Over the last 12 months I have intermittently had 6 blackouts. I get about 1-2 minutes warning, lose consciousness for about 10-30 seconds, and have about 30 seconds disorientation afterwards.
I have had a full cardiac work up, my heart health is better than 90% of women my age, and now waiting for a neuro work up (can't get into see the specialist for 9 months...). It seems likely I have developed a type of seizure disorder.

Last visit to the GP she says I'm ok to drive, but not to swim alone. Made me think about watersports. I reckon I've got strategies to be ok to SUP with company, but I'm struggling with ideas of how to kite safely.

Has anyone got personal experience of kiting with a seizure disorder? What strategies do you use to manage it safely?
I dont kite often anymore, but still want to have the opportunity to get out when I feel like it.

(Please don't attack me, those who know me also know I'm not a uncalculated risk taker.....)

EDIT to add- I accidentally initially posted this under my husband's login.... fixed now!

Level 100 or 150 life jacket would be mandatory, keeps your head out of the water if unconscious.

Damn, that's a tough one! I can't imagine how frighting that could be even just walking, let alone kiting. Other than airsails comment I would not have a clue how to keep you safe. Kiting even with friends covers a lot of distance and might not be enough time to stop a drowning experience. I hope your specialist can narrow down the cause of it for you so you can go back to doing all the things you love.

Lifejacket for sure, and also making sure that you have company close by who are aware of your issue and able to keep you safe /get you ashore if necessary. And a pre-arranged signal (personal alarm maybe?) to alert them. But I don't think you'd be really safe in any case, unfortunately, due to the unknown nature of your condition at this stage. (Seizures /TIA's /whatever they are, could get worse or come without warning.)
Hope the neurologist can shed some light on this matter when you eventually get to see one!

You could also consider moving from kiting to winging, at least then you not attached to an out of control kite. I do both and in your situation would choose winging as a safer option, once you let go of a wing there isn't much pull unless your in very strong wind.

Thanks for the ideas. My husband already talked about a life jacket, I hate the restriction of them but needs must.

Winging is a good idea, do you have to use foil boards tho? Even without a seizure I reckon I am unco enough to kill myself on the foil!

I'm as much concerned about what an out of control kite might do to others as much as myself...

You could stay really close to the shore so in case you get your warning you have the time to be back on the beach and land/release your kite before you pass out.
But then you might become a danger for others if you have to release your kite on a beach with people/kids nearby.
You could have another kiter/person with you just so they can keep an eye on you and grab you and your kite if something goes wrong.
All this in addition to a life jacket like already mentioned.

For your own welfare and life don't kite . Consider someone calling an ambulance next time you blackout .At emergency tell them its a regular event .You may be admitted overnight until they diagnose problem , this method saves waiting 9 months for specialist .

Yup I do.

I have learned to know when Im having off days and just usually don't kite those days. Especially not if its nuking. But if you have just developed this disorder they might sneak up on you, so probably good to be cautious. Yours sound a bit more full on than mine which I can still kite through, but it feels like I have dropped about 20 acid tabs (the seizure feels like that) and I just have to try and keep focussed on riding it out. Not fun.
When you get to know your warning signs of a seizure you will get better at maybe just not going out on the water that day, and try to sleep it off with some nana naps. Getting on some medication is a good idea, hasn't totally 100% stopped them for me, but definitely given me back the freedom to get out there because now I stay conscious through them, and they only happen a half dozen times a year or so.

Good luck with learning more about your condition and hopefully you can get on top of it.

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towradgi said..
For your own welfare and life don't kite . Consider someone calling an ambulance next time you blackout .At emergency tell them its a regular event .You may be admitted overnight until they diagnose problem , this method saves waiting 9 months for specialist .

Already done this, and got referred for work up after they ruled out heart attack. They are not going to fast track non life threatening symptoms

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Chris_M said..
Yup I do.

