Finding out I had Epilepsy when I was Pregnant

[Over it]

Hi,

I'm new to the Forum and from Australia.


I was told at 28 years old and 21 weeks pregnant with my first child, that I had Epilepsy . I woke up in the morning having a seizure and then 5 hours later at the hospital I had my second and last seizure. I was told that Dilantin was the best meds to take as I was pregnant. I was on the meds for the duration of my pregnancy and my blood levels were all over the place( I was on 400 once a day). I had to stop as my gums were bleeding and hand pins and needles in both my hands and feet. Once I had my daughter, about 2 weeks after I got the stomach pains and felt like I was going through labor again. This happened on and off for short periods and always at the most time( in a public place like a shopping centre or on long road trips with no toliets for miles). After regular check ups and 18 months later I was told that I could begin to reduce the dilantin as the scans showed that everything was normal again, YEAH!!!
I don't take the med anymore and I still find that I get server stomach pain and the only thing that it relates back to is DILANTIN. I realised that when I'm stressed it’s worse and in saying that it can come from no where. Even after a few hours sleeping I'll awake to the most painful and over grown stomach that levels me in tears. I have had a stomach specialist look into it and he can't find anything. The invasive camera couldn’t find anything. I really don't want to live the rest of my life like this as it's unpredictable and has hold over my life. Has anyone had this experience or can they suggest any options as I'm so over it.

[skillefer]

Hello! Welcome to CWE. Feel free to ask questions, vent, or just chime in. Check out the epilepsy 101 thread...it's in my sig. As for the stomach aches, I can't quote this, but if I remember right, there's a kind of seizure that shows up that way. You'd have to ask Robinn, another member here. Her daughter gets really bad stomach aches too. Hope that helped.

[Meetz1064]

a type of REFLEX epilepsy if my memory serves me correctly.......sometimes the colon is involved, sometimes not. Keep track of what you are eating. It can be triggered by that, too. Was there any one specific thing that you ate each time that it happened???

[Over it]

I started to cut out foods from my diet and see if it made a difference. But nothing, I even had blood test done to see if I was wheat/dairy intolerent and I'm not.
I've never heard any thing about REFLEX epilepsy. thank you this gives me something to look into.

[brain]

and welcome aboard!

Glad to have another Aussie here!


Here's some info on REFLEX SEIZURES
from Epilepsy Ontario (Canada):

Reflex Seizures


A seizure is considered a reflex seizure when it occurs as a direct response to a particular stimulus or event.

These seizures are experienced by approximately 6% of people with epilepsy. They can be triggered by visual stimulation, a sudden "startle", or a variety of other factors alone or in combination.

If a patient only has seizures as a result of a certain stimulus then it is possible to control them by avoidance rather than through pharmalogical means.

Reflex Seizures can also include laughter, crying,
heat, water, startle, food, brushing teeth, stroke (touch),
and other types as well. There are postings and
threads in reference to Reflex Seizures in CWE.

[Over it]

Thank you so much.

[Bernard]

Hi Over It, welcome to the forum.

... I was told that Dilantin was the best meds to take as I was pregnant. I was on the meds for the duration of my pregnancy and my blood levels were all over the place( I was on 400 once a day). I had to stop as my gums were bleeding and hand pins and needles in both my hands and feet.

Sounds like you were definitely on a toxic dose. I'm surprised they had you take 400mg once a day (as opposed to spreading the dose out like 1/2 morning and 1/2 night).

... After regular check ups and 18 months later I was told that I could begin to reduce the dilantin as the scans showed that everything was normal again

Sounds like your seizure activity was likely hormonal or vitamin/mineral (magnesium?) related. Were you diagnosed with preeclampsia?

... Magnesium sulfate is standard therapy for pregnancy-induced hypertension (eclampsia and pre-eclampsia) to prevent seizures. 10 grand mal of magnesium are administered intramuscularly initially, followed by 5 grand mal intramuscularly every 4 hours. If administered intravenously, a 6 grand mal bolus over 15 minutes is given, followed by 1 to 3 grand mal per hour. In a comparative study, Dilantin™ was compared to magnesium in preventing seizures and reducing blood pressure. The investigators found no differences in the patient’s tolerance, adverse reactions or outcomes between the two groups. The authors then made the amazing conclusion that Dilantin “is a well tolerated alternative to magnesium sulfate for seizure prophylaxis in patients with mild pregnancy-induced hypertension.”(14)

14. Appleton, M. P. Magnesium Sulfate Versus Phenytoin for Seizure Prophylaxis of Pregnancy-Induced Hypertension. Am Jnl of Obst & Gyn, October 1991, 907-913

My wife's seizure activity got progressively worse with each successive pregnancy and there are many women who have experienced the same phenomenon.

Are you still experiencing seizure activity now that you are off the Dilantin?