Please Help Me
I have been taking Lamictal for ADHD/Bipolar (also an antiepileptic drug) for about the past 3 years, about 9 months ago, my psychiatrist cut down from 150 mg twice a day to 75 mg twice a day, and then about 3 months ago cut down from 75 mg twice a day to 50 mg twice a day. We believe that I had a pre-existing epilepsy condition, but that the Lamictal had just been masking it all along, because I was on a high enough dose. About a 2 months ago I was at my girlfriend's house when my left arm and leg started to tighten up, and shake uncontrollably. I went to the acute care center where my blood pressure was about 150/100 and my arm and legs were so numb I could not walk or move. I was rushed to the hospital via ambulance. I was then given an IV with Ativan and Morphine for the pain in my arm and leg. The seizure lasted 7 hours! While there I had a CT, MRI, and an EEG. After seeing the EEG, the neurolgist was convinced I had Epilepsy. There was seizural discharges on the right side of my brain, explaining why only the left side shook. I was released, and we began an increase on the Lamictal to 100 mg twice a day. Since then I have had seizures which have been as short as 5 minutes to as long as 7 hours! I was prescribed Ativan to take when having a seizure, in hopes to slow the seizure, and calm it down and stop. I went to the neurolgist today(a different one), and he ordered an ambulatory EEG.
I just need someone to tell me that things will be all good and that can say they know how I feel because they deal with it daily also. I just need a helping hand to get me through this...
Last edited by Cubsfan93; 04-17-2009 at 05:37 PM.
Hi there, glad you joined us, and sorry to hear of what you are going through, but my situation is pretty much exactly the same.
At age 21 I was diagnosed with Bipolar and put on lamictal. Last year also in may I came off it, and started with the strange experiences again.
These strange experiences mis-diagnosed as psychosis, had actually been partial seizures...
My EEG/tests showed abnormality on my left side (left temporal lobe)
I started back on lamictal, which has controlled the partial seizures.. however... like yourself.... almost 3 weeks ago was rushed to the ER because my right side was jerking and would not stop.
All in all, because they wanted to run a load of tests, and all sorts of stuff, I had been in the seizure hours.. i dont even want to say because Im extremly angry.
I was given ativan by IV and it stopped it thankfully
However the past 2.5 weeks since this episode, I have had the auras everyday, .. prickling/tingling sensations all over my body and a few jerks each day. Since alot of the time they dont stop after 5 minutes, I take valium (diazepam) which does stop it...
the problem is, I cannot keep doing this or it will loose its effect, I am seeing the neurologist again tomorrow morning.
I am sorry to hear what you are going through, but you are certainly not alone, and look how close our stories match.
If you want to talk more Id be more than happy to. You have to think posative, and I am trying to do that too.. that eventually a med combination will work and keep you/myself stable.
My myoclonic episode that landed me in the ER was the first i ever had, and happened after playing video games(they had never bothered m before) Now the sensitivity has been getting worse.. to the point I can only be on the computer a very short amount of time, and cannot be around certain lighting.
WELCOME to CWE
Here is my take on the situation. I am not a doctor, but I am a mother that has a daughter with Epilepsy and a son with Aspergers. I have been researching these two disorders for over three years (probably closer to seven). ADHD falls in the Autistic Spectrum.
There is a lot of anecdotal evidence (research done by moms and dads and those with the disorders, and many doctors) that ADHD, Autism, Bipolar and some forms of Epilepsy are caused by a combination of intestinal illness, toxins in the system, food sensitivity. I won't say all are, but a good number are being healed when they focus along this path.
My daughter was put on medication at 14 after her first two seizures. I knew in my heart that it had something to do with diet and hormones. However, doctors steered me away from that type of thinking. Yet over the next two years, her life spiraled out of control. I know without a doubt that this was due to the medication and the medication only. I decided to wean her of all medication and face this dragon via nutrition, vitamin and mineral supplements, and neurofeedback (this helps the brain stabilize itself). Meds are a quick fix, however for many they just can't fix the problem. They only mask the symptoms. Kind of like a bandaid. You don't see the wound anymore, but eventually the bandaid falls off and you have to put another one on. Unless you can find the cause this will continue to happen with the drugs. Our method is not a quick fix however my daughter's spirit is back and we are on the road to health. This will never be the first approach a doctor will take, as they are trained to stop the seizures. They are not taught to heal with natural methods. I am finding some doctors are moving in this direction, but they are not always easy to find.
I personally went on my quest to find out what was causing my daughter to crash. Usually at similar times of the day. Many other have this happen at night, but hers happens from about 9 am to 1 pm after a morning of exercise. I asked for a special blood test a year ago and was denied. I was told it wouldn't tell me anything. I persisted and she crashed again and the EMTs said her blood sugar was down low enough where some go into coma. Hypoglycemia can cause seizures. No one bothered to tell me this, nor did they think the tests would help. Finally did have these tests and whammo, her blood sugar dropped again. I have my answer. Keeping a journal of everything has been my evidence.
She use to have the leg shaking that you mention, when she was coming off of a medication. She had very odd seizures over the course of two years. It took a long time to get the meds out of her system. When your brain gets accustomed to a med, and you take it away, it is bound to react. Especially when you don't create an environment to raise your seizure threshold. We all have a threshold. It just so happens that yours and my daughters are low. We have to do all we can to raise it. Good nutrition, good sleep, lack of stressful situations, additional vitamins and minerals etc.
