Hello Rach,

I'm sorry that you're so distressed by your husband's seizures and I hope
you don't mind if I make the following observations - in the spirit of
support, not criticism.

Why are you forced to skip sleep? Or even work?

I'm not sure that's a good idea. If your husband has more seizures
throughout his life your child will have to accept it as part of his life.
If the seizures are accepted without panic on your behalf your child will
too.

One of my daughters in law has been an insulin dependent diabetic since she
was a baby. She's normally very well managed but has the occasionall hypo
when she'll behave very strangely then go into a coma. From being very small
her children were used to this, they'd had it explained to them and learned
how to restore her to full consciousness even if it had gone to the extreme.

The other day I was called to her youngest's school because his mum hadn't
collected him. The house door was locked and Edmund said that Mum must be
out or she'd answer the door. I said that she wouldn't be able to if she was
hypo, he accepted that with no comment because he understands. He's also an
insulin diabetic and it's simply a part of his life - he doesn't know
anything other than injecting himself twice a day. It frightens some people
but there's no need.

Well yes of course you could and that's what this group is about. But you'll
get different information and advice and you might even not like some of the
things you read. We're mostly living with our condition with acceptance,
humour sometimes. There are even some advantages to epilepsy, a recent
thread showed this.

You might not be able to control it 100%, don't for goodness sake expect a
magic bullet. It's not like that.

You must learn to live for the day without letting epilepsy - or any other
condition you might develop - consuming you. I have breast cancer and know
that many women are devastated when they're diagnosed but most eventually
realise that it's not the end of the world. Epilepsy is less life
threatening than cancer.

The trouble with your questions is that most of us here won't be able to
answer them. Even neurologists probably wouldn't be able to answer them.
We're not magicians, the brain is such a complicated organ and not fully
understood yet.

I shall answer the following though:

It's unlikely but possible. But so could crossing the road. Or driving a
car. No aspect of life is risk-free.

No. If he is it will probably be co-incidence.

It doesn't. In the same way that a clear mammogram for me doesn't mean that
nothing will be seen on the next one in six months time. But there's no
point in worrying about something which might not happen.

Every neurologist is different so you could get a different response whoever
you see. But if you'd be comforted by a second opinion by all means seek
one.

That's entirely up to you. It's not sensible to panic even if he has another
grand mal. It doesn't do either of you any favours, being calm and
controlled is far more comforting.

There's no telling, wait and see! There's a saying among people with cancer
that you can never say you're cured of cancer until you die of something
else.

I also have arthritis, I know it won't kill me but it's very disabling at
times. But while I hurt I live. While I'm having seizures I'm alive. While
I'm having mammograms I'm alive. And while my seven year old grandson is
injecting himself twice a day he's alive.

Please don't. You will be far happier if you accept the condition, support
your husband in ensuring that he keeps to his medical regime (but don't nag
for goodness sake) and if he does have another fit comfort him when he
recovers.

Also, keep in touch on this ng, let us know how you're going on. We do care
...

Hugs,

Mary

Many times those tests are normal.  They will probably repeat the EEG
using some type of method to catch abnormal brain waves.

It is very common for them to start with the lowest dose and then work the
dose upwards if needed.  It took almost a year to get the correct dose
established for myself, but it worked pretty darned good in the end.

I understand your problems here.  Your husband really can't get fatigued
though because for a lot of folks it can contribute to appearance of
seizures.  You will never be able to protect your son from these "scary"
things.  In fact, you will need to provide a little training to your
child.  You can't make a child responsible for an adult's care at any age,
but at some point soon he will be able to call mom if dad has a seizure.
He definitely has to be aware of safety issues so he doesn't accidentally
get hurt during your husband's seizures.  You know, after a while these
physical things, the problems, just become part of life and are accepted.

Many times the tests you mentioned are normal.  For many people, the EEG
will only show something if the person is having seizure activity (before,
during, after).  If there is nothing structurally wrong, the MRI and CAT
scan, of course, will be normal.  I am assuming your husband received a
complete medical exam to rule out other possible causes of seizures.

That only happens with a minority of people.  Also, if he did have
photosensitivity, it might take a long time to figure out what his
triggers are.  Fatigue and alcohol are common triggers too.

