Money is Power - copied from MWAH!

Difficult to survive in this world without money. Even more difficult if you're faced with a mental health issue that makes employers treat you like a beggar. If you're also having to pay for treatment and specialist care then I'm sure there are times when it just feels too much of a struggle; time to stop kicking and let the system take over. If only that were such a comfortable option. There is, however, a way out – and it's free!

Now, most of us will be treated inside our state health system – with extra insurance cover if you're lucky. That state health care depends on a huge bureaucracy supported by taxes and delivered by individuals with a range of abilities and flaws. In the past year I have seen 10 different consultants – including cardiologists, neurologists, epileptologists and neurosurgeons – and as of writing am nowhere near discovering a concrete, definite, unambiguous, iron-clad diagnosis. Not all the doctors were 'bad' as such, but then again, not all of them were all that good. Some seemed to care more than others, some actually took the time to listen and discuss options, some just seemed to enjoy a snap decision as if it was a sign of virtuosity. Many specialists will work for both a state and a private hospital, so that handing over money is still no guarantee of a premium service. However, if you find your specialist unsympathetic; or if the side-effects of your medication are serious; or if a particular line of enquiry is being blocked to you; or if, for whatever reason you feel you really need another opinion, then having that extra money puts power back into your hands.

I know from my own experience that symptoms do not always yield a clear-cut diagnosis. Many neurocardiological conditions can be subtle and complex. The starting points are always those that are statistically the most likely. If you happen to have a fairly rare condition it could well take years to diagnose it. But during that time you could also end up taking medications you don't really need. A misdiagnosis can have very serious consequences. You may be subjected to damaging side-effects that you didn't need to experience; you may end up with social or legal problems due to a condition you don't really have; you may even have restrictions placed on you at work with potential loss of status or income. In short, a misdiagnosis can ruin your life!

This is where a 2nd, or 3rd, or even 4th opinion is worth the money spent... assuming you have it. I understand that any disorder can be doubly crippling in terms of losing both one's quality of life and one's earning potential. I read on many forums about people trying, often desperately, to get back to work. Rarely is it possible to return to one's profession full-time. Often people start looking far and wide, even mundane part-time jobs can feel worthwhile, just to get some human contact and some extra cash. You're not alone – this is a problem that afflicts every country in the world. At a conservative estimate the annual global productivity lost to mental health problems comes in at over $4 trillion! Worse than this is the added fact that the majority of sufferers are not even classified as unemployed – as that assumes the possibility of future employment – but rather as “unable to work”. This seems to draw a line under our careers, a life left to dwindle away under the care and control of others. The internet is a liberating experience in terms social contacts with people across the globe who suffer just like you. Now it is also time to harness that community to bring financial benefits to us all: financial benefits that we need to feel empowered.

I will discuss how you can all create an income stream from the internet. As you are reading this I assume you have internet access. That is all that you need. You do not need to pay a penny to set up your own money-making website. You just need to know how. As we build up this website we will explain everything you need, without even charging anything. All it needs is for the mental health community to realize that it has financial strength and power. The financial strength of a community as a whole will help you build your own financial security and to regain some control over your medical condition.

You will be able to get that 4th opinion if you need it. You will be able to get extra assistance with those side-effects. You will be able to get any psychological support you need rather than feeling isolated. You will be able to insist that a full set of tests be done – or even redone – just to prove beyond a shadow of a doubt that your treatment is optimal.

I am not here to promote the private sector, but if you are becoming frustrated with your current health care it is good to have that option. You may well even be happy with your treatment but wish to investigate alternative therapies to ease some of the side-effects. But taking a global view, there are countries where the national health system is fairly basic; where the costs of going private are very low compared to the first world but are still often prohibitive for a person earning local wages in a developing country. For example, a mere $100 will not get you very much in the UK or USA but is more than enough to get an appointment with a specialist in Thailand, including travel and any medications. I will talk elsewhere about medical tourism, the point here is that a financial shot in the arm is one less thing to worry about. And I also don't know of any charities that are giving out money to individuals. Today, as I write this, I saw on UK TV a blind man who has been refused treatment on the NHS reaching out to fundraise for a private operation. So this option of self-financing is by no means rare and should really be considered if you are having doubts about the quality of your health care. This is where our project comes in – to help individuals help themselves.

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Comments.

MWAH! blog is now closed. Any stray links you may find, ignore them or let me know in a comment and I'll remove them.

MWAH! introduction - copy

The aims of MWAH! are two-fold; one personal, one social. On a personal level we need to make ourselves more noticeable, more conspicuous, and in so doing create a stronger community. Communities are held together by social and cultural bonds, but also by economic ties. Creating a community marketplace to express our potential and regain our financial power aims to improve our quality of life. This added confidence and financial freedom will help us fight the stigmas, misunderstandings and injustices that are still prevalent in every country regarding mental health issues. Our vision is global, our tool is the internet. We cannot wait around for donations, grants or charities to improve our lives. Whether you personally have a disorder or you are a carer, you have something to offer. Everyone has a story and it is shared stories that create communities. We can help you find your internet voice and with it the confidence to be heard loud and clear.

Our initial focus is on epilepsy, but we really do not want to just limit ourselves to this. Epilepsy is a complicated disorder with a whole range of causes and effects. Indeed, it has been estimated that 20% of diagnosed epileptics actually don't have epilepsy! One in five people reading this and taking anti-epilepsy drugs are on the wrong medication! This is really serious; given the often debilitating side-effects of the medications, the legal restrictions and social stigmas, do you really want to be misdiagnosed? There are many other reasons for having what at first may appear to be epilepsy; these may be neurocardiological or even psychological. This is why I do not want to limit ourselves to just epilepsy but to include the whole range of mental health issues. We do not want somebody to suddenly feel excluded just because their condition has a new label. We are more interested in encouraging people to push for a correct diagnosis and appropriate treatment.

