life at full volume – meditation and diet fatigue fighting and side effects of anti epileptic drugs – GREAT blog!

Life at Full Volume

550131_425393197537643_1221104998_nAs a person living with epilepsy, I not only fight seizures, but I fight fatigue. And I fight fatigue with a mighty vengeance, baby. You’re probably wondering why I’m so fatigued. Well, I’m on a lot of Anti Epileptic Drugs (that’s just a fancy way of saying medication, but I kinda like Anti Epileptic Drugs. It sounds fancy!) and a common side effect of all of them is fatigue. So I can easily have a solid eight hour sleep and still feel tired throughout the day. It’s not the kind of tired where it’s like “Oh, a little coffee could cure this!” It’s the kind of tired where you feel like you could fall into bed and sleep for hours. And hours. And HOURS. But the thing is, sleep does absolutely nothing to fix this side effect. In my opinion, it just makes it worse, because you’re throwing off your…

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Get Plugged Into Earth – Thanks Anne!

http://www.bbc.co.uk/iplayer/episode/b01r5s20/Ramblings_Series_23_Michael_Weltike_Barefoot_Walker/

Thanks to my chi-gung  teacher for sending this link to aBBC radio barefoot walk and talk about the benefits of barefoot walking.

How to be more grounded with these steps :

Take of your shoes and socks, walk on the ground outside, OBSERVE how you feel when your feet are on the ground!

Simple, and free!

We live on a big round  Earth! 🙂

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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And Now For Something a Little Bit Different … Epilepsy and the Electromagnetic Spectrum – What’s the frequency Kenneth?

This post started out as something else. I wanted to talk about my relationship with the electric light box and was looking for information on television and computers and epilepsy. BUT, like many of my searches this one turned into an EPIC surf.

Way back in the days when there was such a thing as black and white televisions, I had my first seizure in front of one. It was the first of many, but since then my relationship between TV, strip lights, computers, patterned carpets and mobile phones has been ‘complicated’.

One of my friends told me that her friend with epilepsy couldn’t put a mobile phone within 3 inches of her head without having a seizure. I am not quite that bad, BUT I always wanted to know why?

Photosensitive (1) epilepsy according to Epilepsy Action is experienced by about 3 in every 100 people with epilepsy. Most people with photosensitive epilepsy are sensitive to 16-25 Hz. Some people may be sensitive to rates as low as 3 Hz and as high as 60 Hz.’

For people with photosensitive epilepsy the number of times a computer screen or television ‘refreshes’ or flickers may case a seizure.

With the dawn of a digital age things have changed slightly (a lot!) since I had my first seizure and so liquid crystal screens have replaced the old cathode ray tubes in televisions that used to be such a bother to people with the wrong seizure threshold. This is obviously for the better in my case! (2) However the risk has not been completely removed because the newer screens are brighter and have more contrasting colors.

Is it me or does anybody else find the electric light box just a teensy, weensy bit hypnotic??

Obviously new technology has brought many benefits to the epileptic brain, for example MRI scanning, EEG, FMRI scanning, TMS, CAT scans and of course for anyone with broken bones there is the X-ray.

Now there is even have electric stuff they can attach to your head for seizures see Epilepsy Talk post (3)

Where would we be without the magnetic resonance image? And just what is an FMRI? Online research studies are so plentiful that you’d think in China FMRI is the new ‘digital camera’ of brain research, and everyone else is ditching Polaroid fast to follow not far behind. The American Military find photographing the brain with FMRI quite fascinating as well. Has to make you wonder –WHY? There are some quite interesting studies about ELF and the brain coming from China as well (4) and there are some detailed studies of radio-frequency and Electromagnetic fields online (5)

(6)Functional Magnetic Resonance Imaging is described by wiki as;

‘The fMRI concept builds on the earlier MRI scanning technology and the discovery of properties of oxygen-rich blood. MRI brain scans use a strong, permanent, static magnetic field to align nuclei in the brain region being studied. Another magnetic field, the gradient field, is then applied to kick the nuclei to higher magnetization levels, with the effect depending on where they are located. When the gradient field is removed, the nuclei go slowly back to their original states, and the energy they emit is measured with a coil to recreate the positions of the nuclei. MRI thus provides a static structural view of brain matter. The central thrust behind fMRI was to extend MRI to capture functional changes in the brain caused by neuronal activity. Differences in magnetic properties between arterial (oxygen-rich) and venous (oxygen-poor) blood provided this link.[7]

So obviously for brain imaging this is a very useful piece of technology.

