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!...
Regards
N.R.
Wednesday, 27 March 2013
Sunday, 24 March 2013
Your Personal Epilepsy Diary as the best tool to improve your treatment
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:
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
Epilepsy Society App:
Saturday, 23 March 2013
Share your experience. Ask questions.
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.
Kind regards
*N.R.
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.
Kind regards
*N.R.
Friday, 22 March 2013
Speech Arrest Seizures
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 ;)
*NR
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 ;)
*NR
Epilepsy vs. Religion - "Stigma" problem and lack of knowledge consequences
Knowledge of, perceptions of, and attitudes toward epilepsy among university students in Kuwait:
The aim of this study was to explore, using a self-administered questionnaire, university students' knowledge of, perceptions of, and attitudes toward epilepsy. Approximately 1.7% considered epilepsy a contagious disease, and 10.5%, a form of insanity. About 25 and 34% of students thought that epilepsy is caused by an evil spirit and the evil eye, respectively, and 17.4% thought epilepsy is punishment from God. About 8% believed patients with epilepsy should not marry, and 12.5% thought they should not have children. Similarly, 11.7% thought patients with epilepsy cannot think or judge like people without epilepsy, and 26.2% would not employ someone with epilepsy in a clerical job. Approximately 56% objected to marrying someone with epilepsy, and 12.5% would not allow their child to play with a child with epilepsy. In conclusion, university students in Kuwait have a vague knowledge of the causes of epilepsy. Misconceptions about and negative attitudes toward epilepsy are unexpectedly high among these university students.
Source:www.ncbi.nlm.nih.gov
...and more of it:
This is scary and sad especially among people with epilepsy. Luckily, in so called "western civilization" the situation is JUST a little bit better but this "stigma problem" still remains. We are being treating "better" just because of the Law but not far in the past:
Just wondering...is it going to change? It all comes from lack of knowledge or blinding by religious beliefs and neither me, nor you, nor governments can or even worse - want to do something about it. Isn't it time, at last to treat us equally? Think about that.
*NR
The aim of this study was to explore, using a self-administered questionnaire, university students' knowledge of, perceptions of, and attitudes toward epilepsy. Approximately 1.7% considered epilepsy a contagious disease, and 10.5%, a form of insanity. About 25 and 34% of students thought that epilepsy is caused by an evil spirit and the evil eye, respectively, and 17.4% thought epilepsy is punishment from God. About 8% believed patients with epilepsy should not marry, and 12.5% thought they should not have children. Similarly, 11.7% thought patients with epilepsy cannot think or judge like people without epilepsy, and 26.2% would not employ someone with epilepsy in a clerical job. Approximately 56% objected to marrying someone with epilepsy, and 12.5% would not allow their child to play with a child with epilepsy. In conclusion, university students in Kuwait have a vague knowledge of the causes of epilepsy. Misconceptions about and negative attitudes toward epilepsy are unexpectedly high among these university students.
Source:www.ncbi.nlm.nih.gov
...and more of it:
- In Cameroon it is believed that people with epilepsy are inhabited by the devil. This does not mean that they are seen as evil, but that evil invades them and causes them to convulse from time to time.
- In China, epilepsy diminishes the prospect of marriage, especially for women. A survey of public awareness in 1992 revealed that 72% of parents objected to their children marrying someone with epilepsy.
- In some rural areas of India, attempts are made to exorcise evil spirits from people with epilepsy by tying them to trees, beating them, cutting a portion of hair from their head, squeezing lemon and other juices onto their head and starving them.
- In Indonesia, epilepsy is often considered as a punishment from unknown dark forces.
- In Liberia, as in other African countries, the cause of epilepsy is perceived as related to witchcraft or evil spirits.
- In Nepal, epilepsy is associated with weakness, possession by an evil spirit or the reflection of a red colour. Bystanders who witness a seizure will often spray water on the forehead of the person experiencing the seizure of make him or her smell a leather shoe.
- In the Netherlands in 1996, a person was whipped and put into isolation because her seizures were thought to result from magic.
- In Swaziland, many traditional healers mention sorcery as the cause of epilepsy.
- In Uganda, as in many other countries, epilepsy is thought to be contagious and so people with epilepsy are not allowed to join the communal foodpot for fear of others contracting epilepsy through that person’s saliva.
This is scary and sad especially among people with epilepsy. Luckily, in so called "western civilization" the situation is JUST a little bit better but this "stigma problem" still remains. We are being treating "better" just because of the Law but not far in the past:
- In the United Kingdom, a law forbidding people with epilepsy to marry was repealed only in 1970.
- In the United States of America (USA), many individual States prohibited people with epilepsy from marrying. The last State to repeal this law did so in 1980.