One other issue is also coming into focus in my own mind – the pressures of what our mediocre society considers normal. Now this part gets a bit personal, but frankly, if you're not here for personal reasons then what are you doing here? As a child I was precociously intelligent, which may not sound like much of a disease but also has certain social problems attached to it. Edgar Allan Poe put it like this,“From childhood's hour I have not been As others were; I have not seen As others saw; I could not bring My passions from a common spring. [...] And all I loved, I loved alone.” Later, in my twenties, I went through a number of years of deep depression, yet came out the other side not by “pulling myself together” but by going deeper into the abyss and coming out the other side through a mixture of study and meditation, using the wisdom preserved in books when there was little around me. Now I have epilepsy and am supposed to crawl under a rock and hide away because, yet again, am not quite as normal as your average chimp. Well, there's a pattern here. A pattern I don't particularly like but one I can perceive; one that perhaps I can do something about. What is normal, average, mediocre is just the tyranny of those intolerant of anything outside their own experience; things that are sometimes way beyond their experiences. Most of life's most precious experiences never make it into a magazine or television – to do so would undermine the legitimacy of the garbage that does make it into the media. I will no doubt come back to this theme but for now just to say that a community of the mind has to be a community of diversity... and sometimes of extremes.

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Comment.

Some of the info above may be old but the sentiments are still alive. However, the blog structures have changed and will post more on that soon.

Alive and Kicking

I haven't posted on here for a while. My situation has changed and I will update this in the coming days.

Firstly, I am going to copy a couple of posts on the other blog I created, MWAH!, and then close that down.

I would also like to thank those who left comments on Technorati. Was a shame that they didn't leave any comments on this blog, as I thought nobody was really reading it. However, the compliments were much appreciated and although I may not update this blog very often it did make me think it is worthwhile leaving the information online.

Thanks.

On Frequencies

Everything in the universe vibrates. Everything, from the smallest ephemeral elementary particle to large heterogeneous masses like the Earth, has a frequency. If you play a single note on a piano, the quality of the note, the piano-nature of that note, is due to other harmonic frequencies that are generated by the string along with its main fundamental frequency. The same note played on, say, a saxophone, will sound different because the instrument generates different harmonic frequencies to the piano. The brain – the most complex computing device known to humanity – also operates at numerous frequencies. Different states of mind can be mapped onto different frequencies: whether reading this article, solving a complex problem, caught in a daydream, making love or in deep sleep; all these activities and the emotional and mental states that go with them can all be described by signature frequencies. Just like our fingerprints, the general templates are similar across humanity and yet all of us are unique in the precise details.

The electroencephalogram (EEG) is the most common diagnostic technique in analysing epilepsy. It is designed to measure the electrical activity of the brain through electrodes picking up electrical currents. This means two things; firstly that some of the brain's electrical signals can travel through the skull and skin; and secondly, that if we reverse the process and input similar electrical frequencies then we could, in theory, generate the mental state that corresponds to that frequency. It is possible to set off an epileptic seizure by applying certain trigger frequencies. Which frequencies these are will be part of this research. However, we are about to go down a very deep and rather dark rabbit hole.

Before I carry on, perhaps a little context is needed. My own background is in physics and mathematics. One of the most fascinating areas of modern science is the whole interface between biological and physical systems. A really good introduction is The Body Electric, which shows how so much of the body is a bio-electromagnetic system and that we can no longer separate biology, chemistry and physics (and mathematics) when looking at how our body and minds function. In this context, the electromagnetic pollution that is smothering our planet should be of deep concern, and yet, as it seems relatively invisible compared to, say, climate change, it generates little public passion and even less debate. This really needs to change as the biggest threat to human freedom is the control and abuse of the frequencies of life. This is not a joke; the USA has made it a priority to control the whole electromagnetic spectrum, in partnership (sometimes) with only its closest allies. Check out Information Operation Roadmap, signed in 2003 by then Secretary of Defence Donald Rumsfeld. This is not for your benefit; it is to spy where eyes cannot see, it is to map the movement of every human on this planet, it is to track, decode and read every communication exchange by anybody, it is ultimately to disable any illusion that we are free even in our thoughts. This electromagnetic spectrum includes everything from X-rays at one end of the spectrum, through visible light and onto radio waves. It also includes bioactive electromagnetic frequencies – it includes the frequencies of your mind.

Now, before I am charged with delusional paranoia let me explain one bit of physics which is nearly always misrepresented in the mass media. Whenever there is a public discussion about the effects of mobile phones on the brain we always here the same lame standard mantra regurgitated by the corporations (and by scientists in their pay). We hear that the energy of the mobile signal is so low that it cannot possibly create any harmful thermal effects. This tries to associate in people's minds the heating effect of microwave ovens with the possible heating effects of mobile phone microwave signals. However, such thermal effects are not the most likely cause of either brain tumours or other psychophysical symptoms. The thermal property of microwaves is one giant red herring dangled before an ignorant public. The real problem with mobile phone signals is not the microwave carrier frequency but the modulated pulsed frequencies that are carried with the signal. You can even hear this pulse a couple of seconds before your phone rings if you happen to have your mobile near a radio set or you are talking on a landline. Most mobile phone signals have this pulsed frequency in the range of 2-100 Hertz. This isn't the place to go into this in detail, but I am putting together some links on this. The important thing for now is that this 2-100Hz is precisely the range in which brainwaves operate. Indeed, the range 50-100 Hz is also the range of epileptiform brainwaves. Even more worryingly, as mobile signals are (nearly) everywhere you don't even need to use a mobile phone to be sitting in the firing line. You have little, if no protection.

There is, sadly, little funded research in this area compared to the worldwide use of mobile phones. The electromagnetic smog will soon be getting worse with the global roll-out of Wi-Fi and Wi-Max, as well as other systems used exclusively by the authorities, such as TETRA. The propagandists will insist that the energy levels of even these bioactive frequencies are still too low to have any adverse effects. Let us now look at another well-known physical effect: resonance. If you have a tuning fork – say, middle C, at 512 Hz – set it vibrating and place it on the body of a classical guitar then the strings will start to vibrate. If one of the strings is perfectly tuned to 512 Hz it will vibrate with a higher amplitude than all the other strings. This is an example of resonance, where the input frequency of the tuning fork is the same as the natural fundamental frequency of the string, that string will vibrate with an amplitude greater than the input frequency. Most of the time we design things to avoid resonant frequencies because they tend to be destructive. The famous old film footage of the Tacoma Narrows Bridge shows how the wind made the bridge start to oscillate. This created a standing wave which made the concrete bridge oscillate like water waves. The engineers at the time had not considered that their structure had a fundamental frequency and the wind acted like our tuning fork above. More recently the Millennium Bridge in London had to be closed within a few days of opening because the small oscillations created by people walking across the bridge was making it sway dangerously. The engineers finally realized that unwittingly, people tended to walk in step with those in front of them, again setting up a low energy input frequency which, however, was close to the natural resonant frequency of the bridge and therefore caused the bridge to oscillate with much larger amplitude. The old rule that armies should not march across bridges seemed to also apply to civil pedestrian bridges. The point is that small, low energy, input frequencies can have disproportionately high output frequencies when they are at or close to the natural fundamental frequency of the system. I hope you can now see why the thermal effects of microwave radiation is such a blind alley and why you are being led there by the pied pipers of telcos.

