Not Sure Where I Belong...

[ScatteredDaisy]

I had a seizure, but I'm not sure it is epilepsy yet.

My story:

In the last few months, I have been experiencing symptoms that made me think I may be entering perimenopause. I am not yet 41, but my mother and sisters all went through it early. In fact, one of my sisters was fully menopausal at 38.

My symptoms:
Weight gain and then maintaining while dieting (1300 cals a day + workouts)
Cycle changes. I have always had a regular cycle of 28 days, with heavy periods lasting for 7 days. Yeah, fun, but was normal for me. Now, sometimes it is 26 days, sometimes 28, I skipped one, and my period lasts four days with only one moderately heavy day.
Hair loss. Luckily, I have very thick hair (never thought I would be grateful for that). I clog the shower drain with my hair and it has to be cleaned out once a week or we're wading.
Lower libido - I miss my libido. My husband does too.
Sudden mood swings. I go from laughter to tears in seconds, but only sometimes. It's embarrassing because I can't control the sudden sadness. It goes away fast, too.
And finally...
A strange sensation in the right side of my brain. It would last for a couple of seconds and be gone. I found that some perimenopausal women experience that, BUT...

Last week, I had a grand mal seizure and was taken to the ER. They did a CT scan, handed me a prescript for phenytoin, said "don't drive" and practically shoved me out the door. The only questions I was asked:

1. How much alcohol do you consume? one drink every once in a great while - 3 or 4 beers/margaritas in a year.
2. Do you think you can pee in this bed pan? Yep.
3. Do you have insurance? No.
4. Are you, or could you be pregnant? (before CT) No. I had a tubal ligation 19 years ago and I think I may be in perimenopause. Response: Honey, you're too young for that. My Response: It runs in my family . Their response: no acknowledgement at all.

Not ONE word about the side effects. Not ONE word about the long term effects. I personally think he didn't give a rat's behind because I did not have insurance.

In case you wonder why I did not assert myself, I was still reeling from the idea of having had a seizure and I was under the impression that medical professionals ALWAYS do their job.

Anyway, I started taking the medicine. Two days later, I experienced my first "aura". This was a week and a half ago. I've had several auras since. I never had them before taking this drug (?).

Only since starting phenytoin:

I can't concentrate. I am a student and my grades have always been important to me. I feel hopeless.

My legs feel achey, numb, and heavy.

My speech is slurred.

My short-term memory? I can recall a conversation I had with my mother three weeks ago, but forget what my husband said five minutes ago. *sigh*

I walk slow and funny. (No, not normal)

I have read up on the connection between seizures and hormones, and I truly believe I need hormone therapy rather than this messed up medicine.

From what I've learned, doctors don't prescribe phenytoin without diagnosing epilepsy, but all I had was ONE seizure and they put me on this drug.

I never felt less cared for than I did the day of my seizure. My husband was my only comfort - well, from what he tells me, the EMT's were pretty great, too...


I skipped a dose yesterday and felt almost normal for a few hours. (Honestly, I missed it. I am not used to taking meds)

Four hours after I took the next dose, I had an aura that lasted half an hour. (I think it was an aura. I haven't been able to describe it to a DOCTOR yet)

Here's what I'm doing:

Obviously not driving...

I used progesterone cream this morning (and will do twice a day from now on) and have purposely not taken my morning dose of feel bad. I still feel good. No aura. No seizures. I have energy and I can form sentences. YAY!

I am taking multivitamins.

I am eating high protein/low carbs.

I stopped drinking coffee.

I cut my smoking in half and would like to quit cold turkey, but think that under the circumstances, that might be crazy. The coffee has been hard enough for now.

I have made an appointment with a doctor who will accept payments, but that is a week away.

I have read that stopping phenytoin suddenly can cause status epilepticus, so I am not stopping completely, yet - but if I feel as bad after my first dose today as I did yesterday, I may skip two doses tomorrow. (I'm taking 100 mg extended twice a day now instead of three)

I know my body very well and I believe the seizure was brought on by estrogen dominance due to perimenopause. My last cycle had been 28 days. The day I seized was the day I would have ovulated.

