About 1200 people die from epilepsy each year in the UK.
The Causes of Epilepsy-Related Deaths are:
- SUDEP. (Sudden Unexplained Death in Epilepsy)
- Accidents.
- Status Epilepticus (where there is evidence of a seizure or seizures lasting 30 minutes or more).
- Suicide.
If you have concerns, questions or if you want to participate research to reduce this numer please take action.
Visit SUDEP Action Website where you can find all your answers...
www.sudep.org
Regards
*.N.R.
Hi,
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 ;)
*.N.R.
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.
Source: epilepsy.com
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!
*N.R.
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...
Kind regards
*N.R.
Good morning People,
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,
Have a wonderful day,
*N.R.
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!
- Agatha Christie (writer)
- Alexander the Great (monarch)
- Alfred Nobel (scientist)
- Alfred the Great (monarch)
- Aristotle (philosopher)
- Bug Abbot (actor, comedian)
- Charles Dickens (writer)
- Charles V (Spanish monarch)
- Danny glover (actor)
- Edgar Allen-Poe (writer)
- George F. Handel (musician)
- Hannibal (military commander)
- Julius Caesar (emperor)
- Leonardo da Vinci (artist)
- Lewis Carroll (writer)
- Lord Byron (writer)
- Louis XIII (monarch)
- Martin Luther (theologian)
- Michelangelo (artist, sculptor)
- Napoleon Bonaparte (Emperor)
- Neil Young (musician)
- Nicolo Paganini (musician)
- Peter Tchaikovsky (musician)
- Pythagoras (mathematician)
- Richard Burton (actor)
- Sir Isaac Newton (scientist)
- T. Roosevelt (statesman)
- Vincent Van Gough (artist)
*N.R.
