When I was first diagnosed the doctor prescribed Dilantin and Phenobarbital. This was back in, oh, '64. Kennedy had been shot a few moths before. We had just dodged the bullet during the missile crisis and let out a collective sigh of relief. I think it's what brought on the epilepsy.

Anyway, all kidding aside, I don't know if there was much other than Dilantin and Phenobarbital back in those days. Other than a cold washcloth. Fortunately, I tolerated both medicines very well. I just hadn't been told how to take them properly. I would wait until I started feeling kind of, you know, antsy, before I took any pills.

Man, big mistake. I went like this for twenty years before a friend told me that I have to maintain a certain blood serum level of Dilantin for it to do any good. Since that time I've only had one seizure. And that was when I tried to slowly reduce the amount of medication I was taking. Never again.

If the world fell apart and we were reduced to some sort of post-apocalyptic Mad Max world I would end up breaking into pharmacies to take their supply of Dilantin. Who needs the morphine and Demerol? Just give me the phenytoin.

To anyone with epilepsy who's thinking about reducing their medication until they are off it I would say "Don't" Epilepsy won't just go away or cure itself. It's a condition you have to learn to live with. I'm just grateful there re medications which can help.

My 15 yr old son had two tonic clonic seizures in april on the same day and the doctor suggested that he should start on medication but told us that there can be a lot of side effects so Sean said he would rather wait and see what happens he went seven weeks and then had a smaller one in the night while asleep we are unsure about what to do now, does he start taking medication everyday for what could be the rest of his life or do we see how often and severe the fits are
Paula

Marie,
I love your attitude, and Yes! you are absolutely right, you cannot go off of your meds, I am the proof positive, I tried cutting my Phenobarb dose and had my first grand mal in six years. Why did they take you off the Phenobarb?, my general doc wants me to see a neuro and try something new...I'm tired of being tired, you know? I'm also scared to try anything new when I read some of these posts...I'm REALLY allergic to Dilantin AND Tegretol. I'm afraid the side effects of some other drug would be worse or, I'd get another awful rash.

Riggers,
Did they do a workup on your son? I was 19 when I had my first grand mal and went five months before I had another, this one was witnessed. All my tests were negative, but I can say without a doubt that if I am NOT on medication I will have a seizure sooner or later. I have lived a full life, college, married, kids, full time job. I have never lost my license, as I have a very distinctive LONG aura. Uncontrolled seizures are not good, and I believe can lead to more seizures.

I'm with Teresa, I love your attitude Mainecoon.

It's people like yourselves that are getting us though this, giving us courage to face the next day, and the next and the one after that!

It's funny that you mentioned a Mad Max world; I had dreams for the longest time that the government stopped production of anticonvulsants to make Small Pox and Anthrax vaccines. Strange I know...

Because of this stupid dream, I've researched old world treatments of seizure control. There are several plants and herbs that fit this category. Not that I ever plan to have to use them, but some are now a part of my garden, for Jake's safety I've placed them on the far side of our creek (it'll be a few years before he's able to cross it)!

Thanks - you make me smile http://www.healthboards.com/ubb/wink.gif

Lisa and Jake

Yes, Lizzb, your seizures CAN get worse if you go off meds, especialy if you go off too fast. It does not always get worse, though. Some folks off meds do go from partials to secondary generalizations and even status events. Best not to mess with the meds unless the doctor orders a change...

Yes Lizz,

Talk to your doc. and don't just jump off of those. My seizures got worse so I am walking proof that they do get worse if you don't treat them. I went from SPS to CPS and the longer I was without meds the longer the seizures would get. They started out as about 30 sec and now they are up to 5 min. each one. Please don't do that to yourself. We are here to help.

OH, someone please answer if you know...how long do ACD's take to work fully?? I have been on mine for 2 weeks now and I am still having seizures. I think the time is about 6 weeks??!! Am I wrong??

Thanks all! Sorry I have been scarce(sp?) but I have a new job!!!! YAY! I'll explain more later. Gotta go and get ready!

God Bless,

KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Mr. Robin Salmansohn

Hi,

Where did you get your information on the soy products turning to MSG in the system.

Please let me know as we have replaced most of my sons dairy intake with soy based products and would like to research the MSG side. I have removed the MSG intake in other areas as well.

Thanks for your help.

Lisa
Jake 12/31/01

Me, too. I've never heard of the soy protein - MSG -seizure nexus. My two stepdaughters are aggressive in advocating the use of soy products, and I've gotten into the habit of eating soy-based food bars for breakfast and lunch. They haven't caused me any problems, but my epilepsy has been fully controlled for decades.

Oh, as regards seizures getting worse. When I was single I took my Dilantin on a really irregular basis. As a consequence I would have grand mals every so often. After I got married my wife saw me have a seizure and urged me to start taking the medication more regularly. She told me that epilepsy is often due to a lesion on the brain which seizures may aggravate. Now, whether this is true or not it did get me to start taking my medicine the way I should have been.

Another food ingredient that makes a difference for some is "GLUTEN." (Found in wheat, oats, barley/malt, rye). Some on another messageboard have talked about "CASEIN" making a difference (found in all dairy products and most margarines).

Sandy