- In the In the United States of America (USA), 18 States provided eugenic sterilisation of people with epilepsy until 1956. Until the 1970s, it was also legal to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings.
Just wondering...is it going to change? It all comes from lack of knowledge or blinding by religious beliefs and neither me, nor you, nor governments can or even worse - want to do something about it. Isn't it time, at last to treat us equally? Think about that.
*NR
Wednesday, 20 March 2013
What Is Epilepsy? Facts, Myths and Figures
Epilepsy is a brain disorder characterized by "seizures" which is commonly used word. Over 600,000 people in Britain suffer from epilepsy.
In a simple words - seizure occurs when electric impulse in the brain fails to be "transferred" from one cell to the neighbouring cell which cause "a short circuit" - electrical discharge seizing some brain functions. There are several types of seizures and - many of them cannot be seen by other people.
BASIC FACTS AND FIGURES:
Epilepsy is the tendency to have recurrent seizures.
There are around 40 different types of seizure and a person may have more than one type.
Epilepsy can affect anyone, at any age and from any walk of life.
Epilepsy is a neurological condition.
Every day in the UK, 87 people are diagnosed with epilepsy.
Only 52 per cent of people with epilepsy in the UK are seizure-free. It is estimated that 70 per cent could be seizure free with the right treatment.
Around five people in every 100 will have an epileptic seizure at some time in their life. Out of these five people, around four will go on to develop epilepsy.
Many people who develop epilepsy below the age of 20 will ‘grow out of it' in adult life.
Many people with epilepsy are still discriminated against due to ignorance about the condition.
Epilepsy is covered by the Equality Act in England, Scotland and Wales, and the Disability Discrimination Act in Northern Ireland.
Many people with epilepsy can take part in the same activities as everyone else, with the help of simple safety measures where appropriate.
People who have been seizure-free for a year can re-apply for their driving licence.
FACTS VS. MYTHS:
MYTH: Epilepsy is contagious, or you have to be born with it.
FACT: A medical condition that is not contagious, epilepsy often first appears in children and young adults, although anyone can develop epilepsy at any time. It is a side effect of traumatic brain injury, which can happen from car accidents, falls, fights, or any time the brain suffers a tremendous blow. Veterans can develop epilepsy after a traumatic brain injury sustained in combat from explosions or from any number of scenarios.
MYTH: People with epilepsy are disabled, can’t drive and can’t work.
FACT: People with the condition have the same range of abilities and intelligence as anyone else. Some have severe seizures and cannot work; others are successful and productive in challenging careers. People with seizure disorders are found in all walks of life and at all levels of business, government, the arts and the professions.
MYTH: People with epilepsy can’t be parents.
FACT: Having epilepsy does not interfere with the reproductive process of either men or women. It is a medical condition and affects people in varying degrees.
MYTH: People with epilepsy swallow their tongue when experiencing a seizure.
FACT: Nothing should be placed in the person’s mouth during a seizure. While it is not physically possible to swallow one’s tongue, if the tongue is relaxed, it could block the breathing passage. Therefore, the person should be turned on his side so the tongue falls away and to the side.
MYTH: A person having a seizure should be held down.
FACT: Don’t try to restrain the person; this might cause injury. Instead, move anything hard or sharp out of the way, and place something soft under the person’s head.
MYTH: Always call an ambulance when a person has a seizure.
FACT: Unless the seizure last more than 5 minutes, or is followed by a series of seizures, it is seldom necessary to call an ambulance. There are medications that can be used to stop prolonged seizures, but overall, let the seizure run its course.
MYTH: You can make a person “snap out” of a seizure.
FACT: A seizure has to run its course, unless lasting longer than 5 minutes, then medical attention is needed.
MYTH: With today's medication and technology, epilepsy is largely a solved problem.
FACT: Epilepsy is a chronic medical problem that, for many people, can be successfully treated. Unfortunately, treatment doesn't work for everyone and there's a critical need for more research.
TERMINOLOGY TO AVOID:
Sources:
Epilepsy Action
Disabled-World.com
*NR
In a simple words - seizure occurs when electric impulse in the brain fails to be "transferred" from one cell to the neighbouring cell which cause "a short circuit" - electrical discharge seizing some brain functions. There are several types of seizures and - many of them cannot be seen by other people.
BASIC FACTS AND FIGURES:
FACTS VS. MYTHS:
MYTH: Epilepsy is contagious, or you have to be born with it.
FACT: A medical condition that is not contagious, epilepsy often first appears in children and young adults, although anyone can develop epilepsy at any time. It is a side effect of traumatic brain injury, which can happen from car accidents, falls, fights, or any time the brain suffers a tremendous blow. Veterans can develop epilepsy after a traumatic brain injury sustained in combat from explosions or from any number of scenarios.
