In this post I share my personal epilepsy experience to explain why I’m so careful to follow epilepsy warnings on my herbal journey. Luckily I have not had any seizures for a long time now but my story explains why I don’t want to trigger them again.
I’m hoping that my story will resonate with fellow epileptics and give them comfort that they are not alone.
Before reading please note that my seizures, consequent tests and treatment were a long time ago. Things may have changed a great deal since then.
How My Seizures Began
One night in Tenerife I awoke in the middle of the night to go to the bathroom. While walking back to the bedroom I must have passed out because the next thing I knew I was waking up on the floor screaming in pain. This woke up my husband who came to my aid and led me back to the bed to lie down.
While lying there he saw that I had broken my protruding front tooth and cut my lip. I guess this is no surprise because the floors of the apartment were made of hard tiling.
My protruding tooth was a consequence of falling over when I was a very small child and hitting my face on a concrete playground. Ever since that day my two front teeth were crooked with one tooth overlapping the other and making it protrude slightly. Looking on the bright side as a result of this accident people would tell me I had a lovely smile. This was because I would smile widely to avoid seeing the protruding tooth sticking over my bottom lip.
The dentist in Tenerife gave me the choice of having the broken tooth fixed or taking the opportunity to cap both front teeth. I remember the dental nurse saying to me that this “could be my God given opportunity to now have straight teeth.” Thinking about this I chose the caps and straight front teeth option.
This was the silver lining with regards to my epilepsy because I much prefer the look of my straight front teeth, and the big smile still remains!
What Happens When I Have a Seizure
Firstly I sit up howling like a wolf and then I collapse. My eyes roll into the back of my head and all that can be seen are the whites of my eyes. I guess that must be pretty scary for the person watching.
Then I begin to fit/convulse for 10-15 minutes.When I awake all I remember is the weirdest feeling. The best way I can describe it is to say that my head feels like it is in the spin cycle of a washing machine.
Some say that they have no memory at all of their seizures.
Problems with Speech
When I awake from a seizure and someone tries to talk to me it sounds like they are talking gobbledegook. In return when I try to talk to anyone nothing I say makes sense to them either. Despite the fact that in my own head what I am saying is clear.
Biting My Tongue
I bite my tongue and leave teeth marks. Sometimes the bites are so hard that they draw blood.
A Metal Taste in the Mouth
This drawn blood leaves me with a metal taste in my mouth because of blood’s iron content.
Burst Blood Vessels in the Neck
One time looking in a mirror I saw that a seizure gave me two very dark and ugly marks on my neck. This was because the violence of the seizure caused my blood vessels to burst. Afterwards I just wanted to hide away and let them disappear.
Loss of Bladder Control
The most embarrassing occasions for me were when I couldn’t control my bladder and wee myself. Fortunately this did not happen very often.
Uncontrollable Jerking and Shaking of the Body
Waking on another occasion I saw that I had fallen at the top of the stairs. Its lucky that I didn’t fall down them! Looking down at my right hand I saw a burn mark because convulsing on the carpet had given me a carpet burn!
Confusion and Extreme Tiredness
For at least a week following a seizure I experience extreme tiredness and this makes every little thing I try to do feel like a huge effort.
How to Deal with an Epileptic Seizure
The old wife’s tale about putting something into a persons mouth when they are fitting (like a wooden spoon) is wrong. All that happens if you do this is that you can potentially hurt the persons mouth and teeth. To help them just turn the patient onto their side and put some sort of cushioning under their head.
For full details of first aid for someone having a seizure take a look at the following by The British Red Cross;
Testing for Epilepsy
To diagnose the epilepsy an electroencephalogram (EEG) is used because this checks for unusual activity in the brain. This is done by attaching small sensors to the scalp. They look like round plastic discs with wire coming out of them. When they were placed on my head I remember thinking that I must look like I should be in some kind of Syfy movie.
During the hospital tests for the epilepsy you look at a lot of flashing lights which test for photosensitive epilepsy. The tests were able to rule out photosensitivity as a trigger for me. Alas pinpointing the actual cause of my epilepsy never came to fruition. In fact most people’s cause of their epilepsy is unknown.
For me personally concluding that I had epilepsy was a relief. My other fear was that my seizures were due to the possibility of my cancer returning. Fortunately this was not the case because if it was the seizures would indicate that cancer was in the brain. I’m sure that not many people would feel relief at being informed that they are epileptic but I sure was!
Timing of Seizures
My epileptic seizures occurred approximately every six weeks. When I knew it was nearing the time for the next one I wouldn’t leave the house in case I collapsed in public and wet myself.
A strange feeling would occur a few seconds before each seizure began. It was a kind of a woozy sensation. This feeling seemed like a warning to tell me to lie or sit down ready for the seizure.
I believe that my seizures were just daytime ones but I cannot be a hundred percent sure. Sometimes I would find teeth marks on my tongue when I awoke along with a little blood on my pillow.
Finding the correct strength of epilepsy drugs took some time. The initial drug they put me on made me feel dizzy and nauseous all of the time. Moving onto a drug called Epilim Chrono Controlled Release Tablets (sodium valporate) was better for me.
Sodium valporate works by stabilising electrical activity in the brain. I was on a pretty high dosage of this drug to begin with of 1600 mg per day.
Impacts of Epilepsy
Epilepsy definitely effects day to day life.
Personally I was unable to work for a while until the doctors found the right medication to control the seizures. It was a real struggle to do anything for a week or so after each seizure.
Not being able to drive for a year after your last seizure can really restrict life too because nowadays we rely so much on our cars.
Other things to keep in mind if you have epilepsy;
- You musn’t swim, have a bath, or use a jacuzzi alone because a seizure may make you drown.
- No diving due to the water pressure.
- Watch out for games which give you electric shocks because the shock you get if you lose may bring on an episode.
- Look for warnings on certain exercise equipment which gives you electronic pulses because these too could bring on a seizure.
- Do not use a sauna or steam room alone.
The above are just a few things to consider while you are still having seizures.
For further information about epilepsy take a look at The Epilepsy Society website;
Wishing you all long life and happiness.
If you have enjoyed my story please do not hesitate to share with anyone you think it may help.
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