Now, those of you of a less cynical frame of mind may argue that the use of these frequencies is accidental and unfortunate, and that if we have conclusive proof of the harm they cause then the authorities will demand that telecom companies change their operating frequencies. It would give me a warm comforting feeling to think that our well-meaning publicly responsible corporations and governments would do the decent thing, but unfortunately this isn't going to happen. This has all the hallmarks of the tobacco industry refusing to accept the links between cigarettes and cancer. We have had our mains alternating current running at 50 Hz (or 60 Hz) for decades. As you can see, this too is in the range of brain frequencies. We can hear the mains hum, and we now know that even the eye can respond to this flicker, and yet no government is prepared to change this frequency. It would not be so difficult – we are in the middle of the greatest technological change-over from analogue to digital systems – where there's a will there is always a way.

I do not want to stray too far from the focus on epilepsy, but these concerns about the possible causes, or aggravations, of epilepsy really should be investigated. Any links to research papers and articles are welcomed. There is a huge range of similar conditions with still unexplained causes: to epilepsy we can add depression, insomnia, chronic fatigue syndrome, migraines and a host of psychosomatic and neurocardiological conditions. Of course, what we all would like is a cure, or at least an antidote, so I will also be looking at ways to mitigate any negative effects of electropollution. As I said at the start, everything has a frequency, and to believe that external frequencies in the bioactive range have no effect on the brain or our DNA or our biological system is pure wishful thinking.

How to use SnapShots

What is it?

Snapshots is triggered when you roll over a link with your mouse. It pops up a small window with a preview of the website page that the link points to. This means you can see if the page may or may not be of interest before clicking the link.

What features does it have?

When you see a Snapshots window open you will also see two small buttons on the top right. One of them is a small magnifying glass and will enlarge the preview window so you can see the website more clearly. You can toggle between two sizes.

There is also another button with a drop-down menu giving you Options and Disable. Clicking Options gives you some parameters you can set to improve your Snapshots experience. You can permanently set the size of the window, the kind of feed you see in the window (either an RSS feed or the actual website page) and whether you wish Snapshots turned on or off.

Can I switch it off?

Yes, when a Snapshots window opens, you will see two buttons at the top right of the window. One of them has a dropdown menu where you will see Options and Disable. Just click Disable and the Snapshot windows will no longer appear. In the Options page you can also switch it off permanently, so when you revisit this site it will no longer appear. Note, this latter options requires cookies setting so if in the future you delete the cookie you will need to reset this option when you visit this site.

Snapshots advertising revenue

As you will notice, the Snapshots window has a small advert below the website preview. At the moment, Snapshots does not actually pay out a proportion of income to the webmaster. However, it will pay a proportion to a designated charity. I haven't as yet decided which charity to receive these donations! These will sit there and accumulate until I decide.

And finally...

I personally find Snapshots useful, especially for seeing where contextual links are directed to. You will also recognize whether a link goes to a website that you are already familiar with, or if it is something new that you'd like to browse.

Epileptics and employment - Catch 22

Some hesitant to back disabilities law overhaul
In the wrong direction? Advocates say new legislation might weaken rights of
the disabled
By Andrew Mollison
Cox News Service


WASHINGTON - Leaders of several national disability groups are hesitating to
endorse a recommendation by President Bush's disability advisers that he and
Congress rewrite the Americans With Disabilities Act next year.
The National Council on Disability, whose 15 members were nominated by Bush
and confirmed by the Senate, reported this month that ''many Americans with
disabilities feel that a series of negative court decisions is reducing their
status to second-class citizens, a status that the ADA was supposed to remedy
forever.''
Most disability advocates agree. But some fear that if Congress takes up the
council's proposed ''ADA Restoration Act,'' it might end up making the law
weaker, instead of stronger.
''In this political climate, is it smart to open up the ADA? We know that if
we come up with our proposed changes, the other side will come up with
theirs,'' said Curtis Decker, executive director of the National Association of
Protection and Advocacy Systems, which includes 80 agencies across the country
that represent people with physical, cognitive and mental disabilities.
Such concerns, while understandable, are misplaced, according to Lex
Frieden, the council's chairperson. He said opposition to discrimination against
persons with disabilities extends across party lines.
''It's a valid question to raise,'' said Frieden, senior vice president of
the Institute for Rehabilitation and Research. ''In response, I would say that
when the National Council on Disability first proposed the ADA [in 1988], a
conservative, Ronald Reagan, was president, and there was a very conservative
Republican Senate. But the law moved forward at a rapid pace and was signed
by another Republican, the first President George Bush, in 1990.''
The independent federal advisory agency praised the law's successes in
improving access to transportation, communications and buildings that serve the
public.
But it said the ADA's protections for workers have been undermined since
1999 by a series of Supreme Court decisions, and lower court judgments that
relied upon those decisions.
The decisions made it harder for people with disabilities to prove that they
have disabilities, bolstered the defenses that can be used by those accused
of discrimination, and limited the damages and legal costs that can be
collected by those whose complaints are upheld.
That helps explain why only 35 percent of adults with disabilities have
full-time or part-time jobs, the council said.
Charlotte Chenoweth, a registered nurse who analyzed medical records in
Tampa, Fla., had a seizure and was diagnosed with epilepsy. Until she and her
physician found the right combination of medications for reliable control of her
seizures without side effects, she could not drive to work.
But Chenoweth lost her attempt to force her employer to let her work at home
or to adjust her hours to coincide with the rides she could get to work. The
judge ruled that Supreme Court decisions meant that since her epilepsy had
been mitigated by the time her case came up, she was no longer protected by the
ADA.
In fact, according to the council, Supreme Court decisions would have
allowed her employer to fire her for having epilepsy, as long as the epilepsy was
under control.
''This is true even if the employer . . . puts up signs that say 'epileptics
not welcome here,' inaccurately assumes that all persons with epilepsy are
inherently unsafe, or has the irrational belief that epilepsy is contagious,''
said the council's report, called ''Righting the ADA.''
In a similar case cited by the council, a pharmacist with diabetes was fired
after he said he needed a half-hour off every four hours in order to take
insulin and eat a small meal. It was ruled that because he could control his
diabetes through such measures, he didn't have a disability covered by the
ADA.
The revisions proposed by the council included the recommendation that the
current ban on discrimination ''against an individual with a disability'' be
reworded to ban discrimination ''on the basis of disability.''
''They would restore the original meaning,'' said Robert Burgdorf, a law
professor at the University of the District of Columbia who worked on both the
1988 and the new drafts. ''If an employer discriminates against you on the
basis of epilepsy or diabetes, the question should be whether you are being
discriminated against, not whether you have epilepsy or diabetes.''
John Kemp, a Washington attorney who served on the council under President
Clinton, endorsed the current council's plan. ''It shouldn't be true, it
can't be true, that I - wearing four prostheses and using an electric
scooter-wheelchair - could possibly be considered not covered by the ADA, because I
have mitigated the limitations caused by my impairment.''

