has anyone had more siezures since they started taking medication?

[shan81]

It seems to me that I have more problems now than I did before I started taking medicine.. does anyone else have this issue? I know I have been posting on here alot but I have soo many questions.. I worry about everything.. like what is Sudden Unexplained Death in Epilepsy and how common is it??

[Belinda1961]

Shan81

There weren't any medications that completely controlled me ever.
It took 47 years for me to get control and it wasn't by a medication.

Belinda

[shan81]

how did you get more control??

[Nakamova]

Hi shan81,

Not everyone responds to medications the same way, and sometimes meds that are meant to prevent seizures, cause them instead. In addition, some medications are good for stopping some kinds of seizures but can trigger other kinds. Another factor to consider: If your seizures aren't completely controlled by meds, they can potentially progress in frequency (as your brain "gets in the habit" of seizing).

If your meds have made your seizures worse, definitely discuss it with your neurologist. You might want to look into complementary treatment approaches that could allow you to reduce your med dosages. (See http://www.coping-with-epilepsy.com/...ive-treatments). Check out this thread: Neurofeedback - Rebecca's Story In it, RobinN discusses alternate treatment approaches she used when meds made her daughter's seizures worse.

Sudden Unexplained Death in Epilepsy is the term used when someone with epilepsy dies suddenly with an unexplained cardiac or respiratory failure. It's not well understood -- hence the "Unexplained" part of it -- but it appears that having uncontrolled tonic-clonic seizures, especially during sleep, may be a factor. Other risk factors are: "having a learning disability, being a young adult male, not taking treatment as prescribed or having abrupt or frequent changes to medication."

Statistics are rough, but approximately 1 in 100 sufferers of severe epilepsy die of it every year. For people with mild idiopathic epilepsy (epilepsy of unknown cause), the figure is much less -- 1 in 1,000 per year. It's a rare occurrence, but very, very sadly we have lost some CWE members this way.

If you are worried about being at risk, talk to your neurologist. the prospect of Sudden Unexplained Death in Epilepsy is scary, but I hope you won't let your worries about it overwhelm you. You shouldn't live your life in fear of it.

[shan81]

Its just only a little less than 2 years since I was diagnosed with epilepsy and I just dont understand it all the way. At first, I was just having partial seizures and it seems like since I have been on the meds I have started having grand mal or tonic clonic seizures thats why I was wondering about the medicine and I am used to having aura's but last week I had a seizure with no warning at all and it scared my kids and when I came too my fiance was asking me questions and I remember knowing who they all were but I couldn't think of their names or anything it was definately different. so I guess this is all still just new and I dont understand it all the way :/

[Nakamova]

It's "normal" for your memory to be foggy right after a tonic-clonic -- the brain's still waking up.

But if your meds aren't doing their job, that's not good and you need to see your neurologist. Either your meds are causing the tonic-clonic seizures, or they haven't been doing enough to stop your seizures from progressing to that phase. Either way, you need to find a way to get seizure control.

Keep asking questions -- information is your ally, and can help to make coping easier.

[shan81]

how long have you went without seizures?? I was on Keppra and vimpat but I just started the vimpat due to a tonic clonic siezure she added it to what I was already taking but then I started breaking out in bruises everywhere so my dr stopped it and made me get blood work done that all apparently came back ok so I dont know what was the deal with the bruises but after I stopped it even though I was only on it for about 2 weeks I had a tonic clonic.. sometimes I really like my dr and sometimes I dont I just dont know.. see I had a concussion when I was a kid about 11 or 12 and after I gave birth to my son he was about 4 or 5 months old thats when I started having problems

[Nakamova]

Bruising is a serious side effect of Vimpat, which is why your doc had you stop using it.

Finding the right medication or combo of medications can take awhile -- unfortunately it's often just trial and error. Right now, what you're on isn't working, so you and your neurologist need to figure out something that will work. There are other meds to try -- Lamictal, Neurontin, Tegretol, etc.

I'm on Lamictal, and have been seizure-free for almost 4 years. My seizure came out of nowhere when I was 35, though I may have had a lower seizure threshold due to a head injury when I was 5.

Do you keep a seizure diary? That can sometimes help to see if there are patterns, or triggers that are contributing to the seizures.

