Those days leading up to the start of your period suck. And they suck even more lately because, yay, you have epilepsy. Hormones make everything worse. They are demons trying to beat the shit out of you with a sock full of batteries. And once you start, it may or may not get worse, depending on how your periods are.
Mine are like :
Even after my surgery for endometriosis, I still have a shitty period.
For me, my myoclonus and absence seizures double daily. I have almost no control over what happens when shark week starts. My mood isn’t too terrible, but my body hates me. And it likes to show how much it hates me by whipping my cup of coffee at the floor, or thank me by blanking out in the middle of a TV show so I have to rewind it about two or three times. And the nausea, my god, it is so bad. Just coughing gags me, and did during my first day of classes(yesterday). I ran out of the class with puke in my mouth, stepped all over a girls backpack(not sorry, you should have put it under the seat) on the way out and up chugged in the trash can just outside. I got a lot of stares. But, I made it to the trash (self-five!).
When your symptoms get worse during your period it’s called Catamenial Seizures according to epilepsyontario.org:
Catamenial seizures are associated with a woman’s menstrual cycle. For more than 100 years, the relationship between seizures and menstruation has been examined. Studies have shown that fluctuations in female hormones prior to and during menstruation may elevate seizure frequency in some women.
In a small percentage of women, catamenial seizures may occur only during the days just before their periods; for others, during the period itself. Higher ratios of estrogen to progesterone may increase seizure frequency. Water retention, electrolyte imbalance, and even poor sleep are also contributing causes.
The connection between menstruation and seizures has been demonstrated in women with simple partial, complex partial, and generalized tonic-clonic seizures. However, different types of seizures may be associated with different phases of a woman’s menstrual cycle.
For example, a woman with absence seizures may have more seizures during days 16 to 28 of her average cycle, and may have the least during her period. A woman with partial seizures, on the other hand, tends to have fewer seizures during days 16 to 28 and more just prior to ovulation and during menstruation.
I think the beautiful Grace Helbig phrased it perfectly.
So what do you do? Tell your doctor first, and then go crazy. Eat whatever the fuck you want, sedate yourself if necessary, and just wing it. Let your family and friends know what’s happening, you may need extra help. If it is bad, you really should have someone around at all times. Don’t be afraid to ask for help, just stay clam when you do. It makes it easier for them to say yes.
Don’t do things like:
- Carry around fragile objects – put that phone in an impenetrable fortress and just pay for the damn insurance. Just do it.
- Carry around knives, scissors, glass etc.- You get my point, you don’t want to fall on that shit.
- Be alone with sharp/hot objects that could potentially kill/injure you if you (or someone else, just saying) fall on them.
- Take extra medication not approved by your doctor – this one speaks for itself.
- Drink excessively – you shouldn’t do this anyways, I know that bottle of wine looks awesome right now, but it can seriously take you to a whole new level of fucked up. The hangover aggravates everything.
Here are some suggestions:
- Find out which pain releivers you can take with your epilpesy medications – my combo is bendryl with tylenol and dramamine. It takes the cramps away, the benadryl calms me a bit and the dramamine helps with my nausea. ASK YOUR DOCOTOR FIRST. I AM NOT RESPONISBLE IF YOU ARE STUPID AND TAKE THIS IF YOU’RE NOT SUPPOSED TO.
- Ask your doctor if emergency AEDs can benefit you. This can work wonders, espeically if you have auras that warn you in time for a seizure.
- Talk/yell at your gynecologist. I yelled/cried at mine until he gave me what I needed. Endometriosis and How I Fixed It <- read that
- FEED THE MONSTER. My monster likes ribeyes and cheeseburgers followed by a plain glazed doughnut and washed down with an ice cold soda and vodka cranberry (just one though).
- Warn everyone around you in a timely manner.
So, does this happen to you? Or do you think it is? Let me know, share your stories in the comments. Also like this, subscribe and follow me on the social media @epileptea on all platforms for updates and more fun info!
I hope you’re all well
-Epileptea
Yes! I’ve had epilepsy all my life, but it wasn’t diagnosed until I started puberty and they got worse. Hmmmm…sound suspicious? I thought so too. It took years and years of telling neurologists, endocrinologists, gynecologists, any “gist” that would listen, and they all patted my hand and said “everything is worse at that time.” Until I finally started going through peri-menopause and having sporadic periods. Guess what? For the 6 mos that my periods stopped, so did nearly ALL of my seizures! Sadly, my periods have returned (darn that peri-menopause) and so have the seizures. Come on menopause! I’m not a doctor, so don’t take my advice, but know that you aren’t crazy. There is reason behind the madness.
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That sounds just awful! I am so sorry you are going through this. Hormones are a fickle brat, and we aren’t crazy! Thank you for sharing, Lisa.
I wish you well,
Epileptea
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[…] all in all, having this IUD is good for my epilepsy in the long run. Catamenial epilepsy is horrible, and I have noticed less and less seizures each […]
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