I have learned to know when Im having off days and just usually don't kite those days. Especially not if its nuking. But if you have just developed this disorder they might sneak up on you, so probably good to be cautious. Yours sound a bit more full on than mine which I can still kite through, but it feels like I have dropped about 20 acid tabs (the seizure feels like that) and I just have to try and keep focussed on riding it out. Not fun.
When you get to know your warning signs of a seizure you will get better at maybe just not going out on the water that day, and try to sleep it off with some nana naps. Getting on some medication is a good idea, hasn't totally 100% stopped them for me, but definitely given me back the freedom to get out there because now I stay conscious through them, and they only happen a half dozen times a year or so.

Good luck with learning more about your condition and hopefully you can get on top of it.

Thanks for your insight Chris. Sounds very similar to what is happening for me, but as I've only had 6 episodes in a year, its hard to know the pattern yet. I may have a way to fast track my specialist referral, and hope they will have some ideas for me.
Do you use life jacket or other strategies beyond avoidance when you feel a seizure is coming?

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Knickers said..
Thanks for the ideas. My husband already talked about a life jacket, I hate the restriction of them but needs must.

Winging is a good idea, do you have to use foil boards tho? Even without a seizure I reckon I am unco enough to kill myself on the foil!

I'm as much concerned about what an out of control kite might do to others as much as myself...

There are inflatable life jackets that may be a good option, the ones with the capsule that inflates. If you have a minutes warning, I'd be pulling the toggle on the life jacket and dumping your kite onto the leash.

The risk you have is that the pull from the kite moves you into a position where your face is underwater

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Saffer said..

Knickers said..
Thanks for the ideas. My husband already talked about a life jacket, I hate the restriction of them but needs must.

Winging is a good idea, do you have to use foil boards tho? Even without a seizure I reckon I am unco enough to kill myself on the foil!

I'm as much concerned about what an out of control kite might do to others as much as myself...

There are inflatable life jackets that may be a good option, the ones with the capsule that inflates. If you have a minutes warning, I'd be pulling the toggle on the life jacket and dumping your kite onto the leash.

The risk you have is that the pull from the kite moves you into a position where your face is underwater

Thinking of it now, I'm pretty sure I have one of those hidden in a box of spare kite stuff- from when I did an ocean kite race in the days when I was young and keen!
Prob just needs a new cartridge.

Thinking that if I get a warming sign, head out into deep water, put the kite on the water fully depowered and float on my back with life jacket activated. Not sure I want to go to safety or not because then it becomes a tangle risk and a PITA to get the kite up again to get back to shore.
I feel it's like when you see a big squall coming- it's safer to be out away from hard things with the kite sitting at the bottom edge of the wind window....

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Knickers said..

Chris_M said..
Yup I do.

I have learned to know when Im having off days and just usually don't kite those days. Especially not if its nuking. But if you have just developed this disorder they might sneak up on you, so probably good to be cautious. Yours sound a bit more full on than mine which I can still kite through, but it feels like I have dropped about 20 acid tabs (the seizure feels like that) and I just have to try and keep focussed on riding it out. Not fun.
When you get to know your warning signs of a seizure you will get better at maybe just not going out on the water that day, and try to sleep it off with some nana naps. Getting on some medication is a good idea, hasn't totally 100% stopped them for me, but definitely given me back the freedom to get out there because now I stay conscious through them, and they only happen a half dozen times a year or so.

Good luck with learning more about your condition and hopefully you can get on top of it.

Thanks for your insight Chris. Sounds very similar to what is happening for me, but as I've only had 6 episodes in a year, its hard to know the pattern yet. I may have a way to fast track my specialist referral, and hope they will have some ideas for me.
Do you use life jacket or other strategies beyond avoidance when you feel a seizure is coming?

Hi Knickers,
No I don't use flotation or helmet, I figure if I meet my maker while kiting, so be it. I don't really know how effective it would even be if it all goes to custard while out in the water. I used to let my kite buddies know about my condition prior to a session, but felt a bit special needs about it all TBH.
The key thing is just recognising the signs of seizure activity, and then making sure I don't drive/ kite/ surf on those days. Things like stress/ too much alcohol/ lack of sleep seem to increase the frequency of seizures so I suppose there is the importance of just trying to lead a healthy lifestyle.... most of the time.
Like I said earlier - medication has been great, although it has lead to memory problems which makes my job a bit difficult...... but its great to be able to blame external factors for being half assed lol

Getting in to see a neurologist is helpful to try and get to the bottom of things - an EEG might help, and will get things moving along. Do everything you can to hurry that up, but the waitlists can be pretty long. Maybe you could use your private healthcare if you have any?

