PHENOBARBITAL

Phenobarbital, a barbiturate, is used to control epilepsy (seizures) and as a sedative to relieve anxiety. It is also used for short-term treatment of insomnia to help you fall asleep.

This medication is sometimes prescribed for other uses; ask your doctor or pharmacist for more information.

How should this medicine be used?

Phenobarbital comes as a tablet, capsule, and elixir (liquid) to take by mouth. You may obtain a specially marked measuring spoon from your pharmacist to be sure of an accurate dose of the liquid. It usually is taken one to three times a day and may be taken with or without food. If you take phenobarbital once a day, take it at bedtime. Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand. Take phenobarbital exactly as directed. If you are taking phenobarbital to control convulsions or seizures, follow the exact schedule prescribed by your doctor.

Phenobarbital can be habit-forming. Do not use phenobarbital for more than 2 weeks if it is being used to help you sleep. Do not take a larger dose, take it more often, or for a longer time than your doctor tells you to. Tolerance may develop with long-term or excessive use, making the drug less effective. This medication must be taken regularly to be effective. Do not skip doses even if you feel that you do not need them. Call your doctor if you have convulsions or seizures while taking phenobarbital. Do not stop taking this drug without talking to your doctor, especially if you have been taking it for a long time. Stopping the drug suddenly can cause withdrawal symptoms (anxiousness, sleeplessness, and irritability). Your doctor probably will decrease your dose gradually.

What special precautions should I follow?

Before taking phenobarbital,

• tell your doctor and pharmacist if you are allergic to phenobarbital or any other drugs.
• tell your doctor and pharmacist what prescription and nonprescription medications you are taking. Some medications may add to the drowsiness caused by phenobarbital.
• tell your doctor if you have or have ever had anemia or seizures, or lung, heart, or liver disease.
• use a method of birth control other than oral contraceptives while taking this medication. Phenobarbital can decrease the effectiveness of oral contraceptives.
• tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. If you become pregnant while taking phenobarbital, call your doctor immediately.
• if you are having surgery, including dental surgery, tell the doctor or dentist that you are taking phenobarbital.
• you should know that this drug may make you drowsy. Do not drive a car or operate machinery until you know how this drug affects you.
• remember that alcohol can add to the drowsiness caused by this drug.

What should I do if I forget a dose?

If you take several doses per day, take the missed dose as soon as you remember it and take any remaining doses for that day at evenly spaced intervals. However, if it is almost time for the next dose, skip the missed dose and continue your regular dosing schedule. Do not take a double dose to make up for a missed one.

What side effects can this medication cause?

Side effects from phenobarbital may occur and include:

• drowsiness
• headache
• dizziness
• depression
• excitement (especially in children)
• upset stomach
• vomiting

Tell your doctor if any of these symptoms are severe or do not go away:

• nightmares
• increased dreaming
• constipation
• joint or muscle pain

If you experience any of the following symptoms, call your doctor immediately:

• seizures
• mouth sores
• sore throat
• easy bruising
• bloody nose
• unusual bleeding
• fever
• difficulty breathing or swallowing
• severe skin rash

If you experience a serious side effect, you or your doctor may send a report to the Food and Drug Administration’s (FDA) MedWatch Adverse Event Reporting program online [at http://www.fda.gov/MedWatch/index.html] or by phone [1-800-332-1088].

source : http://all4freehere.com/2009/09/phenobarbital/

I visited my neurologist yesterday for my bi-annual follow up. We had a good discussion about my phenobarbital intake. I was made aware of the facts above. My neurologist concluded our discussion with a strict and stern commandment - THOU SHALL START TAKING THY CALCIUM SUPPLEMENT. "Yes sirree Madam, I will obey", I answered.

One prominent side effect of phenobarbital is it depletes a person's calcium level rather quickly which is why it is important that people who are on this drug MUST take Vitamin D and calcium regularly in order to maintain healthy bones.

EPILEPSY AWARENESS BOOTH

I have had the privileges and blessings to meet many people at my epilepsy awareness booth which was closed down two years ago due to family commitment. Mitchell is a special lady I met at my booth. Since we first met, we have become and stayed as good friends till now. Mitchell wrote and shared with me about her first meeting with me.

""Serene, did you know that when we first met, I was actually feeling very nervous. I had had my first seizure at age 41 and it was really difficult for me to accept but I knew I had to learn more about this condition called epilepsy. And then I saw a write up in the paper about a lady who has a booth at the Mall. It says that this lady is an epilepsy activisit and she has this booth to help answer questions about epilepsy. And so thats how I came to your booth.

