Acceptable level of seizures?

[jgbmartin]

I don't post much here as I feel bad because it seems my seizures are so minor in comparsion to most on here.
I am on Keppra (750 2xs a time)...doc said I am on the low end of dosage. I went a few months without any seizures. But now in past two months, I have had a seizure each month. Doc had told me I didn't have to come back until January if I stayed seizure free. I have NOt called my doc about these last two seizures. Mainly because I know he will up the dosage of Keppra and I cannot deal with the drowiness that will cause and he has told me NOT to take Vitamin B supplements.
Is there an acceptable level of seizures that only having one a month would not be deemed a problem.

[Meetz1064]

an acceptable level of seizures would be ZERO. In my mind at least. I guess it's up to each individual. Keep in mind, you can't DRIVE, either. So, it's really up to you......

Just out of curiosity, WHY has your doctor told you not to take Vitamin B supplements???

[Crazy Monkey]

Looking back on previous threads you mentioned Petit Mal, are these the type of seizures that you are talking about?

It sounds like you have done really well to have your seizures controlled for several months it just shows that Keppra is working, has something changed in the last couple of months that could have triggered these? tiredness and stress are my biggest triggers.

I have petit mal (absences) and an acceptable level to me would be zero, as only at this point would I be able to do things like get my driving license and scuba diving etc. My seizures are uncontrolled and I have several a day.

You really need to have a chat with your neurologist. I know meds suck but increasing Keppra might be what your neurologist suggests, too try and get your seizures under full control again.

Good luck

The Crazy Monkey

[jgbmartin]

Well, I have been told my seizures are petit mal and complex partials and simple partials. Nothing has changed, but I was only started having seizures in Jan of this year and they diagnosed it in April, so I am very new to this. When the seizures started in January, I would have several in a day...so if I only get one a month, it's a big improvement.
I DO drive (yeah, I know you are not suppose to...but if I cannot drive, I lose my job/health insurance/home...). I do get auras to warn me when they are coming on...I always get my seizures during the day when I am at work.
I really don't want to take any more Keppra than I do now. When they first started the Keppra it was 500 m 2xs a day...and just uping it to 750, was awful

[Crazy Monkey]

If you don't get on too well with Keppra maybe you need to discuss this with your neurologist and he/she might consider changing you to a different medication. I take Lamictal and I don't really get any side effects, just a little drowsiness mid afternoon, I know I still get a lot of seizures, but you should have seen me without it.

In the UK, driving laws are strict, you have to be seizure free for 12 months and after that the deicision has to be made by your neurologist whether it is safe for you to be on the road. Personally even if I was down to 1 seizure a month I would still not drive, I would be too worried not just for my safety but for the safety of others, but then again, I don't get an aura, my seizures happen without warning.

[RobinN]

I really feel the predicament that you find yourself in. This is one reason that Rebecca remains med free. I have searched, and researched and experimented with alternatives to get her to a point where her seizures continue to reduce in number. Every month is better than the month before.

This takes diligence with nutritional choices, supplements, and neurofeedback. Keeping precise journals on a calendar, and being careful around her time of month. Something we are doing is right, because we are seeing her get better all the time.

You might consider alternatives more seriously. Figureing out what your body needs to remain seizure free. I believe the Keppra is only a piece of duct tape placed over the problem. If you don't correct the problem, then it is bound to strike again at some point.

This is my opinion, ...

[Bernard]

You might do better with a different drug. You should let your neurologist know about the seizures and also about the intolerable side effects.

[jgbmartin]

Meetz
I overlooked your question, doc said no more B than only what is in multi vitamin because Vitamin B-12 can cause severe and irreversible damage to o the brain and nervous system.

[Nancy]

aaaaggggggghhhhhhhhh..............I take a multi vitamin that contains some B-12 AND I also take 500mcg of B-12 per day.

[RobinN]

Rebecca takes a B Complex which has 100mcg (micrograms).
I have only read positive reasons for taking it.

