I'm scared

[CharlesB]

Hi.

I'll be 40 soon. 13 years ago, I was playing tennis, and I passed out and hit the back of my head and had a seizure.

I took dilantin for 1 year, but was so drugged up that I couldn't think. I weaned myself off, and then developed nocturnal seizures.

Now I am having seizures while I'm awake.

Before, I had a rude neurologist. I tried acupuncture and it helped.

Now, I don't have any money and I'm planning on going to a neurologist, which my brother will pay the $225 fee.

But I've seen something about the new dilantin having aspartame in it, and folks getting sick.

Does the 30 mg pill have aspartame in it? But I've read that the 30 mg pills have double the amount of sugar.

I can't afford the expensive pills like lamictal or something, as I don't have insurance.

If I can find a doctor that is not a bully, and figure out about dilantin or some of these new drugs...I don't know...I could deal with nocturnal seizures but now while I'm awake, I'm scared.

[Nakamova]

Hi CharlesB,

Here's the ingredient list for Dilantin 30mg capsules:

Each capsule contains extended phenytoin sodium 30 mg. Nonmedicinal ingredients: lactose, magnesium stearate, sugar, and talc; capsule shell: D&C Yellow No. 10, FD&C Red No. 3, gelatin, and titanium dioxide.

So yes there's sugar, but aspartame does not appear to be an ingredient. Sugar is not particularly harmful unless you have a known sensitivity to it. Aspartame, on the other hand, is chemically similar to aspartic acid, a neurotransmitter responsible for exciting the brain, so people with epilepsy should try and avoid it.

By the way, there are drug assistance programs to help when you can't afford medications. Resources are listed here: When You Can't Afford Medication

It's sounds like you've had some bad neurologists in the past. I hope this new one will help.

Best,
Nakamova

[KelVarQ]

I would recommend checking out the link that Nakamova sent since from what I understand about Dilantin the long term side effects can be pretty bad and I know my neurologist will no longer even prescribe it. In the meantime, I remember when my seizures went from nocturnal to daytime and yes it can be scary, but fear is not going to stop them and perhaps the stress of fearing them may encourage them. I had the surgery and although I was seizure free for 4 years I'm back having nocturnal seizures, but no daytime ones (knocking on wood) and today I've taken Gluten out of my diet and have been having much success. Although I'm not 100% seizure free (nocturnal only) definitely much, much better and I would say at least 95% and perhaps if I took my vitamins consistently I would be 100%. Yes, silly I know...but nonetheless the truth and now that I just reminded myself I will go take them. GOOD LUCK!

[Ruth]

Hi Charles, you are in the right forum to get answers.

It is not a good idea to take yourself off of medicines. That will bring on seizures. You need to talk to a neurologist about the side effects of your medicine that you are having.

I am 68 years old, I have had epilepsy for 62 years now. I have gone through many challenges with my seizures. I understand what you are going through.

Follow that link that you were given. It will help you tremdously.

I have kept a positive attitude going through my many challenges with epilepsy. Keeping a positive attidue will lessen your stress. It does mine and I have fewer seizure because of it.

Glad to have you here.

[msuder0583]

Charles just an FYI i get both my Lamictal and Topamax through Patient Assistance. Lamictal can be obtained through www.bridgestoaccess.com and glaxo-smith klein will pay for your meds if you contact johnson and johnson they would pay for topamax

[dzivko]

Explain your financial situation to your doctor and he/she will choose a drug based partially on that information. Do not try to go without your meds. My nephew did that and ended up with additional seizures...I'm being a mom here...I'm 62 and wasn't diagnosed with epilepsy until I was 51...went through my life thinking I was crazy, couldn't sleep, over tired, crying all the time, wondering where I was going, forgetting where I lived...it was awful...so as hard as it is, be glad that you have a diagnosis even if it's not one you like...and find a compassionate doctor who will help you find a drug that works and is affordable. Also, some drug companies will help you pay for your drugs if necessary...you may want to look into that

[valeriedl]

You deffently need to find a neurologist you're comfortable with. I would see my neurologist's pyshician's asst every other visit. She wouldn't listen to what I had to say. She told me what was going on with me with out even asking questions. She even told me that I wasn't taking my meds and that's why I was having seizures. The woman was the rudest person in the world, not a real people person.

I told my neurologist I was not going to see her any more and I haven't. I see him now every visit.

Don't take yourself off the meds all by yourself, that's not good. Most meds you have to wean yourself off of and the dr is the one who tells you how to do it.

[Endless]

Do check out the links for financial help with meds. The programs are very good, and could keep you on the medication that is right for you.

I agree with everybody - don't just go off your meds cold turkey. Not a good idea. In fact a really bad one. It could make your seizures much worse. Not just for that moment, but for the rest of your life.

Have you already gone off all your meds? If not and you are thinking of going off completely..... I'm not a doctor, so don't take this as actual advice or anything. Just sharing my experience. My docs know I'm super sensitive to drugs. i've been on Keppra, Trileptal, Topamax, Gabapentin (twice) and Lamictal (twice). With all but Lamictal & Trileptal they had me halve my dose every week until I was down to a certain dose, then off it altogether. Lamictal and topamax were special circumstances, so I'll leave out my experience with those. Lamictal you have to go a LOT slower with much smaller decreases.

That said, try to find a way to stay on your meds. Your city's free clinic may have a neurologist on staff, or a primary care doc who is willing to consult with a neurologist. The drug companies have free medication programs. There's got to be a way.