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November is Epilesy Awareness Month

Christen

Christen

New member
I have a made is a personal goal to make purple (epilepsy awareness) as big as pink (breast cancer awareness).

Do you know that epilepsy effects 65 million people around the world? Epilepsy can affect people from all walks of life. It doesn't discriminate against age, sex or nationality. Do you know all the different types of seizures? There are over 40 different types of seizures and of course many don't know what to look for because they only know about the "Grand Mal" seizures.

I want to share mine and my daughters stories because it shows how lack of knowledge can affect people. My daughters story really helps tell mine so they kind of go hand and hand.

I was diagnosed with epilepsy just 3 short years ago after my migraines became so bad that I sought out treatment. I had also had bouts of "staring off" or "day dreaming" that was followed by slurred speech. I went urgent care not remembering a thing and they allowed me to get into my car and drive myself to the emergency room, that I had no idea where it was. In the emergency room I waited for hours and after no tests they gave me pain medication that didn't work and set me home. After this we found my neurologist and had MRI's and EEG's to find that I was indeed having seizures. We had no idea at that time what had caused them and it is very common for an epileptic to have no idea why sometimes.

Now we will back up because my daughters symptoms, I remember those better. She was having episodes at 1 year where she would shake violently but wouldn't loose consciousness. She had 1 EEG done and we didn't catch a seizure and at this time I hadn't been diagnosed so we just went on with our life. Two years ago she started to stutter. However I was told by speech therapists that it is normal for children to have fluency issues. I was not informed that if the fluency issues start after 6 and last longer than six months that the child should see a neurologist. Well it has been going on for 2 years off and on. One day she will talk fine the next we can't understand her. Then a year ago she started having headaches and the primary care provider told me that it is common for children at this age to start complaining about everything because they are becoming more and more aware of their bodies so again we dismissed it. A month ago she started having headaches everyday and at this time I looked at my husband and said something is wrong, she needs to see a neurologist. Just two short days after saying that she is in the emergency room for migraines and possible seizure activity.

Looking back my parents recall that I did the same things that my daughter does but never thought twice about it. So it took 29 years for me to get diagnosed and possibly 8 years for my daughter to get diagnosed because we didn't know all of the symptoms and neither did the doctors and speech pathologists. I don't blame them because even if you do know sometimes it is hard to put two and two together but this is why I tell our story and I am encouraging others to do the same.

Do you or someone you know have epilepsy? Feel free to share your story.

Here is a short video where they discuss the types of seizures and what you might see when a person is having them.

 
Thanks for reading Steph! Knowledge is power and if we are able to spread the knowledge then more people can get properly diagnosed sooner and be able to live seizure free with the proper care.

Did you know?

1. Epilepsy is the third most common neurological disorder in the US after Alzheimer's and stroke according to the Epilepsy Foundation of America.

2. Epilepsy and seizures affect 3 million Americans of all ages. That's more than the entire population of most large cities including Philadelphia or Chicago. It’s also DOUBLE the number of people known to be affected by autism.

3. Epilepsy affects 50 million people worldwide. That's more people than were living with HIV/AIDS in 2008 according to UNAIDS.

4. 200,000 new cases are diagnosed in the US each year. That’s about the same number of people who are diagnosed with breast cancer each year. (A reason I want to make purple as big as pink)

5. According to the Epilepsy Foundation of America, about the same number of people die from seizures as die from breast cancer. (Another reason I think purple needs to be as big as pink)

6. More than 20 percent of the 200,000 new cases diagnosed each year are children under the age of 15.

7. Every two minutes someone is diagnosed with epilepsy in the US.

8. In 70 percent of the cases diagnosed, no known cause is found. Yep you read that right, 70 percent.

9. There are over 40 different types of seizures. Not all of them involve convulsions.

10. The mortality rate is 2 to 3 times higher among people with epilepsy. Oh yeah, and the risk of sudden death is (brace yourself) 24 times greater. (This scares me not as someone with epilepsy but as a mother of someone with epilepsy)

So don’t be surprised if you know someone with epilepsy considering these numbers. And think about these stats the next time you see an ad for breast cancer awareness.

These statistics are available via the Epilepsy Foundation of America and UNAID, WHO and
NINDS.
 
In my mid-twenties, I was walking down the road with my boyfriend one evening, to catch a bus to his work's Christmas party. Without any warning, something very strange happened inside my head. It was as though the world had become a TV set and suddenly someone else had grabbed the remote and flicked through thirty channels inside a minute. I saw and heard snatches of scenarios from places and events I wasn't anywhere near, but through my eyes and ears. It was terrifying but I put it down to stress and kept walking. I didn't even mention it to my boyfriend.

After it had happened a couple of times I went to my doctor. He gave me a provisional diagnosis of temporal lobe epilepsy on the spot, prescribed anti-seizure medication and put me on the six month waiting list to see a neurologist. "Don't worry" he smiled, "It's a long time to wait for confirmation but if it's anything more serious like a brain tumour, you'll develop more symptoms and we can bump you up the waiting list."

Over the next few months the seizures continued, with my GP regularly increasing the dose of my medication to calm them down. By the time I reached the neurologist I was on 1.2 grammes a day of the drug (bearing in mind that this medication is usually prescribed in milligrames). I could barely string two words together - the side-effects of the medication were easily more disabling than the seizures. I had an EEG and the neurologist confirmed epilepsy. He told me that he wasn't bothered about the side-effects of the drug as I would eventually become resistant to them. I asked if this would be before or after I'd lost my job, but he just said that they'd try to wean me off the drugs after three years, there was nothing more he could do, and sent me on my way.

For three and a half years I walked around in a drug-induced twilight state. Whilst the drug damped down the seizures, they did nothing for the effects of the epilepsy between the episodes which included claustrophobia, agoraphobia, paranoia and jamais vu - sometimes simultaneously.

I was actually very lucky. After three and a half years I approached my doctor about coming off the drugs but he refused to discuss this, telling me that epilepsy is incurable and that I would always have seizures without the drugs. I decided to do it for myself and gradually stopped taking the tablets over six months. I've been seizure free ever since - over twenty years - and have given up trying to talk to my doctor about the chances of recurrence or what (if anything) I can do to prevent it.
 
Oh your story makes me sad Bitsy. You should not have had to be, basically in a coma in order to be seizure free. We are lucky that there has been great strides in medicine and there are drugs that don't sedate us the was they have in the past. I am glad that you are able to be seizure free now with out medication. I hope that continues for you.
 
Thanks Christen. It's worth thinking about now and again, so that I remember to count my blessings. Compared to many, I had a relatively brief encounter with epilepsy. Although nobody can guarantee that it will never surface again, I need to remember how lucky I am.
 
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