I just had a phone call from The National Hospital of Neurology and Neurosurgery in London, inviting me for the test I have never heard of which is called EEG-fMRI. I must add that I am quite up to date with Neuroimaging Techniques :).
The purpose of this test is to identify inter-ictal discharges (similar to ictal discharges) but not showing the symptoms of typical seizure, which are a "signature" in the brain that somebody has epilepsy.
There is not much information about this test as the first one has been performed in 1999 but it is still "experimental" and used only for the most complex cases and usually for invasive treatment patients.
Very often it is used before referring for electrocorticography this is invasive test. EEG-fMRI is being used to pinpoint more exact area for the ECoG, and ECoG is being used mostly for surgical patients who have "passed" a series of non-invasive tests, to pinpoint the area which will be removed during the surgery with extremely high accuracy.
Well, wish me luck to stay inside MR device for 3-4 hours ;)
Below you have an article, written by Gregory L. Holmes, M.D about dating and building relationships for people with epilepsy. From my own experience I know it may affect this aspect of our life but it can be easier to deal with if you follow advices from the article below. Worth reading for both - people with and without epilepsy...
*N.R.
"Dating may be a normal part of teen life – but anyone will tell you that it’s far from easy. Going on a first date can be nerve-wracking under the best of circumstances; epilepsy just adds another twist. One question people often worry about is how soon they should tell their date that they have epilepsy. It’s definitely a good idea to tell anyone you’re dating regularly about your epilepsy, just the same as you’d tell them anything else important about yourself. However, it’s also a good idea to wait until you feel comfortable with the other person before bringing up a topic as personal as epilepsy. Every relationship proceeds at its own pace, and it’s never a good idea to push things before you feel ready. Although you may think it will make things easier to “test the waters” before opening up about your own epilepsy – perhaps by making up “people you know with epilepsy” and seeing how the other person reacts – in the long run, it’s better to wait until you feel comfortable having an completely open and honest conversation. Being able to ask questions and share feelings on any topic, including epilepsy, will only make a relationship stronger. Of course, if your seizures aren’t very well controlled, it might be a better idea to bring up the topic of epilepsy before it brings itself up. The conversation might be awkward, but it’s certainly better than the far more awkward situation of a seizure occurring with a new friend or boyfriend who doesn’t know about your epilepsy. Although it may seem tempting to tell the other person over the phone, in an IM window or by e-mail, instead of in person, any serious conversation like this is probably best done face-to-face – however uncomfortable you’re worried the discussion might be, you’re going to want to be able to see the other person’s face and react to them. On the other hand, it’s probably better to wait and find the right moment in the date to mention your epilepsy, instead of springing out of the blue. The more comfortable you are with the other person, the better the conversation will go. Of course, whenever you ask someone for a date, there’s the fear of rejection. Everyone worries about it to some degree; some people worry so much that they never ask anyone out at all. In addition to all the normal fretting – will she like my hair, will he notice my zit, is my laugh too loud, are my clothes too bright – people with epilepsy also have to worry that they’ll be rejected because of their condition. Unfortunately, this does happen from time to time. People who don’t know anything about epilepsy are sometimes afraid, the same way that anyone can be scared of something that they don’t know anything about. With time and patience, however, anyone can be taught that epilepsy isn’t something to be scared of. How well they understand epilepsy, and what they feel about it, will reflect the understanding and feelings of the person who teaches them. No one escapes being rejected from time to time. Anything could be the reason for it – a personality trait that doesn’t appeal, a physical feature that happens to turn the other person off, or even just the wrong circumstances and bad luck. Most of the time, the person who’s doing the rejecting can’t even explain to themselves exactly why they don’t think the other person is right for them. Sometimes, in order to set their mind at ease or explain to friends, they’ll even make up a reason that may or may not be the real one. Yes, people might reject you because of epilepsy – but often that’s not the real reason for rejection, and if it is, it’s just a sign of misunderstanding and ignorance. Moreover, sometimes just worrying about rejection can make you think you see it in places it doesn’t really exist. The situation’s more comfortable if the other person already knows a little about epilepsy before you start going out. In that case, you don’t have to explain as much, or worry that epilepsy will “turn someone off.” Whatever happens, even with the occasional setback, epilepsy shouldn’t stop you from having a romantic life as exciting, fulfilling, and, yes, nerve-wracking as anybody else." Source: epilepsy.com
Persons with epilepsy can enjoy all the sexual feelings and pleasures others enjoy. Epilepsy is not generally associated with restrictions on sexual activities. Most persons with epilepsy have normal sex lives. There is no convincing evidence that seizures are more likely to occur during sexual activities. Rarely, seizures may be more likely to occur during or shortly after physical exertion and intense emotional experiences. In this case, some modifications may be needed for the enjoyment of an active sex life.