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Saffer said..

Knickers said..
Thanks for the ideas. My husband already talked about a life jacket, I hate the restriction of them but needs must.

Winging is a good idea, do you have to use foil boards tho? Even without a seizure I reckon I am unco enough to kill myself on the foil!

I'm as much concerned about what an out of control kite might do to others as much as myself...

There are inflatable life jackets that may be a good option, the ones with the capsule that inflates. If you have a minutes warning, I'd be pulling the toggle on the life jacket and dumping your kite onto the leash.

The risk you have is that the pull from the kite moves you into a position where your face is underwater

I think that unfortunately it's a very real risk that you inhale water while unconscious, as waves will slop over your face. Also, even on your back with head held above water, you do risk blocking your own airway as your jaw & tongue relax, so its not a good situation. Even with a good lifejacket, you'd need some assistance from others.

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Chris_M said..

Knickers said..

Chris_M said..
Yup I do.

I have learned to know when Im having off days and just usually don't kite those days. Especially not if its nuking. But if you have just developed this disorder they might sneak up on you, so probably good to be cautious. Yours sound a bit more full on than mine which I can still kite through, but it feels like I have dropped about 20 acid tabs (the seizure feels like that) and I just have to try and keep focussed on riding it out. Not fun.
When you get to know your warning signs of a seizure you will get better at maybe just not going out on the water that day, and try to sleep it off with some nana naps. Getting on some medication is a good idea, hasn't totally 100% stopped them for me, but definitely given me back the freedom to get out there because now I stay conscious through them, and they only happen a half dozen times a year or so.

Good luck with learning more about your condition and hopefully you can get on top of it.

Thanks for your insight Chris. Sounds very similar to what is happening for me, but as I've only had 6 episodes in a year, its hard to know the pattern yet. I may have a way to fast track my specialist referral, and hope they will have some ideas for me.
Do you use life jacket or other strategies beyond avoidance when you feel a seizure is coming?

Hi Knickers,
No I don't use flotation or helmet, I figure if I meet my maker while kiting, so be it. I don't really know how effective it would even be if it all goes to custard while out in the water. I used to let my kite buddies know about my condition prior to a session, but felt a bit special needs about it all TBH.
The key thing is just recognising the signs of seizure activity, and then making sure I don't drive/ kite/ surf on those days. Things like stress/ too much alcohol/ lack of sleep seem to increase the frequency of seizures so I suppose there is the importance of just trying to lead a healthy lifestyle.... most of the time.
Like I said earlier - medication has been great, although it has lead to memory problems which makes my job a bit difficult...... but its great to be able to blame external factors for being half assed lol

Getting in to see a neurologist is helpful to try and get to the bottom of things - an EEG might help, and will get things moving along. Do everything you can to hurry that up, but the waitlists can be pretty long. Maybe you could use your private healthcare if you have any?

Its the private referral that has a long wait! I work in a hospital with a neurology dept so my next angle is to get a referral to them, as the clerk said yesterday she may be able to fast track me as a staff member.
My blackouts so far have been on days I haven't slept well or long enough, but that happens frequently and haven't yet felt signs more than a few minutes ahead of time

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Sandee said..

Saffer said..

Knickers said..
Thanks for the ideas. My husband already talked about a life jacket, I hate the restriction of them but needs must.

Winging is a good idea, do you have to use foil boards tho? Even without a seizure I reckon I am unco enough to kill myself on the foil!

I'm as much concerned about what an out of control kite might do to others as much as myself...

There are inflatable life jackets that may be a good option, the ones with the capsule that inflates. If you have a minutes warning, I'd be pulling the toggle on the life jacket and dumping your kite onto the leash.

The risk you have is that the pull from the kite moves you into a position where your face is underwater

I think that unfortunately it's a very real risk that you inhale water while unconscious, as waves will slop over your face. Also, even on your back with head held above water, you do risk blocking your own airway as your jaw & tongue relax, so its not a good situation. Even with a good lifejacket, you'd need some assistance from others.

