National Epilepsy Week 19th May 23rd May 2013 What Treatment Do You Prefer?

National Epilepsy Week this week and there is a reason to celebrate, because this month Epilepsy Action magazine published an article about an epilepsy research project titled; ‘Which treatment would you prefer?’.

A very sensible question, its always nice to be asked what you want!

🙂

you can take part by following the information in this link;
http://www.epilepsy.org.uk/research/take-part/projects-you-can-take-part-in/patient-preferences-treatment-options

BIG THUMBS UP TO THIS PORJECT!

*Actually its full title is ‘People’s Preferences and Priorities for Treatment Options and Outcomes in Epilepsy’ but I like to get to the point.

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A video that will give you hope in the next generation

Trenton and Lindsay Cochran on caring and muscular dystrophy

TED Blog

Walt Cochran, a teacher in Kansas City, shared this touching video with us for Education Week about his children — one disabled, one not — who make you think about the depth of the sibling relationship. Lindsay, 10, suffers from a form of Muscular Dystrophy called Spinal Muscular Atrophy and has been in a wheelchair since she was 2 years old. Meanwhile her older brother Trent, 12, sees his role as not just protective older brother, but as an ambassador to remind others that kids with disabilities can do anything they put their mind to with the help of technology and support of loving relationships. Really, we dare you not to shed a tear while watching this.

This video feels especially relevant today given a comment we noticed on John Legend’s performance of “True Colors,” from Caroline Playle, who gave a talk at TEDxKingsCollege. She writes, “This just made me…

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Epilepsy Research Is Getting Cool So Your Brain Isn’t Smoki’n!

http://www.epilepsy.com/newsletter/may13/brain_cooling?utm_source=Epilepsy+Therapy+Project&utm_campaign=bc6a33ff69-Epilepsy_News_5_1_13&utm_medium=email&utm_term=0_cf0feb6500-bc6a33ff69-12439845

Following in the brain cooling tips of ‘The Lazarus Effect’(1) for cardiac arrest Dr Sirven of ETP (see link above) this week gives us the lowdown on brain cooling research for epilepsy treatment.

This excerpt says:

‘In the early view version of the journal, Epilepsia, Drs. Motamedi and colleagues from the Department of Neurology and Neurosurgery at Johns Hopkins University School of Medicine and the Department of Pharmacology and Physiology at Georgetown University School of Medicine present a critical review and opinion article. It is known that brain cooling, otherwise known as therapeutic brain hypothermia, is already a standard of care for a condition such as cardiac arrest in adults, or in neonates in the situation of hypoxic ischemic encephalopathy. However, there has been an increasing number of research papers that have looked at the concept of utilizing hypothermia to help control seizures that might be used as part of an implantable device to cool the brain in a specific region. In this well written review, Drs. Motamedi and colleagues discuss research innovations in developing cooling as a viable option for the treatment of drug resistant epilepsy.’

So should we all be booking holidays in Iceland or heading for our refrigerator’s frozen broccoli and bags of peas to get out of the heat?

Well it is a bit soon to tell, but as this article from Kaitllyn Roland (2) emphasises the importance of being sensible about the type of exercise you do, and how to take care about body temperature in particular if you are prone to seizures.

I for one won’t be booking my trip to Spain in the middle of August or trying to navigate the Sahara desert, but everyone has their limits!

I hope this article finds you chilling out with some sunny weather keeping cool in the shade, spring may have finally arrived in the UK, or is it our summer?. 🙂

1) https://epilepsymeandneurology.wordpress.com/2013/04/26/%ef%bb%bfheart-brain-and-out-of-body/

2))http://kaitlynroland.wordpress.com/2013/05/01/hell-being-competitive-and-hot-yoga/#comment-504

GREAT parkinson’s neuro recovery blog!

Kaitlyn Roland

This week kicked off brain awareness week… and the people over at sharpbrains.com debunked 10 myths around brain fitness… here are my 5 favourites!

Myth 1. Genes deter­mine the fate of our brains.

Fact: Life­long brain plas­tic­ity means that our lifestyles and behav­iors play a sig­nif­i­cant role in how our brains (and there­fore our minds) phys­i­cally evolve.

(we have some aspect of control and can create new neural pathways – say with exercise for brain change!)