Sexual dysfunction, a common problem in the general population, refers to an inability to experience sexual feelings and arousal or to perform sexual activities. For example, the failure of a man to achieve an erection (impotence) or the inability of a man or woman to achieve an orgasm (anorgasmia) are forms of sexual dysfunction. In the general population of people without epilepsy, many women do not routinely achieve orgasm, and intermittent impotence is a problem for young men and even more of a problem for older men. Impotence is more common among men with epilepsy than for men in the general population. Antiepileptic drugs, mainly the barbiturates (phenobarbital and primidone), can cause or aggravate the impotence. The epilepsy itself, and not antiepileptic drugs, may contribute to sexual dysfunction, especially if the seizures are poorly controlled. If depression is present, its treatment may lead to resumption of normal sexual functioning. Viagra (sildenafil) appears to be safe for epilepsy patients and does not interact with antiepileptic drugs.
Studies suggest that some persons with epilepsy have a reduced libido, or a lower level of interest in sexual activity, compared with people in the general population. Only a minority of persons with epilepsy have such a problem, and they are not usually concerned about it. More often, a spouse feels that the partner's interest in sex is less than he or she would expect. Women with epilepsy are more likely than other women to experience painful intercourse and sexual dissatisfaction. If sexual dysfunction is a problem, a person should not hesitate to discuss it with the doctor, and referral to a gynecologist, urologist, or other specialist may be helpful.
Many people suffering from epilepsy have problems with taking their pills on time. This may be due to our lifestyle or more likely - memory difficulties which many AEDs cause.
Taking your tablets ON TIME is very important part of treatment as forgetting or delaying them may cause loss control over seizures.
There are several ways how to prevent it:
- Setting the alarm on our mobile phones or using one of Epilepsy Apps (described in this post)
- "Basic" medication dispenser - you can buy them for just a few pounds from local chemists, eBay or Amazon.
or, for those or you who have severe memory problems, special medication dispensers with the alarm and vibration like this one
You can buy it from around £15
REMEMBER! TAKING YOUR PILLS ON TIME IS ONE OF THE MOST IMPORTANT THING FOR EFFECTIVE MEDICAL TREATMENT. DO NOT IGNORE IT!
Why? I used to do that when I was a teenager, kept forgetting to take my meds. My neurologist kept assuming incorrectly that the particular drug is not working, kept changing them and my epilepsy became extremely drug-resistant.
Do not ignore your epilepsy. It may cost you a lot. Not money I'm talking about...Care about it before you will be "taken care of" it!
Better treatment for epilepsy starts with better research. Take this survey to help one of epilepsy research team. It will take you few minutes and data you will provide may be priceless for scientists...
Hello, After a week of bigbrothering me, today I finished my Video Telemetry. Obviously, Epilepsy Murphy's Law - you will be seizure free during inpatient admission no matter how many seizures you normally experience.... Basically, only two seizures have been captured and several discharges.
I have received a little update from my neurophysiologist and I didn't like it much... The source of my seizures is quite widespread, therefore - quite large part of the brain would have to be removed what is believed - POSSIBLE. Now, MRI scan shows that this particular area is responsible for vision, which means - in case of undergoing the surgery, my vision (especially visual field) would be severely damaged. This is not a 100% fact, it would have to be confirmed my performing intracranial tests.
Now it's time for me to make some calculations. Objective, rational calculations...
Anyway, I'm back and I have to make it up with my posts :).
If you have any questions regarding epilepsy or the subject I'll be happy to advice and also I will be happy if you would like to share your experience...
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 ;)
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:
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.
Source: who.int
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.
Are you suffering from stigmatization in your life? Well, I am in a indirect way because of the Law as I mentioned above but there are many ways to give us hard time within the Law. 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.
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:
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.
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!
