Hello Im new here

smurfs21 · #1 12-22-2011, 10:17 PM

Hi all, not sure wher to start. I was diagnosed with epilepsy afte I ran my car off the road into a ditch. The people that stopped to help me said I was unresponsive and convulsing. I have seen a neurologist but am becoming frustrated, I started on topomax but have been changed to lamictal. I am up to 300mg a day and still cant get them under control. My doctor wont tell me what type of seizures I am having even though I ask every time I am there. I am having what I think may be side effects from the medicine which include blurred vision (but not all the time)a rash on my upper chest near my neck and shoulders, I have no appetite and am having massive panic attacks. Can anyone give me any advice on what to do? I have had the mri ct xrays eegs all done but I feel so lost and scared. I have three children and the 10 yr old had to call my father last week because I had a seizure while walking down my stairs and ended up in the er. I appreciate you listening to me I just dont know where to turn or what to do

momof3boys · #2 12-22-2011, 11:16 PM

Have you told your dr about the rash on your upper chest, near your neck and shoulder area? I ask this because I was on Lamictal, and had a severe allergic reaction to it. I had sore like areas on my chin and jaw area, and my glands in my neck got huge! I was on it for two weeks before my dr told me to quit it. I beleive I got up to 100mgs twice a day. I would be contacting your dr if you havnt already to let him know about the side effects you are experiencing. In the meantime, I wouldnt be driving or doing anything that could harm you til you can find a medication that can control your seizures. I know how frustrating it can be. Im a mom of three little boys, ages 7, 6 and 5 yrs. Im a stay at home mom, and my husband works full time. So Im the one that takes the kids to school in the morning, and our youngest is still home with me til august of next year when he starts kindergarten. If you have any questions, feel free to ask. Hang in there.

Krista2882 · #3 12-23-2011, 10:26 AM

Yeah, I've heard that a rash is a side effect of Lamictal and that you're usually taken off of it if you get the rash.
When I first started Lamictal, my scalp was SOOOOOOOOOOO itchy for about 3 weeks. I couldn't tell if it was an actual rash because it was only on my scalp where my hair covered it, and I didn't know about the rash side effect at that time so I didn't call my doctor to tell him that it was making my head so itchy. It went away on it's own, though. But I think, like Kristin said, a rash is usually an indication of an allergy to the med and that you should probably let your doctor know right away.

claudi · #4 12-24-2011, 11:18 AM

I have been warned by 3 neurologists to run to the er and stop lamictal right away if I even suspect a rash. I wonder if they were all paranoid now??

**Endless** · #5 12-24-2011, 04:13 PM

Hi, smurf!

Welcome!

I'm so sorry you are going through this. The time right before or after diagnosis is awful - very scary. There are so many unknowns.

If your doctor won't tell you what kind of seizures you are having then you need a new doctor. Do you see a neurologist? Or an epileptologist (seizure specialist)? You may want to go to a doctor at a regional epilepsy center. Sometimes they are much more knowlegable about seizures than other neurologists. They definitely have more resources and technology available to them. Look here for a center near you: http://naec-epilepsy.org/find.htm

It's important to see the right doctor to get the right diagnosis. What kind of seizure makes a HUGE difference. Different types of seizures respond to different drugs.

Here's a link to types of seizures. You may recognize yourself in some of the descriptions.
http://en.wikipedia.org/wiki/Seizure_types

Here're links to types of medication and what types of seizures they treat:
http://www.webmd.com/epilepsy/medica...treat-seizures

This uses the UK names for drugs but it's very well organized:
http://www.epilepsy.org.uk/info/trea...tic-drugs-list

It sounds like you are having generalized tonic-clonic seizures. Was the second seizure like the first one? You were convulsing? Lamictal is an all-purpose kind of drug so it should cover those. No worries on the dose of lamictal. It took 350 to get mine under control. Some people only need 100. Everybody is different. It also takes 3-5 days for the level of Lamictal to build up in your blood, so if it hasn't been that long be patient. Everybody IS different, and this may not be the drug for you.

Even if the right type of drug is used, sometimes the doctor needs to tinker around and try different things to find what works for YOU. Think of the neurologist as a chef, making the soup just right.

About the rash. Different doctors think differently on that topic. I had a rash on Lamictal. Since I had tried so many drugs before lamictal and we really needed to make this drug work, my neurologist sent me to a dermatologist to get checked out. It turned out it was a drug reaction rash, but not THE rash (stevens johnson syndrome). The dermatologist gave me oral and topical medication to treat it and watched me like a hawk. She said if we treated through the rash it had a good chance of disappearing in a couple of months. She was right. It went away and hasn't been back over the last year.

I might also mention that when I got the rash my neurologist dropped my dosage way back almost to the beginning and ramped it back up to full dose at 1/4 the usual speed. Low and slow. I think that helped. The key here is that an expert skin doctor made the call - not my pcp or my neurologist. And ALL my doctors kept an eye on me and educated me on what to watch for - basically any escallation of the rash.

Anybody here have a hard time getting in to see their doctor? I got instant access to my neurologist and even to a dermatologist where I wasn't a patient, like within a couple of hours when I said these two words together: LAMICTAL RASH Everybody really snaps to it when they hear that. l'd laugh about it but it isn't funny.

One last thought - it's important to work with your primary care doctor to eliminate all the other possible explanations for your events. There are many illnesses that mimic epileptic seizures, like heart problems, mini-strokes and clotting disorders, autoimmune disorders, endocrine disease, etc. Seizure medication wouldn't work for those, and you'd still be very sick with a problem that is possibly worse than epilepsy. Go get checked out, okay?

Sometimes it's a long journey, but everything will get straightened out. It does for most people. They aren't here in the forum - they are skipping down the lane enjoying a seizure-free, healthy life.