Whatever it is that caused the seizures probably was present before he had
the seizures (in most cases).   Sometimes people have seizures in their
sleep, which are not witnessed by anyone.  And there is the possibility
that he has been having (or had at some point in the past) a localized
type of seizure and just couldn't recognize it for what it was.  I mean,
for example, simple partial seizures and complex partial seizures in my
case started out slow and of low intensity.  I just thought the symptoms
were from other things (hormones, aging, poor nutrition, etc.).  Any kind
of focal/local seizure can spread to grand mals.

I've been told that there are a lot of people born with the tendency
toward epilepsy, but some may get it and some are spared.  I guess in
addition to having the tendency, a person may need the right conditions to
force it to appear.  I use the story of a high school athlete who has
inherited a tendency to have knee problems and then gets a knee injury
during his high school years.  The injury heals and everything is fine
until he reaches age forty and suddenly has arthritis in that knee
joint.   The initial insult to his brain could have occurred anywhere from
prenatal onward and it was just waiting for the right conditions to become
evident.

The only dangers are from seizures that don't stop and then from accidents
or injuries that happen during a seizure.  The last person I knew who died
had a seizure while in a bathtub, and it is believed she actually died
from burns from the hot water.  Her death might have been avoided if the
hot water heater had not been turned up full blast.   The safety issues
are something you and your hubby will need to look at.

No.

It doesn't.  I have a feeling you are also rushing to get this resolved.
It generally doesn't work out as quickly as you want.

Never heard of that one.  I mean, you get people who get hysterical (not
the patient) and rush to call an ambulance.  The patient shouldn't have to
bear the result of someone else's' fear.

There are other conditions that could cause seizures like diabetes, heart
conditions, etc.  Heck, even pregnancy can cause seizures in some people.
High temperatures cause seizures in some people.

You'll get over the panic but you might never get over being somewhat
concerned.

Well, some of the medications they have today are darned good.  There are
also more options available today than we had 30, 40, or 50 years ago.
For adults, it is rare for them to outgrow epilepsy (unless there is an
underlying reason that can be fixed).

Hey, look at all of us on this board with epilepsy, and the majority of us
are doing pretty well.

Barb

hi, my brother has had epilepsy since he was 14. he and his wife of 30+
years just got back from vacation, a cruise they thoroughly enjoyed. they
are the parents of 2 girls, both college educated, and have an adorable
grandson. just wanted to tell you that even though life can get rough and a
diagnosis of  epilepsy is scary, you can survive and prosper. I also have
epilepsy as well as my brothers youngest daughter, the mommy of his
grandson. we still do not know the cause of any of this and may never find
it out. FTR, I have 3 grown children and a 3 year old at home.

God bless you and yours.
Wendy

Welcome to our group Rach.  In addition to the support from this ng,
getting in touch with the Epilepsy Foundation http://www.efa.org (here in
the US) or a similar support group in other countries can be very
helpful.  If you live here in the states, you can find the Epilepsy
Foundation in your state by doing a search for local affiliates.

It may take you awhile to get over being terrified, but you must find a
way to empower yourself so that you and your family can lead a balanced
happy life.  Your husband will need your love and support.  Your child
will need to understand her dad's seizure disorder so that she can easily
explain it to her friends and if daddy needs her help, she will know what
to do, and instead of being terrified, she will be proud that she was able
to help.

Learn as much as you can about epilepsy and teach your friends and family
so that it will not be something to be ashamed of.

I will let others answer some of your questions, I will make a few
observations from the standpoint of a person who has had grand mal (tonic
clonic seizures) and have had a terrified spouse watching me.

1.  When we come out of a seizure things are a bit foggy, one of the
things that bothers me the most is when my husband tried to awaken me by
yelling my name.  It takes awhile before we regain our senses, so I
couldn't talk at first, but I could hear him yelling, this just really
bugged me.  He soon learned to calmly talk to me, tell me I have had a
seizure and be there for me.

2.  After a tonic clonic seizure we go through what I like to call the
feeling that you've been run over by a mac truck.  Our muscles have been
through quite the work out and we are exhausted.  So I need to sleep, it
makes it so much easier to get better if people understand this and don't
expect much from me for a few days.  Sometimes it would take a couple
weeks before I got back to normal.

