Another Rare Drugs Free Sighting! Flying without wings – someone who got off anticonvulsants!

I am very excited!

A couple of weeks ago I blogged about ‘Epilepsy drugs free – is it possible to fly without wings?’

This was about the one and only person I have ever read about managing epilepsy without anticonvulsant medication.

BUT I am happy to announce I was wrong!

There is MORE than one!

I have discovered a blogger who has recorded her journey towards anticonvulsant free epilepsy management and put it online!

It’s like Christmas! Well it nearly is in 3 weeks!

The link to the blog is here:

http://epilepsycure.blogspot.co.uk/search?updated-min=2011-01-01T00:00:00-08:00&updated-max=2012-01-01T00:00:00-08:00&max-results=12

The blog, somewhat ambitiously titled ‘The Epilepsy Cure’ (Well why not reach for the stars?) Caught my eye straight away!

The first blog is January 2009

http://epilepsycure.blogspot.co.uk/2009_01_01_archive.html

And describes how the journey began.

The final blog is September 2011

http://epilepsycure.blogspot.co.uk/search?updated-min=2011-01-01T00:00:00-08:00&updated-max=2012-01-01T00:00:00-08:00&max-results=12

In a nutshell this medical student blogged her way through coming off medication and has road tested nearly every natural therapy for epilepsy known to mankind. Not only that but at the end she and her partner are about to become 3!

Not a nearly extinct species either!

She emphasises this is not a guide, and that anyone reading should do their own research, but it really is a good read!

Enjoy!

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/

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

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/

Amino Acids for Mood

Amino Acids for Mood.

This is an interesting blog entry about amino acids that relate to brain chemistry and mood, relevant to anyone with or without epilepsy!

How to improve the amino acids in diet for mood and where to find the amino acids.

Epilepsy and the Circadian Rhythm – Do you dance to the beat of your own drum?

Exercising for many people can be a struggle, because of body image, obesity, lack of time or just lack of interest.

For myself it was seizures that were very much inhibiting movement.

One of the important factors in turning that around was the discovery of the Circadian Rhythm (1) and how it impacted on my hormones and seizure patterns.

I have always had difficulty keeping my alter ego ‘Wareruth’ under wraps. Husbands across the globe will hold testament to the fact that their nearest and dearest turn into unrecognisable creatures, with gnashing teeth that can only be consoled with chocolate bribes when the moon gets fat. For women with epilepsy this may be compounded by the problems that ‘Catamenial’ (2) epilepsy and oestrogen and progesterone fluctuations cause (3).

Since childhood I have always been more likely to have seizures on a monthly basis resulting from hormones, although it is not the reason why I have epilepsy.

I now monitor the situation closely and have found that my seizure pattern has changed over the years. This appears to be in time with the progesterone and oestrogen monthly cycle.

Changes in oestrogen production also occur around pregnancy. In women with epilepsy it also can cause marked changes at menopause as well (4).

Interestingly migraine is also commonly linked to the monthly cycle in some women (5).

Personally I find that pain management becomes a high priority at this time, my body in particular my back and my joints get really sensitive.

After trial and error no medication has controlled this.

On realising this was the case I had to find out how to ‘go with the flow’ sought of speak.

Traditional Chinese Medicine and Ayurveda seemed to be helpful because of their understanding of the endocrine system.

I would be very interested in finding out more about what Ayurveda has to say about epilepsy, the model I am most familiar with is TCM.

TCM (Traditional Chinese Medicine) is based on the Five Element model (6). Within this model holds the key to understanding how seasons in the year and times of the day are attributed to different organs in the body (also known as the Circadium rhythm or biorhythms), and how these impact on the body.

For example the Kidneys are linked to winter and the element Water. The TCM model also incorporates the emotions into this model so the emotion that is attached to the kidneys is fear. The endocrine system is very sensitive to emotions (7),so understanding your emotional make up is a useful tool for managing potentially damaging emotions such as stress which may impact on epilepsy management.

Using methods like yoga – in particular Hatha yoga, ‘yin yoga’ (8) and Qigung (9); have brought me some relief from epilepsy symptoms, this includes meditation exercises of any form.

Yin Yoga, in particular, I found very helpful for acute problems at the wrong time of the month. Yin yoga postures that allow for supported deep relaxation on the floor allow me to feel in a place of safety as well as relax, stretch and release tension. My living room floor looks like a sofa the amount of cushions and blankets I use!

Having spent much of life hitting the floor, feeling safe on it is very reassuring. Letting gravity take its course without going south can be a good thing.