When I approached you, I was very nervous. I didn't want to reveal too much and yet I wanted to find out as much as I can. I am glad that I went to see you because it was nice to talk to someone who had been there, who understood and who cared enough to share. You gave me brochures and shared freely with me about your own situation and that was the best help of all. Just knowing that I am not alone. I don't know how to thank you so I wrote you a poem instead. I hope you like it.""

You look as Serene as your name

and you greeted me with no shame
You told me that epilepsy is not something to be afraid of
You just have to educate yourself and those you love

Your look is so calming
And you were really caring
You helped me to learn more
I learned that life can go on as before

You made me feel calm and assured
Despite hearing about what you had endured
Having epilepsy is not the end
It need not be something beyond comprehend

Your look gave me confidence to confide
knowing there is nothing to hide
One should learn as much as they can
About medicines and procedures like the scan

You have a face that says its ok everything will be alright
The future can be still bright
As long as you understand
Life is not as fragile as the sand

So love, laugh, live,
You can still have the same drive
Understand, learn and take your meds
There is no need to let life hang on a thin thread

Thank you Serene for being there
For me and others who felt despair
I hope you can continue to help many others
Who needs to help themselves, their brothers or mothers

Thanks again Serene!

Epileptic actress attempts to induce fit on stage

An actress, Rita Marcalo, who has suffered epileptic seizures in private for 20 years is attempting to induce one for a public performance.

By Paul Stokes
Published: 6:19PM GMT 19 Nov 2009

Ms Marcalo suffers around two seizures a year even with medication Photo: ROSS PARRY

Ms Marcalo has stopped taking medication ahead of next month’s production entitled Involuntary Dances which she claims is to raise awareness of the condition. But she is facing criticism for putting herself at risk and the voyeuristic nature of the 24-hour event which is being funded by a 13,889 Arts Council grant. People will be invited to film her at Bradford Playhouse, West Yorkshire, where she will use strobe lighting, fasting and raising her body temperature to try and bring about a seizure.

She said: “One of the reasons I am doing this is because epilepsy is an invisible disability. As an artist I am very interested in this idea of doing something in my art that is the opposite of what I do in my life. In my own life it is private but in art I make it public. If you Google or YouTube `epileptic seizures’ you come up with all kinds of mobile phone footage which has been filmed without the patients' consent. Part of me doing this is to address the voyeurism. I am saying, I am choosing to let you do this.”

The charity Epilepsy Action has expressed concern at the potential danger of a patient stopping medication and a spokesman said: “What kind of example is this to other people?”

Details of the stunt emerged at a time when Auvryn Scarlett, an epileptic, was jailed in the US for killing a British couple with his dustbin lorry after failing to take his medication because it interfered with his enjoyment of alcohol.

Ms Marcalo, who directs the Leeds-based dance theatre company Instant Dissidence, suffers around two seizures a year even with medication. The audience, restricted to over-18s, will be provided with sleeping bags and breakfast - but will be woken by a siren the moment she suffers a seizure and can record it on their mobile phones.

Eleanor Barrett, director of Bradford Playhouse, said: “I think it will shock people. I think it's her right to express herself and if people find it distasteful they do not have to see it.”

Philip Lee, chief executive of Epilepsy Action believed many of the charity’s members would consider the performance “inappropriate”.

“I am concerned about the potential danger of a patient stopping their medication to induce a seizure," he said. “Seizures can bring with them the risk of injury from jerking or falling or in the worst cases, death. It is also concerning that the performance could influence others to do something similar. At the very least, the performance should carry a health warning advising people that they should not attempt this themselves.”

Dr Sallie Baxendale, a neuropsychologist at the National Society for Epilepsy, said because seizures were unpredictable, it was unlikely someone would be able to induce on at will even when off medication. She added: “If a seizure happens in front of an audience it is likely to make them feel very uncomfortable. Will this help reduce the stigma which still surrounds the condition? I doubt it."

Source :www.telegraph.co.uk/culture/theatre/theatre-news

""It is so important to keep seizures under control with medication or through surgery. Ms Marcalo is truly dicing with her life by skipping her medication and attempting to induce a seizure in her play. It is my opinion that her intended daredevil and frightful act is extremely distasteful, degrading, disrespectful and embarrassing to people with epilepsy. If she so much wants to be seen in a state of seizure publicly, she can fairly well have some family members record her and post it in YouTube for the purpose of awareness.