Then there is TMS or Transcranial Magnetic Stimulation. (7) TMS has some seriously interesting effects on the epileptic brain.

‘Transcranial magnetic stimulation (TMS) is a noninvasive method to cause depolarization or hyperpolarization in the neurons of the brain. TMS uses electromagnetic induction to induce weak electric currents using a rapidly changing magnetic field; this can cause activity in specific or general parts of the brain with minimal discomfort, allowing the functioning and interconnections of the brain to be studied. A variant of TMS, repetitive transcranial magnetic stimulation (rTMS), has been tested as a treatment tool for various neurological and psychiatric disorders including migraines, strokes, Parkinson’s disease, dystonia, tinnitus, depression and auditory hallucinations.’

Could this explain why a mobile phone could cause a seizure? What are the risks of TMS?

‘Although TMS is often regarded as safe, the greatest acute risk of TMS is the rare occurrence of induced seizures and syncope.[4] More than 16 cases of TMS-related seizure have been reported in the literature, with at least seven reported before the publication of safety guidelines in 1998,[5] and more than nine reported afterwards. The seizures have been associated with single-pulse and rTMS. Reports have stated that in at least some cases, predisposing factors (medication, brain lesions or genetic susceptibility) may have contributed to the seizure. A review of nine seizures associated with rTMS that had been reported after 1998 stated that four seizures were within the safety parameters, four were outside of those parameters, and one had occurred in a healthy volunteer with no predisposing factors. A 2009 international consensus statement on TMS that contained this review concluded that based on the number of studies, subjects and patients involved with TMS research, the risk of seizure with rTMS is considered very low.[4]

Besides seizures, other risks include fainting, minor pains such as headache or local discomfort, minor cognitive changes and psychiatric symptoms (particularly a low risk of mania in depressed patients).[4] Though other side effects are thought to be possibly associated with TMS (alterations to the endocrine system, altered neurotransmitter and immune system activity) they are considered investigational and lacking substantive proof.[4]

All very interesting studies that relate to the use of electromagnetic technology and brain science.

So what other studies have been carried out?

Solar Power

Perhaps the most unusual studies I have read about are those carried out by scientists in Calcutta. (8)

Correlation between convulsive seizure and geomagnetic activity.

Rajaram M, Mitra S.

Abstract

‘The annual percentage of patients with convulsive seizure in the Neurological Department of the Bangur Institute of Neurology, Calcutta, is found to be significantly correlated with the annual values of sunspot numbers and geomagnetic activity indices for the period 1955–1971. For a particular geomagnetic activity index the correlation coefficient is significant at a 99% confidence level. The study shows that a proper choice of elements in the series is important in studies undertaken to establish the biological effects of solar activity.’

One blogger has even explored his wife’s relationship with solar flares (9) and in February 2011 the epilepsy.com forum (10) became host to a really interesting conversation and debate about the effects of solar and geomagnetic stress on epilepsy. If you like me think that lunar events effect your seizures then check out the solar activity!

At Aaron’s reality blogspot (11) he writes the hypothesis on solar flares –‘With this compression of the earth’s magnetosphere pushes the electrical fields in the neural network from their neurons. This shuts down the brain. The body reacts by sending signals back to the medulla oblongata. This low level neural network is more robust. With every autonomic contraction the body is trying to send low level input data back to the brain. This slow recovery is necessary.’

I thought that a report on how vitamin D deficiency has been found to improve seizure control was interesting because of the vitamin D production in the skin when exposed to sunlight. (12)

This you tube video sums up nicely some of the unusual results of solar research and the brain. (see abouve).

In relation to geomagnetism one study appears to be making comparisons to human EEG measurement and earthquake measurement.

For me this begs the question; ‘During a seizure is your body having an earthquake?’ (13)(14)

Apparently scientists in Regional Epilepsy Centre, Department of Neurology, University of Washington, Seattle, Washington 98104, USA, asked patients with epilepsy this very question in a survey following the earthquake in February 28, 2001 Nisqually. 23% of the epileptic patients volunteered that they initially thought they were having a seizure during the earthquake. (15)

The Epilepsy Therapy Project(16) recently reported on a study in Japan showing an increase in epileptic seizures in the 8 weeks following the tsunami in japan in 2011. The theory behind this is that higher stress triggered the increase in seizures. The study does not mention any increase in seizures on the day or in the days preceding the earthquake.

