>My questions are:
>What are the best books I can buy to education ourselves?
[quoted text clipped - 3 lines]
>
>Thank you. I'm sure I'll have a million more questions.
Books won't help. You've already seen what you are dealing with.
If he has a grand mal in your presence, turn him on his side.
Good luck.
G. - 25 Mar 2006 23:00 GMT
I put up a reply that has a little more detail for them (I also
**emailed them a copy, before I got the 'backlink' to here running
again.)
There are educational materials if they have a Local Chapter of an
Ep. Association, and I listed one book I had heard about when newly
diagnosed. There's one called something like 'Epilepsy from a Patient's
point of view', but I didn't know the author for them.
Depending where the seizure happens--- in water, traffic, crowds,
some First Aid might be more complex than turning someone on their
side. I referred them to Julie's Idaho website for the First Aid chart
that lists what to do in more detail.
Someone newly diagnosed (and their families) usually want more
detail or have more questions that a one line answer lends itself to.
G./
I also forgot to ask if Her Doctor had suggested if he should wear a
Medic Alert Bracelet ? They need your Bloodtype, and one time cost
starts about $35, depending on type you select -- plain, silver or
gold. A Medic can telephone them **Collect from anywhere in the World.
Not a bad return for one time cost of above amount.
(In Canada further Donations are Tax Deductible under the Charities
deduction-- likely similar elsewhere. You get a reminder card once per
year to make sure Dr. name, their or your phone numbers of family
contacts etc. haven't changed. Otherwise they don't bother you. ) G/
Dave Keays - 26 Mar 2006 01:00 GMT
>> My questions are:
>> What are the best books I can buy to education ourselves?
[quoted text clipped - 5 lines]
>
> Books won't help. You've already seen what you are dealing with.
I found that books were as much of a help as self-help groups. You may not get
many hard-facts out of it, but seeing evidence that you are not alone is helpful.
> If he has a grand mal in your presence, turn him on his side.
Another important point (there are many) is to NOT hold the person down. I've
thrown people on the other side of the room more than once. When I say more than
once I'm talking about different people. I don't think anybody wanted to try it
a second time.
> Good luck.

Signature
Dave Keays
Julie - 27 Mar 2006 01:54 GMT
>>If he has a grand mal in your presence, turn him on his side.
>
> Another important point (there are many) is to NOT hold the person down. I've
> thrown people on the other side of the room more than once. When I say more than
> once I'm talking about different people. I don't think anybody wanted to try it
> a second time.
Dave is right, my husband was helping me during a tonic clonic (grand
mal) seizure. I was sitting and he held my right arm. It dislocated my
shoulder.
And don't put anything in the person's mouth. If you do you can injure
their teeth or yourself.
Julie
Dave Keays - 27 Mar 2006 02:04 GMT
>>> If he has a grand mal in your presence, turn him on his side.
>>
[quoted text clipped - 12 lines]
> And don't put anything in the person's mouth. If you do you can injure
> their teeth or yourself.
I always was afraid someone would either grab my tongue and put it right between
my jaws or I would bite their fingers off. I think my tongue might have a change
of healing.
> Julie

Signature
Dave Keays
> My otherwise healthy 33 yo husband has just been diagnosed with
> epilepsy. He had been having what we now know were simple partial and
[quoted text clipped - 34 lines]
>
> Thank you. I'm sure I'll have a million more questions.
> My otherwise healthy 33 yo husband has just been diagnosed with
> epilepsy. He had been having what we now know were simple partial and
[quoted text clipped - 33 lines]
> April. http://www.theseeprogram.com/
> Thank you. I'm sure I'll have a million more questions.
(I Emailed you a copy of below when a New York onramp I sometimes used,
collapsed before I came over here.You can read below (here) for other
replies that people might have during the weekend or early next week.