I want to make it clear that I am not recommending that anybody else should try what I'm doing and I do welcome feedback!

[Ruth]

Welcome Daisy,

I am glad that you are thoroughly honest with what is going on, here.

Check with the pharmacist which medicine could be causing seizures.

Talk to the doctor who prescribed Dilantin about the side effects that you are having. Do not try to get off of any medicine without a doctor's help.

You will like this forum. It was started by Bernard out of love for his wife Stacy. That love has permeated throughout the whole forum.

There are people on the forum who do not believe in medicines. Talk to them. One person that comes to mind is Robin.

Again, welcome.

[Nakamova]

Hi Scattered Daisy, welcome to CWE!

I had the same reaction as you when I was put on Dilantin after my first grand mal. I was waaaaaay overmedicated, but I had no way of knowing that. I assumed that I felt lousy because of having had the seizure. Like you, I felt doped up and memory-impaired, and I lurched when I walked. Eventually it was determined that I was on 3 times as much Dilantin as I needed (at which point I began a slow taper down from 300mg to 100mg). I think when ERs pump you full of a loading dose of Dilantin, they just assume the "standard" dose is fine for everyone.

ER doctors do precribe Dilantin without an epilepsy diagnosis -- it's a safe approach to follow until the patient has been able to consult with a neurologist and schedule an EEG. At that point you can decide whether to stay on the med or not. It may feel like they treated you terribly and didn't listen, but they actually did what they were supposed to do, even if they were rude and insensitive while doing so. Your regular doc and neurologist are supposed to take it from there (never mind whether or not you have a regular doc). In my case, I did end up having an EEG showing classic epilepsy, and I opted to stay medicated on Dilantin (though at a lower dose).

I recommend that you try to take your Dilantin consistently as you taper. Stay at your current increment for at least a week or more before taking the next step. (It's possible to get Dilantin in 30mg increments -- this can make the steps down even gentler on the brain and body.) You may be fine stopping faster, but it would be terrible if you brought on a withdrawal seizure by doing so.

Perimenopause can definitely be a tricky time. For some folks it's when seizures lessen or go away entirely. This is because high estrogen levels can be a seizure trigger, and estrogen levels start to drop during perimenopause. On the other hand, in cases like yours, perimenopause can also see new-onset seizures. This is because progesterone levels are ALSO dropping, and progesterone helps balance out the estrogen in the body. If the levels are out of whack -- and estrogen dominates -- then vulnerable folks can have seizures.

I hope the progesterone cream does the trick for you. Although it makes a lot of sense as a treatment, it's not yet considered a mainstream choice for epilepsy -- another reason why your ER docs were dismissive. They probably just aren't up on the options.

Best,
Nakamova

[ScatteredDaisy]

Nakamova,

Thanks for the advice. I will take it. *sigh* I need to adjust my attitude, too. Just feeling incredibly TICKED that my life is going in a different direction than I planned and I know that must sound so whiney... For now, it is all I can think about. I am glad to get two weeks off from school as of Monday. Less pressure for a little while.

[ScatteredDaisy]

Welcome Daisy,

I am glad that you are thoroughly honest with what is going on, here.

Check with the pharmacist which medicine could be causing seizures.

Talk to the doctor who prescribed Dilantin about the side effects that you are having. Do not try to get off of any medicine without a doctor's help.

You will like this forum. It was started by Bernard out of love for his wife Stacy. That love has permeated throughout the whole forum.

There are people on the forum who do not believe in medicines. Talk to them. One person that comes to mind is Robin.

Again, welcome.

Thank you, Ruth. I have been exploring the forums and reading about Stacy. I see what you mean about love permeating the forum. I am astounded at how much I don't know and at how many people deal with epilepsy all the time. I suspect I may be in denial a little bit (or not - hopefully, lol). Just reading the posts and stories makes me slap myself (figuratively, of course). There is a lot of strength, here. It is encouraging!