I hate to think that her act will be a strong precedent to others. Copycats are everywhere. Epilepsy activists, advocates and epilepsy societies everywhere are preaching tirelessly about the importance of regular medication intake and no thanks to Ms Marcalo who is about to make a public appearance staging herself in a highly revolting act.""

MEDIKIDZ FOUNDATION



Medikidz puts complicated medical concepts into simple language, so that all patients (no matter what their age) can understand what is happening inside their own bodies.



How do you go about explaining medical conditions to young children? Do you hide, brush off or put aside efforts in attempts to explain complicated medical conditions to young children under your care? Young children, like adults, also desperately want to know and understand what is happening to them and why they are feeling unwell. We as caregivers must bear the responsibility of enlightening our sick children about their medical condition lest they suffer in ignorance and in silence.

It is unfair and unjust to allow young children to go through sicknesses in the dark. They deserve all the rights to know and understand their illnesses. Medikidz Foundation has designed and created superhero characters in medical comic books to be distributed to kids who are ill worldwide. These medical comic books will appeal to young children and it's contents are pictorial with easy to digest medical information about various types of illnesses.

Please visit Medikidz Foundation at http://www.facebook.com/pages/Medikidz-Foundation/27690241212 to find out more about the Foundation and the range of medical comic books catered for young children. I am looking forward to receiving my copy of epilepsy comic book catered for young children between the ages of 10 - 15 years old.

Medikidz Foundation will be giving away 100,000 HIV books as part of World AIDS Day on 1st December 2009.

HANDLING OUR LIMITATIONS
(November is Epilepsy Awareness Month)

"Jump, survive or die thoughts" flooded my mind at this moment. Too late to look back.

No regrets. Weeeeeeee.........I am gliding and flying like a bird. Greatest feeling in my life.

For this epilepsy awareness month, I wish to share my personal views as a person living with epilepsy for close to 40 years. Living with epilepsy comes with limitations to some extent. No driving. No swimming alone. No climbing heights. No late night parties that deprive sleep. No alcohol consumption. No over stressing myself over everything in life. No parachute jumping. No, no, no.....the list goes on.

Nobody will like to lead a life filled with too many "No" but don't all of us have some kinds of "No" in our lives? Some people have to say no to certain types of food because of allergies. Some will say no to outings because of lack of accessibilities for wheelchairs. Many will say no to luxurious shopping and eating because of tight financial budgets. Saying no is part and parcel of life. Same goes with saying yes.

How successful we are in living our lives to the fullest depend on how we juggle and cope with the "No" and "Yes" in our lives. Are you the type that allows "No" to downgrade your life or do you take "No" as challenges to improve yourself and your life?

I view life as very fragile and unpredictable. Anything can happen in life. Tragedy does not pick and choose it's victims. Two young boys ran and hid themselves under a tree but was struck dead by lightning. A young toddler laughed to her death. A 17 year old student was permanently blinded by acid. A couple looking forward to marriage was killed in a tragic car accident. A pregnant mum had her handbag snatched from her while she was riding a bike. She fell and injured herself seriously on the road. She was sent to hospital but died in a coma.

With so many uncertainties looming in our lives, it no longer bothers or troubles me that I am epileptic. I have learned to accept and cope with whatever life has to throw onto me. Is it worthwhile to worry excessively over the situations and conditions you are in or does it make more sense to take full charge and control of your life. Manage your life as best as you can and be content with whatever life has to offer. Your life is whatever you make it out to be.

EPILEPSY IS MANAGEABLE AND CONTROLLABLE. IT IS NOT AS TERRIFYING AS IT SEEMS.

LIVING WITH FITS

Wheel Power
By ANTHONY THANASAYAN

Celebrating my son's 21st Birthday

EPILEPSY is a condition of the brain which causes a person to become unconscious. This happens for short periods of time where he or she will move about in an uncontrolled, and sometimes violent, way. Such movements are called “seizures”. They are caused when there is a sudden and involuntary surge of electrical activity in the brain. No one knows why this happens and so there is currently no cure for epilepsy. The person experiencing a seizure goes through a motion that alters the way he or she thinks, acts or feels.

Now, anyone reading these few paragraphs may be terrified of the disease, especially if it were to affect them or their loved ones. Not Serene Low, however, who lives in Bangsar, Kuala Lumpur. The 49-year-old wife and mum of a 21-year-old son is convinced that having epilepsy is neither a death nor life sentence.

