Epilepsy and Autism – Epilepsy Therapy Project – Silently Seizing Book Review

http://www.epilepsy.com/newsletter/nov12/silently_seizing?utm_source=Epilepsy+Therapy+Project&utm_campaign=065211be84-Epilepsy_News_11_28_12&utm_medium=email

I have to be honest but until I read the blog post-

http://ahmritanaturalmentalhealth.wordpress.com/2012/11/26/autism-spectrum-as-a-developmental-disorder/

I had never realized how much epilepsy and autism seem to inter-relate, this is despite having supported people with both autistic spectrum and epilepsy health problems who were taking anticonvulsant medication. It goes to show how a different perspective can help with a problem.

I had just never looked into it from this point of view, but now I’m intrigued.

Like many things in life once you see something in one place – you start seeing it everywhere!

Low and behold the Epilepsy Therapy Project newsletter this month has a book review that looks very promising.

‘Silently Seizing’ by Caren Haines, with input from Nancy Minshew.

It is reviewed by by Joseph I. Sirven, MD, Editor-in-Chief, epilepsy.com Last Reviewed: 11/28/2012

I have put up the link to the review at the top of the page, I find this newsletter very interesting.

It begins;

‘A conundrum often faced by those with autism and/or epilepsy is the confusion between these seemingly disparate conditions. Many facets of autism spectrum disorder can have aspects that are similar to the presentation of epilepsy, and vice versa’.

The summary at the end says:

‘This book is a must read for anybody who is interested in understanding the multiple similarities, differences and approaches to dealing with silently seizing. Because of the fragmented nature of healthcare in the United States, it is important to empower oneself with knowledge so as to serve as one’s own best advocate.’

I’m just off to order it now. Thank-you Epilepsy Therapy Project and Ahmrita Nautral Mental Health.

For US Epilepsy Self Advocacy Blog see link:

http://epilepsytalk.com/2012/11/28/damaged-goods/

This reblog post about a gulf war veteran who never gave up and the transformation that happened when he found the yoga teacher who helped him to believe in himself.

Reading Without Limits

Got Grit? Watch this inspiring video of a veteran who used yoga to not only walk again, but find hope. Teaching the soft skill of grit is essential is important, according to author Paul Tough who profiles KIPP Infinity Charter school in his new book How Children Succeed. I thought that this video would be useful in classrooms who are interested in sharing the power of grit with their students. How would you use the clip?

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Epilepsy Options Beyond Medication – Epilepsy Action Events 2013

Options Beyond Medication – Epilepsy Action Events 2013

http://www.epilepsy.org.uk/involved/local-events/treatment-options

Follow the link to find events in the UK hosted by Epilepsy Action that will be held in London, Llandudno, Birmingham, Bristol and Sheffield next year.

Sessions will include –

Epilepsy and medication to control seizures

Surgery for epilepsy

Vagus nerve stimulation (VNS)

Ketogenic diet as a treatment for children with epilepsy

Complementary Therapies

Personal experience of using VNS

It’s good to have options!

I found this blog on autism by ahmrita natrual health really interesting and there is a great link to about the neurodiversity movement.

Ignite Your Life Though Action

Thank you to Reflections on life thus far, for this response! http://reflectionsonlifethusfar.wordpress.com/

I am hoping to enlarge on this with some back up from a webinar I have seen this week and also an article about early behavioural interventions, which I am still reading.

I don’t believe Autism Spectrum Disorders are mental illnesses; rather, they are neurobiological disorders. They are a neurological difference instead of a sickness. Treating it as a mental illness makes it seem like the person with it is ‘not quite right’. True, some may have struggles and need coping skills taught to them for their particular challenges but I would certainly not deem them mentally ill. Autism is part of the person and makes them who they are.

It is a similar thing with dyslexia and ADHD. Although these conditions can make the person’s life difficult it’s better to find coping strategies. Many people simply…

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Epilepsy Drugs Free – Is It Possible to Fly Without Wings?

One year ago I opened my copy of Epilepsy Action ‘Epilepsy Today’ magazine to read the ‘My Journal’ experience pages. (1)

There before my eyes was the story of a lady so rare that she could be listed as an endangered species next in line to the Dodo.

The story read:

‘The Jury is still out on whether complementary therapies can be effectively used to treat epilepsy. After an initial seizure, Emma Wilkinson decided to try them for herself.’

‘There is very little available information about treating epilepsy naturally, without medication. If you ask your doctor about it, they will probably say that there is no scientific evidence to prove it is possible. Yet, I have done it – through natural health my seizures have stopped. After being diagnosed with epilepsy, I began upon a natural route. I have seen incredible results on my health. It is my hope that by sharing my journey, you may be inspired to look into the treatments that may be used alongside your medication.’(p 27)

Unfortunately although Epilepsy Action have started posting new issues of the magazine online the back issues are not yet up, so I will briefly outline Emma’s story.

