ScatteredDaisy
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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!
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!