For most of my life I really didn't understand my disorder. I still don't completely and as I do my research on it I find out so many things that I just wasn't aware of. Me overcoming the near death experiences at the time didn't seem like a big deal. But you know it was. Not everyone can say the cheated death in a way I did. How I see it is I was given the chance to send a message and I am doing my best to do just that.
I want to start off with my diagnoses. Since I was a baby this is the story I have been told and understand.
When I was 10 months I was just like any other baby curious and playful and at that time I was seizure free. But my mom put me down for a nap and the story I was told was this: I was playing around in my crib reaching for everything around and got a hold of dry cleaning bag. Some how I managed to wrap it around myself and suffocated. When I was found I was not breathing and immediately rushed to the hospital. I was revived somewhere between there home I am not sure but I went long enough with out air to cause my brain to swell. The doctors at the time believed I was not going to make it and prepared my family for my death. By the grace of God I survived. What saved me is I still had a bit of soft spot left on my head which allowed my brain to swell without crushing it. I was released and I'm not sure how long after my release I began to seize which put me back in the hospital. Apparently they did every test they could to figure out what could be causing it. My mom said I had 5 IV's in me and looked oh I can only imagine how I looked. They found I had a dead spot in my brain due to the the accident which in return was causing me to seize. I had the full Grand mal seizures so it was a scary sight for my family. They put me on my first of many meds to try to control them and released me again but I know for many months I spent a lot of time in and out of the hospital and I can only imagine what my family had to go through watching me helplessly as I seized. That is how I was diagnosed.
Scary yes. Growing up with epilepsy to be honest I really didn't notice. I thought all the test, doctor visits , blood work and taking medication was normal. I wasn't even aware I had seizures until about the age of 10 and then I began to fear them because I remembered them. I learned quickly some of the triggers that would cause me to seize. Here are a few common triggers. Not all are my triggers but a good portion are.
* Specific time of day or night
* Sleep deprivation – overtired, not sleeping well, not getting enough sleep ~ For me this is a big one. This is why I must have good sleep.
* At times of fevers or other illnesses
* Flashing bright lights or patterns ~ A HUGE one for me. I will hide my face a lot of times and shield my eyes. Some patterns like stripes will cause me to seize too so you will catch me looking away from them as well. Sucks when it come to haunted houses and some amusement park ride
* Alcohol or drug use ~ Yes another one why I don't drink to much and well I took so many meds growing up never was interested in trying or doing drugs.
* Stress ~ Yes a big on me as well. That is why exercise I believe helps because when I do feel stress I have a good lift and feel so much better.
* Associated with menstrual cycle (women) or other hormonal changes ~ Yes I had a lot in my teenaged years and when I got Pregnant.
* Not eating well, low blood sugar ~ Yes but not as big as a trigger as some of the others.
* Specific foods, excess caffeine or other products that may aggravate seizures
* Use of certain medications
One of the most disappointing moments in growing up was finding out when I was 15 and half that I could not drive. I was so excited telling everyone what car I wanted and where we would go and just to have that freedom every teenager wanted. Then my mother had to sit me down and tell me that since I was not controlled I could not drive. I at the time I felt it was unfair and was mad of course. It sucked for me I had to rely on my friends, parents or even my little (yes little) brother to take me places. Finally at 19 I was able to get my DL and have my freedom, but two years later I found out just why it was so important for me to be controlled before I got my DL.
I was 21 and a new mother. I was driving to Oklahoma and following my husband. I had my oldest 3 months old in the back seat. I somewhere between the Texas border and Stringtown, OK when I came to I was in a full blown seizure. Right side of my body fully locked up and my right foot pressing down on the gas petal. From what vision I had (I see a blinking aura when I seize) I saw my husband's car come closer and closer. Normally I don't fight a seizure but this one I fought with all my heart. I ended up some how using my left side which was locked up to push the steering wheel to the right. Car full speed and was just praying that my oldest would survive this pasted my husbands car in the grass. My car ended up on the left two wheels and I swore we were going to flip I really did but we slammed back down knocking my foot off the gas petal and causing my car to finally coast to a stop. My seizure ended and that was the first and only time I was aware of the entire seizure. I looked in the back seat and Ana was just sleeping, and my husband ran up to the car pretty freaked out I remember looking at him and falling over finally passing out. When I woke EMS was there. I went to the hospital to get checked out and found out through that hell I went through I was pregnant again with my youngest. I did after that seizure give up my DL for a bit and still won't drive long distances out of fear. And the only reason I let that fear win is because it's not just my life at hand when I drive but others who are out on the road.
The reason I had that seizure was mostly due to hormone changes because I was pregnant along with the trees acting as strobe lights and a bit of stress of driving. None the less it was scary and I am thankful to be a live and that no one else was hurt.
Some of the common things I had to go through growing up with epilepsy were:
~When I was first diagnosed I was put on a medication that caused my baby teeth to rot. Because of that I had to have silver caps put on my teeth. Now I thought I was special for this never understanding why I had to have them, but on a plus side since they were "special" teeth when the tooth fairy came I got extra for the silver teeth
~I was unaware of my disorder up until the age of 10 I would say. Yes I thought it was normal for every kid to go to the doctor monthly get blood work done and have things glued to your head and take medication. I never really remembered having a seizure and never understood what was happening until I was older.
