KrystlM - new to the forum and Epilepsy

[KrystlM]

Hi there!

Back in April I had my first experience with a tonic clonic at 39. We've been through the EEG's, CAT scans' blah blah blah and are still trying to get this bad boy under control with meds. Of course, thus far, no one seems to know what brought this on. The license has been snatched, if it wasn't I'd be too terrified to drive anyway because the seizure happened while I was on the road and only because of my fast thinking boyfriend, no one was hurt but the truck.

Life however, has spiraled out of control and emotionally I am in the pit of you know where. You know, life has changed dramatically, and I am a VERY independant woman. This has changed. I am unaccustomed to being babysat, not being able to go to the stinking store alone etc etc. I'm sure folks here know what it is I'm talking about.

The job thus far has been understanding, but I've known this boss for a long while. Unfortunately we had a management change recently and she is gone, we now have new management in place and are waiting to see how it plays out. Needless to say the stress trigger has NOT been friendly to me and the complex partials have abound (thankfully not tonic clonics).

I need advice please on how to cope with the epilepsy until we get it under control. I've come to the realization that I haven't accepted that life has to change and that *I* have to change my mindset of independence, etc and accept that it may or may never be under control. We'll just have to wait and see by going through the different meds (which we are doing now) and that these meds are expensive.

Coping advice.. anyone anyone?

 

[homemom360]

the best advice i can give you on coping is two words "support system" having people around that not necessarily understand your situation but are willing to help you with it no matter what, you say you have a boyfreind, is he someone you can talk to about this?
this forum is real good for that, but it is a good idea to have a person with a body to talk to too, someone that is a physical support as well as emotional.
the other thing is to try to get the best dr. possible, and i don't mean the best in the field, but i mean one that asks you for your questions and concerns and then takes the time to address them. no just a dr. that gives you pills and sends you on your way, but one that is interested in finding out what is causing your seizures so that you can be properly treated. i just recently found a dr. like that and it makes a big difference in the way you look at your treatment, you will look forward to seeing the dr. instead of dreading every appointment and you can make lists of questions between appointments with the confidence of knowing that you will have at least some of them answered and all of them addressed. i hope this helps at least a little.
the reason i say all this is because i had no support system when i started having seizures and i look back on it and realize the difference it would have made in my ability to cope and make possitive changes...good luck in all your efforts and i hope they do their best to help you...

 

[skillefer]

Hi Krystl! Welcome to CWE. I, like you, am an independent person. I have tonic clonics, and it usually ticks me off or annoys me when I do. My hubby is very loving and supportive, as is my mother-in-law. My suggestion is to take a proactive approach. Learn as much as you can about your seizures. Keep a journal. In it, write down how much sleep you get every night, any stresses your under, everything and how much you eat and drink and when. Also log when you have your seizures and how long they lasted. Then, see if you can find a pattern. Some women find that they are more likely to have seizures near their time of the month. Or, you might find a pattern as to certain triggers like lack of sleep or the number of cups of coffee. Hmmm...you were 39 when you first had a seizure....could it be due to hormone shifts around menopause? If so, maybe the doc can prescribe a hormone cream. Also, try taking up meditation or walking to relieve stress. And I strongly recommend getting a medic alert bracelet in case you have one while you're out of the house. That way the
EMT's will know what they are dealing with. I've found that you cannot live your life in fear of the next seizure. I live mine. And when you start getting more comfortable, you might find that life doesn't feel quite so bleak. I hope this helps.
Feel free to ask questions, vent, or just chime in. We're a pretty friendly group.

 

[Bernard]

Hi KrystlM, welcome to the forum. :hello:

Coping comes with either acceptance or victory IMO. Acceptance can mean changing your entire world view (priorities, life goals, etc.).

Make yourself at home here.

 

[RobinN]

KrystlM - welcome to CWE
I see this a bit differently than some. Reading your story you were 39 yrs without seizures. No accidents or TBI or illness. What makes it different now? You need to return your body to health. Something pushed you over your threshold level. We all have this "level" some are just lower for different reasons.