Nutrition and Supplements

* A ketogenic diet -- high in fat and low in protein and carbohydrates -- may help control the frequency of seizures. It has been used most frequently in children and seems to be more effective for children than adults. A doctor needs to closely monitor this diet, both for side effects and for compliance with its rigid structure.
* Some studies have shown a connection with food allergies and seizures in children. Avoid alcohol, caffeine, and aspartame, along with any supplements that have stimulating effects. A holistically oriented health care provider can help you pinpoint possible food allergies.
* Taurine (500 mg three times per day) is an amino acid that may help inhibit seizures. It acts in a similar fashion to GABA (gamma aminobutyric acid, 500 mg two times per day), another amino acid that is often low in people with seizures. Take one of these only under your doctor's supervision.
* Folic acid may be depleted during seizures and in some people with seizures. However, taking extra folic acid can reduce the effectiveness of anticonvulsant drugs and lead to more seizures. Take folic acid only under your doctor's supervision.
* Vitamin B12 (100 to 200 mcg per day): B12 levels may be reduced by some anticonvulsant drugs.
* Vitamin B6 (20 to 50 mg per kilogram of body weight) may help control seizures in children, but B6 may also interfere with anticonvulsant medications, leading to more seizures. Take only under your doctor's supervision.
* Vitamin E (400 IU per day) may help reduce the frequency of seizures when used with prescription drugs, but studies have shown mixed results.
* Manganese (5 mg per day) levels are often low in people with epilepsy.
* Anticonvulsant drugs may cause low levels of calcium, vitamin D, and vitamin K, so people who take anticonvulsant drugs should ask their doctor about taking a supplement. You should know that calcium can interfere with anticonvulsant drugs and should only be taken under a doctor's supervision.
* Melatonin (3 g at bedtime) may decrease the frequency of seizures in children, but also can increase seizures in some people. Take melatonin only under a doctor's supervision.
* 5-HTP can help increase serotonin levels in the brain, which some researchers think can lessen seizures by having a calming effect on the nervous system. Others feel that raising serotonin levels past a certain threshold may actually increase the frequency of seizures. While no conclusive studies exist, some doctors are using 5-HTP to treat seizures. This therapy should be used only under strict medical supervision. 5-HTP can have dangerous interactions with other medications, such as antidepressants and certain neurological drugs. Make sure your doctor has a complete list of your medications before starting you on 5-HTP therapy.

http://www.umm.edu/altmed/articles/s...ers-000148.htm

[Belinda5000]

acceptable level of seizures zilch!
If I go out and I know my there's a possibility of having seizures becuae of what I'm doing I'm not staying home pout.
I'd just rather not have seizures at all.


Belinda

[jgbmartin]

I know I need to call me doctor, I just don't want to deal with it
I'm really hating having these seizures, I hate worrying if I'm going to have one, I hate having to hide it because I would lose my job, I just hate everything about it right now. My friend is taking me out to spend the weekend in the country so I can rest and not be so stressed out for a few days.
i will call dr's office after the weekend. Sorry, just feeling a bit down tonight.

[Caboose]

Similar boat on the doctor thing. Maybe it's because I'm in the healthcare field, but it's easy to not want to go to the doc when you know what the "solution" will be in less than 15 seconds. Seriously, count to 15 - it wouldn't take that long for many doctors:

"Well... I've had a few more sei..."
"You're not in the therapeutic range - we'll have to start increasing your dose."

Doctors are not Gods. Maybe finding exploring other alternatives should be on the agenda. It's better than just tolerating seizures.

Caboose.

[RobinN]

Sorry, just feeling a bit down tonight.

Certainly understandable.
I hope the get away is helpful. Enjoy it!

[forward2007]

I guess the realistic goal is to have as few seizures as possible for every patient without sacrificing their quality of life due to drug side effects or surgery complications. No pressure on the Dr or patient of course.

[brain]

Epilepsy Conference Emphasizes 'No Seizures, No Side Effects'

Epilepsy Conference Emphasizes
'No Seizures, No Side Effects'

By Natalie Frazin

NINDS recently coordinated a 2-day international scientific conference focused on advances in epilepsy treatment. Initiated by the White House, the conference, "Curing Epilepsy: Focus on the Future," was hailed by participants as an important occasion in epilepsy research, with many envisioning a future when epilepsy not only can be cured (defined as "no seizures, no treatment side effects") but also prevented.

The conference featured presentations and roundtable discussions by more than 30 clinicians and scientists as well as several lay representatives who related their personal experiences with epilepsy. Scientific topics included prospects for interrupting and monitoring epileptogenesis, the processes by which epilepsy develops; genetic strategies for curing epilepsy; and strategies for developing new therapies. More than 500 people attended the conference, which was cosponsored by the Epilepsy Foundation, the American Epilepsy Society, Citizens United for Research in Epilepsy, and the National Association of Epilepsy Research Centers.

The conference opened with a videotape of several individuals who shared their experiences with epilepsy and some of its consequences — a poignant reminder of the human side of epilepsy. This disorder affects an estimated 2.5 million people in the United States and 40 million worldwide. Despite recent advances in treatment, many people with epilepsy still suffer from uncontrolled seizures or from the side effects of treatment. A recent study by the Epilepsy Foundation estimated that the annual financial cost of this disorder is $12.5 billion in the U.S. alone. Despite clear evidence that epilepsy is a brain disorder, people with epilepsy still suffer from widespread misunderstandings about the condition that can make it difficult for them to obtain education and hold jobs.

Former NINDS deputy director Dr. Roger Porter (r) presents an award to Dr. Harvey Kupferberg (c) in recognition of his many years of service leading the NINDS Antiepileptic Drug Development Program (now the NINDS Epilepsy Therapeutics Research Program). Looking on is NINDS director Dr. Gerald Fischbach.

"There is no question that epilepsy research is ready for a new infusion and for a dramatic expansion, both in the kinds of research going on and in the quality of that research," said Dr. Gerald Fischbach, director of NINDS, during his introductory address. He praised the cosponsors for their support of the conference and of biomedical research in general. "One of the really gratifying things about this job is to see private citizens and individuals who...get involved in biomedical research."