~I was not able to get my DL until I was 19 and like I stated earlier that was not something I was happy about. In the state of Oklahoma I had to go 3 years without a seizure before I was allowed to drive. Since I have gotten it I have had to give up once due to my seizures.
~The only seizure I can remember having at school was my freshman year. I was in speech class and yep it was embarrassing and I think the first time my class mates really saw a seizure as well. I only had one person that I can remember poke fun of me due to my seizures.
~I have had seizures on amusement park rides , in a grocery store, while driving, in my sleep, at work, while mowing the lawn and at school. Those are all the places I can remember other than my home.
~Hormone changes caused me to seize pretty bad. As a teenager it was tough because I was having a lot of seizures due to changes. When I was pregnant I had many seizures as well especially with my second pregnancy. I Never was taken off my meds during pregnancy either because without my meds I would most defiantly seize.
~I often get asked, "Do you ever wish you didn't have seizures" The answer is no. I never seen my seizures as burden but as a part of me. No they are not fun and no I do not like having them and all the work maintenance that comes with having the disorder. But they are my struggle that gave me hope, faith, strength and helped mold me into who I am today.
Now my biggest factor and struggle with my epilepsy is the fear of coming off the current medication I am on and have been on for 19 years due to the fact I have become immune to it and I have developed many of the rare serious side effects of te medication which is causing overall issues with me health. I am not sure what medication they will switch me to and I am not sure how they will do the switch. I have no idea how my body will take to coming off the meds I have been on and if the new meds will work. The possibility of me having a seizure is high and I will be honest that scares me as well. This is all a big change and me remembering how many times I jumped from one medication to another as a teenager until I found the current medication that controlled me was complete hell. I am hoping it goes smoothy and is a one time thing but it could take several tries and combinations before they find what works for me or works best for me because there is no guarantee that I will be controlled. Which brings me to the question I get asked a lot. "What do I do if you have a seizure" Well unfortunately there is nothing you can do to stop it if I got into a Grand Mal seizure, but this is what you can do to help and here is how:
*Don't Panic - Some seizures are very scary looking but the person needs you to stay calm and help them.
*Allow plenty of space- move anything out of the way they may cause injury.
*Protect from injury- if a person is standing or on something help them down to the ground if you are able.
*Loosen anything tight around the neck
*Put something soft under the head
*Turn to the side to prevent choking
*NEVER put anything in the mouth- NOTHING that can cause choking and do more harm than good
*NEVER restrain the person- You have to let the seizure ride out. I know it's painful looking but restraining the person can cause more injury.
*If the seizure last longer than 5 minutes call 911. Most the time when in a public place 911 is called anyways but for sure if at home or public place if it last more than 5 mins call 911
*After the seizure is done and over offer support and allow rest. Be prepared for lapse of memory and confusion from the person too.
Epilepsy is called a “stealth” disease, but it’s difficult to imagine how so few people can know about a disease that affects so many Here is some facts and fun facts that I found out about my research into my disorder.
*Epilepsy affects over 3 million Americans of all ages – more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined.
*In America, Epilepsy is as common as Breast Cancer, and takes as many lives.
*Almost 500 new cases of Epilepsy are diagnosed every day in the United States.
*Epilepsy affects 50,000,000 people worldwide.
*One in 100 people will develop Epilepsy.
*One in 10 people will suffer a seizure in their lifetime.
*This year another 200,000 people in the U.S. will be diagnosed with Epilepsy.
*Each year over 125,000 to 150,000 are newly diagnosed with Epilepsy.
*30% of those diagnosed are children.
*Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.
*For many soldiers suffering traumatic brain injury on the battlefield, Epilepsy will be a long-term consequence.
*In two-thirds of patients diagnosed with Epilepsy, the cause is unknown.
*In over 30% of patients, seizures cannot be controlled with treatment.
*Uncontrolled seizures may lead to brain damage and death.
*Up to 50,000 Americans die each year from seizures and related causes.
*The mortality rate among people with Epilepsy is two to three times higher than the general population.
*Risk of sudden death among those with Epilepsy is twenty-four times greater.
*Epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.
*Historically, epilepsy research has been under-funded. Each year NIH spends $30 billion of medical research, but just ½ of 1% is spent on epilepsy.
*St Valentine is the patron saint of people with epilepsy!
To End my blog over Epilepsy I found throughout history there have been suggested that many famous people have had epilepsy and millions of other people from beggars to kings. What this tells me is that just because you have a epilepsy that doesn't mean you don't have dreams and your strengths and shows me that you most definitely can achieve any dream you wish despite of the disorder. I myself prove this point as well. Here is a list of people in history who had Epilepsy
VINCENT VAN GOGH
LUDWIG VAN BEETHOVEN
JOAN OF ARC
SIR ISAAC NEWTON
Leonardo Da Vinci
Alexander the Great
Edgar Allen Poe
Thank you to the Epilepsy Foundation and other sites that helped with finding all this useful info.