What to expect

[sparky]

Hi everyone,
I am new to all of this, A week ago epilepsy was just a word to describe someone else's problem but now it has a whole new meaning!
In retrospect I know that I have had epilepsy for a few years but I didn't have a proper medical diagnosis until a seizure caused me to fall and break three ribs (very hard to ignore) last week, I am Lucky that it was not my head or worse that got broken.
I have had a number of seizures in front of my wife that scared the heck out of her but I still refused to seek out any medical attention or advice telling her that nothing could be done and that I wasn't interested anyhow, the reality more likely was that I did not want to face the truth and hoped that it would go away, well as most of you all ready know it did not go away and now I have the broken ribs to prove it. ( the price of stubbornness I guess )
I now am under the care of a doctor and have started taking Keppra 500 Mg 2x daily
I have been reading the posts to try to assimilate as much knowledge as possible and to try to make up for my past oversights.
What I would like to know is:
What should I look out for?
What typical problems are coming my way?
What should I do or can I do to alleviate the concerns of my family ?
And any other advice or wisdom that anybody experienced in this can share with me.
Thanks to all,
Sparky

 

[Melpier]

I have never had this happen because i've has seizures since I was 4, but If they haven't yet they will probably take away you Driver's license. your family and friends just need to be supportive and try to make sure that if you atart having a seizure nothing is around that you can hurt yourself on. You need to know that it is inevitable that you will hurt youself. I have burnt myself on a crock-pot (I grabbed for something) I Busted my head open in a resturant (I was more concerned about the blood on the floor then my head). You should always keep you mate Informed of how things are. The best advice I can give is dont give up on living - you family and friends can keep your will strong.

 

[sparky]

Thanks,
This whole experience has been a very humbling one. I expected the drivers licence issue to come up but I am hopping that it doesn't
again thanks
Sparky

 

[Nakamova]

Hi Sparky --

It's great that you've come here for information. I've found that the more you and your family know, the better.

If possible, I recommend that you keep a journal -- a record of diet/digestion, sleep, stress, overall health. It can be helpful in potentially isolating seizure triggers, and also in keeping track of side effects.

Keppra has been know to make people emotionally volatile or cranky ("Kepprage"). I'm hoping this is not your experience, but if it is, let your family know where it's coming from, and also try supplementing your diet with B6, which can help.

For me, the challenge of epilepsy has been tri-part: the actual seizures, the side effects of the meds, and dealing with doctors/health care establishment. I hope your experience is stress-free on all three counts, but if it isn't don't be afraid to ask for help; be proactive about your quality of life; be persistent in getting answers.

Best,
Nakamova

 

[RobinN]

Hi Sparky -

What should I look out for?

Look out for conventional medicine only offering meds, surgery, and hightech implants.

What typical problems are coming my way

That this disorder is unpredictable

What should I do?

Consider alternatives, consider that you were fine for many years of your life. If there was no head injury or brain surgery, or virus... then please consider that these episodes are symptoms for another cause. Consider nutritional changes, consider mineral deficiencies, consider blood sugar imbalances, and keep searching.

I did and my daughter remains seizure free, and med free. She was having 6 tonic clonic seizures each month. After making nutritional changes, and doing neurofeedback, she is healing beautifully. I do believe as many do, that neuro health begins in the GI tract.

What can I do to alleviate the concerns of my family?

Suggest this website, so they can ask questions.
Keep a journal, of nutritional choices, sleep, stressors, health concerns, feelings etc.

Epilepsy is only a label that describes someone that has had two or more seizures.
Seizures are only a symptom of another cause.
Finding the cause is not easy, but worth it in the long haul
Alternatives are not a quick fix, but do not contribute to the problem.

 

[dfwtexas]

Hi, welcome to our group. I got diagnosed last year at age 47 and found this to be the best place for information and support.
I am on Keppra also. Neuro started me on 500 mg 2xs a day, but had to have my meds adjusted a few times. Now I am on 1000 2xs a day.
Keeping a journal is a good idea. It helped me to determine triggers for my seizures. Lack of sleep and stress seems to be very common triggers. I also have photosentivity, although it seems to be limited to certain light sources.
Have you determined what kind of seizures you are having? Grand mal or petite mal or both? I learned that I would have simple partials (or auras) prior to my complex partial so I would know I was about to have a seizure. But not all people have seizures.
Seizures vary from person to person...but I have found that I ususally can find others on here that have similar experiences or symptoms.
I am having good experience with the Keppra. One item that you should be aware of it generic Keppra. There are a lot of people that have problems with taking generic seizure meds (I was one of them), I would recommend asking dr to keep you on brand name meds if possible.
Communication with others is key in getting support for you

 

[Meetz1064]

Hi, helo and

how do you do? Welcome to CWE. Mr B., our host, has built us an AWESOME home here.