Emma started having seizures in 2008 following a gym training session which caused her to develop a migraine and on the way home she had her first seizure.

After initial investigation and a tumour scare, her neurologist told her that a small area of her brain showed up as having died, and was harmless (not a tumour), but caused an increased risk of seizures. This condition was linked to head injury but Emma had never had one.

She had been living with Bulimia for 7 years at the time and was not sure when to tell her neurologist.

She was diagnosed with Primary generalised seizures and epilepsy in 2009, when she was offered anticonvulsant medication.

At this point Emma’s story deviates drastically from the one’s I have read about previously, because she decided to meet a natural nutritionist who listened to her concerns about the side effects of anticonvulsant medication.

She says she was cynical about meeting her nutritionist because she didn’t see how changing her diet could stop her having seizures; her doctors were quite clear there was something wrong with her brain. The nutritionist really listened to her which was the first time she felt this had happened.

Information was gathered about events surrounding her seizures, emotionally and physically, health from birth to present day, Family history of health and illness, her troubled relationship with diet and exercise.

The nutritionist was clear that she could not ‘treat’ epilepsy, but the aim was to improve migraines that seemed to be linked to the condition.

‘She (the nutritionist) explained that when we suppress illness symptoms, our bodies lose the ability to tell where imbalances lie. Her job was to understand those imbalances and teach me to treat them appropriately through gentle detoxification techniques.’(p 29)

Additionally, to help Emma reduce the stress of experiencing epilepsy.

Emma made dietary changes, created a tailored supplement programme using naturopathic techniques from the nutritionist.

Emma says ‘It was the first time since my seizure that I felt so optimistic. Rather than being consigned to a lifetime on drugs, I was given an option of trying a different way. In natural health I was expected to take an active part in my own healing process. I would rather that than passively accept a one-size-fits all drug.’

Emma’s friends and family had reservations but within 6 weeks Emma noticed fewer migraines with loss of vision.

Additionally she felt she had more energy, felt less stressed and craved less exercise, she felt the incentive to continue.

She also enrolled in counselling specifically to help with her bulimic symptoms. She went to psychotherapy. Understanding how her early life had formed her thinking, feeling and behaviour and how it affected her relationship with food. It also helped her come to terms with having epilepsy.

Things got complicated when she started her teacher training. Emma had to rely on public transport where before she could drive. Between the long journeys, work and pressure she became tired, relapsed into her old stress, exercise and bulimia problems and so a year after her first seizure she had another one.

Obviously she was devastated. With a second seizure came further loss of independence and driving. Her consultant said she was at 90% risk of more seizures.

‘After much deliberation, I came to terms with the fact that I was responsible for my own health. Perhaps another seizure was just part of the journey. It told me that something within my body was not right and needed to be addressed, rather than supressed. I could see that, despite having this second seizure, I had come so far with my health. I felt that I owed it to myself to continue. With renewed determination, I moved onto the most important part of my healing process. I didn’t want to simply work towards reducing the likelihood of having another seizure. I was finally prepared to understand what factors, other than diet, were causing them.’

Emma purchased ‘Treating Epilepsy Naturally’ by Patricia Murphy (2).

She started to receive acupuncture and zero balancing therapy in addition to nutritional therapy. She went to a complementary therapist for massage which helped her to manage stress.

Her migraines totally disappeared.

‘My overall health and vitality blossomed. I was experiencing a wonderful state of full health for the first time in ages. These practitioners have also helped support my body through detoxification. They have enabled me to get rid of negative thinking patterns. They have allowed me to understand how my emotions are mapped onto my physical body.’

Emma states that her ‘team’ of therapists helped her to come to the painful realisation that she thought she was unable to love and accept herself unconditionally.

‘All of this work helped me make lots of positive physical and emotional changes. It is only through this understanding of my physical body that I made the biggest achievement of all. I learned to believe in my own self-worth. I can love and respect myself.’

In December 2011 Emma had been seizure free since 2009 and was looking forward to a career in music and was experiencing good physical and emotional health.

Emma finishes by acknowledging the contribution that western medicine has had on epilepsy treatment options.

She goes onto say ‘Western medicine encourages us to believe that doctors hold the power and have the answers that will cure us. It does not encourage us to listen to what our bodies are telling us or try to understand why a seizure occurs. I have learned that full health is my right – but it is also my responsibility.’

Emma ends by saying that natural health offers a totally effective therapy that can be tried alongside medication. She thinks it can work for everyone.

Epilepsy Today have BIG red writing paragraphs underneath about there being no scientific evidence to suggest that any type of complementary treatment is successful in curing epilepsy; AND about using complementary treatment alongside anti-epileptic medication rather than on its own.

It also signposts to www.cnhc.org.uk Complementary and Natural Healthcare Council to find a trained and qualified complementary healthcare practitioner.