_http://www.sltrib.com/nationworld/ci_2491522 _
http://www.sltrib.com/nationworld/ci_2491522

Epilepsy advocates propose strategies to heighten treatment expectations

Survey reveals room for improvement in balancing seizure control and side effects

WASHINGTON (March 28, 2008) — On the heels of the nation’s largest event dedicated to the epilepsy community, the National Walk for Epilepsy, advocates today announced their recommendations in response to a new national survey uncovering key challenges facing the epilepsy community. Challenges include gaps in patient-physician communication around medication-related side effects and low public awareness of epilepsy.

According to the survey, sponsored by ORTHO-McNEIL NEUROLOGICS®, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc, 75 percent of epilepsy patients experience medication-related side effects and for the majority, these impact their daily lives, including 57 percent who say work or school are affected. A disconnect exists between patients and healthcare professionals surrounding their discussions on these side effects. While 98 percent of physicians report discussing medication-related side effects with patients, less than half (47 percent) of epilepsy patients report these discussions take place. And, more than one-quarter of patients report they sometimes feel reluctant to broach this topic during office visits. Not surprisingly, healthcare professionals underestimate the number of patients experiencing medication-related side effects, estimating this figure at just 43 percent. The most common side effects according to the survey are fatigue, poor memory, weight gain or weight loss and loss of concentration.

“These findings suggest treatment expectations among epilepsy patients are simply too low. According to the survey, 61 percent of people with epilepsy believe that side effects are just something they have to live with,” said roundtable moderator and Epilepsy Foundation CEO and President Eric Hargis. “People with epilepsy should be proactive in discussing their treatment plans, opening up about the side effects they experience and sharing how these side effects are affecting their lives.”

Panelists at the nine-person roundtable included some of the nation's premiere epileptologists, patients and caregivers and celebrity advocates, including Greg Grunberg, star of NBC’s television series "Heroes" and father of a son with epilepsy, and New York Giants defensive back Geoffrey Pope whose grandmother has epilepsy.

Improving Treatment Plans

Roundtable participants agreed that people with epilepsy and healthcare professionals should work together to ensure treatment plans are tailored to the individual. According to the survey, 85 percent of patients would prefer to have a more active role in making their treatment decisions.

“It is crucial for patients to speak up and be a part of developing their treatment model,” said Georgia Montouris, M.D., director of epilepsy services at the Boston University School of Medicine and Boston Medical Center.

Healthcare professionals surveyed say they would recommend an alternative treatment plan at least half the time for those patients experiencing medication-related side effects. "We need to increase the focus on individualizing treatment plans and strive for optimal balance between seizure control and minimization of side effects so that we can improve the overall well-being of people with epilepsy,” added Dr. Montouris.

Roundtable participant Caitlin Purcell, 17, explained how her healthcare professional started her on one medication, but when she was still experiencing seizures he added new medications to her regime to help her further manage her condition. Physicians often try a variety of therapy mixes to customize the treatment approach, “and Caitlin’s physician was trying to find the right ‘cocktail’ for her,” noted Dr. Mark Spitz, head of the Adult Comprehensive Epilepsy Program at the University of Colorado.

Participants also discussed the need for new treatments. “We need to continue funding research and development as there is a need for drugs that help us better straddle this balance until a cure for epilepsy can be found," said Hargis.

Other recommendations for improving communication and treatment plans included:

• Patients and caregivers should advocate for themselves and discuss their treatment plans, side effects and what other steps can be taken with their healthcare professionals. “As long as there is seizure activity, there are still things that can be done or treatments that can be tried,” said Grunberg.
• Patients should strive for a more individualized treatment plan by sharing a daily diary or record of how they are feeling, any medication side-effects or breakthrough seizures they experience with their healthcare professional.
• Patients and caregivers, as well as healthcare professionals, should raise their standards and not settle if the patient is still experiencing seizures or side effects. “It’s not a trade-off. We may not be able to get every patient to the point of experiencing no seizures and no side effects, but we should never stop trying,” said Dr. Montouris.
• Finally, panelists encouraged patients to not hesitate to seek a second opinion when patients are not achieving their treatment goals.

Raising Public Awareness of Epilepsy

According to the survey, three-quarters of people with epilepsy and 90 percent of physicians feel that the general public is not well-informed about epilepsy. Roundtable participants agreed that this is a major cause for the stigma surrounding epilepsy and some shared their stories of how this has impacted their lives.

“The other kids (in school) are sometimes afraid of me. And sometimes even if they want to have me over after school, their parents are afraid, especially if they haven’t seen me have a seizure,” explained 14-year-old panelist Carly Richards of Chicago.

Participants addressed the need for continued public education programs that focus on eliminating stigma associated with epilepsy, such as the March 29th annual National Walk for Epilepsy. The panelists encouraged all people who have epilepsy or know someone with the condition to speak out and share their experiences.

“We are at a tipping point for bringing epilepsy out in the open,” said Grunberg. “We need to continue the dialogue we started here today to increase awareness and break down the stigma that is unfairly associated with this disorder.”

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The roundtable, which took place in Washington, D.C. on Friday, March 28, was hosted by the Epilepsy Foundation and ORTHO-McNEIL NEUROLOGICS®, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc.