Myth 3. Med­ica­tion is the main hope for cog­ni­tive health and enhance­ment.
Fact: Non-invasive inter­ven­tions can have com­pa­ra­ble and more durable ben­e­fits, and are also free of side effects.

(drug side effects are not necessary, but side effects – like endorphins – from exercise are encouraged!)

Myth 4. There’s noth­ing we can do to beat Alzheimer’s dis­ease and cog­ni­tive decline.
Fact: While noth­ing has been shown to pre­vent the pathol­ogy of Alzheimer ’s…

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Neurological Rock Stars 4 – Dai Greene Captain GB Athletics Team

http://www.epilepsysociety.org.uk/WhatWeDo/News/DaiGreenecaptainsGBteam

I came across this piece in epilepsy society about Dai Greene, a fellow welsh person and his inspiring athletics career. His career in athletics  has assisted him to manage his seizures without medication.

There is a link to an interview with Dai Greene in Epilepsy Review issue 2 2011.

He talks about combating common problems with epilepsy by health, lifestyle and sleep management.

He talks about the differences between his seizure management and his brother who also has epilepsy.

Really impressive and inspiring story!

Advice call after epilepsy drug Epilim study – Epilepsy Care In Wales BBC News

In the wake of the withdrawal of legal aid in the ‘Families who were pursuing a legal case against the makers of an epilepsy drug have dropped their action because legal aid was withdrawn’ BBC News January 20th 2011

http://www.bbc.co.uk/news/uk-england-london-21523434 London reporting on Pregnant women ‘unaware’ of epilepsy drug risks 25th February 2013, BBC Wales are now reporting:

http://www.bbc.co.uk/news/health-12242857

“Campaigner Nicole Crosby-McKenna, from Epilepsy Action, wants the Welsh government to review the way information is conveyed to pregnant patients in Wales.

She said: “We would like to know, if they haven’t got access to an epilepsy specialist nurse, who is giving the women that information? Are the GPs passing the information on to women? And also, do the GPs have enough specialist knowledge to accurately give them pre-conception counselling?”

http://www.bbc.co.uk/news/uk-wales-21733153

See BBC news links for full details.

Epilepsy, the National Health Service and the post code lottery – A Tale of Two, or Three or Many Postcodes

I have had some time to think about writing this post. It was sparked by my fellow bloggers post about the loss of her epilepsy nurse (1).

I do not have an epilepsy nurse. I had to put up quite a fight to keep my consultant neurologist.

First I would like to say thank you to my Consultant Neurologist and to my GP Doctors medical practice. I would like to say thank-you, you are all great and you are all doing the best you can in what appears to be increasingly difficult conditions in relation to funding health services in the UK.

But in relation to access to health care for epilepsy, this is my story.

As a child with epilepsy I saw my consultant pediatrician and was assigned to him until my 18th year when I finally became an adult under UK health provision.

He tended to my health care needs and oversaw my prescription medication. He was a lovely man and I was sad to hear he has now passed away.

I encountered the biggest problems with seizures whilst I was at college in my late teens and early 20’s. I had moved away from my home hospital in Wales and after a couple of years ended up in England.

There did not seem to be any plan for who would oversee my medication and epilepsy care. I think on reflection that this was at a time when there were no National Institute of Clinical Excellence (NICE) guidelines for epilepsy care (2)(3) in the UK. Through organisations like Epilepsy Action (4) awareness of the importance of epilepsy care has also grown amongst health care professionals.

My GP (General Practitioner) in England was in charge of my medication and decided to change it. The change was made (as it always is) in my best interests. When I had a significant deterioration in seizure control because of the new medication it took 2 years for me to be assigned to a Consultant Neurologist in a different county in England.

England has different health care arrangements by different County’s much like Wales, but these shift depending on where the specialist services are located.

The consultant who I was assigned to was an expert in his field, but he had a LOT of patients and not a lot of time for me. This experience was not a positive one.

I moved from one county in England to another county, and despite significant problems with seizures there really wasn’t much help from my then neurologist because he just gave me more and more medication which didn’t work.

It is difficult not to want to apportion blame, but I have come to the conclusion that when things go wrong rather than being one person’s fault it is in fact a huge system failure that by and large results in poor health care.

