Teenage Epilepsy

Coping with the Seizures ----- More thoughts of how we cope

Strategies ….Anything that works

• These are some of the things that we do

– alleviate the stress of the seizures

– to control the anxiety of the seizures (and life)

– strategies we use to keep her well

These strategies do NOT replace her medication… but they do help alleviate the side effects and help

with her well-being….and ours too

Exercise --- Any movement at all

When my daughter was feeling so ill and low

- we walked….even when it was midnight

- we walked at least 1 km…sometimes for as long as hour

the reality is that having seizures makes you feel unwell….get out of bed and move

Walk and Talk…Just walk and talk

Moving in the fresh air…or just getting out of the house

• Did she feel like getting up?............short answer is NO

• Did she fight against going out ?.....short answer is YES

In the early days this was hard …she just wanted to hide at home and do nothing…or rather she

was waiting for the next seizure to happen

Walking and Talking

• We found movement seem to help

• The more exercise she did, the more her well-being improved

So we walked and talked ….this wasn’t a power walk or a speedy sprint. It was more about just getting out of the house and out into the fresh air ……even if it was cold and raining or late at night.

Serious Exercise ….Absolutely

• My daughter was a high school rower– she ran 10 kms 3 times a week– she rowed 5 hours a day during the peak of the

season (5am starts…..4pm starts)– she rowed in regattas– she spent hours in the gym

This was often a struggle… but we wouldn’t let her give up … as long as the school continued to let her row…she

rowedNow she is older – she still goes to the gym

The Parent Role ….Some days it was hideous

• The exercise and the hideous headaches– it seems to be the lot of epileptics – headaches

Once she began exercising ….. the headaches got worse. BUT she kept going ….heart breaking to watch as a parent but we knew if she could run through the headaches… it would get better. The more exercise = less headaches

10 Kms runs…ear plugs in and off she went – always in the top 3 runners to finish. This also gave her a confidence boost

She begun to realise that epilepsy was not the end of the world.. she could still do lots of things

How we dealt with the headaches

• We had to learn to deal with the headaches otherwise she would have been unable to do a thing

– take panadol (anything else seemed to interfere with her meds) …carry them where-ever she went

– use cold water therapy --- wet cold face cloths on the back of the neck and on her forehead. Wrapped around her ankles (not freezing cold cloths…these could bring on a seizure)

Headaches….more strategies

• Keep well hydrated…drinking lots of water (she didn’t drink any energy drinks – they have lots of additives which interfered with her meds)

• Cups of sweet tea (English breakfast …but whatever we could get really)

– A cup of tea for everyone usually …sharing the experience helped

Headaches….more strategies

• Acupuncture– we used this for years and only lately have not been

using it as much– we found this relaxed her muscles in her neck and

shoulders which helped immensely

• Hot Epsom salt/baking soda baths– we still use this one– about 200 gms of Epsom Salts and the same again for

baking soda. – Just soak and relax – really helped her and she slept

better afterwards (you can use it too )

Headaches….More Strategies

• Eat regularly – small meals over the day– avoid any sugar type things (but don’t obsess

about this – a lovely bun with pink icing and lashings of butter was a treat she enjoyed)

– Paleo diet – our household have all become paleo eaters. Again not obsessive about it (80/20 rule)

Diet was a hard one – but we realised that it totally affected how she felt and her ability to cope with her seizures….meds on an empty stomach is a disaster

What we totally Avoid eating• No sugar laden foods regularly. She eats very

little cake, no sweets and no sugary drinks. – if she does eat these things – they are a treat once in

a while …NOT a regular part of her diet

• No diet product of any kind … these products are full of chemicals

• No energy drinks or bars….they are also full of chemicals

• No margarines, oils (no canola, sunflower or veggie)

• No processed or pre-cooked meals

What is GOOD to eat

• Lots of fruit and veggies• Lots of meat, chicken and eggs• Small amounts of dairy products ..again not the

main meal – just supplementary to the meal (like butter for instance)

• We use coconut oil and olive oil only in our house

It does mean a bit of work when you change the household diet…the slow cooker becomes your

friend

Spicy, Full Flavour Food…YES

We are a multicultural family and eat about anything really- curries- hot and spicy food- BBQs

She does have the odd takeaway meal but she is very careful. Again we don’t obsess about this (well not too much)

The meds do make her stomach sensitive so we use digestive enzymes and probiotics to help alleviate any stomach

discomfort

Supplements …What we have learned

Be very careful what you take !

