Where has the time gone? I was later life diagnosed with epilepsy back in 2012 with partial seizures. I had gone for years and years without knowing. I’ve previously posted my journey at the run up to diagnosis before, but I hadn’t really spoken about how it’s changed and why more awareness is needed. Today I want to explain my kind of epilepsy partial seizures. Many people have no idea there is more than just one kind, and how it feels. I get a combination of complex partial seizures, simple partial seizures and absences.
Struggled with diagnosis
I’ve made it no secret I was didn’t cope well with diagnosis. I became very depressed. It was because I had gone so long with people not taking me seriously, I always remember someone I once knew saying there was always something wrong with me. The thing is, there were lots of things, but it was all epilepsy
No guidance anywhere
There was nothing on the internet about partial seizures, but everything you could possibly want to find about grand mals. Until I was diagnosed I hadn’t a clue there was any more to epilepsy.
What happens with a partial seizure?
Don’t you have fits? No. Are you photosensitive? No. What does it feel likes? Partial seizures are scary. For some it’s extreme fear (what I get) or extreme joy (definitely don’t get that!!!). They last maybe 3 – 30 seconds then they are over, but I can only describe it has falling down black hole and trying desperately to get out whilst a monster is chasing you.
➡️Aura – this is like a warning something is a out to happen. It’s a weird unusual feeling
➡️Rising feeling – this runs up through me from my tummy
➡️Unusual smells or tastes – I have had metal taste before but not always
➡️Deja vu – is normally the next stage. This can be with regard to surroundings, if someone is talking it can start to feel like de ja vu
➡️ Feeling – an intense feeling of fear or joy… I get the fear as previously mention
➡️ Movements – I used to have hand twitching, lip smacking and or swallowing a lot. Now I am motionless or fidgety
➡️ Absense – during absences I will look blank
What are the seizure triggers?
They vary and recently my nocturnal partial seizures have increased. Its very scary…so what are my triggers?
➡️Stress
➡️Anxiety
➡️Lack of sleep
Taking care of yourself is so important, otherwise epilepsy can really impact more than it needs to. With all of the above, it honestly varies from one person to another. The main point of this post is to bring awareness, so if you feel like these are symptoms to what you’ve been getting, please seek medical advise.
Michele Finch says
How lovely to read your post! I’m a bit older than you, 60, had Tonic Clonic Epilepsy since I was 11 – very well controlled until the last 8-9 years when I started the Menopause and a nasty divorce!
If you look up Michele Haining Finch or just Michele Finch – I was a very successful Businesswoman and wouldn’t let Epilepsy get me down. Stress is my main trigger – but so was ovulation. I thought that once the Menopause was over I might have a chance to lead a more normal life again 👍 Wrong – everything has become worse – I had to surrender my Driving Licence and move from my lovely house in the country. A nasty divorce from an alcoholic hasn’t helped!
Cath Mcintyre says
Hi there. I have focal aware parial seizures, diagnosed 18 months ago but struggled with for 6 years. Its like being sent to hell in a washing machine every month. Mine are triggered by hormones; oestrogen vs progesterone. Ive set up a group…Catamenial epilepsy uk: sharing and support group cause theres loads of ladiez that are struggling out there. Some have been diagnosed, lots havent…a lot of gps are clueless about this massive issue. It affects your confidence and self esteem, your mental health and depression, your physical and mental energy; its exhausting, frightening and lonely.
Cath Mcintyre says
Hi Michelle…I’m so sorry to hear whats happened to you? Have you got support from family and friends? Ive just commented too and thought that perhaps youd be interested in joining our Facebook group…Catamenial epilepsy uk: sharing and support. Its fairly new but it’s growing slowly. We support one another in this fairly lonely invisible illness…i wouldn’t wish it on anyone. Its hard to be positive but the group tries to support one another which helps. Give it a think. Cathx