I think that medication is seen as the cheapest option and therefore, for a lot of people the only one.

Finally after some years, my GP decided to take action and referred me to a new Neurologist. This is the one I see to this day. I hold him in high esteem and think he is very thorough. He does listen to me, even though we have differences in opinion.

The problem with this was we had to start from scratch.

He left no stone unturned in the search for my brain squiggles (EEG), and although it took years for him to confirm that I am indeed epileptic, at least I now have closure on this. It made me highly anxious that there may have been some possibility that I could have a brain tumour, scar or be so deeply troubled that I might be able to lose consciousness and go blue and have convulsions all by myself. Then there were the lights, headaches, myoclonic jerks and medication side effects as well as partial seizures.

I could access the epilepsy nurse under my Neurological Consultant in England.

I will never be able to thank my neurologist enough for removing most of my medication.

I can now think.

But it wasn’t over there.

I am now back in Wales and continued to see my neurologist in England without any problems for several years. I did not have an epilepsy nurse, but that didn’t matter so much because I was assigned to a specialist neurologist.

Then the local health board was re-arranged to create a different funding structure a few years ago.

The county where I live does not have a Specialist Consultant Neurologist for Epilepsy or Epilepsy Nurse.

One day I got a letter from the hospital in England saying that my health board were no longer going to pay for my neurological consultations.

This decision had been taken by the local health board without assigning me to a Consultant Epilepsy Neurologist in Wales, or Consulting my General Practitioner or my consultant neurologist in England.

I was absolutely furious. I made a complaint with the help of an NHS Advocate.

I was not able to see my consultant for a year.

It took the health board that long to work out that they would have to pay for me to see a Consultant Neurologist in Wales if they did not continue to fund my trips to England.

As part of my complaint I asked the health board to tell me what they planned to do about access to epilepsy services in Wales.

Then there was a change in Government.

I am now deeply troubled by the current government’s ideas about private health care. (5)(6)

My health has suffered because there was not a joined up service. Under the new proposals, the NHS would be more open to private companies and further fragmentation.

I have seen how private companies and fragmentation has negatively affected the welfare state in Britain.

I find it deeply troubling that more and more people not just with epilepsy but with other health problems will fall through the gaps or face charges for care when there is no money.

If your health is poor you can’t work.

I feel like I have to do all the health care work for myself.

I still don’t have an epilepsy nurse.

In comparison to some countries I obviously feel grateful to have health care at all.

This is not everyone’s experience of epilepsy care in Britain, but it is mine.

1) http://rosewinelover.com/2013/02/25/you-wont-be-seeing-frank-any-more-hes-no-longer-here/

2)http://publications.nice.org.uk/the-epilepsies-the-diagnosis-and-management-of-the-epilepsies-in-adults-and-children-in-primary-and-cg137

3)http://publications.nice.org.uk/the-epilepsies-the-diagnosis-and-management-of-the-epilepsies-in-adults-and-children-in-primary-and-cg137/key-priorities-for-implementation#management

4) Epilepsy Action http://www.epilepsy.org.uk/

5) http://www.bbc.co.uk/news/health-21649307

6) http://www.bbc.co.uk/news/health-21703667

Neurological Rock Stars 3 – Epilepsy Therapy Project

http://www.epilepsy.com/newsletter/feb13/cc_dietary_therapy?utm_source=Epilepsy+Therapy+Project&utm_campaign=8077df411a-Epilepsy_News_2_27_13&utm_medium=email

Whether or not you are new to epilepsy The Epilepsy Therapy Project is a great resource which provides an all round look at epilepsy, medication, mind, body and diet (even spirit 🙂 although possibly not the alcoholic type which will interfere with medications ).

In terms of information resources the latest newsletter focuses heavily on epilepsy diet and so I have posted the article by Patricia Osborne Shafer RN, MN Resource Specialist, epilepsy.com. It is a very good article about Modified Atkins Diet for epilepsy as a successful story of an alternative to drug based treatment or in conjunction with medication.

