The "something new" i didnt expect...

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Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Hey Rae,

Welcome to CWE. Good to have another Canadian.

How long you have to go without a seizure before getting your license depends on what province you're in. Here in BC they lowered that time from a year to 6 months, that includes the staring spells.

As for the EEG & CT scan I've had tons & they're a pain but nothing to really worry about. Most of the technicians that put you through the scans are pretty cool. When I was younger I asked the EEG technician if I could have a little strip of the print-out to take home & he let me. I thought it was cool to have it pinned up on my wall in my bedroom.

Also you might want to start keeping track of what/when you eat, when you wake up & go to sleep & most of your daily habits. That might help you figure out what triggers your seizures. I know Meetz has a great list of things to track.
 
Alrighty then

Here it is. But it is long..........

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

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. ****side note**** Auras ARE partial seizures!!!

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 where the actual given name is GARD—it stands for Gut Absorption Recovery Diet).

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.


********side note*******some people do also keep track of their bowels, as they find that that can also be a trigger....honestly. Sorry if TMI.
 
Okay i just noticed that i spazed out on the last message. Soryr guys that happens too. i'll repeat my last motion sometimes when i have an episode. mostly when my fiance asks if im okay just before i have one. ill repeat "im okay" over and over until im finsihed. I also at work notice that i'll re-type things like my brain goes back and say i didnt write that yet. terribly sorry...

Anyway i am currently putting that list into Chart format so i can fill one out every day and then in addition to when i have a episode or seizure.
Thanks so much!!!
*hugs and hugs*
 
Hey, it's

OK. Don't worry about it. We're all fine with it, Rae. :) No big deal.. :)
 
ANd thanks Epileric!
being canadian is a perk when it comes to health care, but the waits are still long.
 
Rae1889 said:
ANd thanks Epileric!
being canadian is a perk when it comes to health care, but the waits are still long.
Click to expand...

*sigh*, I know...... I have to wait 10 months for my MRI since it's not an emergency.
 
Ditto,
Well i found outt how to add an avatar. And i think it time for a nap. i'll sign on after!
Thanks for all the help and i will keep you all posted.
 
Hi welcome to the site
The blow to the head followed by shaking for 30 seconds would have been your first seizure followed by sleeping which is typical of a tonic-clonic seizure. I had a blow to the head at age 4 and it was similar but there were people around that knew it was a seizure. Back then there were no MRI's and even less knowledge of seizures. Did you inform the doctor of that instance and hitting your head?
You need to be proactive with this. I am unfamiliar w/ the Canada healthcare system but you really need to see a neurologist and more than likely get an MRI. Myself I would focus on the blow to the head first. Worst case is you eliminate that and move on to investigating further and into other causes.
Please research seizure and epilepsy before talking to the dr. The more information you have the better off you are.
 
Hello! Welcome to CWE. :) I'm Skilly. :) Meetz mentioned me. :) Since you're getting married, another important thing to remember is, if you are diagnosed or placed on medication, let the doctor know whether or not you EVER plan on getting pregnant. And if you do, then make sure that you start taking 800mcg of folic acid NOW. :) Folic acid helps to minimize chances of certain birth defects...and unfortunately, most AED's can produce birth defects in children. I'm not saying that they definitely will, but you need to know.

Also, if there is any history at all of diabetes in your family or hypoglycemia, definitely watch your blood sugar. Low blood sugar can trigger seizures or even comas. Typical "triggers" (stuff that can make you seize) are stress, lack of sleep, too much stimulants like caffeine, low blood sugar, the stimulants in OTC decongestants, flickering lights or patterns, certain pitches, etc... Each of us in different, so try to jot down where you are when you have a seizure as well as what you were doing prior. Some people get triggered by the lighting used in places like Walmart.

Check out the thread in my signature for basic info. I hope this helped. Just remember that you aren't alone. And feel free to ask questions.
 
Just to answer a previous question, that doesn't seem to have been answered (unless I've missed it, which is equally possible right now, not been on in a few days as seizures have been plentiful unfortunately, not so bad today) ,but not wanting to scare you, yes it is possible to go into status with the 'staring episodes'. It just means that you don't snap out of it. ANY seizure of any type that lasts for over 10 minutes should justify a hospital visit.
 
Thanks Loudmouth. That helps and also scares me as sometimes they last almost 10 minutes. I guess i should start getting more cautious when that happens. And i do have anywhere from 1-6 staring episodes in a row. Where i will briefly recognize what is going on then straight into another. I had three unconscious twitching seizures in a row. I didnt know at the time that it was a big deal. I guess i am prone to Status (??)
 
Hey Rae, welcome to CWE. I guess I'm a bit late at joining the party, but at least I showed up! :)

My wife has E and we've been struggling with it for the last 7 months ourselves. It's pretty scary when things first happen and you realize that something isn't right. However, over time things DO get easier. Many people can be on AED's or even natural remedies and be seizure free for long periods of time, or even for the rest of their lives. It's certianly not the end of life as you know it.

As others have said it's important that you really get to see a neuro as soon as you possibly can. An MRI and EEG's are your best bet in terms of finding out what's going on. Push for longer EEG's too. I'm going through that with my wife now and I'm just about to tell her neuro to shove it and find another. He hasn't done anything longer then a regular short EEG and he hasn't checked her levels in a while either, despite her inquiring to do so.

