Diagnosed Twice?

epilepsyHello readers…

Could it be possible?

One could grow out of something and then be diagnosed again?

Yes of course, so let me start at the beginning.

I was only 5 years old and having sharp pains in my eyes but the doctors didn’t know why and then having sharp pains in my head and still nobody could find an answer. Trotting into year two of Infant school the symptoms carried on, but as a child you cannot express things well, but i remember it as a dizzy, drowsy spell, but at the time didn’t know how explain it to my parents. My teachers i remember the school nurse thinking i was acting up and pining for attention and she wasn’t sympathetic or nice to me at all, even if the pain made me cry she said to my mum i am just being silly. One day the unthinkable happened, i had a very bad seizure and collapsed; an ambulance took me and my father to a unit in the hospital as my mum had told me i had shook so much that my body went into a deep coma. During the time i wouldn’t come round and lost so much weight that i had to be on the drip, it had helped a little and i woke up.  I can remember doctors everywhere and nurses constantly checking on my in the unit, however i went back into a coma and suffered more seizures and was eventually given a room on my own  I remember waking up and needles were poking all over me and i didn’t feel very comfortable.

I was put on steroids because it was now a matter of life and death, and water from birth was found on my brain and they were blunt with my parents and my father stayed with me over night to care for me as i needed my drip with me, even in the bath.  I had eventually put on weight as i was given steroids, after a while i didn’t need the needles and drip, i stayed in hospital for nearly three month; missed loads of school, hospital wasn’t too bad, as many people came to visit me and play with me and the nurses were very kind. It was tough going back to school as i was already bullied for being mixed race, which i will discuss in a different blog and also now being fat had made it even worse, but my parents were glad i was alive, especially my father, the only news that was devastating was i was diagnosed from age seven with Temporal Lobe Epilepsy which is seizures that start  in the temporal lobe and are very Chronic.

Temporal Lobe Epilepsy | Epilepsy Foundation

Not many people understood this, but i got help for my migraines as a child and got seen regularly, but by the time i was in year three, i only got pain in my head and no seizures but to be certain the nuerologists did not take me off the list until i was eleven as they wanted to see if seizures would erupt after my dad died, but luckily they didn’t.
Years passed by and i was perfectly fine, the only thing was concentration which i was told i would suffer with after having the seizures. Confidence was not fantastic as i was severely bullied about my weight and my health condition in the past.
At age 17 I got married after i’d fallen for a family friend, and i lived with him and after a year i got sharp pains in my eyes and my head again and this time was unusual, i was diagnosed with high blood pressure and the nurse Practitioner was very worried about me and said that it is hardly usual and asked me if i had problems; obviously i didn’t want to tell her about problems in my relationship or at college so i said no i am absolutely fine .
I maybe should have gotten help if i am honest, the relationship was terrible which i will discuss in a different blog….
It was very stressful and being in college was too so it was a hard balance.
I had enough at one time in my relationship so i went on holiday with my mum for a break and i was in the beach and having a good time in Yemen.
However after i finished my beach day from 7 am to 8 pm i was really tired and said i just want to sleep.
My mum woke me up and started to cry;  she took me to hospital right away, i had bitten my tongue in my sleep and i felt dreadful, like i had bumped my head, but my cousin who was in the same room said i was only shaking, but vigorously.
After the consultation they diagnosed me and just said epilepsy, but didn’t know the type and then i just went back to the UK…
I wanted to forget, but i had medication from Yemen and one of the side effects was it was producing milk to come out of my breasts it was so funny i was applying moisturizer and it squirted into my ex husband’s eye and that rang alarm bells as the seizures were well controlled, but when we went to accident and emergency as he was very worried and so was I to be quite frank i was shocked.
Upon arrival they said i must go to my GP and stop taking the tablets; my body thinks i have had a baby and if there is no baby then it is milk produced from hormones which may cause breast cancer.
I was hoping it was just a one off, but unfortunately i needed to have the works… i had flash tests and it wasn’t flashing lights, it wasn’t anything wrong in the MRI scan which tests the structure of your brain; the only other option was an EEG…
This came out positive, but rather than temporal lobe epilepsy it came out with no known cause and the medical term used today is Idiopathic Generalized epilepsy.
I was 18 and thought “No this hasn’t happened i am dreaming.”
I will talk to you more about my 11 year journey with Epilepsy….
The best thing is to stay positive it makes seizures worse…
Here are some useful links i will include for you to have a look at …
Always see your nurses for epilepsy and see the neurologist every six months, i always see my nurses every 6-8 weeks if i am anxious or worried as they help you so much, but you must tell them everything that is wrong, i began to keep a diary and noticed things which i will explain in my next blog .
Interesting facts of Epilepsy…
*There are over 40 different types.
*Some can be controlled through diet
*Some people can lose bladder control and others bite their tongues
*Some people can have several seizures a day and other people 1-2 a week or month
*Epilepsy over active electrons in your brain, everyone has it, but epilepsy is when people have over electrical activity in the brain
*Epilepsy can requite surgery to stop seizures
*most Anti epileptic drugs help
*over a quarter million people in the UK suffer with this medical condition alone
Take a look at these links and please share this to help those who suffer with epilepsy!

Epilepsy Action | Epilepsy information and advice


Most of them maybe on twitter and facebook…. xxx


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