Additionally, in the same Newsletter is an equally valid an interesting post on Modified Atkins Diet in Children:

http://www.epilepsy.com/newsletter/feb13/modified_atkins_dre?utm_source=Epilepsy+Therapy+Project&utm_campaign=8077df411a-Epilepsy_News_2_27_13&utm_medium=email

Similar therapies are the Ketogenic diet resources to be found at these links:

http://www.google.com/cse?cx=005246551797440562563:wb-yegiey0w&q=ketogenic%20diet%20epilepsy&oq=keto&gs_l=partner.3.0.0l10j34.688606.689292.0.692368.4.4.0.0.0.0.97.337.4.4.0.gsnos%2Cn%3D13.1.0.0.2449j3313169j5..1ac.1.Q7dWzb3EYz4#gsc.tab=0&gsc.q=ketogenic%20diet%20epilepsy&gsc.page=1

You can sign up for the Epilepsy Therapy Project newsletter to be sent straight to your email account.

The information on diet for epilepsy may shed light on why if you like me are epileptic you may have difficulty going to straight vegetarian or vegan diet (although if you have experience of success with either of these and epilepsy I would love to hear from you).

http://www.epilepsy.org.uk/info Epilepsy Action Provide information and advice about epilepsy in the UK

THANK YOU ONCE AGAIN Epilepsy Therapy Project!

Epilepsy and Exercise Study and Epilepsy at the Olympics – ‘Exercise is good for the brain and the heart, and everything else’ Dr. Elinor Ben-Menachem from Göteborg University.

This week I was listening to the ETP (1) blog cast and was really inspired by the post on the work of DR Elinor Ben-Menachem on her project on exercise and epilepsy as discussed with Dr Joseph Sirven.(2)

Topics discussed:

Raising seizure threshold by exercising more.  Low cardiovascular fitness related to 79% higher risk of developing epilepsy after age 18.

Exploring the importance of exercise before the age of 18 in the importance of prevention of health problems in later life, including epilepsy. The possibility that exercise may be an inexpensive way of managing seizures is also mentioned.

Her message is that exercise is ‘good for the brain and the heart, and everything else’.

Full transcript (3)

Also of interest Dr Ben-Menachem’s Hot Topics Symposium Modulators of Epilepsy:  The Influence of Lifestyle and Environmental Factors (4)

This research presentation is interesting because it covers neuroplasticity, the hippocampus, the role of exercise in preventing central nervous system diseases, cardiovascular fitness and the future risk of epilepsy. Hormones are also discussed. The Hypothalamic Pituitary Testes and Ovarian axis is covered, together with progesterone treatment trial.

The hypothesis is: cardiovascular fitness could modulate brain plasticity by increasing amounts of circulating growth factors or beta endorphins or some other neuroactive molecule.

Dr Ben-Menachem discusses the Olympic silver medallist cyclist Marion Clignet (5) who was not allowed to race for America at the Olympics so she cycled for France instead. Marion has written a book called ‘Tenacious’ with a fellow sportsman yachtsman Benjamin Hovey who also has epilepsy see here (6) (7)

Further athletes with epilepsy at the Olympics can be found at (8) The Epilepsy Institute of North Carolina blog. Worthy of note in this blog post:

‘Dai Greene played football (soccer for us since he’s British) when he was a teenager.  He had to quit playing soccer in his late teens due to a growing spurt that causes knee pain.  It is called Osgood Schlatter Disease.  He now runs the 400m hurdler for Welsh and Great Britain.   Dai had his first seizure at seventeen.  He doesn’t take any medication; instead he doesn’t drink any alcohol and makes sure he gets the right amount of sleep needed.  Several medals have been won and he will be Captain for the Great British Athletics Team.’

This is very promising from the point of view of the possibilities of using alternative means to control seizures and giving people options beyond medication.

Dr Ben-Menachem has also written a book called Case Studies in Epilepsy (Case Studies in Neurology) [Kindle Edition] (9) This book looks very interesting and although it is out of my price range the initial ‘look inside’ was very promising so if you can find it at a library resource it may be very useful.

Dr Ben-Menachem covers barriers that prevent people with epilepsy from exercising such as; over protection, social isolation, low self-esteem, anxiety and depression. She mentions that weight can be a problem.

I would add one other problem area facing people with epilepsy and exercise which is ‘stigma’; either because of society, weather it is because of lack of understanding of epilepsy or ignorance of what epilepsy is and that it is important to exercise no matter what the health problem.

