Are you having an aura? Get in touch with yourself!

So what's an aura? An aura is a distinct perception –- either visual, motor, sensory, or psychological –- felt around the time a seizure occurs. Although an aura may signal a seizure because it usually happens a few seconds before a seizure occurs, an aura and a seizure may be separated by as much as an hour. Auras are not experienced with all types of seizures. They are mostly seen in individuals who suffer from complex or generalized seizures. Additionally, auras vary from person to person, and can manifest in a number of ways:

• Vision – includes distortion of images, seeing bring flashes of light or dark spots, or tunnel vision.
• Smell – certain smells may be experienced during an aura.
• Hearing – certain sounds or voices, or a distortion of sounds that are already present, may occur during an aura.
• Feeling an impending sense of doom, anxiety, or fear.
• Nausea
• Weakness, numbness, or tingling of a limb or limbs.

An aura is usually consistent in the person experiencing it. For instance, if a person is seeing flashes of light before he has a seizure, this aura will be somewhat similar each time before that person has a seizure.

While auras can be helpful in signaling to the individual that he is about to have a seizure and needs to be in a safe place, they can also help healthcare providers pinpoint the area of the brain where the seizure is originating.

_Source:

Beers MH, Porter RS, Jones TV. Merck Manual, 18 ed. 2006

That being said, do you know if you have one?  How in touch are you with what your body is telling you?  I used to own a very handsome Golden Retriever that could tell if I was about to have a seizure.  That was so cool. I didn't know he had that gift of knowing when I was going to have one until the day I had a grand mal seizure while mowing my back yard.  He was walking beside me as I was pushing the mower and he started pulling on my pants with his teeth.  I didn't catch on to what he was doing until I went into a full blown generalized tonic-clonic seizure.   What I remember next was him lying next to me licking my face very lightly.   He became my constant companion after that.  It may be not possible for most people but having a dog like that for the person with epilepsy, or the caretaker of that person so if not get in touch with your body and start to to recognize the subtle changes that may be the precursor, or aura,  you need to tell you a seizure is coming.   I started to keep a detailed diary of foods I ate, liquids I drank, and on it went so I could develop a list of what may, or would, cause a seizure. What's happening now is I start sniffing like my nose is running or I'm trying to catch the sent of good smelling cake cooking.   You may have an aura right before a seizure or several minutes before having one.  Whatever it is get to know where you recognize it. 

  If you don't already, a good place to get one is:  http://seizurediary.org/ .  

Start today keeping a diary!

Low Cost Anti-Convulsant Medications - Low costs epilepsy drugs

Low cost anti-convulsants, low cost drugs for epilepsy

I found a great source for low cost AED’s I wanted to pass along.  Go to www.healthwarehouse.com .
You’ll still need a prescription but you can save hundreds of dollars depending on the amount you take

I take 1200 mgs of Lamictal, Lamotrigine  a day so I can save about $500.00 for a 90 day supply.   I do have insurance but until my deductible is met my meds are $700 for a 90 supply. 

There are different programs that will save you money on your meds but you need to pass their income limitation benchmark. 

Hope this helps!

Singers and Seizures

I read about the death of Teena Marie yesterday.  Here’s the report:

Dec. 28, 2010

R&B icon Teena Marie may have died from suffering a grand mal seizure, according to reports that are surfacing after the star was found dead in her Pasadena home the day after Christmas.

Sudden unexplained death in epilepsy, or SUDEP, is typically associated with these most intense seizures and likely results from problems with breathing or heart rhythm, said Dr. Jacqueline French of NYU Medical Center and the American Academy of Neurology. 

My wife’s brother has played with Prince on several occasions so I knew Prince has first hand experiences with epilepsy.

 Got me to thinking about the other singers that have admitted to having epilepsy.  They would be:

•  Jimmy Reed, 1925–1976.     An American blues singer. His diagnosis of epilepsy in 1957 was delayed due to an assumption that these were attacks of delirium tremens. He died after an epileptic seizure.

• Neil Young, born 1945, Canadian singer-songwriter, formerly of bands Buffalo Springfield and Crosby, Stills, Nash & Young disliked the effects of his medication; seeking personal stability as an alternative means of control.

• Lindsey Buckingham, born 1949.The guitarist and singer in the music group Fleetwood Mac was taken to hospital after a seizure while on tour, aged 29. His epilepsy was successfully controlled by anticonvulsant drugs.

• Chris Knox, born 1952, New Zealand indie musician (Toy Love, Tall Dwarfs) has addressed his epilepsy in such songs as "Lapse", and it is also referenced in his album title "Seizure".        