Highlights of the conference included a videotaped presentation by First Lady Hillary Rodham Clinton and a surprise address by Rep. Neil Abercrombie (D-Hawaii), who related how he developed epilepsy more than 30 years ago and urged participants to make themselves known to their representatives in Congress. Former NINDS deputy director Dr. Roger Porter also presented an award to Dr. Harvey Kupferberg, who has led the NINDS Antiepileptic Drug Development Program (now the NINDS Epilepsy Therapeutics Research Program) for 18 years and has announced plans to retire in June. Participants in the conference gave Kupferberg a standing ovation in recognition of his longstanding commitment to epilepsy research.

Scientific presentations at the conference were interspersed with roundtable discussions on strategies emerging from new discoveries, bioethical issues of gene discovery, and the process of moving discoveries from the laboratory to the clinic. For the first time at an NINDS conference, people viewing the lecture via webcast were given the opportunity to submit questions to the speakers by sending email to a special address set up for this purpose.

During the plenary talk, "Epilepsy 2000: The Beginning of the End," Dr. Timothy Pedley of Columbia University encouraged scientists to adopt a "new spirit of inquiry in a new millennium," and to expand efforts to engage those outside the mainstream of epilepsy research. He pointed out several advances that are leading to new hope for people with epilepsy, including the molecular genetics revolution, targeted drug development, and brain imaging methods that for the first time allow researchers to use human volunteers as experimental subjects for basic research studies. He also summarized an array of potential new therapies, including stem cell transplants, stimulation of controlled neurogenesis in the brain, and gene replacement. "What is science fiction today may be reality tomorrow," he noted.

Much of the first day was devoted to describing processes of epileptogenesis and how these processes eventually may be interrupted to prevent epilepsy. Dr. Susan Spencer of Yale University School of Medicine opened the first session by describing some of the many factors such as head injury, stroke and encephalitis that can cause epilepsy. She noted that epilepsy can develop up to 5 years after head injury or other trauma, allowing a significant time window for preventing this disorder. Other presenters described brain monitoring and imaging techniques that can aid in detecting brain changes.


Dr. Francis Collins, director of NHGRI, discussed how advances in the tools of gene research can aid research on epilepsy. These tools include microarrays, or "gene chips" that can analyze the expression of many different genes. Information supplied by these microarrays may lead to advances in diagnosis, prevention, gene therapy, drug therapy, and pharmacogenetics — the science of predicting which drugs are most likely to be successful in treating patients based on expression of different genes. This type of prediction may eventually allow doctors to rapidly identify an effective treatment without serious side effects, instead of the prolonged period of trial and error that is now often required to find an optimal treatment for each patient. Other speakers summarized the current status of genetic research on epilepsy and how genes that affect development can lead to epilepsy.

Dr. Raymond Dingledine of Emory University brought home the need for more innovative drug development research, pointing out that all of the currently available anticonvulsant drugs act on just five molecular targets. He also discussed several promising new targets for drug therapy, including potassium channels and NMDA receptors. Other participants summarized possibilities for refining surgical therapies as well as new strategies such as deep brain stimulation and cell therapy to treat epilepsy. Several presenters also discussed the potential for a device that might be able to detect changes in brain waves that precede a seizure and administer a dose of medication directly to the affected region of the brain. Dr. Daniel Lowenstein of the University of California, San Francisco, envisioned an even more advanced device — still entirely hypothetical — that could be implanted in the brain and deliver axon guidance factors or other brain chemicals to draw axons through the chip and alter brain circuitry.

While the focus of the conference was on scientific presentations, several unique opportunities surrounded the event. These included a special meeting for junior investigators on the night before the conference that introduced a new RFA targeting translational epilepsy research by junior investigators. The conference also included lunchtime sessions that allowed members of the public to interact with the researchers attending the conference. Finally, a partnership between the Epilepsy Foundation and WebMD provided several online epilepsy discussion panels and an online epilepsy chat room hosted on the WebMD web site during and just after the conference.


Fischbach described the conference as a wonderful experience that left him with "a great sense of hope and optimism" about prospects for advances in epilepsy research. He also announced the creation of a planning panel that will meet during the next 6 months to develop a 5-year research plan to move toward curing epilepsy. He concluded by calling for industry and academia to find ways to work together to solve the enormous challenge of curing this devastating disorder.

[RobinN]

"One of the really gratifying things about this job is to see private citizens and individuals who...get involved in biomedical research."

Nice comment to read from the medical field.

Didn't see anything in the article about nutrition and neurofeedback. Though a big push for more innovative drugs...

[jgbmartin]

Well, I return early this am from my country getaway. Only to find, my beloved, Boo had passed away Boo has been my companion, protector and friend for over 12 years. I hate to refer to him as a dog, he was so much more to me.
It appears he died in his sleep, just a few hours before I got home.
I am simply devasted.

[RobinN]

I am so sorry to hear this news. I had the same news when I recently came home from a trip away. It is so hard to lose a companion like this.

My deepest sympathy.