[RobinN]

My daughter had many more seizures on medication. I didn't understand it at the time, because at the beginning we were told they would just continue if she did not take meds. So we tried four. Thankfully it was suggested that we keep a journal, and now I can definitely say she had more seizures, and different types with each med.

Since figuring out the cause, she is med free and seizure free.... at this time.

[shan81]

no I haven't started keeping a diary, and I also had a head injury when I was like 11 or 12 a bad concussion from being hit by a car and they are thinking that is what mine is from.. and the pharmacist at walgreens acted like he had never heard of bruising on vimpat and my dr acted like she was gonna put me back on it if my tests came back ok but I know that bruising was not normal.. and I also have been on topomax, tegretol, dilantin, and keppra and now vimpat so its just getting stressful.. it just helps having people I can talk to

[Nakamova]

This is from Vimpat's listing on drugs.com:

Vimpat side effects
Stop using Vimpat and call your doctor at once if you have a serious side effect such as:

double vision;
feeling like you might pass out;
fast or pounding heartbeats, fluttering in your chest;
feeling short of breath;
fever, skin rash, swollen glands, flu symptoms;
bruising, severe tingling, numbness, pain, muscle weakness;
nausea, upper stomach pain, itching, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes); or
lower back pain, cloudy or bloody urine, swelling, rapid weight gain, urinating less than usual.

[Nakamova]

Wow, I guess you've been on the med merry-go-round for a while! Maybe Lamictal will do the trick for you, or Neurontin.

[shan81]

Yes I have I think thats why I get so worried and stressed I just wish things would go back to normal It makes me soo upset I went my whole life without any of these problems and now all the sudden I have a 2 year old and ever since he has been born I have had a neverending headache with all of this.. I cant do anything cuz I cant drive and it is so hard to adjust

[Cint]

Shan,

I started having seizures when I was 22 years old, newly married, moved 1000 miles from my family and then had a family. My seizures started out as simple partial/complex partial and progressed to T/C out of the blue. So my two children grew up witnessing nearly every type of seizure there is. And I couldn't drive, either. Plus my husband at the time was a pilot, so finding a ride was very difficult. I, too had gone thru my childhood with no health issues and then...... BOOM.... as an adult I was hit with this!!!

I went thru test after test, trying to find out why I have epilepsy. I have been on 10 meds( I think ), including the ones you & Nakamova mentioned, except for Vimpat, had a temporal lobectomy, deep depression + diabetes, and had two VNS surgeries. For me the VNS was the best solution, although it is NOT a cure all, and there are side effects from it as well.

I used to worry about the possibility of Sudden Unexplained Death in Epilepsy, but realized the worry in itself was eating me up, so I had to focus on my children and how to care for them. Let them know how much I love them, despite my seizures. Also educate them on what to do/not to do if/when they witness a seizure. There were times when my children thought I was going to die because they saw me turn blue from the seizure, but I had to reassure them I was okay. I taught them when to/not to call 911. They now know much better than some paramedics how to handle my seizure situation. Fortunately tho, I haven't had a bad seizure since 2006, just a few complex partial's.

Hang in there and hopefully your neurologist will find the right treatment for you.

[Belinda1961]

Shan81

The way I got complete control was when I was diagnosed with A fib and had to get a pacemaker in June of 2010. My seizures finally quit after having I don't remember how many my A fib was causing my seizures.
I needed the pacemaker to keep from having a heart attack.
Belinda

[shan81]

Im not sure what A fib is?? and Cint, I get scared for my kids to see it too.. My daughter was scared the other day when she seen me have my last one..I dont want her to be scared.. I appreciate all your help and input, you guys are helping me more than you think.. I probably get overly worked up I just hope the same thing that they figure this all out.. Its really nice having someone to talk too

[Nakamova]

"A-fib" = atrial fibrillation. It's an irregular heartbeat.

[shan81]

is that something due to the epilepsy or just another thing along with your epilepsy??

[Belinda1961]

Shane A fib is irregular heart beat I found out I had that , when I was E/R after I had a seizure.It doesn't cause my epilepsy but heart problems run in my family.

My epilepsy was caused when I was delivered by forceps.
The a fib happened later. I've had 48 years I just went 4 months seizure free.

Belinda