I am about to leave home for the 7 days Video Telemetry as a final part of my pre-surgical assessment. I will have very limited internet access (if any of you have visited Queens Square National Hospital for Neurology and Neurosurgery you will know what I mean ;) ).
If you have any queries or any suggestions please do not hesitate to contact me, I will make it up for you on this blog when I will come back.
This is what I'll be watching for next 7 days:
Still, I will appreciate very much any effort to make this blog more popular and helpful,
Hi, can I ask you, visiting this blog to help me to build the audience please, in any way you can, such as facebook, twitter etc. link, sharing on your blog, website, google+ ? It is not too helpful or useful to post info if nobody is reading it and it may be helpful for many people you may know... I will appreciate any kind of help and also please don't hesitate to contact me if you need any advice regarding the subject so I can post relevant info for you and other people struggling with similar problems. It may take you few seconds to help hundreds of people! Many thanks, *N.R.
Below there is a "short" list of famous people, who have or had epilepsy. Look how much they achieved in their lives. Any of us can do that as well. It cannot stop us from our plans, our lives, our dreams, our life targets. No matter how difficult is yours to treat and control...Don't give up!
Hi. I just had a phone call from The NHNN that I'm going for 7 days VT as a part of pre-operative assessment. My chance for undergoing lobectomy is still 50/50 and so far I've had one VT, MEG, MRI, language fMRI and after upcoming VT I will have intracranial EEG and after that, MDT will decide (well, neurosurgeon will decide) whether lobectomy can be performed.
As I have refractory TLE (changed medical treatment over 20 times due to poor seizure control) and my current poor seizure control despite large doses of three different medications, invasive treatment seems to be the only chance to improve seizure control. It would be either a brain surgery (temporal lobectomy) or VNS (which is in cases like mine not really effective treatment as figures say less than 40% of VNS patients with such a complex epilepsy achieved better seizure control.
I should mention that I have been rejected once, about 3 years ago in Oxford hospital after only two tests - the VT (no seizures captured) and MRI. That was a little bit ignorant...
Please wish me luck (with my patience during the VT ;) ) and MDT's decision. Positive decision.! If any of you have been rejected or will be don't give up!!! Never! Almost every day I can read about new treatment methods so it is just a matter of time, when epilepsy patients can be CURED!...
Epilepsy diary is a very helpful and important tool to manage your treatment and seizures. You can easily provide detailed information about your current condition to your neurologist to decide what to do if things go wrong for example.
There are several methods and ways to help you with the diary:
writing down as much info straight after seizures (symptoms, duration etc.) on your computer or simply - even on a piece of paper, calendar and so on...
using mobile phone applications (there are tons of them) - there are links below for the one I'm using developed by Epilepsy Society (it's free)
using dedicated devices such as 'epilepsy watch' you can easily buy on Amazon. It's quite expensive though with limited features, aimed mainly to detect seizures among people with very severe epilepsy
Apart from my posts, I'd like to listen to your experience if you wish to share it with me or/and on this blog with your permission. That would create wider look on the subject and help others.
If you have any questions regarding epilepsy please do not hesitate to ask. I'm spending a lot of time on neurosciences subject - especially epilepsy, research, current treatment methods and so on and I'll be happy to help you.
Temporal Lobe Epilepsy seizures mostly are partial ones. Either - simple (without affecting awareness/consciousness) and complex - affecting awareness - in the other words - being "switched off" for up to few minutes.
In my case, abnormal electrical activity is mostly located in the right fronto-temporal lobe where language and memory areas most people have and it causes a simple seizures lasting for up to 30mins where THE ONLY symptom is total speech arrest. I'm fully aware what's happening around me but unable to understand what people are telling me and unable respond.
I had one today, at work, where a proper communication is a priority. Now, since my managers know that I have epilepsy they see it as described in a previous post - EPILEPSY=CONVULSIVE GENERALIZED SEIZURES.....Wrong! I had a very unpleasant time because of that as they think I'm making it up without any other symptoms...
Finally, after taking 10mg of Midazolam I got better but I had to sign (for some reason) - a disciplinary note... This is how our educated 21st century civilized society are treating disabled people.
My question is - what has to happen to "so called" healthy people will start understanding, not just knowing the fact of illness or disability - not just epilepsy?...still keep looking for the answer.
Anyway, as I said, things like that happen, but we cannot afford to give up. Monday morning will be a really tough time for the manager who told me to sign this paper and - honestly - I can't wait this moment ;)