Exercising in groups is recommended.

Some useful strategies for safely exercising with epilepsy are covered in this blog post from Rosewinelover epilepsy action media volunteer;

http://rosewinelover.com/2013/01/04/epilepsy-and-fitness-resolutions-for-2013/

For myself I can say that without exercise my personal seizure management is extremely challenging because I experience so many positive benefits from exercising. (10)

Happy Exercising Everybody!

1)http://www.epilepsy.com/epilepsy/hallway_2013_podcasts?utm_source=Epilepsy+Therapy+Project&utm_campaign=535342f2b3-Epilepsy_News_2_20_13&utm_medium=email

Epilepsy Therapy Project

2) http://www.gu.se/english/about_the_university/staff/?languageId=100001&userId=6850

3) http://professionals.epilepsy.com/pdfs/Exercise%20and%20Epilepsy%20-%20HC%20-%201_9_13.pdf Epilepsy Therapy Project Blogcast Transcript

4) http://www.hope4harper.com/wp-content/uploads/2012/12/The-Influence-of-Lifestyle-and-Environmental-Factors.pdf

5) http://en.wikipedia.org/wiki/Marion_Clignet

6) http://marionclignet.com/

7)http://marionclignet.com/tenacious

8) http://epilepsyinstitute.blogspot.co.uk/2012/07/epilepsy-and-olympics.html

9) http://www.amazon.co.uk/Case-Studies-Epilepsy-Neurology-ebook/dp/B00A8GYWBO

Case Studies in Epilepsy (Case Studies in Neurology) [Kindle Edition] Hermann Stefan (Author, Editor), Elinor Ben-Menachem (Author, Editor),Patrick Chauvel (Author, Editor), Renzo Guerrini (Editor)

10) https://epilepsymeandneurology.wordpress.com/2012/12/26/what-do-epilepsy-autism-hormones-sleep-music-meditation-exercise-have-in-common-the-hippocampus-and-neurogenesis/

How do beliefs interfere with and prevent recovery? Is there a happily ever after to your fairy story?

I have been recovering from epilepsy for a long time and have become interested in reading a great deal about belief in relation to health and wellbeing. Other bloggers have touched on it recently, for example an excellent post from the http://workitwell.wordpress.com/2013/01/18/what-are-your-core-beliefs/

was titled ‘what are your core beliefs’.

Belief is a big word with few letters. Thinking about it might bring up ideas about your-self, others, religion, believing in something not believing in something, maybe even right and wrong.

So at what stage in your life did you start asking questions about the tooth fairy and Santa Clause?

Why do we believe what we believe and at what point do we begin to ask questions about these beliefs?

In the context of religion for example, asking questions about faith could be a welcome part of the discussion within a place of worship. Spiritual leaders may encourage debate about beliefs and use them as an opportunity to Shepard their flock to safer pastures.

However examples of how much resistance has been encountered in relation to changing beliefs can be found throughout history.

One such example of this would be the geocentric model (1) of the earth as the centre of the universe, and the resistance faced by Galileo Galilei (2) when he tried to present his case that things might be different.

Without reconsidering and changing beliefs such as the Earth as the centre of the universe, humans may never have made it to the moon. We could still be trying to leave the ground instead of taking into account new physics to take us upwards on an evolutionary path towards new technologies.

Can you imagine what would have happened if Galileo had suggested that you could communicate with people the other side of the world on an electric light box?

Bearing this in mind, how difficult is it for us to challenge or own beliefs and those held by people who are charged with our health care?

This type of difficulty is well illustrated by the distressing experience of Well Call me crazy here:

http://wellcallmecrazy.wordpress.com/2013/02/16/the-irony-of-it-all/

Having had experience of how difficult it can be to hold the ‘reflective mirror’ up to myself at what point do you question the beliefs of your doctors?

It is a sad fact that the men in white coats are often given great power by us. We look to them to answer our health problems but sadly don’t question their fallibility, and even if we do we can easily be put off by the sheer dazzling power of the white coat complex.