I work full time in airway management, thankfully I don't obstruct very easily, and it's only for 30 seconds at the very most

Knickers this is much more serious than just kiting

I strongly suggest you look at epilepsy.org.au, specifically the driving section

Ausroads publishes Assessing Fitness to Drive Guidelines for medical practitioners (your GP needs to look at this). It covers blackouts and seizures amongst a lot of other stuff

(this is a issue I deal with professionally and advise 3rd parties on)

It is highly likely both you (and your GP) are breaking the law by continuing to drive.....

What you do in your own time is your business, but being on the road risks your life and those of others

Every year many people are killed by drivers who lose consciousness and some of those drivers ignore the guidelines

One memorable case was a young lass who blacked out driving in the country at 100, mum tried to get to the wheel but the car rolled killed mum and maimed dad and sis.

Im sorry about your condition and slowness in getting assessed but your medical advice is wrong.

So what happened just leading up to the first episode? Seemingly about Nov 2021.
there may be a trigger that might help the Neurologist to fix the cause.
make a list of everything possible and rule out nothing.

Hi there..
Lots of good advice there..I particularly liked the 'move to winging'(or windsurfing) one r.e out of control kites in that situation&staying close to shore

I use something like this sometimes it has a cannister on it and also a self/manual oral inflation snorkel and is completely non-intrusive..
But..in your case you should probably use one that would keep you above the water no matter what..you can get small &non intrusive ones of those

I also literally force myself to drink a litre of water beforehand....no matter what...that may help......wearing sunnies may help stop triggering it also there is highly likely a particular tint that won't cause the neurological anxiety that leads to these dangerous symptoms and situations ...

Goodluck

Gees I thought vertigo was a shocker, thats intense mate, take care out there

Medical marijuana 'oil' - has very good results for seizures for the past 6 years or so for all age groups..
Worth doing some research.

www.epilepsy.org.au/about-epilepsy/medicinal-cannabis/

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Knickers said..
Over the last 12 months I have intermittently had 6 blackouts. I get about 1-2 minutes warning, lose consciousness for about 10-30 seconds, and have about 30 seconds disorientation afterwards.
I have had a full cardiac work up, my heart health is better than 90% of women my age, and now waiting for a neuro work up (can't get into see the specialist for 9 months...). It seems likely I have developed a type of seizure disorder.

Last visit to the GP she says I'm ok to drive, but not to swim alone. Made me think about watersports. I reckon I've got strategies to be ok to SUP with company, but I'm struggling with ideas of how to kite safely.

Has anyone got personal experience of kiting with a seizure disorder? What strategies do you use to manage it safely?
I dont kite often anymore, but still want to have the opportunity to get out when I feel like it.

(Please don't attack me, those who know me also know I'm not a uncalculated risk taker.....)

EDIT to add- I accidentally initially posted this under my husband's login.... fixed now!

That is no good !

I think the only safe option I can think of is kiting with a safety jetski or something, that way if you have 2 minutes warning you can give them the kite and hop on the back or whatever until it's over?

I don't think bobbing around in the water attached to a kite, safety engaged or not is going to be safe if you are unconcious?
The issue is - can a kite atached to the safey pull your body in such a way that the PFD is not affective, such as you end up face down with the kite pulling enough to keep you there?

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SaveTheWhales said..
Medical marijuana 'oil' - has very good results for seizures for the past 6 years or so for all age groups..
Worth doing some research.

www.epilepsy.org.au/about-epilepsy/medicinal-cannabis/

May be helpful, but a proper diagnosis must come first!

I skulled a few too many and suffered similar

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SaveTheWhales said..
Medical marijuana 'oil' - has very good results for seizures for the past 6 years or so for all age groups..
Worth doing some research.

www.epilepsy.org.au/about-epilepsy/medicinal-cannabis/

Without reading the article it just seems logical that with seizures being a neuroexcitory condition, using CBD and it's precursor CBG which are natural neuroinhibitors that come without the side effect of added histamines would inhibit seizures.
Magnesium deficiency could also be a consideration but unlike CBD it's best balanced with calcium.
Annoying that you need a prescription for it in this country.
It'd probably also help to avoid neuroexcitory foods heavy in glutemate and aspartate.
And as with all neuro conditions a low omega 6 high omega 3 diet will probably go a long way.