Equally I have found that standing poses in tai chi practice (although nothing in riding horse stance – sitting down into hips with legs wide apart this causes dizziness and nausea for me). Standing in Bear posture with feet shoulder width apart so the Kidney 1 points (10) on both feet are firmly anchored to the ground can also be highly beneficial for hormonal problems (I find).

Sadly wanting to run around and play with my friends is not something that results in good seizure management when my body is at its most sensitive. Neither is activating the sympathetic system. There is a delicate balance between doing too much and too little. I defiantly don’t want to be rolling around or standing on my head at high risk times.

I’m not saying I wrap myself in cotton wool, but from my experience pushing to exercise my body when it’s vulnerable can cause further seizures. If I listen to my body and give it some respect when it needs tender loving care, problems don’t crop up so much.

Throughout the day, one of the most positive changes that has helped in my seizure management was being able to lye down for 20 minutes at lunch times.  This is either to close my eyes and rest or meditate. This meant that I have a chance to de-stress, re-charge and avoid overtiring which caused further seizures.  This has really reduced seizure problems associated with overtiredness and stress.

My Qigung and tai chi instructors (11) are very passionate about ‘lying chi gung’. The hours between 11am and 1pm are known as ‘heart time’ on the Chinese Clock and for this reason it is identified as a good time to rest the heart.

Although this is not an exact science – like the rhythm method of birth control (don’t take risks – I always take my medication), having some understanding of how hormones can be managed through exercise or not has been really helpful to me.

For the best results I find continual practice of yoga or chi gung and tai chi are what is most effective in order to have preventative and long term health benefits.

It is unfortunate that my favourite pastime – calculating how many endorphins are in one cubic centimetre of chocolate Marsbar – is probably not helpful to my hormone balance or blood sugar! 🙂

If you have epilepsy and have any experience of the above I would be very interested in hearing your management strategies and any tips are always welcome!

If you have any experience of complementary or integrative medicine I would also like to hear your thoughts on this as I find it fascinating and would welcome hearing from anyone else’s experience.

I like dancing, finding my own beat has meant that I can enjoy the music of life.

1)       http://www.jcircadianrhythms.com/

2)      http://www.epilepsy.org.uk/info/women/your-periods-menstrual-cycle

3)      http://www.waterstones.com/waterstonesweb/products/michael+r-+trimble/women+and+epilepsy/3569072/

4)      http://professionals.epilepsy.com/page/hormones_menopause.html

5)      http://www.patient.co.uk/health/Migraine-Triggered-by-Periods.htm

6)      http://www.tcmbasics.com/basics_5elements.htm

7)      http://candacepert.com/biography/

8)      http://www.sarahpowers.com/

9)      http://en.wikipedia.org/wiki/Qigong

10)   http://www.acupuncture.com/education/points/kidney/kid1.htm

11)   http://www.uktqf.co.uk/

A Breath of Fresh Air – Post viral O2

There is nothing like influenza to boost catch up reading.

Ironically the book I chose to read was called ‘The Revelation of the Breath’ by Sharon G. Mijares Editor.

This collection of short essays on breathing did at least serve the purpose of ramming home to me why I was sick in the first place (unhealthy breathing patterns). It is a fabulous introduction to many breathing techniques from east to west, religious, spiritual and medical.

What I particularly liked about it was an article on breathing for Aikido by Darrell Bluhm Shihan.

I really like aikido but have never read up on it in particular because my teacher who is a bit of a traditionalist, put the emphasis on ‘doing’ not ‘reading’.

When I asked if there were any books he recommended he told me in no uncertain terms that it was practice not reading I should be concentrating on.

Fair point really.

But this book is really good  at explaining breathing techniques, their purposes and the philosophy, physiology and psychology behind them.

I was particularly taken by Buteyko for asthma, sleep and apnoea, and Rebirthing completely reframed birth trauma. The section on Freediving was quite revealing. Personally holding my breath is not an area I have ever explored (one of the diving instructors I met said that underwater diving and epilepsy aren’t a good gas and air mix).

Maybe I’ll just have to practice pausing between air intake and exhale for now. There are lots of rhythms to use after all.

Breath can be energising or relaxing, exciting or tranquil. Huffing and puffing can be quite good fun 🙂

I like that someone took the time to write about how breathing can be a revelation.

Make of it what you will I hope you enjoy this book as much as I am.

Here is a link to view it, also available from Amazon.

http://www.sunypress.edu/p-4912-the-revelation-of-the-breath.aspx