INFO. on SUDEP-What is it & am I at risk?

Tracey - posted on 03/12/2010 ( 2 moms have responded )

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For many years we have been working on shaking some of the common fears associated when a person hears the word seizure. Now most people tend to fear SUDEP when they first hear about it. I would like to be able to say there is nothing to be concerned about but SUDEP can and does affect people with epilepsy. It appears to be showing an indication of striking those individuals who have also shown a certain susceptibility other than the average epilepsy symptoms.



The following information has been gathered from studies that are being done on this important topic. It is also an opportunity for people with seizure disorders to caution themselves by being informed about SUDEP. It is meant as a guide only:



“Sudden Unexplained Death in Epilepsy”, also known as SUDEP is when a person with a seizure disorder (Epilepsy) dies suddenly and there is no obvious cause of death after a post mortem examination. Though it is still difficult to know exactly how many people with epilepsy die each year due to SUDEP, there is an estimated 1000 people die every year in the U.K. Also there are still not enough studies to know exactly what causes it to happen.



Who’s at Risk?



During an average tonic clonic seizure, one’s breathing can stop suddenly but usually returns to normal after the seizure. Some studies suggest that the part of the brain that controls breathing may be affected with SUDEP; therefore breathing stops but then doesn’t return to normal. Also people with uncontrolled epilepsy already have a weakness to their heart and their lungs, so it is questionable whether SUDEP is related to the epilepsy itself. It has been suggested that some people with epilepsy may be at a higher risk of SUDEP than others: Those who have generalized (tonic clonic) seizures during sleep…those having poor seizure control…those who are not taking their prescribed anti seizure medication, or are having frequent/sudden changes in seizure medication…young adult males…and those with learning disabilities.



Reducing the Risk:



Often when a person dies from SUDEP they have been left alone during a seizure. If you are close to someone who may be thought to be at a higher risk of SUDEP or who has an uncontrolled seizure disorder you may be able to reduce the risk of SUDEP: If at all possible, try to arrange a schedule that will minimize how often a person is left alone. Whenever possible, it is always good if the person caring for the person having a seizure can place them on their side during or after a seizure. Watching to ensure one recovers for 15 to 20 minutes after a seizure is a good precautionary measure. Massaging one’s limbs after a seizure can help to stimulate blood circulation and relax sore muscles. And though not considered standard procedure, oxygen can also be administered if the person is having difficulty breathing after a seizure. If necessary, a portable oxygen tank can be purchased and then refilled as needed through a medical supply store.



As with any illness, being as responsible as you can is important:

If you have uncontrolled seizures you may want to consider seeing a specialist for a re-evaluation of your epilepsy and the medications being used to control your seizures. A specialist (such as a neurologist) will inform you about other possible options for seizure control. You may also have the opportunity to participate in a drug trial; this is the final test done on new drugs. People with epilepsy participate by using these new drugs in studies over a period of time prior to a drug being placed on the market.

Never change or stop taking your medication without consulting your specialist. Don’t allow yourself to run out of medication. If you have trouble remembering to refill prescriptions as needed; see if a family member can help out. Or try using pill boxes to hold enough days in advance to remind yourself when you’re running low on medication.



For those seeking counseling for the loss of a loved one or for more information about SUDEP please contact your local Epilepsy Agency. Other suggested websites are; Epilepsy Bereaved and SUDEPAWARE. Or email Karen Osland, Family Support and Liaison Manager at karen.osland@epilepsybereaved.org.uk



Sincerely,

Tracey Alderson, Administrator, Epilepsy Awareness 2009

2 Comments

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Julie - posted on 03/12/2010

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Thanks Tracey. Unfortunately this information comes to me too late. I lost my precious 16-year old daughter to SUDEP in April of last year. The Dr.'s really need to be forced to talk about this with their patients. My mother also had seizures and passed away after having a seizure. After she passed away, I went to both her neurologist and to my daughters, concerned about this and was told by both that I had nothing to worry about. Indicated it was fluke and had something to do with my mother's age. The subject of SUDEP or that my daughter was ever at risk was never mentioned to me. I was told her biggest risks were water and falling. If we had known she was at risk, we could have monitored her or taken other precautionary measures.

Thank you for discussing this!

Susan - posted on 03/12/2010

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Hi Tracy Thank You so much! When I first saw this post thought you were asking a specific question. Please feel free to take any links or videos or what I have posted and post them on your Epilepsy Awareness group as well. We are all joined forces here to stop this SUDEP from taking any more of our Children. If any of us can be of any help or support to anyone let us know that is why I started this group!

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