[Ruth]

Yes, it is very encouraging, here. I am still learning. Have you gone to the Creative Writing Page, yet? It is in the Lounge section, in small letters it says Creative Writing Page. That is where the poems and stories come from.

That is one of my favorite places. Of course, there are many nooks and cranies to explore here.

[wcmike]

So sorry to hear about your experience. Sadly, a lot of people, even medical professionals, don't understand seizures. The easiest (and often, cheapest) thing to do is to prescribe a drug. If the drug stops the seizures, there's no need to look further for the root cause, right?

If you haven't already, look into the state laws on seizures and driving. I'm not sure about AZ, but many states mandate medical personnel to report losses of consciousness to the state DMV, which reacts by revoking or suspending the drivers license. If seizures are uncontrolled, then you're obviously not going to be driving, but if a cause is determined and treated, you may be able to get your driving privileges back sooner than if no cause can be found.

good on stopping coffee. caffeine lowers the seizure threshold. And yes, abruptly ending dilantin can cause seizures.

It sounds like you're experiencing some of Dilantin's known side effects: poor concentration, slurred speech, ataxia (difficulty maintaining balance, which your body seems to be attempting to compensate for by slowing your movements).

Your pre- and post-dilantin symptoms sound very similar to my own: weight gain, thinning hair, suppressed libido, mood (anxiety and depression in my case), mental confusion. I've been taking Dilantin for a very, very long time & lately some of the symptoms got much worse, particularly memory & concentration, being sleepy during the day, and waking up tired in the mornings. It's not all attributable to the dilantin, but some of it definitely is. Here is my tale...

I went on a low-carb diet a few months ago and immediately felt better - incredibly so. I mean, I've heard people say that after they started a diet they felt like they had more energy, but always thought that they were exaggerating. Within days, memory, concentration, and feeling sleepy during the day, all vanished. After a couple weeks of strict diet observance, I treated myself to a burger and fries for lunch ("I've been good, I deserve a reward!" thought I). Within an hour I regretted it. I felt rotten: tired, yawning, reading comprehension was zero, I was useless the rest of the day.

It turns out I had an undiagnosed case of type-2 diabetes, and dilantin may be contributing. One of dilantin's less-emphasized side effects is that it can suppress production of insulin, thus causing high blood sugar after carbs are consumed. This effect (and the underlying diabetes) were undetected by the usual blood tests (fasting plasma glucose and A1c), which were perfectly normal. It wasn't until I tested myself with a digital glucose meter that the truth was revealed: glucose levels over 200 after meals. Even then, both my neurologist and primary weren't convinced. Had to see a diabetes specialist, an endocrinologist, whose staff tried dissuading an appointment because the tests the primary had ordered - fasting glucose and A1c - came back normal. Now I'm contemplating transitioning from Dilantin to another med, to find out how much of the diabetes is due to the dilantin and how much is just me.

[Krista2882]

Hi,
I have "catamenial Epilepsy" which means my seizures are triggered by hormones. My first neurologist said this wasn't possible, my second neurologist didn't say much about it, but my GP said it's definitely a possibility seeing as the hormones in our bodies at certain times of the month can cause a slight swelling of the brain, which can trigger seizures in those who are already prone to them. Since then I have done more research on the internet and have found that this is a real thing and it actually has a name.
Also, Dilantin is the med I first started out on, and it wasn't getting absorbed into my blood so it wasn't doing anything for me. Now I'm on Tegretol, Keppra, and Lamictal.

[Ruth]

Hi Krista,

Glad to meet you. Welcome to the forum.

Catamenial Epilepsy is quite common. I probably had it when I was your age. I had more Tonic Clonic seizures during that time of the month. I was never diagnoses with it. I was diagnosed with epilepsy.

That time in my life was about 30 years ago. They probably did not know that the hormones were affecting or causing your seizures. If your neurologists are my age, 68, then they probably did not know about it.

Again welcome to the forum. You will get a lot of support here.