Epilepsy and what I now know

Hello all I have decided to sit down and write about all the things I know about epilepsy first had from a mother who has gone through it with her son.

All the research and all the first had experience that has all come together for me, some of these facts are difficult for me to even think about so I hate coming here but I know it is important to share.

Lets begin with what is Epilepsy?

Epilepsy is a neurological disorder, it is when you have unprovoked seizures, more then one and they are not caused by any other reason.

It is the fourth most common neurological disorder and anyone can get it at any age.

Yes they can happen anytime, at any age and for no reason at all. Anyone at any time can have an unprovoked seizure.

This means a small child while at school can have one, a teen playing sports or doing activities, a mother, a father, a person at work, a grand parent, anyone at any time, while you are sleeping, while you are shopping, while you are driving ANYTIME.

There are other ways to have seizures like low blood sugar, brain injury and high fever to name a few but epilepsy is seizures with out any know cause.

What types of seizure are there?

Any seizure is not good but there are a list on many seizures

Of course the most scariest because you can actually see it happening is the Grand Mal or the Tonic Clonic or convulsive seizures, this is the one that Matt has the most, loss of consciousness, whole body is involved they stop breathing, stiffen body and shake like crazy and can last a long time.

Absent seizures formally known as pitti mals is when they are unconsciousness without convulsions, they are unconsciousness with a blank stare, it usually happens really fast and sometimes you may be unaware of it.

Atonic also known as Drop seizures These are as the names says and you just drop anywhere at anytime it is just like your legs give out.

Clonic is the shaking and can be the whole body and may be unconscious but does not last long.

Tonic is spasms in certain areas like muscle spasms and does not last that long.

Myoclonic is abrupt muscle jerks in parts or all of the body

Matt has had all of these there has never been any warning or what will increase them.

Seizure Triggers

Somethings we found for Matt the cause seizures are

Flashing lights

Coffee

Stress

High temperature

Over heating

Some Auti Seizure medication that didnt work for him

Lack of sleep

What test do they take

Usually the first time you have one or two you will go to the hospital and there they will evaluate you taking fever, blood test, blood pressure and then they will order other test like EEG, MRI, Cat scan and such usually by that time they will understand something.

Can you die from Epilepsy?

The answer is yes you can.

This is one of the hardest parts for me because I know as being Matts mom that every day I wake up he may not, I never know what that next seizure will bring so I become grateful every morning he wakes up no matter what Matt is here with us.

The over all risk on dyeing for people with epilepsy is 1.6 to 3 times higher then the general population.

Take into account all the falls, the bumps, cuts bruises that happen that can cause so much more damage, drowning, suicide, prolonged seizures,and also hidden risks like Sudden unexpected death in epilepsy

Yes sometimes people with epilepsy just die in their sleep no seizure not bumps or anything just die unknown why and nothing anyone can do.

One of the reasons I get up every time I hear Matt have one to check on him and talk him back to us.

Is there a cure for Epilepsy?

There is no none cure for epilepsy and just like as fast as it can start in someone it can end just as fast in fact you can have only a few and never have any again, you can have them for years and then just stop and you never have them again.

What is the treatment

Of course there is the pharmaceutical medication, there is surgery, these are the two things you will hear about from the Dr's.

What happens when neither works?

Well there are other things that work and help a lot like Diet, cannabis oil high in CBD's and of course for people like Matt Vitamin D so vitamins or even a sun lamp can help also de-stressing and nature help as well.

Side effects

I know there are many and have been for Matt some include

Brain damage

bumps, cuts and bruises

Back injury

No cartilage in shoulder

Weight loss

attitude change

memory loss

Erratic emotional state

Inability to focus

To focused

Inability to care for ones self

Confusion

Just to name a few

Over imaginative

Socially known

There are many with epilepsy that you would never know even have epilepsy, it is controlled by medication or something else.

There isn't a lot known about epilepsy and so it makes it difficult for others to understand it and well some people just cant handle it, it is a difficult disorder to live with and to know someone who lives with it.

There are also many people who have it and it is untreated by pharm medication so are let to find other means.

I want to spread the word to help others know more, to help others understand this and to support those of us who live with it in our life every day.

Epilepsy is a seizure related disorder that is not curable, it can happen at any age, it can come on fast and it can leave just as fast as it came on, it can cause brain damage and other side affects including death, there are many treatments including diet and cannabis oil. Do your research and find out what is best for you, please share this someone may need to know that there is more to this then just what is being told to them, if you are looking for more on what we have tried for Matt please feel free to look around our page or contact me.

Lets spread the word this is important.

<3 Joan Nielsen