• Ian Curtis 1956–1980. The vocalist and lyricist of the band Joy Division was diagnosed with epilepsy aged 22. The cover of their album Unknown Pleasures resembles an EEG tracing, but is actually the tracings of the radio emissions of a pulsar. The condition was a primary cause of his suicide in 1980.

• Richard Jobson, born 1960, formerly the lead singer with the punk rock group The Skids, now a television presenter and film maker. He has absence seizures.      

• Susan Boyle, born 1961, Scottish singer who came to international public attention when she appeared as a contestant on the TV program Britain's Got Talent in 11 April 2011. She had epilepsy as a child.

• Edith Bowman, born 1975, Scottish television presenter and a radio D.J. Had epilepsy as a child.

• Peter Jefferies, born ca.1961, New Zealand musician (Nocturnal Projections, This Kind of Punishment).

• Vusi Mahlasela, born 1965, a singer-songwriter whose work inspired those in the anti-apartheid movement.        

• Hikari Oe, born 1963, Japanese composer who has autism, epilepsy and mental retardation and has created two successful classical-music CDs. He is the son of Kenzaburo Oe, the Japanese novelist who won the 1994 Nobel Prize in Literature.

• Mike Nolan, born 1954, singer and one of the four original members of the British pop group Bucks Fizz. Developed epilepsy after a coach accident in 1985.        

• Adam Horovitz, born 1966, member of the music group Beastie Boys.       

• Mike Skinner, born 1978, also known as The Streets, he had epilepsy between the ages of 7 and 20.

• Geoff Rickly, born 1979, member of the band Thursday, who discovered he had epilepsy while on tour.

• Prince, born 1958, American singer, who had epilepsy as a child and sang about his condition in the song 'The Sacrifice of Victor'.

You can look this up yourself and check the references at  http://en.wikipedia.org/wiki/List_of_people_with_epilepsy where you’ll also a long list of famous people with epilepsy.

The point I’m making by writing this is to remind you and other people, or tell for the first time, THAT YOU A PERSON WITH EPILEPSY – NOT AN EPILEPTIC.  

 Epilepsy is what you have, not what you are. You are not an epileptic. You are a person with Epilepsy. Epilepsy is a part of your life.  It is not your whole life.  You are not different from other people in any major way except for the brief time you’re having a seizure. Other people may expect that having epilepsy makes you different but that’s their mistake.  Given the chance you can probably live, work and function in the world just as well as anyone else.

Talk to you soon!

Long-term effects of AED's and seizures

 
I'm sure there are dozens of studies about the long-range effects of seizures and anti-convulsants have on a person that I'm not aware of but I do know of one case that qualifies - mine.  I began having nocturnal grand mal seizures, generalized tonic clonics, when I was 16.   Soon after I started having seizures in my sleep I began to have them when I was awake.   I was having seizures, grand mal and petit mal seizures 24 hours a day.  Now, 32 years later I’m only having petit mals 1 or more times a day with occasional clusters of 10 or more at a time.  Of those 32 years I've been taking anti-convulsants for 32 years.  How many, I can’t remember.  That would be due to the 32 years of taking AED’s and having seizures.    All that to say that at some level I qualify as a person that can talk about what the long range effects of having seizures and taking anti-convulsants has on a person.  
There so many different factors that are going to determine the long-term effects that seizures and AED’s (anti-convulsant drugs) have on a person that it’s hard to give any definites as to what they are.  It will vary as to what the type and amount of AED one takes, the foci, or origin, of the seizure, the physical, mental, and spiritual shape the person with epilepsy is, the life style they live and many more.   The important thing is you find and keep a very good Epileptologist and a family doctor that’s familiar with epilepsy and that YOU stay informed on what they should know.  An example of what I mean by that is that if a doctor tells you its ok to take two AED’s at the same time do the research on your own to make sure they don’t conflict in anyway or could harm you.  Stay aware of what your body and mind are telling you so you can relay that to your doctor.   If you see that your doctor is wrong tell him/her so and if they don’t listen or adjust your medication then find another doctor. 
Educate yourself on the long-range effects that continual use of AED’s and seizures have on a person and then monitor your own health and be aware of any changes that may be caused by them.
The most important thing is to take care and strengthen your spiritual and mental health.   If you do that, you can overcome any of the long-term effects that AED’s and seizures are going to have on you.