“Life is still beautiful with epilepsy,” she told Wheel Power last week. Low is in the best position to know this as she has epilepsy herself, a condition she has lived with for nearly 40 years. In that time, Low has experienced more than 100 attacks.

“The good news is, today, there are many types of anti-epileptic drugs available,” she said.

“With proper diagnosis and the right medication, seizures can be fairly well, if not, very well controlled,” added the prominent epileptic awareness activist whose blog www.epilepsylegacy.blogspot.com won a top health blogger award in February this year. Low pointed out that when taken regularly and as prescribed, anti-epileptic drugs can prevent seizures in a majority of people.

It has been estimated that at least 50% of all patients with epilepsy gain complete control of their seizures for substantial periods of time. Another 20% enjoy a significant reduction in the number of epileptic attacks.

“I have lived with epilepsy for most of my life and I’m fortunate to say my seizures are very well controlled. I would also like to point out that without epilepsy, I would not be the epilepsy activist that I am today. My experience with the disease has helped me stay connected and in touch with other leading epilepsy activists, caregivers and people with epilepsy (PwE) not only in the country but around the world as well.”

Low stressed that being an epileptic does not make her feel different from anyone else. In fact, her epilepsy blog has been a huge plus factor for her. "It has opened a whole new dimension in my life,” she explained. “I have loyal followers and readers, many of whom are PwE who leave inspiring and motivating comments for me. In fact, if not for epilepsy, I would still be the shy and quiet person that I used to be.”

Low had her first seizure as a child after a high fever. Then she stopped having them for about 10 years until they recurred when she was 18. Her last seizure occurred in March.

“Epileptic seizures can be extremely dangerous for PwE, especially when they happen in dangerous places,” explained Low. “Once it happened when I was swimming in Port Dickson where I almost drowned. Another time, I was at a traffic light waiting to cross a busy street and the seizure caused me to fall down on the five-foot way where I broke the whole upper front row of my teeth and needed extensive dental surgery.”

Despite those difficult times, Low said that life has to go on for everybody and especially for PwE. “In my case, I have learned to look beyond epilepsy. The way I see it, the horizon beyond epilepsy is colourful, beautiful and captivating like the artworks of Vincent Van Gogh and his divine paintings. His paintings have inspired me in my art which is one of my greatest interests.”

Low said that although her art may never find a place in art galleries, painting has become a therapeutic pastime for her. Three weeks ago, she submitted 13 paintings to Jim Chambliss, who calls himself “a reformed attorney” after successfully rebounding from traumatic brain injury in 1998. He is currently doing research on the influence of human conditions such as epilepsy and migraine in art at the University of Melbourne and St Vincent’s Hospital in Australia.

Low was delighted that her works were picked as part of a study by Chambliss, entitled Epilepsy and Creativity. Chambliss, incidentally, is also a PwE.

Source: thestar.com.my

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SEVERE MYOCLONIC EPILEPSY IN INFANCY (SMEI) OR DRAVET SYNDROME


This is a very rare form of childhood epilepsy. Out of 500 children with epilepsy, only one, or at most two, children are likely to have this form of epilepsy. It is also called Dravet Syndrome. The epilepsy starts with seizures which may not initially differ from those associated with feverish illnesses (febrile convulsions).

Generally, this syndrome tends to develop during the second year of life. It may not be possible to make this diagnosis until the child is two, three or even four years old. The seizures begin in the first year of life. They are most often associated with high temperatures and often just involve one side of the body, although both sides of the body may be involved.

The seizures are characterised by jerking rather than stiffness and jerking. They often recur quite frequently in the first year of life. However, at this time it is not easy to differentiate these children from others with febrile convulsions who get better and who do not go on to develop other types of seizure.

During the second year of life of children with SMEI, seizures become more frequent and persistent, are often more obviously partial (involving one part of the body) and no longer occur when a child has a high temperature but at any time of day and night.

In addition to the partial seizures, myoclonic jerks (‘myo’ meaning muscle, and ‘clonus’ meaning jerk) become prominent. Often the children are photosensitive (have seizures brought on by flashing lights). Seizures may also sometimes be brought on by hot environments or hot showers or baths.

The early development of affected children is usually normal but once the myoclonic seizures and partial seizures start in their second year of life, children may lose skills or their developmental progress may slow down. The child’s speech and language maybe particularly affected.



For more information on Dravet Syndrome please visit www.epilepsy.org.uk






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