Support for new mothers with epilepsy and mental health problems

https://www.bbc.co.uk/news/av/health-46064807/maternal-suicide-the-main-cause-of-death-in-new-mums

I saw the story of Bronagh in the BBC news. When I watched it I cried.

Bronagh had epilepsy and after she became a new mum at the age of 21 she became depressed.

Having a baby can put any woman at risk of mental health problems. According to NHS.co.uk 1 in 10 women experience postnatal depression, so GP’s need to be on the look out. Sleep deprivation and anxiety also cause problems. PTSD, OCD and psychosis can also be a problem postnatally. Only recently Adele shared the story of her friends struggle with postnatal psychosis. (1)

Bronagh’s Mum talks about how Bronagh was told she couldn’t be left alone with her baby because of her epilepsy, because she was a danger to her baby. Because of this Bronagh wasn’t comfortable lifting or touching her baby.

This is tragic.

When I read this it made me very angry. Women with epilepsy may need extra support after having a baby, but to be made to feel like she was a bad mother and couldn’t touch or look after her baby is a completely inaccurate and destructive impression to give anyone with epilepsy, or any new mother.

Women with epilepsy can and do have babies all the time. Women with epilepsy are good mothers. I suspect women with epilepsy feel like they have to be 1000 times better than other mothers, because-personally I have found women with a disability feel continuously under scrutiny.

Epilepsy action provides information to women in the UK about pregnancy and how to care for yourself and a new baby. There is no reason why a woman can’t have or hold her baby, or enjoy being a mother. (2) Some things like washing baby are better done when your partner is at home for support and safety, so it must have been especially difficult and frightening for Bronagh to have so much negative reinforcement about her ability as a mum.

Bronagh asked for help from health care professionals postnatally. She didn’t receive the help she needed.

Sadly Bronagh took her own life.

Her story raises the importance of perinatal Care not just in epilepsy but in mental health. In the UK there are only 131 perinatal beds. There are none in Northern Ireland or Wales. This has to change.

As a woman with epilepsy myself I am no stranger to the problems we face in society such as prejudice, ignorance and lack of education.

Unfortunately lack of healthcare is an area which can only be improved by better government funded NHS facilities. I hope the money that has been promised by the government does go into improving this area of health care.

Having a baby should be the beginning of a new life not the end of one.

(1) https://www.theguardian.com/society/2018/aug/15/adele-shares-story-of-friends-postpartum-psychosis-to-help-new-mothers?CMP=Share_iOSApp_Other

(2) https://www.epilepsy.org.uk/info/daily-life/having-baby/after-the-birth

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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.

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/