A very brief medical history...
This timeline I am hoping gives an insight into my medical history prior and after my retrograde amnesia.
Thanks for reading x
2011 - 2014
- Diagnosed as a pediatric at The
Evelina Clinic St Thomas with ‘temporal frontal lobe epilepsy’ and treatment
began. After trialing and failing multiple anti-consultants I finally adjusted
to one that settled the seizures slightly.
- Drug One: Oxcarbazepine – suffered side effect of an allergic reaction: skin rash.
- Drug Two: Topiramate – struck with the common side effect of major weight loss (which I couldn’t afford to loose!)
- Drug Three: Levetiracetam (Keppra) – The medication I was to stay on until I transferred to adult neurology, this has the least noticeable side effect howbeit once dosage upped I had major anger outburst and depression.
- Drug Four: Lamotrigine – My memory started to fail me once I was placed on this drug.
- All medication was removed.
2015
- - I decided transfer to the National Hospital for Neurology and
Neurosurgery (Queens Square) to gain adult neurology. By this time depression
had started to set in badly due to the Keppra and so it was decided that this
was to be put on a low dosage and a new drug should be added.
2016 - 2017
- - My amnesia
occurred. I was hospitalised for the duration of six days and immediately taken
of Lamotrigine. I underwent an intensive telemetry EEG, psychological and
psychiatric evaluation (both of which I passed with the ‘expected average’
result.
- - I saw my
neurologist six weeks after my hospitalisation and she was sure that the memory
would return.
- - I then decided
to see a different neurologist and he me to see a psychologist.
- - I saw the
psychologist on two occasions. On the first occasion he referred me to a
hypnotherapist who felt his specialism could cause more harm that good. On the second occasion the psychologist
informed me I should seek a second medical opinion as he felt there were no underlying
psychological issues and I was discharged.
2018
- I found a completely new neurologist to help
me with the basis that this was to be a second opinion. At the time however I did
not make this clear and he consulted with my previous neurologist. A new diagnosis came to light 'Psychogenic seizures.'
27th March 2019
I decided to take the plunge and book a private appointment. After researching millions of neurologists I finally settled for one who was close to home. Today was the first time I met with her, along with my mum. This neurologist had none of my previous medical notes on hand which at first I was really weary of however it ended up being a blessing in disguise. We gave a timeline of my medical history from the age of 11 right up until today. I took many positives from this appointment. She assured me that she will be giving an independent opinion, repeating tests (MRI, blood etc), I will be having a home EEG and finally she is referring me to a professor who's sole research is based on memory. For the first time in a long time, I feel as if somebody is biting the bullet and taking action for me. This again its going to be a long process but one that I am feeling positive about.
18th June 2019
I have recently been doing my own research into alternative treatments. I have begun a new diet regime, supplements, yoga, meditation and acupuncture. Some progress has been made but seizures are still prevalent in my life.
I am still waiting to hear back from the hospital in regards to my home EEG testing and also another appointment to see the neurologist to see if there is any new insight she has to offer.
From my memory point of view - I am considering speaking with a counselor as I do not think I have fully processed the extent of the amnesia.
I decided to take the plunge and book a private appointment. After researching millions of neurologists I finally settled for one who was close to home. Today was the first time I met with her, along with my mum. This neurologist had none of my previous medical notes on hand which at first I was really weary of however it ended up being a blessing in disguise. We gave a timeline of my medical history from the age of 11 right up until today. I took many positives from this appointment. She assured me that she will be giving an independent opinion, repeating tests (MRI, blood etc), I will be having a home EEG and finally she is referring me to a professor who's sole research is based on memory. For the first time in a long time, I feel as if somebody is biting the bullet and taking action for me. This again its going to be a long process but one that I am feeling positive about.
18th June 2019
I had an MRI today. It is ridiculous how worried I become when I have one of these. I know that they usually come back ‘as expected’ but that still doesn’t stop you fretting over all the other possible outcomes that could have developed without your knowing. That is the brilliant thing about MRI’s, they show everything that is impossible to see from the outside.
I was allowed to look at my images after, now I’m no radiographer but that looked like a pretty healthy brain to me! I’m hoping to have my results back at my neurology appointment on the 25th August and have an EEG home test booked in for the 9th July. My new neurologist really has got her arse in gear!
9th July - 12th July
I am currently writing this from the comfort of my own home whilst wearing an ambulatory electroencephalogram (EEG - basically monitoring my brain waves). This is monitoring me 24 hours a day (other than when I go for a wee or change!). They are amazing pieces of technology that can detect the type of epilepsy you have via your brainwaves. The trouble I am facing is that I am yet to seizure whilst wearing this. I have tried every trick in the book to bring one on but nothing is working. I'm just hoping some abnormal activity has been caught without my knowing to hopefully have a path to treatment... That is always the way isn't it, when you want a seizure, it never happens. I feel this may be my last resort as I have no idea where the neurologist will go from here if no activity is detected.....
September 2019 - January 20209th July - 12th July
I am currently writing this from the comfort of my own home whilst wearing an ambulatory electroencephalogram (EEG - basically monitoring my brain waves). This is monitoring me 24 hours a day (other than when I go for a wee or change!). They are amazing pieces of technology that can detect the type of epilepsy you have via your brainwaves. The trouble I am facing is that I am yet to seizure whilst wearing this. I have tried every trick in the book to bring one on but nothing is working. I'm just hoping some abnormal activity has been caught without my knowing to hopefully have a path to treatment... That is always the way isn't it, when you want a seizure, it never happens. I feel this may be my last resort as I have no idea where the neurologist will go from here if no activity is detected.....
I have recently been doing my own research into alternative treatments. I have begun a new diet regime, supplements, yoga, meditation and acupuncture. Some progress has been made but seizures are still prevalent in my life.
I am still waiting to hear back from the hospital in regards to my home EEG testing and also another appointment to see the neurologist to see if there is any new insight she has to offer.
From my memory point of view - I am considering speaking with a counselor as I do not think I have fully processed the extent of the amnesia.
June 2020
I have my next appointment (via telephone due to coronavirus!) on the 29th June. Updates to follow... Stay safe...x
- Apologies for the late update! To be honest the appointment was pretty wishy washy. It lasted 15 minutes and I am being shipped of to be investigated under a new memory specialist. Unsure when this appointment will be due to the pandemic...x
Jess x
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