I am one who has NOT had a pleasant experience with Keppra. However, my reactions to it were, shall we say, a bit on the unusual side, so take that with a grain of salt.

I do have a list of things that you should put in an E journal. And Robin is right. Nutritional changes are a big part of controlling your seizures. I have used the G.A.R.D. diet over the last several years to help control mine, until I was recently diagnosed as a celiac patient, and my diet became more strict. And yes, it worked. That said, here's the list:

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM.

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


Responses to the Above List

1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.


*****NOTE***** Some people have found that keeping track their bowels--and their movements--are also important, as they have found that sometimes they trigger the seizures.

**************

Enjoy your time here at CWE. There's lots of friends to be made, information to found and all sorts of other things to check out. Feel free to check out the Library and Kitchen as well as the Padded Room should you ever feel the need to vent. Trust me, we've all done so at one point in time.

Take care,

Meetz
:rock:

 

[sparky]

Thanks,
The Journal keeping idea is coming up a lot and it does seem like it has a lot of merit to it.
I have heard about "KRPPRAGE" and am hopping that it misses me.
My poor wife, first she has to witness me having seizures and now the help/cure might make me into more of a jerk, I am determined not to let this happen, but the reality is that a lot of other people have most likely also tried just as hard or harder to keep their cool but with the same results.
The tri quality of this has already raised it's head (The affliction, The medicine and the Medical community itself)
Thanks for sharing,
Sparky

 

[sparky]

Hi, My wife and I have been going over the last few months trying to flush out any triggers to my seizures ( according to my wife, I have had every kind of seizure that there is)
The one thing that keeps coming up is STRESS and unfortunately most of the sources of stress in my life right now are beyond my control (I know that this adds intensity to the original stress source.) so it seems that if I can't control the source of the stress then I need to learn to control my reaction to it instead. I have to learn to let things go and chill out in general, I am learning that this is a lot easier said than done, but at least I now have a target.

 

[darcness]

Hi, My wife and I have been going over the last few months trying to flush out any triggers to my seizures ( according to my wife, I have had every kind of seizure that there is)
The one thing that keeps coming up is STRESS and unfortunately most of the sources of stress in my life right now are beyond my control (I know that this adds intensity to the original stress source.) so it seems that if I can't control the source of the stress then I need to learn to control my reaction to it instead. I have to learn to let things go and chill out in general, I am learning that this is a lot easier said than done, but at least I now have a target.

Have you looked into any therapy? Cognitive Behavioral Therapy (CBT) is a great tool for doing just what you said, chilling and letting things go. My wife has E but it caused me a major meltdown due to the stress and worry. I did CBT and really learned how to process my feeling/emotions in a healthy way and it's helped tremendously. Perhaps something you could look into for yourself.

 

[knothing]

What typical problems to expect? That may be the most loaded question involving anyone having seizures!
Everyone is truly different but yet stangely similar to someone else. Here is a list of suggestions and like anything else this is just a list I am not a doctor and take it for what it is.

1. Research, research, research. Go to more than one place for you information.
2. Always seek a second opinion because 2 heads are better than one.
3. Work with your family on how to respond properly to a seizure. Create an action plan for work also.
4. Research the state laws about driving in your state. If the law states you cannot drive for 3 months keep off the road. I know that if I drove during a ban and I had a seizure and killed someone that my state would go at me full tilt.
5. Read Meetz list above it is very helpful.
6. YOU are in charge of your care, nobody can make you take meds, have surgery, or go all alternative.
On this site you will find just about every story possible and myself I always try keep track of where the advice is coming from. I don't mean the person but where Epilepsy has come into there life. A parent of a child with seizures is coming it at a different way than someone who has had this their whole life. My wife is(and always has been) a seizure free person and I am not so how she views this is different.

Welcome to the website and the best of luck in finding what you need.