3.  You wonder if life will always be like this, seizures all the time.
Some of us have been able to get our seizures under control with
medication and really taking care of our needs (rest, knowing what our
personal triggers are, staying away from stress, taking our meds).  I have
gone over 8 years without a tonic clonic seizure.  But, I am always aware
that I could have a seizure.  In may case, a trigger has been irritable
bowel syndrome, so I have had to really watch what I eat.  I stay away
from MSG.

4.  If your husband does have another seizure, please don't start
questioning him as to why he had a seizure.  I remember I had a seizure
and a family member asked me why I had a seizure, did I forget my
medication.  That annoyed me.  Yes I had taken my medication.  Even though
we have our seizures under control, there may be times when we just have a
seizure.

This group is here to help you understand, so don't feel confused, we will
try our best to help you to cope with epilepsy.  It will be a challenge,
but there are many here who have figured out the key to successfully
coping with seizure disorders in ourselves or our family.  Feel free to
come back with your concerns and questions.

Take care,
Julie Walton, Volunteer Webmaster
Epilepsy Foundation of Idaho
http://www.epilepsyidaho.org

Wow, they got him through the scans impressively fast. I know it doesn't
seem this way to you but when I read the above I though "phew, that's *good*
news, he's just got idiopathic [no underlying cause] epileptic". The point
being that seizures that start when you're an adult can be a symptom of
something else which is much worse, like a tumour or a stroke. That his
scans show negative is therefore good news as epilepsy itself may be
annoying but it's seldom fatal.

This I found a bit surprising as when I went through this is the early '90s
(I had a single tonic-clonic) the advice then was no treatment after the
first seizure assuming no underlying cause could be found as one offs aren't
that unusual - I certainly didn't have another at the time (I've got
symptomatic epilepsy now - I had stroke). Although as it turns out ...

.. putting him on AEDs was the right course. ;-)

This is not unusual. It takes a while to get the AED dose right. The medics
like to start at the minimum effective dose and work you up until they find
the effective working dose for you, and that varies. For example I'm on
Epilim (sodium valproate) and I started on 600mg/day, I'm now on 1000mg/day
after another seizure and the maximum recommended dose is 2400mg/day(!)

See above. Other then the EEG they weren't testing for epilepsy, and many
epileptics show no abnormal results on EEG. What is on his medical record
is that he has had seizures. Something like one in twenty people have a
least one epileptic event in their lifetime, it's not that unusual.

Because epilepsy is a broad church and different people are triggered by
different things or nothing obvious at all (as is the case with me).

I get the impression that no one really knows. The second is easier to
explain than the first: once you've had one you're a lot more likely to have
another - the brain seems to "learn" how to do it.

There is a condition called "status epilepticus" where you go into seizure
and don't come out on your own. It can kill you but it's relatively rare and
it's more dangerous if you're symptomatic or elderly, neither of which you
husband is. Other than that the only real danger is him having a seizure in
a dangerous environment, so for example if he's a swimmer he should buddy
swim.

Dunno. Ask your doctor.

Ah the joys of living in the US (I assume that's where you are?): we have to
wait a year in the UK :-(

Statistics I guess.

Depends which country you're in. That's certainly not true here in the UK.

Sounds like your neuro is doing exactly what I'd expect.

I'm sure Beth, my other half, will be along in a minute ...

Again that's something for your doctor.

Paging Beth ...

Hi Rach, me again.  Not having much luck with technology at this end.
Got your email, but lost the whole thing whilst trying to snip out my
original message.  Anyway, I looked up convulsive syncope on Google & it
appears to be a cardiovascular condition -sudden drop in blood pressure
& blood flow to the brain can cause an apparent siezure.  The following
is taken from www.medtronic.com :

"The differentiation of epilepsy from cardiovascular syncope with
seizures due to transient reduction in cerebral blood flow is difficult.
This may lead to a misdiagnosis of epilepsy and unnecessary and
ineffective treatment with anticonvulsant medication. It is believed
that many patients who respond poorly to treatment and are labelled as
having "treatment resistant epilepsy" may have a cardiovascular cause".

Try entering "convulsive syncope" in a Google search - there's a whole
bucketload of stuff there.