G./ )
We have lots of people with various experiences. I just did a post
24th at 1224PM Eastern time (1724UTime) titled "A collection of
websites..." that lists about 8? !! sites with various stuff. You
might want to look at the ones near top about First Aid for seizures,
and print copies that show what to do for various types. (Many people
do the wrong things, and some of the simple steps make the experience
for both the caregiver and the 'patient' easier to deal with and
quicker to recover from without side effects. )
A book you might be able to find at your Library is about 10 years?
old. It's written by Eva LaPlant (I think is correct spelling), and
is called 'Seized (Epilepsy from the patient's point of view)' . It's
an autobiography she wrote to describe what she was feeling during her
type of seizures and experiences she had, back then, getting treatment
and help. Some of the information might be a little dated (I haven't
read it, just seen it recommended on my Local Ep. Chapter newsletters),
that's why it's probably just as well to borrow it from your Library
if they have it.
If you are near a large city, there might be a Local Chapter of an
Epilepsy Association near you. If there is, their annual dues are
usually small, but with that you could get access to their Videos and
Library if it's like the one I have here in Toronto.
Check out Julie's Website on above mentioned links to the Idaho
website. There are many Safety Tips and Tricks that might help, in
respect to things that might make the environment safer if he has e.g.
Absence seizures, as part of his other types. Auto-off Kettles,
Microwaves instead of stovetop, Showers instead of Baths etc. help
improve safety of your environment and will help make you feel more
comfortable about this.
I'm surprised the Ativan didn't work, it used to for my type of
Complex Partials. The efa site listed on above post I mentioned will
have information on Dilantin (Phenytoin), although his Pharmacy should
have given a sheet as well of any things to avoid with it. (I was only
able to use it for 4-6 months before we moved to stronger pills, as
Dilantin didn't give me adequate control. My Neuro said that it's
usually prescribed *first as it's been used since about 1930s so longer
studied and Cheaper for those who can use it. Usually Alcohol and
upset stomach remedies are on the list of things to avoid, as both can
interfere with absorption of the pills. But there can be other things
also.
Read the group over next 3-4 days at least, as some don't read
posts each day, and might have comments over next few days for you..
Also we're an International group, so there are people in parts of
Europe, New Zealand, Australia as well as U.S. + Canada. Their mails
will appear as their timezones see the groups messages.
I'm glad *I never had a lumbar puncture, but maybe I'm just a
wuss.. :-< But I'm surprised (as a non-doctor) that nothing showed up
on the MRI (figuratively speaking). Those can measure damage down to
Fractions of a millimetre in size, so there's No internal damage? like
blood clots or other (my encephalitis damage showed on that, plus waves
on my EEG consistent with my type of damage).
Did they have any ideas yet (if you've talked to them) of what
could cause the szrs. if there's nothing on the MRI ? Also did he
have any history of Other seizures before or anything that could have
made him prone to this? Otherwise I'd wonder if there could be other
things that would cause Electrical activity without there being damage
that they could see-- environment? allergies? infection? But (still)
I'm not a Doctor. G./
Julie - 27 Mar 2006 02:25 GMT
Hi G.R. and welcome newbie to our group.
> We have lots of people with various experiences. I just did a post
> 24th at 1224PM Eastern time (1724UTime) titled "A collection of
[quoted text clipped - 4 lines]
> for both the caregiver and the 'patient' easier to deal with and
> quicker to recover from without side effects. )
Thanks for helping us keep people informed, Gordon. One of the pages on
our website actually has valuable insights contributed by members of
this group.
http://www.epilepsyidaho.org/experience.htm
> A book you might be able to find at your Library is about 10 years?
> old. It's written by Eva LaPlant (I think is correct spelling), and
[quoted text clipped - 5 lines]
> that's why it's probably just as well to borrow it from your Library
> if they have it.
My husband just bought me this book last week. He found it at a second
hand store. It is entitled Temporal Lobe Epilepsy as a Medical,
Historical, and Artistic Phenomenon - Seized by Eve LaPlante The
copyright is 1993 the publisher is HarperCollins and the ISBN is
0-06-016673-8
> If you are near a large city, there might be a Local Chapter of an
> Epilepsy Association near you. If there is, their annual dues are
> usually small, but with that you could get access to their Videos and
> Library if it's like the one I have here in Toronto.
You do not have to pay dues to get help from the Epilepsy Foundation.
You can pay dues, if you want to, but it is not necessary. They are
there to help people just like you. In addition to talking to the staff
, you can visit a support group. If you live in the US check here to
see if there is an Epilepsy Foundation affiliate in your state:
http://www.epilepsyfoundation.org/aboutus/AffiliateLookup.cfm
> Check out Julie's Website on above mentioned links to the Idaho
> website.