Personally there is a lot about Emma’s story that I could relate two, although the circumstances around our epilepsies are completely different.

I would also state that in my experience no anticonvulsant medication has ever ‘cured’ the seizures I experience.

I have also used a large number of complementary therapies on my epilepsy journey, and there is a small army out there who I need to thank.

Unlike Emma I do take anticonvulsant medication. I was very young when my seizures started and so never had the opportunity to choose alternative therapy as a sole treatment from the outset.

I sometimes wonder what it would have been like to try alternative therapy as my main source of treatment, and whether or not the drugs I have taken over the years prevent me from ever finding out.

I don’t know what research there is in relation to neurodevelopment when anticonvulsants are prescribed.

Research into Cannabis shows that this drug does affect neurological development (3), I wouldn’t trust a drug company to honestly state what anticonvulsant medications do to the developing brain, but I still take my medication. (4) I did have really big problems with learning on some medications.

Emma mentions a book by a lady who chose to treat epilepsy naturally; I have found a second in my search for natural treatment see (5).

From this I have concluded that the incidence of completely natural epilepsy treatment is very much like spotting an extremely rare bird, there isn’t a high incidence of sightings.

For me Emma’s story goes to show it is possible in some RARE circumstances to ‘fly without wings’ and go it alone without medication, and for her sharing her story I am grateful.

She might be rare but she is flourishing and that is really something to behold.

Emma BELIEVES she can fly.

Not everyone is so fortunate.

It has served to highlight to me how unique we really all are in our health needs, experiences and treatments.

1)      Epilepsy Action Magazine – Epilepsy Today Issue 110 December 2011 pages 27-30.

http://www.epilepsy.org.uk/news

2)      http://www.amazon.co.uk/Treating-Epilepsy-Naturally-Alternative-Therapies/dp/0658013793

3)      http://www.mcpap.com/pdf/Cannabis.pdf

4)      http://www2.massgeneral.org/childhoodepilepsy/child/index.htm#anticonvulsant

5)      http://books.google.co.uk/books/about/Treating_Epilepsy_Naturally.html?id=lj99VaBHSFcC

Anthony Clavien’s Alternative Therapies Worth Trying

intereasting thoughts on the value of combining alternative medicine with western medicine to optimise healing in an integrative way.

Anthony Clavien

hypnotherapy Anthony Clavien VeritasA new trend in Western medicine, including top medical schools like Harvard, is using the power of ancient cures.  Ok, maybe your doctor won’t ask you to do bee sting therapy or psychic surgery, but there are a few modalities in the alternative medicine field they may start to consider. The change of heart may stem from the fact that Western studies are now being done on these ancient practices, and the research is proving just how effective they can be!

This is not to say that one should quit going to their doctor, typically many of these therapies work best when mixed with traditional medical care.  In fact, informing your doctor of anything you are doing outside of their care is important, in order to ensure that problems don’t arise from potential contraindications.  “The future of medicine is integrative,” says Dr. Woodson Merrell, chair of the department of…

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Consciousness – The lighthouse at the edge of the ocean

What is the mind’s eye?

What is consciousness?

Fire that starts with a spark and gathers momentum as the timber burns?

Water springing from the ground, running to a river that flows to the ocean?

Space? We look out at the stars and imagine how they run on forever.

The seat of the soul.

In the brain?

Reading books on mind, brain and matter, pondering ‘the depths’ with writers, philosophers and neurologists.

What is it that makes me, you and us?

Is there a switch that gets turned on and off? Does it all go dark when the lights go out? Who, why or what turns the lights back on again?

What lies beneath?

The subconscious is an amazing beast

Like a rare species it hides from you when you go to look for it, and rises up to bite you in the bum when you least expect it.

Dreams that alert us to areas of life that need attention.

Bodies that record without us realising.

A computer or a quantum force? How are we alive?

Is it the third eye? Is it the  Shen? Is it God, biology or physics?

Is it all of these things?

I am alive (Thanks Mum and Dad!)

Our bodies can create new life, new consciousness.

How?

I only hope that I never cease to wonder at how this can be.

When I stop to think that it really is a miracle that I am here at all.

How I hope that when it all stops I have thought, felt and been present for as much of the time as I am alive.

We are here for just a drop in the ocean of time, it would be a sad to miss a single moment.

clarityclareblog link to tips to helping with mood and diet changes with seasonal change to winter. Very helpful diet information.

ClarityCareBlog

It’s the time of year where the light of the day shortens and many people begin to suffer from “Seasonal Affective Disorder” (SAD) which is depression associated with long periods of dark and gloomy weather. SAD suffers will often experience increased appetite, weight gain, increased food cravings, improper sleeping habits, a decrease in mood among a myriad of mental/emotional symptoms.

