Feeling overwhelmed

[kd2020]

Hi,
I am new to the forum. I am the mother of an 18 year old who has had 6 seizures in the last 7 months. It seems that he can not go more than a month and a half without having a seizure. His senior year of high school has been a mess. Everytime he has a seizure his doctor ups his medication. He is now on 3,000 mg of Keppra XR per day. 1500 in AM and 1500 in PM. His MRI and EEG have all been normal. He is stressed and anxious and feels that there is no way he will be able to go away to college. How long does it take for seizures to be completely ccontrolled?

 

[Krista2882]

Hi and welcome.
There's no set time that it should take for seizures to be controlled. His doctor will probably add another medications if the Keppra continues not to work. 3000mg/day is the max, I think. I was on that dosage for a while, but now I'm on 2500 mg/day plus Tegretol and Lamictal.
Personally for me it took about 8 years of adjusting meds before my seizures were mostly under control. But my doctor told me that it was a difficult case, and it doesn't take that long for most people. But there definitely will be a bit of time before they know what med, what dosage, and/or what combo of meds will work best for him.

 

[Nakamova]

Hi kd2020, welcome to CWE!

Unfortunately, it can take a bit of tinkering with meds to find the right one and right dosage for optimum seizure control/minimum side effects. It could be that Keppra isn't the right med for your son. (While he's on the Keppra though, you might ask about him having try a B6 vitamin supplement -- it can help with the anxiety and moodiness that Keppra causes). Ask his neurologist about other med options.

There are things your son can do in the meantime that might help. #1 is taking the meds consistently (I assume he is doing this, but it doesn't hurt to emphasize it). #2 is keeping a seizure diary -- this can help identify if there are triggers that may be contributing to his seizures. Triggers can be physical, physiological, emotional, and environmental. Fatigue is the most common, but other ones include dietary triggers (alcohol, caffeine, aspartame, msg), food sensitivities (gluten, dairy, etc.), metabolic imbalances (low blood sugar, dehydration, vitamin deficiencies), physical stress (infection, injury), and sensory stimuli (fluorescent lights, strobes, computer monitors). It's probably hard to get a teen to track (and moderate!) his behavior, but it can be worthwhile if he is able to identify and avoid anything that may be lowering his seizure threshold.

Another approach to consider is neurofeedback -- this involves re-training the brain to suppress "bad" brainwaves and enhance "good" ones using a video game-like EEG set-up. The pros are that there are no side effects, and the benefits are lasting after the training ends. The cons are that the training takes 20 to 40 sessions, it's rarely covered by insurance, and it can be tough to find an experienced practitioner.

Best,
Nakamova

 

[Cint]

3000mg/day is the max, I think. I was on that dosage for a while, but now I'm on 2500 mg/day plus Tegretol and Lamictal.
Personally for me it took about 8 years of adjusting meds before my seizures were mostly under control. But my doctor told me that it was a difficult case, and it doesn't take that long for most people. But there definitely will be a bit of time before they know what med, what dosage, and/or what combo of meds will work best for him.

I had an unsuccessful temporal lobectomy 20 years ago, have the VNS and still take 3000 mgs.Keppra along with a small dosage of Topomax. I started having seizures when I was 22 years old and have tried numerous drugs, including Tegretol and Lamictal. I still have seizures once in a while. My doctors told me also that my refractory epilepsy is a very difficult case.

Anyway, here is a website for teens:
http://www.epilepsy.com/info/TEENS

 

[VinnyBaby]

Sleep problems

Recently, I change pillow to buckwheat pillow, and it really help me. My brain like cool down when I wake up in the morning

 

[Krista2882]

Recently, I change pillow to buckwheat pillow, and it really help me. My brain like cool down when I wake up in the morning

Does this really help with seizures? A Korean lady gave me this traditional Korean pillow that's supposed to cool down your brain when you sleep. I've never actually slept on it because it's too hard. lol. She didn't say what was in it, but I think it's the same thing you're talkjng about.

 

[MuayThaiFighter]

I seem to get the same answer about seizures. "They come and go and are still a mystery." As it was stated before I would see if other medications might work. On a positive note, a family friend who is in her 60's had convulsions at a similar age and they went away. They never came back and she was never on medication. Im sorry for what he is going through and wish all the best for you both. God bless and I hope your son knows he is not alone.