Thanks, again Gordon for pointing people to our website. I am the
volunteer webmaster, who happens to have epilepsy, and I know that tonic
clonic (grand mal) seizures can be so very draining.
As your husband thinks back he may come to realize that he has been
having seizures of some type for years. I have had seizures since I was
a teenager. I wasn't diagnosed until a late teen. My EEGs show that I
have epilepsy, but the MRI is normal. So we do not know why I have the
seizure activity, but that doesn't have to be a bad thing. I just learn
to manage my life. Right now I am seeing an epilepsy specialist. We
are working on taking me off a very old drug and getting me on Keppra.
My seizures are under control, but I want to be on a better medication.
I'm sure it must be very frightening to be in your position. You need
all the support from family and friends to help you both cope and
realize that you can live a happy life. You would be surprised to know
how many people have epilepsy.
http://www.epilepsyfoundation.org/local/michigan/famouspeople.cfm
I would say the most important thing is to let your husband feel free to
listen to his own body. What I mean by this is when I don't feel well
or when I am tired, I know that I need to rest. There are times that I
can't be around crowds of people, or loud noise. I remember the first
really bad seizure I had when I was 18. I was playing cards with my
friends. I didn't feel well and kept saying I don't feel well. But
they kept saying you'll be all right we are almost finished, so I kept
playing. Then WAM I had a big bad seizure and must have scared them to
death. Of course we didn't know I had epilepsy before that. Now if I
don't feel well, I don't push myself. I listen to my body.
Please feel free to ask any questions, that is what this group is all
about.
Take care,
Julie Walton, Volunteer Webmaster
Epilepsy Foundation of Idaho
http://www.epilepsyidaho.org
I know what your going through. I am 53years old and had my first
seisure 20 years ago. At the time I was a truck triver for the Coca-Cola
Company. I was asleep and my wife said I let out a loud yell and started
tossing and turning in my sleep. Well she called EMS and when the Tech.
walked into the bedroom and took one look at me, he asked her if I had
Epilepsy. They put me on a stretcher and took me to the hospital. I was
released a couple days later. I only know this because my wife told me.
After that I would only have 1 grand-mal a year for the next 10 years.
Then something happened. I don't know what but I started having all
Kinds of seisures at all times of the day or night. My company kept me
around until I started having seisures at work, of course I couldn't
drive anymore but they did find an inside job for me, but when I had a
couple of seisures at work they let me go saying I was a hazzard to
myself and my fellow employes. I have been on S.S.D. for the last 8years
and can't Drive. I have the Vagus Nerve Stimulator But it only works so
so, Dave has a site that explains it more. and I had Brain surgery on
my Right Temporal Lobe, but that didn't work either. I know this is all
new to you so let me tell you something. Your Husband's memory will not
be what it once was due to the seisures and the meds. I have forgotten
things that I would never have forgotten if I didn't have Epilepsy.
Don't let it get you down. It's not his faught and just as frustrating
to him. I have not been seisure free since that first night. BUT MY WIFE
HAS BEEN BY MY SIDE THE WHOLE TIME. Think about that because I don't
know where I would be without her AND my 2 sons', Our oldest son has sad
he is putting his life on hold until we get straightened out, He is 27
and went out today to get a car loan and was told he couldn't get a
loan because he didn't have a credit history. Anyway May God bless you
and your husband. and nomater what you may think sometime you are not
the only ones out there with this, Oh one other thing you might want to
connect with your local Epilepsy Support Group. Good Luck
Mike H
Julie - 27 Mar 2006 04:42 GMT
Mike, I just wanted to let you know how much I appreciated your response
to the newbie, especially the part about the support from your family.
It sure helps to lessen the stress (which is a trigger) when we know we
can rely on our friends and family.
Take care,
Julie
BUT MY WIFE
> HAS BEEN BY MY SIDE THE WHOLE TIME. Think about that because I don't
> know where I would be without her AND my 2 sons', Our oldest son has sad
[quoted text clipped - 5 lines]
> connect with your local Epilepsy Support Group. Good Luck
> Mike H