input please

[collins]

g'day all;
only been diagnosed with e last 3 months, all varieties,

live in a country town, hosp , has no neuro, been wiht relatives on a

number of occasions and had a siezure, they always ring an ambulance

then off to hosp, got to lay in the er for 4 hours then i can go.

question, what can they do, all i want to is go to bed. am i missing

something? btw on tegretol/ topamax

god bless jack

[EarthMonkey]

What I told my relatives and friends when I was having lots of seizures was don't call an ambulance. My Epileptologist said that if the seizure lasts five or more minutes (not counting post-ictal time) then call or if the seizures are cluster seizures where you do not fully regain conciousness then call an ambulance. You might explain they will want to protect your head (put a pillow under it) and hold your body sideways so you won't choke. Or if you have complex partial seizures they might guide you to safety if need be (If someone gave me directions I would follow them while having complex partials ie: "get down!"). You can get little booklets on seizures from the epilepsy foundation that give more detailed information for your family to read.

Good luck on breaking them of this habit.

[howdydave]

G'day Jack!

All the hospital will do is watch to make sure you don't go into status.

They just let your seizures pass, watch for a few hours to make sure
that you don't have another one and send you home.

IMO Going to hospital for a seizure is a waste of time and money!

Just tell the relatives "let me do my thing and I'll be back with you in a bit."

The only thing that they can/need to do is to minimize the possibility of your
hurting yourself.

If they feel that they need to do something, tell them to make you a pot of coffee (or
some other trivial task) just to keep them busy and out of the way. (Same principle as
telling expectant fathers to go boil some water!)

[jersey]

Hi Jack,
First you should check with your doctor, to see if an ambulance always has to be called. If not, then tell them that your doctor doesn't want an ambulance called unless...Then I would have the people who are truly worried about me contact the Epilepsy Foundation to find out, first hand, how best they can help me while I'm having a seizure. If you already know what should be done for you while you are having your seizures, nicely and calmly explain it to them.
I was just wondering if you get an aura before your seizure? If so, possibly you could work out some kind of signal for your relatives, so they are more aware of what will be coming. Good Luck and God Bless.

[collins]

g'day;

dave; what do you mean by status?
yes i would rather be in my own bed to sleep it off.

jersey: some times i get a warning, most of the time i don't BTW live alone

and am beginning to become a recluse for the fear of unwanted/unneeded
imo trips to hosp.

thanks and god bless jack

[howdydave]

G'day Jack!

Status epilepticus is when you have multiple seizures in rapid succession.

[joy]

It must be the universal contriversary. My daughter feels the same way, no ambulances and no hospitals but she never wins that argument since her husband's mother lives just around the corner from them and always goes over and tells her son to call the ambulance. Since they have no insurance and both work for husband's business (meaning his mother), I've been staying out of the bill paying part so far. Sorry, just disregard my quote at the bottom after my signature. Since this just happened again Saturday and the bill from about two years ago is still not paid, Im beginning to see my daughter's side of the argument more and more.

[jersey]

Jack, If these relatives are use to seeing you alot maybe they will get the message since you are now becoming a recluse. They may call and ask why they don't see you anymore. At that point, they may be very receptive about not calling an ambulance anymore. If this is happening at work, just tell them that you are under a doctor's care and it is not necessary to call the ambulance unless... Good Luck and God Bless

[collins]

g'day all;
should have said earlier, lost my job and license.

passed on your advice, hopefully they will respect my wishes

once again thanks

god bless jack

[EarthMonkey]

Did you lose your job because you had a seizure? If you did the company is breaking american's disabilities act. If the job you did would be dangerous because of seizures (such as driving a truck) then the business is supposed to find you a position if possible that would not be dangerous. If that is what happened you might consider speaking to a lawyer about it (one that specializes in disablity rights)

[collins]

g'day;

in austraila, laws a diff depending on occupation, i was a supervisor
on a mine site, needed a license to drive on site.

nothing else for me to do.


god bless jack

[lexiathedragongirl]

Hi jack from a fellow aussie :)

Did you get medical retirement from your position? You still can't be sacked, they need to find alternatives for you under the W/C Acts. Check with the union too, there are alternatives.

Where abouts are you (roughly w/out compromising anonymity :) )? I suggest you need to see someone to get better control. I dealt with a neuro through St Vincents Clinic in Sydney who was good; it meant travelling as I'm in the country myself (and a mining town) but it was worth getting the answers.

I would also contact the local ambos and let them know that if you do have a sz that you don't want transport to hospital but ride it out at home. They can monitor you there if they are called without loading you up. That way, if a status event did happen, they are on hand.

[collins]

hi lexiathedragongirl;

in the hunter valley,on salaried wages+conditions so no union.

i have found a good neuro in n'castle, all testing equipment in his rooms as
well.

now the ambo's, if they get called they either take me to hosp or i sign a
release.

take care jack

[lexiathedragongirl]

Wouldn't be Dr Burton, would it?

[collins]

Wouldn't be Dr Burton, would it?

sent you a pm

[Porkette]

Hi Jack,
I've had absence (petit mal), complex partial and simple partial sz. for 34 yrs. I also had 2 brain surgeries to help reduce my sz. Just a few days ago I ended up going to the hospital and I didn't feel it was necessary but the clinic where I was at for a mammorgram said the Drs. didn't know what to do if I had a sz.
Many people today still live in the dark ages and don't understand E. and they are afraid. One thing that helped me a lot is taking vitamin B12 1000 mcg. once a day, and instead of seeing a neurologist (which I have seen many of over the yrs.) I see an Epileptologist at an Epilepsy Center. I've found an Epileptologist to be way ahead of a neurologist and I've had to take fewer meds (AED's).
I know here in the U.S. it's illegal to lay someone off from their job because they have E. or any other health condition. I've been working in public school as a teacher aide for 21 yrs. and the first time I had brain surgery my supervisor wrote me up without me knowing about it stating I was missing to much work because of the surgery. That's when I got the Epilepsy Foundation of America after her and the school and she lost her job because I had a Drs. note stating I was not to work for 3 wks. Drs. orders.
If you like dogs you might want to get a seizure alert dog. The dog can sense when a person is going to have a seizure 10 min. to 1 hour before the seizure happens and depending how the dog is trained the dog will either put their paw on you a few times or will bark, then they will lay down on the floor in case the person falls during a sz. It's amazing how well they work and it's all because they can smell an odor our body gives off that we can't smell before the seizure happens.
I sure would love to be in Australia where you live. That's my dream vacation. Here's wishing you well and May God Bless You!

Sue

[purplegrrl]

I think the question re hospitals has been answered.

I'd also give your friends/relatives first aid for e info. Tell them how you want to be treated when you have a seizure... when they need to call an ambulance and when they don't. You can get first aid posters... ours also does frig magnets.

That covered... *waves* from another Aussie! I'm in Victoria... currently split my time between Melbourne and Geelong (where my mother lives)

[collins]

g'day;
could not do my designated job, so i sat in a office, they where
really just giving me stupid things to do.

following my second annie clipping i got a letter saying that they had
"exhausted all avenues" in finding me an another position.

did NOT get a medical payout, living off my accreued holiday pay, then
i'll use my long service leave pay.

thence i cash in my super which has a disablity cover.

yes the dog sounds like a good idea, will look into it.

thanks for all the advice jack