Completely forgot to mention avoiding processed foods. Histamines play a part in seizures. I'll add a list of "anti histamine" foods when I get a chance.

Blackouts can be attributed to more simple causes such as blood sugar levels ....or hyperventilation anxiety...Teenagers on tic toc 18 months ago were blacking out by hyperventilating ...

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towradgi said..
For your own welfare and life don't kite . Consider someone calling an ambulance next time you blackout .At emergency tell them its a regular event .You may be admitted overnight until they diagnose problem , this method saves waiting 9 months for specialist .

Excellent advice. Just quit it until you sort it out.

And do call emergency. So MANY Drs don't give a damn, and nurses too, especially if you are an independent person who takes responsibility for their own welfare and don't like to admit pain /perceived weaknesses et al.

In Darwin they have in a saying -"If you're in pain, get on the plane." to get proper help. Maybe you are already near a good hospital etc, Knickers... ? Don't accept their fob offs and "just wait n see what the next specialist says" attitude, Knickers. Go see as many diverse health experts as you can, NOW!!!

eg - I know someone who cured their vertigo by doing sinus treatments, another cured their blackouts by seeing a head-specialist osteo dude who re-worked their cranial structure - no more ridiculously expensive scans and blah blah blah, yeah we might cut your head open and insert man made devices.... Yeah sometimes they are the answer but sometimes they are a waste of money and dangerous to your health too. I see you work in a hospital. that's good but maybe try alternate stuff - intensely search.

Proper deep diaphragmatic breathing can cure many ailments. 10-20 deep belly breaths once a day will reset your autonomic nervous system over to it's deep healing mode instead of being stuck in panic / adrenaline / emergency mode. you can find the studies online that show the rapid improvement - within days - of your blood platelet stickiness etc. Do the breathing on your back with your feet drawn up towards your butt so your spine is relaxed. in thru nose and out thru mouth, with a thorough expelling of all the air you can squeeze out. This is free treatment and it works. It helps you sleep better and it calms the heart superbly. get your husband to gently place his hand on your stomach as you do this and that might help. make sure all your body is relaxed as you do it - best outdoors in fresh air too.

So many health probs can be sorted out before you waste another day waiting for a 'specialist' who is not thinking broadly and openly enough - they just have one mind filter / one track mind. That is good for certain situations, but the brain / blackouts can have many many causes so i would suggest you chase up MANY MANY diverse opinions and methods and approaches.

Kiting etc is fabulous fun, but it ups your adrenaline levels which is fine for most of us most of the time, but a sabbatical i think is what you need. do some swimming with assistance instead while your body recovers from whatever shocks / toxins / nervousness is causing this problem. I am glad you have a family to help you thru it. I hope they understand and assist you. have a look into Sarah Allely's podcasts about her recovery from a simple bicycle accident. she was a journo with SBS and a brain injury knocked her life about but she realised recovery was best done thru relaxing in nature
brainonnature.com/

Are you getting enough salt / natural electrolytes? I take a couple of coarse grains of celtic sea salt under the tongue every couple of hours on hot days. it soaks straight into your blood w/out going thru the whole digestive process. then a swig of water a few min after that. Have you done a sweat test?
www.precisionhydration.com/sweat-testing/our-sweat-tests/
I did this one and it clarified things for me. clever people !!

lpi.oregonstate.edu/mic/minerals/sodium

histamines can be a problem, for sure. some foods contain lots of histamines and some other foods release the histamine already inside our body which can cause probs too.

Too many people treat a brain / head injury like a muscle injury and think you have to keep on exercising it to get back to full health. wrong wrong wrong - you have let it be for a while - just step back and let nature recover itself via nature.

good luck with it, Knickers

It may be worth a bit more serious consideration of what risks your condition may pose to others... kiters or not...

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psychojoe said..
Completely forgot to mention avoiding processed foods. Histamines play a part in seizures. I'll add a list of "anti histamine" foods when I get a chance.

Here's a great list by Dr. Ledwith, only 16 and they're common foods

pranathrive.com/natural-antihistamine-foods/