Please visit: www.epilepsyfoundation.org to find more information about upcoming 2008 initiatives resulting from the roundtable discussion.

About the Survey

Richard Day Research fielded a survey to epilepsy patients and healthcare professionals. Data from both audiences were collected in January 2008. Healthcare professional data included 459 healthcare professionals—comprised of 155 primary care physicians (family, general, or internal medicine) and 304 neurologists. Patient data included 414 people diagnosed with epilepsy, screened for having seen a healthcare professional for epilepsy within the last two years.

About the Epilepsy Foundation

The Epilepsy Foundation, a national nonprofit with affiliated organizations throughout the United States, has led the fight against epilepsy since 1968. The Foundation’s goals are to ensure that people with seizures are able to participate in all life experiences; and prevent, control and cure epilepsy through services, education, advocacy and research, so not another moment is lost to seizures. For additional information, please visit www.epilepsyfoundation.org.

About ORTHO-McNEIL NEUROLOGICS

Headquartered in Titusville, N.J., ORTHO-McNEIL NEUROLOGICS focuses exclusively on providing solutions that improve neurological health. The company currently markets products for Alzheimer's disease, epilepsy and acute and preventive migraine treatment. ORTHO-McNEIL NEUROLOGICS, in conjunction with internal and external research partners, continues to explore new opportunities to develop solutions for unmet healthcare needs in neurology.

original http://www.eurekalert.org/pub_releases/2008-03/gi-eap032808.php

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I wish to comment on some of the points here but for now have just posted the news item as sometimes can be difficult to track later.

Epilepsy marked by neural 'hub' network

Epilepsy marked by neural 'hub' network

EUREKALERT

Contact: Tom Vasich
tmvasich@uci.edu
949-824-6455
University of California - Irvine

Abundance of hubs influences seizures and offers insight into how epilepsy develops, UCI study finds

Irvine, Calif., March 25, 2008 An increased number of neuron hubs in the epileptic brain may be the root cause for the seizures that characterize the disorder, according to a UC Irvine study.

Researchers Robert Morgan and Ivan Soltesz with the Department of Anatomy and Neurobiology identified that these hubs a small number of highly connected neurons are formed in the hippocampus during the transition from a healthy brain to an epileptic one. The increased number of connections among these hubs, they found, circulate and amplify signals to such a degree that they overwhelm brain networks, leading to epileptic seizures.

The study appears this week in the online early edition of the Proceedings of the National Academy of Sciences.

The structure of the epileptic brain differs substantially from that of a healthy one, and our discovery of this hub network offers insight into how epilepsy may develop, Morgan said. By establishing therapeutic measures that can selectively target these hub cells, we may be able to create a treatment for epilepsy.

The researchers used a computer model of a moderately injured hippocampus the brain region involved in many forms of epilepsy to create the signaling networks that mimic an epileptic brain, and they found that one featuring a greater number of neuronal hubs promoted the onset of seizure.

By comparing this model with previous animal model studies of epilepsy, they identified these hubs as the network conduits for seizures. Soltesz said that previous studies revealed the existence of these hubs but did not define their role.

This study is a great example of integrating data from biomedical informatics with basic and clinical research to advance the effort to understand and potentially treat disease and disorders like epilepsy, added Soltesz, who is chair of the anatomy and neurobiology department and a member of UC Irvines Epilepsy Research Center.

Epilepsy affects more than 2 million individuals of all ages in the U.S. alone and at least 50 million worldwide. It is characterized by the occurrence of spontaneous, unpredictable seizures, which can interfere with daily life, be dangerous, and lead to death of some brain cells. While much information is available about the abnormal communication of neuronal networks in epilepsy, the basic mechanisms, involving both genetic and acquired elements, are not fully understood.

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The National Institutes of Health and the UC Irvine Medical Scientist Training Program supported the study.

About the University of California, Irvine: The University of California, Irvine is a top-ranked university dedicated to research, scholarship and community service. Founded in 1965, UCI is among the fastest-growing University of California campuses, with more than 27,000 undergraduate and graduate students and nearly 2,000 faculty members. The third-largest employer in dynamic Orange County, UCI contributes an annual economic impact of $3.6 billion. For more UCI news, visit www.today.uci.edu.

News Radio: UCI maintains on campus an ISDN line for conducting interviews with its faculty and experts. The use of this line is available free-of-charge to radio news programs/stations who wish to interview UCI faculty and experts. Use of the ISDN line is subject to availability and approval by the university.

Contact:
Tom Vasich
949-824-6455
tmvasich@uci.edu

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Tweedledum and Tweedledee

I had a revelation! Not quite on the Pauline level but one of many stations on the way to some unknown terminus. Enough of the paschal references, although death and resurrection is pretty close to many of us.

Anybody who has read some of the other posts will know that I have been investigating the possibility of not having epilepsy and hence the possibilities it opens up – if that is the right phrase. Now, an epileptologist is a neurologist who has specializes in epilepsy. Simple enough, but if the diagnosis of epilepsy is thrown into doubt then one can be thrown into ping-pong game of going from neurologist to cardiologist, then possibly back again, then back again. Labelling my condition as 'syncope' does not fool me as that is just a fancy word for fainting – from the Greek meaning “to cut short” - one of a galaxy of medical terms that merely describes the phenomenon rather than the cause.

I have finally found a really good website with full articles on syncopes; not more descriptions of symptoms but the most recent thoughts on the neurocardiological mechanisms that kick in when we feel we're being kicked into touch. If you are having doubts about your own diagnosis of epilepsy then have a look at the National Dysautonomia Research Foundation and especially the research abstracts.

Having read some of these excellent articles it strikes me that the reason many of us are passed from neuro to cardio and back again is because the mechanism of syncopes is a synthesis of both specializations. I am not sure whether they should be called neurocardiologists or cardioneurologists, Tweedledum or Tweedledee, so long as someone is there to pick up those patients who fall between these two stools. As Alice said, “I do believe they live in the same house!” But looks like she was wrong.

Anybody who knows of hospitals that have these dual specialists then post it here. For the rest of us, it looks like the cardiology department has the larger budget.

Coming back to syncopes, although I was being flippant above, I was also being serious – looks like much of the confusion is also in the heads of doctors who are just a bit lax in their use of their own terminology. OK, let's try.