I believe in starting with nutritional changes to become proactive. It isn't a quick fix like the meds are, but it will make you healthier in the long run, while the meds will only cause other symptoms to occur over time. You need to begin eliminating everything that is not useful in a nutritional sense to your body and then begin supplementing where you might find a deficiency.

I am sorry that you are experiencing this at this time of your life.
My daughter is 17 and is still not fully controlled but we are on the upswing I believe.
She is med free.

 

[KrystlM]

Hi KrystlM, welcome to the forum. :hello:

Coping comes with either acceptance or victory IMO. Acceptance can mean changing your entire world view (priorities, life goals, etc.).

Make yourself at home here.

Thank you for the advice everyone.

The acceptance is a little hard. My priorities and life goals, IMO were pretty darn straight to begin with. I felt I had a pretty balanced view prior to all of this happening. Work/life etc., this whole thing has not been easy; and I do realize I'm singing to the choir.

I do have a b/f who is supportive beyond what I could ever hope for.

Work folks have no idea of what I'm going through and because I do my best to not let it affect my work life they seem to not realize how much it actually does affect me, how hard it is going through medication changes (side effects etc) while we get this worked out. I have a co-worker whose step daughter has epilepsy and seems to think that she knows all because of this and of course this is irritating because this comes in so many shapes and sizes "oh just go get (insert medication here) it works for my step daughter, it should work for you too. bleh, I'm just venting, please excuse me.

Thank you again for your advice, thank you for the board period.

Peace and blessings to all

KrystLM

 

[brain]

:hello: Krysl!

Welcome to CWE! Coping can be quite the
challenge, because everyone is different to
a degree ~ depending on the environment,
situation, circumstances, atmosphere, and
so on. This also implies to those around you
as well, their attitudes can have an impact;
negatively or positively or merely being neutral.

The main point is - coming to accept that one
has Epilepsy and quit being in denial, like I did,
which I kept sweeping it under the carpet (hiding
it) - and the fears that lies within ... from the
personal perspective. Coming to grasp it to the
realistic realm that you have it, but you don't
have to let it have you! That's why many can
quote "I have Epilepsy but Epilepsy doesn't
have me!" So the first step is to come to realization
that you have it, and not to deny it.

Then the other issues that many have to deal with
are the "OTHERS" - whether it be family, neighbors,
co-workers/employers, friends, and so on. You can't
change them - but you can enlighten them, by giving
them information - for KNOWLEDGE IS POWER!

UNFORTUNATELY --- not everyone is going to be
receptive of this, this is no fault of your own! It is
THEIR PROBLEM, not yours! For in this I must imply,
it is because "they are set in their ways" and "their
mindset has been also set in their ways". Those types
of people are the most extremely difficult people to
deal with no matter how you try to butter that toast,
it just runs off of them like water to a duck's back!

Not much you or I or anyone else can do about this,
for only THEY can opt to elect to become open-minded
and become receptive of receiving information, knowledge,
insight, and so much more pertaining to Epilepsy.

The world would be a lovely place if everyone would be
receptive and open-minded towards people with Epilepsy,
but unfortunately - it's not the case!

People with Epilepsy and Caretakers, including friends and
families and those who knows people who have Epilepsy;
have become advocates / fighters - to make a stand to
become a power-force to make this awareness known
and bringing Epilepsy OUT OF THE SHADOWS...

So your first progress is to become enlightened and
learn and develop a positive attitude, rather than a negative
one - for attitude plays a dramatic and powerful force upon
everything, for it has been said repetitiously, "ACTIONS
SPEAKS LOUDER THAN WORDS" - people are SEERS,
and what they see in you, will cause them to become
more receptive of you - it's far more than words can
say! It does help to gather and associate with those who
are more positive influence.

Even calling Hospitals around you to find and locate Support
Groups, if there are no Epilepsy Chapters or Epilepsy Affiliate
Chapters or Epilepsy Organizations / Agencies around you.
There may be some private Hospital support groups. Clicking
on the Epilepsy Foundation logo on my sig-line below will help
you even more in addition to hanging around here in Coping
With Epilepsy - for the two and two will be a tremendous
impact and driving force upon your life and you'll have a brighter
future in store ahead for you and your life!

You Can Make It!