Hello Rach,
Hope the comnments you've already revceived have helped.

I've had epilepsy for 4 years, I'm 38 and it came out of the blue. No
cause was found.

It is scary - I was terrified of my body 'letting m down' and of being
alone. But bit you bit you get used to it and learn to adapt.

Take it step by step. My husband started off by watching me like a
hawk, whilst trying to pretend he wasn't, (which didn't fool me!)After
a few months he would leave me alone and go off for a business trip
without a backward glance. I think we both just decided that worrying
about it wasn't gong to stop another seizure happening and in the
meantime we had to get on with our lives. You will get to that point,
I'm sure. Raed as much as you can, ask lots of questions, get a second
opinion and a third if you like. Information really helps.

As I said, I've had epilepsy for 4 years. I had those 2 grand mals,
then a few 'absences' but nothing now for about 2 and a half years.
The neuro is sending me for tests and then will decide if I can start
reducing the dose little by little, with a view to coming off it. So,
who knows? Epilepsy is sometimes here to stay, sometimes a phase in
your life. You can't know that now but have faith. It will get less
awful and less scary.

Anyway, this is a good place to get support and advice and
information.
Christine

Hi Rach

Hope this helps:

1.    Approximately 70% of persons with epilepsy have normal EEGs
      or MRIs. There should be no "label" unless there is a diagnosis.

2.    Only certain types of epilepsy respond to photosensitivity triggers.
       Most are affected more by stress, sleep deprivation, drugs and
       alcohol.

3.    There are many possible causes....brain injury, stroke, tumor,
       heredity....only to mention a few. Sometimes, after a head
       injury, it may take years for seziures to occur.

4.    Rarely, put possible (do a search on SUDEP).

5.     Probably not; however, some forms of epilepsy have a genetic
       link. A good question to ask the neurologist.

6.    There are no predictors. Being seizure free is never a full
       gaurantee of what will happen in the future; however, it
       does indicate that the seizures are currently well controlled.

7.    The laws vary from state to state. Check with his neurologist
       and the local DMV office.

8.    When in doubt (not denial), you should get a 2nd opinion. There's
       a lot riding on it. If possible, try to find an epileptologist ( a
neurologist
       who specializes in epilepsy). Also, contact your closest epilepsy
       services provider. They can be very helpful in recommending
       someone for you to see.

9.    The toughest one to try to answer. I have heard this question from
       hundreds of clients and there is no "right" answer. Hopefully, as
time
       passes, you will become more comfortable. Some people have auras
       (warnings) of an oncoming seizure and they, or family members, learn
       to recognize them. Others are not as fortunate and have no auras.

10.    Some people do "grow out" (some refer to remission) of their
seizures.
       The general rule of thumb is to remain seizure free for a minimum of
2 years
       before a trial taper of anticonvulsants. This is not an ironclad
rule......some
       forms of epilepsy are known to be lifelong conditions, requiring the
continued
       use of AEDs.

I hope this helps. Feel free to email me if you have any other questions.

Regards
Michael

If nothing shows on MRI tests etc, I'm surprised epilepsy has been
diagnised but having epilepsy on one's records only matters if those
reading it are prejudiced against people with epilepsy.

because different things trigger fits in different people. It has been
said that lights flickering at a certain rate might trigger fits in people
who don't have epilepsy.

impossible to say.

epilepsy is only fatal if it is completely uncontrolled and becomes status
epilepticus ie non-stopping seizures or a bad accident is caused by
convulsions etc

It's unlikely if your hgusband's only started recently and there's no
history in the family. and even then it may be quite possible to have
sufficient control for there to be no fits.

It doesn't but just that he's no more likely, perhaps less because he is
taking medication, than anyone else

Just reassure yourself that nothing drastic happened last time, that your
keeping calm and (apparently0 taking it all in your stride will be a great
help to your husband. I always reckon it's worse for my husband than for
me because I don't remember what I do during a fit or the automatic phase
I have afterwards. During the latter I'm often declarung that I'm
terrified.

Impossible to say but I've survived 32 yrs with mine and find depression
far more difficult to live with

You might benefit from some counselling or meeting others with epilepsy in
their families -starting up a local group would help them too.

Chris L