MYTH: People with epilepsy are disabled, can’t drive and can’t work.
FACT: People with the condition have the same range of abilities and intelligence as anyone else. Some have severe seizures and cannot work; others are successful and productive in challenging careers. People with seizure disorders are found in all walks of life and at all levels of business, government, the arts and the professions.
MYTH: People with epilepsy can’t be parents.
FACT: Having epilepsy does not interfere with the reproductive process of either men or women. It is a medical condition and affects people in varying degrees.
MYTH: People with epilepsy swallow their tongue when experiencing a seizure.
FACT: Nothing should be placed in the person’s mouth during a seizure. While it is not physically possible to swallow one’s tongue, if the tongue is relaxed, it could block the breathing passage. Therefore, the person should be turned on his side so the tongue falls away and to the side.
MYTH: A person having a seizure should be held down.
FACT: Don’t try to restrain the person; this might cause injury. Instead, move anything hard or sharp out of the way, and place something soft under the person’s head.
MYTH: Always call an ambulance when a person has a seizure.
FACT: Unless the seizure last more than 5 minutes, or is followed by a series of seizures, it is seldom necessary to call an ambulance. There are medications that can be used to stop prolonged seizures, but overall, let the seizure run its course.
MYTH: You can make a person “snap out” of a seizure.
FACT: A seizure has to run its course, unless lasting longer than 5 minutes, then medical attention is needed.
MYTH: With today's medication and technology, epilepsy is largely a solved problem.
FACT: Epilepsy is a chronic medical problem that, for many people, can be successfully treated. Unfortunately, treatment doesn't work for everyone and there's a critical need for more research.
TERMINOLOGY TO AVOID:
- Illness: epilepsy is a condition, not an illness.
- Fit: although the term ‘seizure' or ‘epileptic seizure' is preferred by many people, some people with epilepsy choose to use the word ‘fit’.
- An epileptic: it is important to look at the person before the medical condition, therefore it is more appropriate to say ‘a person with epilepsy'.
- A victim, sufferer: this implies someone is helpless.
- Grand Mal or Petit Mal: terms previously used to describe types of seizure. There are many types of seizures so these terms are too general and are now considered outdated.
Sources:
Epilepsy Action
Disabled-World.com
*NR
Intro - Never Give Up! - You Are Stronger Than You Think!
Hi Everyone!
I have decided to create this blog for several reasons, unlike other similar blogs where people are sharing their experience. I'm planning to do much more on mine but first, few words about me.
I am 28 years old man with drug resistant temporal lobe epilepsy, diagnosed at the age of 8. For the purposes of this post I guess this should be enough as it is one of the reasons. I live and work in London.
As mentioned above, reasons for creating this blog are as following:
- sharing my experience - past and current
- spread the knowledge about epilepsy - to both - ill and healthy - advices and experience sharing for epileptic and showing healthy people that the stereotype of person suffering from this condition is wrong and it is not some infectious disease - as, unfortunetaly - many people think.
- sharing new research found regarding the subject
and...
mainly, - helping those of you who have difficulties in day-to-day life and coping with them.
Later, post by post I will share with you how my case looks like, symptoms and how I'm trying to cope and solve.
As a last thing, I'd like to apologize for my English, as I'm not a British National, but I will try to do my best ;).
REMEMBER - NEVER GIVE UP! PUT YOUR TRUST IN SCIENCE!
If you have any questions or suggestions, please contact me directly on epilepsyblog.uk@gmail.com
*NR
I have decided to create this blog for several reasons, unlike other similar blogs where people are sharing their experience. I'm planning to do much more on mine but first, few words about me.
I am 28 years old man with drug resistant temporal lobe epilepsy, diagnosed at the age of 8. For the purposes of this post I guess this should be enough as it is one of the reasons. I live and work in London.
As mentioned above, reasons for creating this blog are as following:
- sharing my experience - past and current
- spread the knowledge about epilepsy - to both - ill and healthy - advices and experience sharing for epileptic and showing healthy people that the stereotype of person suffering from this condition is wrong and it is not some infectious disease - as, unfortunetaly - many people think.
- sharing new research found regarding the subject
and...
mainly, - helping those of you who have difficulties in day-to-day life and coping with them.
Later, post by post I will share with you how my case looks like, symptoms and how I'm trying to cope and solve.
As a last thing, I'd like to apologize for my English, as I'm not a British National, but I will try to do my best ;).
REMEMBER - NEVER GIVE UP! PUT YOUR TRUST IN SCIENCE!
If you have any questions or suggestions, please contact me directly on epilepsyblog.uk@gmail.com
*NR
Subscribe to:
Posts (Atom)