it notes once a month. Perhaps suggest where she put them? *Snickers*
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