Questions for Dilantin users

[crlarne]

I don't know how you keep up with all of those meds. I did read they did not change the 30mg dilantin. with that calcium and vitiam D you need 1/2 of the amount of calcium of magnesiam. I have all kinds of heath care books, and they said magnesiam is a carrier of calcium.

[stringbean]

I was put on dilatin when I had a second grand mal seizure about 20+ years ago. I was on it for about 8 years I'm not positive.

I was taken off it 10 years ago after my youngest daughter was born, they figured out that I was having p and complex partial's not panic attacks, but didn't change my meds until after I had her.

I have the dental problems from it and short term memory (I do believe this comes with at least some of the other E meds), and after taking it I also felt that I had lost a good bit of my intellegence.

My oldest brother, however, has been on it for about 35 years and so far doesnt seem to have any problems from it other than some mild dental problems.

[flameon1]

I was diagnosed with epilepsy in about 1975. My first seizure was while I was driving a car. 300-400 mg a day. I have terrible headaches. Many times I wake up to a headache. My family avoids me first thing each morning until I tune in to the day. Since birth, the entire left side of my body aches, feeling like you have just struck your "funny bone." I have never had relief for the pain and sometimes the pain can be a little more than I can take.

[gigi]

I thought I would research the threads on Dilantin here, since I have been on it for about thirty years now. I am so glad to have this site to refer to! It explains so much to me. (that doctors do not) I have been fairly lucky with side effects, long term and immediate. My gums are in good shape, and my bones. I did have the EBV, and my white blood cell count has showed up out of normal range. That explains the connection with Dilantin and immune system. The weird part is, I rarely get sick! I am 52, have noticed my knees ache sometimes. I also am hypothyroid. Biggest side effect would have to be my brain. The memory concentration thing just drives me off my rocker. Hubby and kids trying to jump in and finish my sentence while I try to collect my thoughts. They are all quick to respond and react to conversations at warp speed compared to me. Sometimes I over-react and get like an angry toddler, then they shut up and let Mom talk!

[Birdbomb]

I am now back on Dilantin. I had my second tonic clonic in Wal-Mart this past Saturday and it was pretty good. chomped through both sides of my tongue and realized by the time I got to the ER, I had lost control of my bladder.

I'm on 100 mg 3 x's a day and it makes me so sleepy and dopey!

I was seizure free for almost 5 years to the day.

[C0urt]

howdy, and nice to have someone new

I was diagnosed as being horriblly allergic to dilantin. each time I have been given it by people in e.r. i usually spend a week or so in the hospital.

plus the side effects for me are pretty heinous memmory loss gum loss the whole nine.
did wake up in a waking gown walking down the street talking to myself

[gigi]

Birdbomb:

So so sorry about your T/C in Wal-Mart. What a disappointment to be seizure free for 5 years. Wipe the slate clean and regroup. I know the tongue is so painful afterwards. Keep the liquids coming, and hopefully the medical community gave you an antiseptic rinse for it.
Take it easy, and here's to a better tomorrow.

gigi

[RanMan]

Gigi,

I've been on dilantin for 30 years, my long term effects are EXACTLY the same as yours.

Birdie,

I'm on the same amount of dilantin as you, I don't know what it is about Wal Mart but I've been seizure free for years but every time (weekly) I go into Wal Mart, My head feels light and I start to feel funny.

Randy

[gigi]

Hi Randy -

You too, huh!? So nice to know others have my same symptoms all from the same poison! Ugh. Before I could surf the net, doctors would give me a lab result, a diagnosis, but rarely an explanation. I feel so much more in control nowadays. I take liquid Dilantin, 12 ML a day. Gets into the system quicker. Seizure free goin on 7 years.


gigi