- we found some of these will interfere with her meds (this has taken us YEARS to figure out)

- So this is the list of the stuff we use and works for us ….but by no means take this at face value – you need to determine what works for you and be very careful about how you test them

Vitamins …We take

• Multi-vitamin tablet (just a regular one ..nothing special)

• High doses of Vitamin B and Vitamin C

– we buy these off iherb.com

– we use liposomal vitamin C

– She takes them once a day – and whenever she needs it

these keep her ‘well’ …so no flu or sore throats

Magnesium …Oil

We have only added this lately

- Magnesium oil --- you can buy it online. We try to get the best quality and she sprays this onto her legs and arms about 4 times a day. But if she has a stiff neck or feels unwell ..she will spray this directly on to the area.

We have found this really helps and she carries it with her 24/7

Magnesium --- We add it to her water bottle

I buy Magnesium citrate online and she puts a teaspoon into her water bottle each day (along with Vitamin C powder)

- the taste is not great – but I insist she drinks at least a bottle a day (follow the instructions on the packaging)

This really helps too…. with no side effects

We found she has significantly less headaches

Magnesium…the bath

Didn’t realise that epsom salts are also magnesium salts

- usually will have a bath in the evening before she goes to bed when she is not so good

- much better sleep after an epsom bath

All that Electronic Stuff

Reality is that our whole household is one electronic nightmare with lots of radiation all over the place

- we do think it does affect her epilepsy

- SO we make sure that her mobile phone and lap tops are no where near the bed where she sleeps

- We do have wireless….not much you can do about this especially if your house is full of uni students

All that Electronic Stuff

Good Sleep is vital to her wellbeing

- try to reduce the amount of electronic stuff she will look at least 30-60 mins before she goes to bed

- all the mobile phones have Bodywell Chips on them … this reduces the cell phone radiation absorbed by the user

Good Sleep ….Yes it does make a difference

Earthing Sheet

- this is something we have been using for over a year now with positive results

- this explains what this is here

https://www.youtube.com/watch?v=Z4F8mterVGE

We know that people will have a different opinion to us about earthing…but we have become an earthing family,

we all sleep on earthing sheets …..and it has definitely had a positive impact to her epilepsy

Late Nights ….YES you can

My daughter is an uni student….so she has to stay up late and study

- but we try to make sure not too many of them in a row

- the reality is that if you live a full life – you will face stress and it is ridiculous to think otherwise

Learning to cope with stress

• Yes she has to cope with stress .. like it or not

It means that she has to make uni deadlines, get to work on time and do all the other things she is obligated to do

- She has learned good time management skills

- There has to be a balance between work and play

Learning to cope with stress

The benefits of her learning to cope with stress are two-fold

- she has learned she can do what she needs to …her epilepsy does not restrain her ability to do stuff

- it gives her confidence …a good sense of achievement when she gets her assessments in on time

Laughter….We Laugh a lot in our house

• We try not to take ourselves too seriously

• We are a loud and active family .. debating and arguing about everything and anything

• Laughter is the best medicine … it is true – try for the full belly laughter – honestly it helps us all

Has she struggled …Sadly Yes

• Her seizures gave her anxiety

– we refused to let her sit at home and become a sad thing

– Others can make it more difficult with their biases and discrimination

We have learned to avoid the negative people and tried to make life a positive experience

Awards she has won ….Yes she has

• She has won national and local awards for the work that she has been involved in

– no one knows that she is epileptic because she does not discuss it …As her mum, I often get weepy because only I know how hard it has been for her

– She has learned to managed her time and well being so that her health is not adversely affected

It has not been easy at times – and her epilepsy is an on-going thing that we manage

Our Life ….It is on-going

• All these things together with her meds means that she is relatively well most days

• Her headaches are a rarity these days

• Every day her confidence grows …so she challenges herself and pushes her boundaries

• It has been more than 6 years since she had a seizure

♥Every day without a seizure is a good day ♥

Thank you

&

the End