There is hope! With Homeopathy, a change in diet and the addition of Light therapy.

Homeopathy provides a safe and natural way to treat the symptoms of Seasonal Affective Disorder (SAD) and helps strengthen the immune system as well as boosting your spirits. Homeopathy takes an individualist approach to each person’s experience of coping with the symptoms of SAD. A personalised prescription is given to help stimulate the body’s own healing response and no two people would necessarily receive the same homeopathic treatment.

Light Therapy(also called Phototherapy)…

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Epilepsy in Chinese Medicine – ‘Towards a spirit of Peace’

‘Towards a spirit of peace’ is one of the most interesting texts I have ever read about epilepsy in the context of Chinese Medicine and is available on line. It is a work by an author named Subhuti Dharmananda, Ph.D. (see link below)(1).

This is NOT a text about epilepsy although it is covered, but rather it looks at a wider concept. The ‘Shen’ or ‘spirit’ in Chinese medicine and its embracing view of the body heart-mind in oriental medicine.

The ‘shen’ or ‘heart-mind’ is how I think about it in words, but mostly I would say ‘spirit of the heart’ is how I feel about it.

I feel that the role of the heart in Chinese medicine is seen as having a great deal to do with consciousness. From what I have read of Ayurveda it appears to be held as the same or similar.

In the west the heart is perhaps overshadowed by the brain’s electrical discharges, and the importance that is attached as the brain being the ‘hub’ of the body. (2)

The first chapter of this book goes to great lengths to explain the Shen, and so I will not go into it in depth, except to say that the heart is seen as ‘the Emperor’ in its role alongside the other organs of the body.

There are barriers that cause problems in understanding in relation to accessing information on Chinese medicine.

The Chinese language is written as ideograms, the sounds of the language all are totally alien to English language speakers. Variations in tone and pitch could be compared to learning to play a new musical instrument for the English tongue; a language that has you patting your head and rubbing your belly, and tap dancing all at the same time.

Then the philosophy, differences in thinking, the possible conflicts that arise from cultural, social, and religious beliefs.  The Great wall that surrounds China could be a metaphor for many barriers in understanding.

Why did I read this text?

The most beneficial part of my tai chi training by far has been in relation to training in awareness. Perhaps this is also called mindfulness? (3)

Without awareness I wouldn’t be able to feel seizures starting, I wouldn’t feel that my back hurts, my joints hurt and my belly is churning. Is my vagal nerve trying to tell me something? Is my anger or my fear or my grief making me ill?

I don’t know, but if I feel then I can try to understand.  If I am aware how I feel then perhaps I can change the emotion.

When I feel emotions, I am more likely to become ill, in particular if I don’t acknowledge them and where and how they have arisen.

This text talks about emotions in the context of ‘emotional equilibrium’ something I’m sure we all aspire to obtain but very, very few I suspect will achieve.

Even if we have fleeting glimmers of equilibrium, there may well be more emotional storms than sunny days.

Who feels good all the time anyway? Isn’t it part of being human to feel, in all the emotional colours?

My emotional storms are accompanied by lightening, this has given me extra motivation to want to look at how to heal them before they take a hold and turn into a thunderstorms.

It may be that describing it in words is not appropriate because it relates to feeling.

I don’t like being allergic to emotions.

The last time I cried for a day because I was sad, I had seizures for 2 days afterwards. I don’t know which is worse; crying because I am sad or the fact that if I cry then I’ll have a seizure.

Does this mean heart is broken?

I don’t think so, I still feel with my spirit the same as everyone else.

1)      http://www.itmonline.org/shen/index.htm

2)      http://www.wakingtimes.com/2012/09/12/the-heart-has-its-own-brain-and-consciousness/

3)      http://alysonyoga.wordpress.com/2012/11/04/whos-in-control-of-your-mind-one-benefit-of-mindfulness/

New Hope for Uncontrolled Seizures from Accross the Pond

An interesting post from accross the pond (click to link) from Epilepsytalk on new developments in medication for uncontrolled seizures.

Epilepsy Talk

A new type of anti-epilepsy medication that selectively targets proteins in the brain, controlling excitability, has been developed by Johns Hopkins led researchers.

The purpose of this revolutionary new drug is to significantly reduce seizure frequency in people whose recurrent seizures have been resistant to even the latest medications.

In a multinational, blinded, placebo-controlled trial of more than 700 people with uncontrolled partial-onset seizures, roughly one-third of participants saw the frequency of their seizures fall by more than 50 percent when they were given 8 milligrams a day of Perampanel. Those in this trial typically had about 10 seizures a day!

The participants in the study, reported in the journal Neurology, were all taking one to three anti-epileptic drugs before adding Perampanel (or a placebo) to their regimen.

Perampanel (Fycompa) is the first product in this class, because of its success inhibiting the excess activity of a glutamate receptor (AMPA) in…

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