Syncope is a symptom defined as a transient spontaneous loss of consciousness with a rapid onset, and self-limited, complete, and usually prompt recovery the underlying mechanism of which is a transient global cerebral hypoperfusion. This last bit just means a loss of blood in the brain.

An epileptic syncope is all the above apart from the cerebral hypoperfusion, which is replaced by epileptiform waves on an EEG.

So the problem is really that the words are defined by the causes of the loss of consciousness, which can only be established after testing for a whole range of things under the broad banner of transient loss of consciousness (TLOC). Both syncope and epilepsy are subcategories of TLOC, slightly complicated by the fact that on rare occasions one can have epileptic and non-epileptic seizures at the same time (I'm not going to go into this now!) What I am going to look into are the mechanisms of syncopes, so back to the neurocardiology department!

Hypnosis Helped Physicians Pinpoint Cause Of Children's Seizures

ScienceDaily (2008-02-15) -- It was no way for an 11-year-old to live. For a month the boy had endured daily episodes of uncontrollable jerking and foaming at the mouth, and his physicians were concerned that the boy had epilepsy. Before starting the boy on a lifetime of anti-seizure medications, though, they turned to an unconventional diagnostic tool: hypnosis. Researchers used hypnosis to evaluate nine children prone to seizures and found that the technique could help them determine whether the children had epilepsy.

http://www.sciencedaily.com/releases/2008/02/080214172701.htm

Add your website or blog to our links

Really easy, just leave a comment to this post with your site URL and I'll have a look and add your site to our links. Can be a website or blog or forum or newsgroup... doesn't matter as long as it is relevant and active.

I will also add your site to our Epilepsy Search Engine, so if you have a lot of content you may well find users coming to you from that route as well as our direct link.

A link back will be greatly appreciated... but then again, I shan't cry if you don't!

Rycharde

Technorati Profile

Epilepsy Museum

I found this doing a random search on potentially interesting websites.

http://www.epilepsiemuseum.de/

The German Epilepsy Museum Kork is a small museum dedicated to the history of epilepsy. As it says on the site, this is probably the only such museum in the world! The design of the site is a little dated but there is some interesting information - to which I shall refer to in another post - and the site is available in German, English, French, Spanish, Russian and Turkish.

If you know of any other museums or exhibitions let me know.

enjoy!

Suicide Risk From 11 Epilepsy Drugs

FDA ALERT [1/31/2008]: The FDA has analyzed reports of suicidality (suicidal behavior or ideation) from placebo-controlled clinical studies of eleven drugs used to treat epilepsy as well as psychiatric disorders, and other conditions. These drugs are commonly referred to as antiepileptic drugs (see the list below). In the FDA’s analysis, patients receiving antiepileptic drugs had approximately twice the risk of suicidal behavior or ideation (0.43%) compared to patients receiving placebo (0.22%). The increased risk of suicidal behavior and suicidal ideation was observed as early as one week after starting the antiepileptic drug and continued through 24 weeks. The results were generally consistent among the eleven drugs. Patients who were treated for epilepsy, psychiatric disorders, and other conditions were all at increased risk for suicidality when compared to placebo, and there did not appear to be a specific demographic subgroup of patients to which the increased risk could be attributed. The relative risk for suicidality was higher in the patients with epilepsy compared to patients who were given one of the drugs in the class for psychiatric or other conditions.

All patients who are currently taking or starting on any antiepileptic drug should be closely monitored for notable changes in behavior that could indicate the emergence or worsening of suicidal thoughts or behavior or depression.

This information reflects FDA’s current analysis of available data concerning these drugs. Posting this information does not mean that FDA has concluded there is a causal relationship between the drug products and the emerging safety issue. Nor does it mean that FDA is advising health care professionals to discontinue prescribing these products. FDA intends to update this document when additional information or analyses become available.

---

Adverse reactions or quality problems experienced with the use of this product may be reported to the FDA's MedWatch Adverse Event Reporting program; see addresses below.

Considerations for Physicians and Other Health Care Professionals

Data from 199 placebo-controlled clinical studies covering eleven different antiepileptic drugs were reviewed and analyzed for reports of suicidal behavior (completed suicides, suicide attempts and preparatory acts) and suicidal ideation. The studies examined the effectiveness of the drugs in epilepsy, psychiatric disorders (e.g., bipolar disorder, depression and anxiety) and other conditions (e.g., migraine and neuropathic pain syndromes). The analysis included a total of 43,892 patients ages five and older (27,863 in drug treatment groups and 16,029 in placebo groups).

There was a statistically significant increased risk of suicidal behavior and suicidal ideation in the patients randomized to receive an antiepileptic drug compared to patients who received a placebo. The estimated overall risk was about twice that of the placebo group. There were an estimated 2.1 per 1000 (95% CI: 0.7, 4.2) more patients in the drug treatment groups who experienced suicidal behavior or ideation than in the placebo groups.

Four of the patients who were taking one of the antiepileptic drugs committed suicide, whereas none of the patients in the placebo group did. The increased risk of suicidal behavior and suicidal ideation was observed at one week after starting the drug and continued to at least 24 weeks. Because most trials included in the analysis did not extend beyond 24 weeks, the risk of suicidal thoughts or behavior beyond 24 weeks could not be reliably assessed.

FDA will be working with manufacturers of marketed antiepileptic drugs to include this new information in the labeling for these products. FDA is also planning to discuss these data at an upcoming advisory committee meeting.

All patients treated with antiepileptic drugs should be monitored for suicidality and other unusual changes in behavior. Symptoms such as anxiety, agitation, hostility, mania and hypomania may be precursors to emerging suicidality.

Healthcare professionals who prescribe antiepileptic drugs should:

• Balance the risk for suicidality with the clinical need for the drug


• Be aware of the possibility of the emergence or worsening of depression, suicidality, or any unusual changes in behavior;


• Inform patients, their families, and caregivers of the potential for an increase in the risk of suicidality so they are aware and able to notify their healthcare provider of any unusual behavioral changes.

Information for patients, family members, and caregivers:

• Taking antiepileptic medicines may increase the risk of having suicidal thoughts or actions;


• Do not make any changes to the medication regimen without first talking with the responsible healthcare professional;


• Pay close attention to any day-to-day changes in mood, behavior and actions. These changes can happen very quickly so it is important to be mindful of any sudden differences.