For me epilepsy is an ideal area to begin to look at the complex relationship we have with the electromagnetic spectrum, physics and biology or biophysics (17).

1) http://www.epilepsy.org.uk/info/photosensitive-epilepsy

2) http://www.epilepsy.org.uk/info/photosensitive-epilepsy/computer-television-screens

3) http://epilepsytalk.com/2013/03/04/predicting-seizures-7-amazing-new-breakthroughs-3/

4) http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0054376China Study

5) http://www.hpa.org.uk/webc/HPAwebFile/HPAweb_C/1317133827077Health effects from radiofrequency electromagnetic fields full report – Report of the independent advisory group on non-ionising radiation 348 pages

6)http://en.wikipedia.org/wiki/Functional_magnetic_resonance_imaging

7) http://en.wikipedia.org/wiki/Transcranial_magnetic_stimulation

8) ) http://www.ncbi.nlm.nih.gov/pubmed/7254715 Correlation between convulsive seizure and geomagnetic activity.

Rajaram M, Mitra S.

9) )http://johndavidpowell.wordpress.com/2011/03/11/6-open-blog-friday-japan-earthquake-solar-flares-gas-boycott-and-more/

10) http://www.coping-with-epilepsy.com/forums/f23/seizures-solar-geomagnetic-activity-11768/

11) http://aaronsreality.blogspot.co.uk/2011/01/certain-types-of-epilepsy-and-solar.html  solar flares

12) http://blog.vitamindcouncil.org/2012/04/18/correction-of-vitamin-d-deficiency-improves-seizure-control-in-epilepsy/

13) http://arxiv.org/pdf/1209.3803v1.pdf Earthquakes

14) Dynamical analogy between epileptic seizures and seismogenic electromagnetic emissions by means of nonextensive statistical mechanics

Authors:Konstantinos Eftaxias, George Minadakis, Stelios. M. Potirakis, George Balasis

(Submitted on 17 Sep 2012)

15)http://www.coping-with-epilepsy.com/forums/f23/seizures-solar-geomagnetic-activity-11768/index6.html  Earthquake and seizures

16) http://www.epilepsy.com/newsletter/feb13/japan_earthquake

17) http://en.wikipedia.org/wiki/Biophysics

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

Coconut oil for dementia and alzheimers disease – Natural News.com

http://www.naturalnews.com/039388_coconut_oil_dementia_Alzheimers_disease.html

Really interesting information about coconut oil and inflammation caused by oxidative stress in the brain.

Thanks to which ever blogger it was that put up a link to Nautral News – I can’t find the origional link but thanks and please identify yourself to me so I can credit you!

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!

fire in the blood.

The Earthbound Report

This week has seen some excitement over the possibility of the first case of someone being ‘cured’ of HIV, generating a lot of hope and expectation for future treatments. This week has also seen a little attention on the story of HIV drugs in Africa, which is a much darker story. It’s been told for the first time in a new documentary, Fire in the Blood, which is currently screening in Britain.

It’s the work of Indian-Irish historian and filmmaker Dylan Mohan Gray, and it tells the story of how the pharmaceutical companies blocked the sale of cheap anti-retroviral drugs in Africa. It protected their profits, but caused an estimated 10 million unnecessary deaths. That’s a crazy number of deaths that could have been avoided. You would need to add the Holocaust and Stalin’s gulags together to match it. It’s little wonder Gray refers to it as ‘the…

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very interesting and relavent findings on gene expression and mental health.

deemagclinic

The biggest study yet into genetics and mental health has come up with a stunning result: The five most common mental illnesses — autism, attention deficit disorder, bipolar disease, schizophrenia and major depression — all have a common genetic root.

The finding, published in the journal Lancet on Wednesday, may eventually lead to a complete rewrite of the medical understanding of the causes of mental illness.

“We have been able to discover specific genetic variants that seem to overlap among disorders that we think of as very clinically different,” Dr. Jordan Smoller of Massachusetts General Hospital in Boston, who led the study, said in a telephone interview.

The study does not explain every case of psychiatric disease, the researchers stress.

“We think this is one tiny fraction of the genetic component of these disorders. They involve hundreds and possibly thousands of genes,” Smoller said.

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