 

[VinnyBaby]

I guess it Chinese. It a traditional kind of pillow they used to cool down the head.

 

[Chaz1]

Dear KD2020, Nakamova has given great advice, start with a seizure today if you can and check the diet and start ruling out the culprits that could be impacting his seizures.
My son also has no signs of Epilepsy on his EEG. His seizures progressed from simple partial to grand mals at the start of his 2nd year in college. Medication kept the seizures under control for year and ½, his grand mals were nocturnal and then daytime breakthroughs started, he thinks due to emotional stress and I would have to agree with him. He is on Depakine 2 x 500; doctor wants to increase the dosage due to recent seizures, my Sons response (its taken 2 years before he would utter the word epilepsy, was in denial) was no, he wants to see if he can get his emotional health under control before considering any increase of meds and we back his decision. My once happy go lucky son said meds made him depressed and some. We added Omega 3 (best quality), Vitamin E and D (all supplements need to be of purest form) all of which he feels has helped him in some way (only he can feel what is going on in his head). Vitamin D brought colour back to his skin and he is looking less tired, no big black eyes and sleeping better. He is also doing Neuro therapy and talk therapy, which he says is helping him put things into perspective and he is learning inner peace that he had never known. It may be worth getting a full blood test done for your son, to check his mineral and vitamin deficiencies. Glucose levels and thyroid check, rule out if there is a metabolic issues, or dietary deficiencies.
Though it will take my son an extra year to get his college degree, he is doing it and so can your son too. He just got an 8.3 grade on a huge school project. Stay hopeful, for his future is bright, with or without Epilepsy. There are many options/ alternatives to explore. I will be checking out the pillows now too...

 

[kiralu]

Oh what a relief that I found this site this morning. I am new to this so I guess the new forum is where I start. Although, there are so many areas I could jump into. First, I want to reply to Chaz1. Of course your son son will get through college just fine. I did. I studied harder than everyone else, but I graduated with a 3.5. He can do it for sure. It was difficult for certain, and I slept for two months afterward, but it's doable. I have always lived alone and been very independent despite living with epilepsy. I have never been afraid, going on visible onset of over 20 years now. However, I was just release from the hospital last week, and I have never been so emotional and somewhat fearful than in the past. People tell me I was laughing and talking with them when I was in the hospital on a monitored unit, I don't remember their visits. I'm home now on a med titration from Topiramate to Zonisamide. Any experience or success stories with this Zonisamide?

 

[RobinN]

My daughter began having seizures at the age of 14. You can read her story (from my point of view) below in my signature. A quick summary... the meds that we tried made her seizures worse. No doubt about it. 6 tonic clonics a month on average. I kept a journal (calendar) and I was able to prove to her doctors of this fact. We made nutritional changes and did neurofeedback and she has been seizure free for a year. She is also med free. Of course this might not work for everyone, but it is the first line of defense I believe all people with medical issues should begin with.

If your son was seizure free for 18 yrs and had no head trauma or illness that can be attributed to his disorder, then IN MY OPINION it is necessary to heal the gut, and begin to see if there are positive neurological changes from doing so.

 

[kd2020]

Thank you to all

Thank you for all the advice. I will be checking out that pillow. My son has had all blood work done and all levels are normal. He does take a B complex and said it does help with mood. He is also starting counseling to help with emotional issues. This weekend he had a 72 hour eeg, so far he hasn't felt need to push the button. Again, thank you I am glad I found this forum.

 

[Nakamova]

I'm home now on a med titration from Topiramate to Zonisamide. Any experience or success stories with this Zonisamide?

kiralu --

I was on Zonisamide, but it was not a happy choice for me. It's sometimes called the "Supermodel Drug" -- because it makes you skinny and dumb (no offense to any supermodels out there). I had cognitive issues with it. It also suppressed my appetite and caused stomach pain/acid. Because I couldn't eat easily, I started having symptoms related to low blood sugar, and because low blood sugar is a seizure trigger, I eventually had a seizure on it. Since I was on it, the FDA has come out with a warning about Zonisamide and "metabolic acidosis" -- make sure you've checked with your docs about this: http://www.fda.gov/Drugs/DrugSafety...mationforHeathcareProfessionals/ucm095251.htm

 

[kiralu]

Nakamova, Thank you so much for your reply. I will definely address these issues with my Neurologist. I have an appointment in a couple of weeks.