When it comes to E you have to be proactive. Educate yourself, document everything you can, and make sure your doctor knows what's going on and is willing to listen to YOU.

Stick around here on CWE and enjoy your stay. Ask any questions you want, rant about anything you please, and make new friends.

I hope you get some answers soon.

P.S. Make sure you tell your doc about the status seizures. It's VERY important to know what to do when it happens. Perhaps talk to a GP in the mean time if you can't get into a neuro. At least you could get on something for the mean time or get advice on what to do about the status and seizures in general.
 
I definetly will. I have a whole sheet of questions i want to ask now. I also want to know if there is anything from your significant other do to help them cope. My fiance gets so scared and i hate waking up to him having tears in his eyes and barely able to choke out words. It makes me feel so bad. But he tells me he cries becuase he see me suffer and can't take that away and says he isnt living up to being a good husband in the future. I tell him there is nothing he can do until the doctors know what to do. So what do the people in your life do to cope with E?
 
(((Rae)))

Well, well. I can certainly answer this one. As most of the regulars here know, I'm here becaused of my wife, who has E. I didn't do too well at coping at first either. In fact, I tried to run away from it at first. Always trying to stay busy, trying to put it out of my mind.

That worked until my wife had a tonic-clonic seizure in front of me and I went down hill pretty fast. Within 24 hours I had the first panic attack of my life. Couldn't breath, arms and legs going numb, and thought I was having a heart attack. After that it was a daily battle to get a hold of myself again.

What I found to help was being in contact with my wife's doctors, coming here to CWE, therapy for myself to learn to cope, and educating myself as much as I could. I basically went from trying to put it all out of my mind, to taking as active of a role as I could in helping my wife get better. I much prefer this active role. Not only does it help me feel like I'm being a good husband, but it also helps me to learn and cope.

Communication and education are pretty much paramount when it comes to E. Talk to your husband and explain to him how YOU feel. His fears likely come from worrying about you. If you tell him that you can handle this, he will likely feel much better. Also, take him with you to all your appointments, have him help you with your diary, and just let him support you through all of this.

It's not easy on those with E nor the ones who love them. The thing is, the initial shock is the worst. After that you realize that there is plenty of support, treatment options, and ability to manage E. That's when the true healing starts. It just takes time and patience.
 
In my life there are 3 types of people in dealing with E or at least with family.
1. Those who ignore it. They are always the ones that have never seen it.
2. Those that always ask how you are doing and are always over concerned.
3. The final are those that handle it with perfect balance. Just enough concern and just the right amount of giving you space.

Thankfully my wife ,having seen 3, handled the first one she saw perfectly. She does only really get upset after telling me a 3rd time that I had a seizure. I don't know how she does it because she has never been trained or in that situation, then again she has to deal with me fighting her to get up the whole time.
 
I do that too. i fight him to get up and get away. im not sure who he is for a bit and that scares him too. I feel really bad after and then i just wanna sleep. He's always worried that one day i'll never remember who he is.
 
Thanks Bernard.
I'm going to check that out, when im off work and done cleaning my silly apartment and iprobably have to turn off my alarm clock *dont ask lol* going to visist the fiance's parentsthis weekend and have my paretns watching out kitties. I think im going to get my fiance to join this forum. He needs alot of support of knowing how to "deal" with me. Thanks so much guys. I look forward to signin gon in the mornign to check for posts and answers. I'm going to continue to relate my new experiances and questions to you all.

One question. I was looking at some post and looking up EEG (i have one on November 26th) and was wondering if it hurts. Someone said something aboutUNDER *horror!!* the scalp? and needles???

Also this glue doesnt need to be cutout of your hair dodes it? just regular shampoo can wash it out?
 
Rae1889 said:
One question. I was looking at some post and looking up EEG (i have one on November 26th) and was wondering if it hurts. Someone said something aboutUNDER *horror!!* the scalp? and needles???

Also this glue doesnt need to be cutout of your hair dodes it? just regular shampoo can wash it out?
Click to expand...
The only time an EEG hurt for me was when the technician was scraping away the hair & skin from my scalp and was too pre-occupied flirting with the female tech while he went a little too deep. I was much younger & too scared to tell him to pay attention. When done properly they don't hurt, even the moving the hair out of the way part. Who told you about going under the scalp & needles? That's not true or they wouldn't need glue.

As for needing to cut your hair...... it might take a few washes to get the glue out but I used to have really long hair & it washed out in a 3 or 4 (or was it 4 or 5) days.
 
Welcome Rae! You've found a great group** AT this house? EEGs a regular thingy. Just bring stuff to keep you busy. That seems to be the hardest part, passing the time : ) When you can wash the gel out of your hair, just rub conditioner into them first, let it sit a few minutes and it washes out pretty easily. I think when you find out or think you have E you go through a series of emotions. Denial, depression, frustration. Then that settles in and you get a bit more pro active. You start really noticing things and I think, things start to get a bit better. I am sorry for this hardship you are going through. Its so unfair and a burden BUT it is doable : ) I am glad you have started with the Dr's and started to research. It will make you feel better and open your eyes to other options that may work for you. I wish you only well and if I can ever help? just ask*

joan*

http://health.groups.yahoo.com/group/JuvenileMyoclonicEpilepsy/

Courage, discipline, fortitude and integrity can do a great deal to make a woman beautiful.
 
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