• Be aware of common warning signs that might be a signal for risk of suicide. Some of these are:





• Talking or thinking about wanting to hurt yourself or end your life


• Withdrawing from friends and family


• Becoming depressed or having your depression get worse


• Becoming preoccupied with death and dying


• Giving away prized possessions

If these or any new and worrisome behaviors occur, contact the responsible healthcare professional immediately.

Background and Data Summary

After preliminary analyses of data from several drugs in this class suggested an increased risk of suicidality, in March 2005, FDA requested data from manufacturers of marketed antiepileptic drugs for which there were adequately designed controlled clinical trials in order to review the possible association between these drugs and suicidality events. In an effort to obtain the most complete and accurate data for this review, requests for additional information and clarification were sent to the manufacturers in 2006 and 2007. The analyses performed were similar to those performed by FDA for antidepressant drugs in the last several years.

One-hundred ninety nine placebo-controlled clinical studies covering eleven different drugs were included in the primary analysis. The conditions studied in these clinical trials included epilepsy, selected psychiatric illnesses, and other indications, including migraine and neuropathic pain syndromes. The analysis included 27,863 patients in drug treatment groups and 16,029 patients in placebo groups. Patients included in the analysis were five years of age or older. The individual sponsors of the drugs were responsible for identifying suicidal behavior and suicidal ideation events in their databases based on the instructions provided by FDA.

There were 4 completed suicides among patients in drug treatment groups and none among the patients in placebo groups. Overall, 0.43% of the patients in drug treatment groups experienced suicidal behavior or ideation versus 0.22% of the patients in placebo groups, corresponding to an estimated 2.1 per 1000 (95% CI: 0.7, 4.2) more patients in the drug treatment groups who experienced suicidal behavior or ideation than in the placebo treatment groups (See Table). In this analysis, the relative risk for suicidal thoughts or behavior was higher for patients with epilepsy compared to those patients with psychiatric or other disorders (See Table). The higher risk for suicidal behavior or suicidal ideation was observed at one week after starting a drug and continued to at least 24 weeks. The results were generally consistent among the drugs and were seen in all demographic subgroups. Specifically, there was no clear pattern of risk across age groups.

Relative Risk and Risk Difference for Suicidality According to Trial Indication

Indication	Placebo Patients with Events Per 1000 Patients	Drug Patients with Events Per 1000 Patients	Relative Risk: Incidence of Events in Drug Patients/Incidence in Placebo Patients	Risk Difference: Additional Drug Patients with Events Per 1000 Patients
Epilepsy	1.0	3.5	3.6	2.5
Psychiatric	5.2	8.3	1.6	3.1
Other	0.8	2.0	2.3	1.1
Total	2.2	4.3	2.0	2.1

The following is a list of antiepileptic drugs* included in the analyses:

• Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR)


• Felbamate (marketed as Felbatol)


• Gabapentin (marketed as Neurontin)


• Lamotrigine (marketed as Lamictal)



• Levetiracetam (marketed as Keppra)
  
  
  
  • Patient Information Sheet
  
  
  
  


• Oxcarbazepine (marketed as Trileptal)



• Pregabalin (marketed as Lyrica)


• Tiagabine (marketed as Gabitril)


• Topiramate (marketed as Topamax)


• Valproate (marketed as Depakote, Depakote ER, Depakene, Depacon)



• Zonisamide (marketed as Zonegran)

* Some of these drugs are also available in generic form.

Although the drugs listed above were the ones included in the analysis, FDA expects that the increased risk of suicidality is shared by all AEDs and anticipates that the class labeling changes will be applied broadly.

Adverse reactions or quality problems experienced with the use of this Product may be reported to the FDA's MedWatch Adverse Event Reporting program either online, by regular mail or by fax.

• Online: www.fda.gov/medwatch/report.htm


• Regular Mail: use postage-paid FDA form 3500 available at: www.fda.gov/MedWatch/getforms.htm.


• Mail to MedWatch 5600 Fishers Lane, Rockville, MD 20852-9787



• Fax: 1-800-FDA-0178

Anti-convulsants and alcohol. Can I get drunk?

One of the biggest urban legends must be that one cannot drink alcohol whilst taking medicines. Any medicines! How many people have you heard telling you this? They really do care, they tell you for your own good. Doesn't really matter if it's complete bullshit! Well, it is complete crap most of the time, but not always. So it is important to know which medicines will mess up your social life - assuming you're a social drinker and not a lonely alcoholic - and which medicines can be OK. Sometimes it is worth experimenting, but sometimes it is also worth knowing when not to experiment, when it has been tested and is bad news. My current knowledge is being on phenytoin. So can I get drunk whilst taking phenytoin?

The answer for me has been Yes! Like most medicines, phenytoin is broken down in the liver, along with alcohol. In my experience, drinking alcohol has been, more or less, fine. Indeed, one neurologist even told me that drinking wine will be fine, and to keep alcohol to a minimum for my own health, but there was no good reason to avoid alcohol completely. Other neurologists obviously subscribe to the flagellant branch of medicine and have said not to drink alcohol. I have enough problems handling the epilepsy and the medicine side-effects - what I don't need is bogus advice to become a teetotal anchorite. If you are only taking phenytoin and do have problems handling alcohol then let me know, for me it hasn't been a problem.

As I said above, it is worth doing little experiments on this. You don't need to get blind drunk, just a small drink and see what happens. This should be OK, but keep the drink small. I did have one really bad experience. It wasn't with phenytoin but with a beta-blocker (betalol). The doctor did warn me and I was a good boy until a friend came to see me. I tried a small drink - had about a quarter of a glass of beer - and... oh shit... was like a sedative for an elephant. Was useless for 10 minutes and didn't touch a drop for the rest of the night. So sometimes... sometimes... alcohol and medication do not mix. Just be informed and don't believe ' good advice'.

Getting real information is not so difficult these days, just do a search on alcohol and your drug, look at a number of different sites to see if they agree. Make sure they are specifically talking about your drug, not a similar one, not one in the same family, but the exact brand you are taking. In the above example, some beta-blockers seem to be OK with alcohol, just not mine! And if your reaction is different to what you find written then so be it, our metabolisms are all slightly different.

And for a last bit of advice, get your blood checked out regularly. I've had a full test done recently and hepatic functions are all normal. The one thing that was slightly out could be ascribed to the phenytoin and am now on supplements to bring that back to normality.

If you really cannot drink alcohol then that's too bad, but it isn't worth making your life worse just for a bit of volatile spirit, but if you're just assuming you cannot drink then do a bit of research.