Epilepsy and Inflammation - one reason I drink Nopalea

It has long been known that some inflammatory diseases can affect that brain and cause seizures. There is now increasing evidence that inflammation in the central nervous system may be involved in both creating seizures foci (the process of epileptogenesis) as well as maintaining them over time, even in patients without underlying inflammatory disease. This evidence derives from both animal models and from examining tissue removed from seizure foci in patients undergoing epilepsy surgery. For example, in animal models in which a seizure focus has been created, there is an increase in inflammatory mediators such as cytokines, and specifically a cytokine called IL 1B. Also, around an area where a seizure focus has developed, inflammatory cells such as reactive microglia can accumulate. Inflammation can precede the development of seizures, and also occurs after each seizure. Now there is evidence from animal models of epilepsy that this type of inflammatory mediators, and specifically IL 1B, can actually calm the inflammation, and seems to reduce or eliminate seizures in some animal models. At the NYU Epilepsy Center, we have begun to explore whether similar types of inflammation occur in human seizure foci. There is already good evidence for inflammation in some types of epilepsy, most notably temporal lobe epilepsy and epilepsy associated with Tuberous Sclerosis. Inflammatory cells are seen close to the seizure onset zone in tissue resected from patients with uncontrolled seizures, and diminishes in areas not involved in seizure generation.

How's your medicine working?

Just wanted to tell everyone about Health Warehouse.  I get my Lamotrigine (Lamictal) for 75% less than thru my normal pharmacy.   They several anti-convulsants listed.

http://www.healthwarehouse.com/

Overcoming Epilepsy: Sezures in your sleep

Overcoming Epilepsy: Seizures in your sleep
 If you're having nocturnal seizures find a good epileptologist and be prepared for several procedures coming your way. None of them are painful, maybe a little depending on your pain tolerance, just inconvenient. My advice would be to get it checked out and do whatever is necessary to take care of it. Why is it a VERY serious issue? For infants it could a cause for SUDEP, for adolescents and adults it could easily result in suffocating ones self in their own bed. Rolling out of bed and hitting your head on something, sleep walking and falling down while doing so. I've experienced all of them and am still here to tell you about it but don't take that chance. Read more here:

http://my.epilepsy.com/epilepsy/newsletter/august10_sudep

Wikipedia Definition:
Nocturnal epilepsy is a seizure disorder in which seizures occur only while sleeping[1]. Several common forms of epilepsy, including frontal lobe epilepsy, can manifest in a nocturnal state.

Epilepsy can be nocturnal if the form of epilepsy one has only triggers seizures while one is asleep, or if one normally has seizures that occur at the same time. In the latter example, if one stays awake at a time when s/he is usually asleep, s/he can have the seizure while awake.
Diagnosis

The condition may be difficult to diagnose. The subject himself/herself may be unaware s/he is having a seizure disorder[2]. To others, the involuntary movements made during sleep may appear no different than those typical to normal sleep[3].

One who suffers a nocturnal seizure may notice some unusual differences upon awakening in the morning, such as a headache, having wet his/her bed, having bitten his/her tongue, a bone or joint injury, or lightheadedness. Others may notice unusual mental behaviors with the person, consistent with the aftermath of a seizure[4]. There may also be objects in the vicinity of the bed knocked on the floor, or the subject him/herself may be surprised to find him/herself on the floor.

A possible risk of any nocturnal seizure is that a concussion, possibly a significant one, could occur and the patient thus would be in danger and might not know it until late in the process.
Treatment

Like other forms of epilepsy, nocturnal epilepsy can be treated with anticonvulsants[5].


Don't kid your self, or let any one else kid you, epilepsy can kill.  The chances of it ever happening to you are a million to one, or better, but be safe and take the steps necessary for you to prevent it from ever happening.

Seizures in your sleep

I'm taking Lamictal, 1200 mg a day.  I'm doing ok as far as the dizziness goes, my seizures are just about under control but it's happening frequently now, I have seizures when I'm napping.  I'll lay my head on my desk, midday usually, and am awakened by a seizure cluster.  I have to wake up to get them to stop, go through the grieving process - quickly, and then get back to what I was doing.  This is getting annoying.

I mentioned going through the grieving process.  Do you know what I'm talking about?  I'll talk more about it and how it can help you deal with your seizures next time

How to overcome epilepsy?

I've created this blog to tell you how to overcome epilepsy not just cope with it, deal with it, or ignore it.  The first thing I need to say is YOU ARE NOT AN EPILEPTIC.  YOU ARE A PERSON with epilespy.  You may think its just symantics but it makes a huge difference.  If you have epilepsy, or know someone who does, you/they are not epileptics.     Epilepsy is what you have, not what you are. You are not an epileptic. You are a person with Epilepsy. Epilepsy is a part of your life.  It is not your whole life.  You are not different from other people in any major way except for the brief time you’re having a seizure. Other people may expect that having epilepsy makes you different but that’s their mistake.  Given the chance you can probably live, work and function in the world just as well as anyone else.

In my future posts you'll find this as an underlying theme i.e. I'll sound like a broken record.  In my opnion, one of a person who's been working to overcome epilepsy for 32 years, I feel that making that distinction is one of the first changes in ones mindset that needs to be established in order to overcome epilespy.