‘With great power comes great responsibility’ (star wars), which is sadly often abused. Pharmacy is big business and there are many millions of billions of motivations why modern medical culture doesn’t encourage us to ask questions about what is in our medication, how does it work, and what is it doing to the body?(3)

Great strides have been made by modern medicine in the mechanistic understanding of the body and yet the deities charged with our health care are only human. Why do we not ALWAYS ask what are you putting into my body?

A lot of people like my-self may have had the experience of being told that they would be on medication for life and that they need to be cured.

I prescribed to this belief for many years, despite experiencing side effects that were detrimental to my health and emotional wellbeing. This belief was driven simply by the fact that I thought my doctors new best. As a result of taking medication without question I didn’t get any better and ended up with significantly more health problems as a result.

I can’t remember exactly when I began to question the men in white coats, but I can remember that it was after I began to seek help from a white coat who went against the grain and decided to reduce my medication. The problem was it was turning me into a zombie – and zombies defiantly don’t think for themselves or ask questions.

My white coat was actually not convinced that I was epileptic at the time, so although I have to give him some credit for removing the medication it wasn’t because he had acknowledged that I am epileptic; although this did change once he had removed enough medication to find my EEG.

Whilst alternative therapies continue to be held up as many things (including the last resort for patients such as myself) there are a number of common denominators that I feel are important to mention.

The power of belief.

I have been following the work of Lissa Rankin MD.(4) You may have seen her TedX talk which I have posted at the bottom of the page. The placebo and nocebo effects are covered and Lissa speaks about the work of the institute of noetic Sciences (5) spontaneous remission project.(6)

Lissa’s blog has recently run a 4 part series http://lissarankin.com/is-it-your-fault-if-you-cant-heal-yourself-part-1 which asks is it your fault if you can’t heal yourself? This question in particular is relevant to recovery from ill health and was sparked as a result of the suggestion that we perhaps may be able to heal ourselves without medication and/or despite it.

Lissa’s work is an encouraging step towards introducing the notion that the body and mind may be intrinsically woven together in a more complex way than is currently outlined by modern Big Pharma medicine.

Would now be an appropriate time for Western medicine to start asking questions about how the mind is woven into the fabric of the body? Or is it too much of an expensive and painful prescription to swallow for Big pharma?

For me I it is not too late. I have had the lights turned on. The fog has lifted, and now I can ask questions.

For years I have been labouring under the impression I can’t learn, but last year I went to college and got 88%, 84% and 69% in exams in the same month as having seizures all month. I have spent this week twitching and seizing but I can still think.

The question had to be how?

All the time I couldn’t think I believed it was because I have epilepsy.

Now I have come to the conclusion that this isn’t so. I couldn’t think because I was on vast quantities of mind bending prescription medications.

I have had to address my core beliefs.

It has been very challenging and I still haven’t had time to integrate this new view of myself into my mind and body.

Socially epilepsy can be a very stigmatising health problem to experience. My experience has made me question how much society, attitudes, and beliefs play a part in recovery.

Thankfully I feel like I have been given a second chance. Realising that I can think and study has meant that I can go back to college to study with the support of my family.

Maybe one day we will all believe that the body, mind and environment are linked and that they are all as necessary for health as each other; just like we can now see we are only a small planet in a solar system in a universe that doesn’t revolve around us – or does it?

This post below illustrates how a different world view can influence recovery, and how diet is important to blood chemistry.

http://freeupliftingbooksonline.wordpress.com/2013/02/15/cup-of-green-juice-for-life-eating-light-with-michiyo-mori/

Why do we consistently reach for pills when diet can be so powerful?

It is sad to think that so many people may never know who they are without medication. I am glad that I found out.

http://www.youtube.com/watch?feature=player_embedded&v=LWQfe__fNbs

Lissa Rankin MD TEDX

1)http://en.wikipedia.org/wiki/Geocentric_model#Historical_positions_of_the_Roman_Catholic_hierarchy  Geocentric model

2) http://en.wikipedia.org/wiki/Galileo_affair

3)http://www.alternet.org/story/147318/100,000_americans_die_each_year_from_prescription_drugs,_while_pharma_companies_get_rich

4) http://lissarankin.com/is-it-your-fault-if-you-cant-heal-yourself-part-1

5)http://noetic.org/library/publication-books/spontaneous-remission-annotated-bibliography/

6)http://noetic.org/research/program/consciousness-healing/