We all know how you feel, but truly it is such an individualized disorder that we aren't even all in agreement as to how it should be treated. I have reduced my daughters seizures from 6 a month to less than one every two months. I keep hoping this gap gets larger and longer. You too can be proactive with this. There are things you can do to improve your situation. If you weren't born with this, or didn't have a concussion, or injury, there is a lot of evidence that you can turn this around.
Epilepsy: A New Approach is a great book to begin with.
We are here to support you in your effort to become seizure free.
Neurofeedback - Rebecca's Story
Feedback Matters- blog
Knowledge is power and knowledge shared is power multiplied.
-- Bob Noyce
Hi Cubby! Welcome to CWE. This is a really friendly group. So feel free to ask questions, chime in, or just vent when needed. I remember being a teen and having epilepsy....the wishing I could crawl under a rock when I had seizures at school....the mean things that kids sometimes said....I'm glad I'm not a teen anymore. The best thing that you can do right now, is to learn how to take care of yourself....there's some lifestyle changes that you can make that might help cut down on the number of seizures your having. Here they are:
1. Eat 6 small ( as in fit on a dessert/salad plate) healthy meals a day (make sure that there's a protein everytime you have a carb.....this means cutting out lots of junk food.)
2. Quit caffeine. (No energy drinks, coffee, tea, mate, sodas, etc....at all.)
3. Get at least 7 hours of sleep every night. (No ifs, ands, or buts)
4. Develop healthy ways to deal with stress....like exercise, yoga, painting, crafts, writing, etc....
Lack of sleep, too much caffeine, poor diet, low blood sugar, all of these can trigger seizures. I hope this helped. And remember, you aren't alone. And e is not the end of the world. Lots of us here have advanced degrees, loving spouses and families, and good careers. Don't let e define you. Still dare to dream, and pursue your dreams.
Hey Mark! I can't offer any good medical advice really...I myself just got diagnosed about 3 months ago. I have no clue whats going on with me-but these guys in here can sure help you figure it out! I just turned 20 and can definately relate to having friends just "not getting it". They think they do...but they just don't.
Please talk to me all you want, i don't feel like I can talk about epilepsy to people either...I feel stupid trying to explain it to my friends who i do talk to...they just go "ooooo..." and I have to convince them that i can leave the house *grumbles*
And you'll be fine even when you think you won't be
Mark- I think you will find a lot of support and guidance here from people that know what you are going through. i was diagnosed with E around the 4th grade That was quite some time a ago, I am now 40 and have a great career an a great family. I wont sugar coat anything, it wasn't easy but I have been able to get my seizures down to a level that I can live a normal life, drive a car and have some fun. I had Grand Mals, Petite mals and a lot of myoclonic seizures (muscle jerks). The best advice I can give you echos what Robin said, which is be diligent in taking care of your body, eat wright, get some sleep, keep a routine, stay away from substance abuse and moderate (when you are someday of legal age) you alcohol intake. If you do this and have balance in your life I think you will find it a big help! I know it worked great for me.
I can tell you that over the years I have had times (like now) when the E seems to come to the surface and give me fits, its usually associated with high stress levels, lack of sleep and breaking my routine.
Hang in there, we're all here to help!
You've come to the right place. You will find so much support and advice here. I was at me wits end when I found these people. It's not the general populations fault they're unaware. The media just hasn't picked up on this much. It's getting better though. Newsweek recently did a cover story about it. There's a post with a link here somewhere.
As for your friends just be open and honest. I find if I keep my life an open book people try to be understanding, The more we hide the more people misunderstand. My 16 year old son has a type of brain tumor in his optic nerve. We used the same advice when he was diagnosed and found his school and friends to be very supportive.
I saw a news report last year where a Dr. was giving kids with ADD and ADHD EEGs and finding that they really had epilepsy all along. He changed their medication from AAD meds to seizure meds and they had a vast improvement.
Medication isn't always the answer. Mine is not working but if I take care of my self it helps immensely. skillefer's advice on diet and lifestyle changes is probably the most important and hardest thing to do. Especially for a teen. My son changed his diet upon diagnoses and when from being legally blind (80/400) to (40/40) vision in just 4 months. His Dr.s call him a miracle. But the real miracle is how the body heals itself if you help it. I'm sure prayer helped too. RobinN will have tons of help for you also.
Come here whenever you need your spirits lifted.
God Bless and Take Care
Welcome, you have found a great place for advice, information and support. I started having seizures (petite mals, both simple and complex partials) last year at age 47. Most of my information has come from this forum. I take Keppra and it is doing a good job controlling my seizures.
Seizures vary so much from person to person...and just when you think you have it figured out for yourself..wham, it changes.
Start keeping a journal so you can find out what your particular triggers are so you know what to avoid. I have a problem if I don't get enough sleep, hav to much stress. I am also photosensitive and have problems with certain lights (and even going to the movies). It will also help your neurologist to know what is going on.
It is so hard to understand E, no wonder it is confusing to explain to others that do not have seizures. I still have only told close friends and family members.
We are always here for you....you don't have to take this journey alone
Hi Mark and welcome* You have really found a great place for information and for support. I am the Mom of 2 genetic E kids. Both were fine till 15, when juvenile myoclonic epilepsy kicked in. They are noe 19 and 16. There is alot you can do to help. But maybe just take some time, let in sink in and then get proactive.
I wish you only the best
|epilepsy, lamictal, seizures|