Gamma Knife Surgery

I will start this as a 'stump' (wiki-style) and hope to expand it as I get more info. This was inspired by this post at the forum4e. Gamma Knife surgery is a non-invasive form of brain surgery using, as the name suggests, directed gamma rays. This is a possibility for those epileptics, such as myself, who have an obvious physical cause such as a lesion, calcification or tumor. There are not so many places in the world where this is available.

To quote the Cromwell Hospital website, "Gamma Knife Surgery is a procedure which can be used as an alternative to open surgery for the treatment of benign and malignant brain, head and neck tumours, vascular malformations and certain functional disorders including: trigeminal neuralgia; Parkinson's disease; psychoneurosis; and epilepsy. It uses highly precise radiation beams to destroy brain tumours and other abnormalities without the need to operate. It is also used for the treatment of facial pain, focal epilepsy and Parkinson's disease."

So here goes a list:

Cromwell Hospital Gamma Knife Centre, London, UK (homepage)

Bangkok Hospital Neurosurgical Gamma Center, Bangkok, Thailand (homepage)

Timone University Hospital, Marseille, France (French homepage)

The first hospital to use the Leksell Gamma Knife Perfexion system was la Timone in 2006. Cromwell Hospital uses the same machine. I am not currently aware if there are other gamma knife machines on the market. Any other hospitals you know of, please let me know through a comment. Just as importantly, how much did it cost (if private), and what was the result?

The other important consideration is whether this method is appropriate or not. I'll dig a little deeper here, but yet again, let me know of your own experiences. If it is appropriate then this could be an option you could ask your own neuro.

Life on phenytoin

One of the main reasons driving me towards finding a permanent solution is the side-effects of the medication. I was initially offered valproate but had one look at the side-effects and thought,"Yeah, that sounds like fun, but is there anything less... disastrous!?" Well, at number two on my consultant hit list was phenytoin, so gave that a try. After one year am regretting it.

Firstly, I was given 200mg once a day, to be taken in the evening. It very quickly gave me insomnia so I changed it to a morning dose - later when I met the consultant he agreed that was a good idea.

It also makes me vacant and often just brain-dead, so some days I drop it to 100mg - yes, very naughty but it's my life. Actually feel more clear-headed when I don't take it, but I'm aware it's a juggling act. The wife of a neighbour of mine in Thailand is on 300mg. She's half my size and often walks around like a zombie. Unlike myself, they think doctors are divinely inspired, or at least their orders must be obeyed as if they were sergeant-majors.

After about 3 months I noticed my eyesight suddenly deteriorating, becoming long-sighted. Now as I'm normally slightly short-sighted my in-focus field of vision is going to shrink to about spitting distance.

Libido seems to have walked away like a eunuch in a whore house. Actually this gives me an idea! Any experiences of either Viagra or Cialis (or generics thereof) combined with anti-convulsants would be welcomed. The way Viagra works makes me think it won't be so great (wasn't great before the meds) but Cialis works differently and, from experience, is fine (so far).

Did I mention being brain-dead?

After about six months one of the more worrying side-effects. Thought it was just weight loss but was actually a loss of strength, loss of muscle definition and bone mass. Was turning into a weed - well, OK, a six foot weed but spindly nevertheless. Finally had a general blood test and was as fit as a fiddle! Well, almost. Slightly low folic acid level, and no, am not pregnant. So have recently started on folic acid supplements, on top of my usual B vitamin supplements.

As an aside, here's an example of the nanny state being a prison rather than a sanatorium. I had B vitamins given to me by my doctor in Thailand, to help heal the nervous system. Come to the UK and my GP here firstly states that there is no proof vitamins do anything, and secondly tells me it is so easy to overdose on vitamins that doctors don't want to be sued!! Two weeks later the same doctor puts me on vitamin B9 (folic acid). I ignored him and keep taking the industrial strength B's.

Did I mention that short term memory is shite?

My last consultant suggested I change medication. I asked him what about the op? He said it was only done as a last resort (on the NHS). I said to him to fast forward to that time. He refused. I left and will get a second opinion. Depending on that I'll see if I will swap meds - it's an experiment on myself - but there are a dozen meds I could try before the NHS can be bothered to consider an operation.

Experiences of other meds welcomed - to avoid confusion will create another post if deemed necessary.

Has the phenytoin helped my seizures? Hard to tell as don't have a doppelgänger to act as control. Have mini-seizures perhaps once or twice a week, although haven't fainted in nearly a year, but have had maybe 3 or 4 close episodes. Comes in clusters, so chaotic.

Introduction

Epilepsy Cures

I have chosen the name of this blog to be both hopeful and challenging. I am well aware that epilepsy is a broad term with a whole continuum of symptoms. I am also aware that there are many forums and websites about epilepsy. So why start another?

Well, I really want to focus on any permanent cures that exist. I would define a cure as leading to being both seizure-free and medication-free. Being seizure-free on medication is a way of controlling the epilepsy rather than curing it. I am aware this may exclude many epileptics who have been told they will have to be on medication for life. However, I also feel that the advice given often depends on the consultant, the hospital, the medical system one is in and even in which country one seeks advice. It is therefore important to not only focus on the methods available but also on the individuals and organisations delivering the medical care. I hope this will eventually grow into a detailled resource on where to go for the best care. This is not just about which consultant works in which hospital but also about the advice they give. Doctors have their own particular interests and attitudes. One can get an idea from their research papers, but would be even better to read about people's own experiences.

I would therefore welcome all contributions about your own experiences as well as questions that, hopefully, either I or another contributor can answer. Any links to exisiting information also gratefully received.

As an example, to show how medical care differs around the world, I have experienced treatment in both the UK and Thailand. In the UK medical care may well be free at the point of delivery but it is also incredibly slow and their approach is to do the minimum necessary rather than the optimum needed. In contrast, in Thailand one has to pay for treatment and you can get anything done quickly, but be careful you are not being charged for pointless treatments. The costs in Thailand are about 10-20% of the costs of going private in the UK, so that even adding travel costs this may be quicker and more affordable than suffering in the UK. I will say more about this in various posts.

I will also be adding links as and when good websites are brought to my attention, as well as a dedicated search engine for epilepsy sites.

All comments are moderated so please be patient. Anything interesting that may warrant a new post will have one created.