Coping With Epilepsy Matthew's Friends
Free Advertisement
 

Go Back   Epilepsy Forum > Our House > The Foyer



Reply
 
LinkBack Thread Tools
  #1  
Old 07-20-2009, 07:47 AM
Getting Comfortable
 
Join Date: Jul 2009
Posts: 11
Thanks: 0
Thanked 0 Times in 0 Posts

check this out. aura or anxiety?


I won't take up alot of time, but i have stumbled upon possible epilepsy
related to my cycle. Only because i have had the weird feelings or episodes since back as far as being about 12. but very few and far between. Only now as gotten older i'm doing it often enough i've pin pointed it seem around my cycle. I know your period doesn't "cause" epilepsy or is it a FORM of it
due to messed up hormes? I know in the last 7 mo or so like clockwork have these "feelings" i finally explained to someone once as deja vu, and of course epilepsy popped up. I have had maybe two seizures, I thought maybe were
or i just simply passed out. which i have if in pain. but i had an episode
in a library where i felt the feeling coming on, i squatted down to let it pass and went out. i couldn't have been there long cuz i woke right up and was not confused or anything, just got up and left. head ct, ekg all that work up in er, nothing shows. but still continue to do this Possible aura thing, and mostly while in between goin to and being asleep. it's a strange feeling hard to explain, doesn't in capacitate me at all. 30 seconds and gone. just strange. always wondered what it is/was.. best i can explain is it feels
familiar, same sensation each times, don't taste, see anything, hear anything weird. i feel like i'm a little startled, then i just experience the feeling i always get, then i get a really tiired feeling and come down and feel like i just gotta be quiet a few and then back to normal..
Reply With Quote
  #2  
Old 07-20-2009, 08:01 AM
Super Moderator / Thank You Queen
 
Join Date: Jun 2005
Location: Massachusetts
Posts: 16,380
Thanks: 938
Thanked 7,290 Times in 5,376 Posts
Welcome Shawnalb!

What you describe does sound like an aura associated with a kind of epilepsy. You should talk about this with your doctor, especially if the episodes seem to be increasing in frequency and in duration. There is a form of epilepsy that is triggered by one's period (it's called catamenial epilepsy). Hormones can play a major role in the brain (think of PMS for instance), and as their levels in the body change the brain chemistry changes as well.

Best,
Nakamova
Reply With Quote
  #3  
Old 07-20-2009, 08:13 AM
Getting Comfortable
 
Join Date: Jul 2009
Posts: 11
Thanks: 0
Thanked 0 Times in 0 Posts
i had read that yes. so ob doc? and if this is really not hindering anything
would i really need to do anything about it? just strange more then anything, i suppose i could or it could lead into a seizure. i think maybe it has one or two times and as gotten older and added stress issues on top maybe some months has just bled over into one. i read eating banannas is good for this and i didn't have them with last period before or during, and then usually if i do after it's with in a couple days. thought maybe potassium def, but then had a couple last few days while trying to sleep. so that's out! i'm scared to DEATH to see a neurologist. after reading all these posts, where they hardly ever seem to even get to the bottom and you are a guinea pig. meds make you worse in stead of better, some you get immune to. this stuff gets in your head and you don't know whether the meds aren't working or YOU are over analyzing things. for instance like someone giving you a placebo and you believe itll stop them, and it does. then you find out if had no meds in it at all. but yet you didn't have seizures. I take zoloft, that's it. but i have to have it. i think maybe since being on it, i might have started doing it more but not often really. i have remembered doing this while younger. Hard to have trust in things when you don't have confidence they even know what's wrong with you.
Reply With Quote
  #4  
Old 07-20-2009, 09:43 AM
Meetz1064's Avatar
Super Moderator / Fantastico
Recent Blog: Kindness is
 
Join Date: Oct 2007
Posts: 3,777
Thanks: 103
Thanked 302 Times in 251 Posts

Hi there.


Shawna, it DOES sound like it's catamenial E, from what you have to say. Try looking at this site for the types of seizures--and specifically look up Temporal Lobe Epilepsy to see if that fits. (It can be tied into DID--Disassociate Identity Disorder--at times).

Epilepsy.com

BUt there is also something to consider. Zoloft CAN have some SEVERE side effects. Look at the list:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); bizarre behavior; black or bloody stools; chest pain; decreased bladder control; exaggerated reflexes; fast or irregular heartbeat; fever; hallucinations; loss of coordination; new or worsening agitation, panic attacks, aggressiveness, impulsiveness, irritability, hostility, exaggerated feeling of well-being, restlessness, or inability to sit still; persistent or severe ringing in the ears; persistent, painful erection; red, swollen, blistered, or peeling skin; seizures; severe or persistent anxiety or trouble sleeping; stomach pain; suicidal thoughts or attempts; tremor; unusual bruising or bleeding; unusual or severe mental or mood changes; vision changes; worsening of depression.

The emphasis is mine. Check out the link below for more info:

Zoloft Side Effects

I would urge you to keep a journal. Specifically an E journal. Although it is detailed, it will help you and the doctors in the long run. Speaking of doctors, neurologists are NOT anything to be scared of. Sure, they're going to run some tests, but they do just the same at figuring out what type of medicine to give us as what other types of doctors give us for different things.

WHEN you go in to see a neurologist, he/she will want to run an EEG (and this REALLY needs to be for AT LEAST 24 to 48 hours NOT an hour or so) and an MRI. The EEG is a "picture" in time of what's going on in your head in regards to seizure activity. The MRI will look for physical abnormalities.

Oh, and before I put in the list of things for the journal, make sure you find RobinN's posts about bioidentical progesterone. Her daughter also has issues with having seizures around her TOM, and they use it to help. She hasn't had one in over 3 months now, and hers are the tonic clonic ones. (But, they also use neurofeedback, too, but Robin can explain that, too). Just PM (private message) her if you can't find them using the search function.

Here is the list of what should go into the E journal.

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

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.

NOTE: Some people do also find that tracking the movement of their bowels is also needed.

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


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

Now that I have TOTALLY overwhelmed you, I'm sure, I want to welcome you to CWE.

There are plenty of people to make friends with here, lots of information to find in the Library and Kitchen, and even a Padded Room to vent in when you need to.

Take care, and holler if you need anything.

Meetz

Last edited by Meetz1064; 07-20-2009 at 09:45 AM.
Reply With Quote
  #5  
Old 07-20-2009, 10:03 AM
Getting Comfortable
 
Join Date: Jul 2009
Posts: 11
Thanks: 0
Thanked 0 Times in 0 Posts
yep that's overwhelming.. but ty! i have been on zoloft for years. but
this has happened since younger, just more as gotten older. not sure it
is anything to do w zoloft. but w/o zoloft i'm a mess. journeling is good
idea. I tried to get in to neurologist, they are booked into august. but that's not but just a few weeks. I don't mind trying different thing to see if it's diet related. Just messing with my zoloft scares me. I seem to be ok on it and with the dose i take. Now maybe since i started taking it again after goin goff a year. (cost related) when i had a stressful even, they felt best to go
back on to help me over the hump. and i stayed on it, why take a chance, leave well enough alone. and it went to generic. thank god.

i just didn't know if this was even CE or just me diagnosing myself. which is easy to do reading crap on the net. BAD thing to do sometimes.... has you thinking you have everything. It's amazing with reading sympsoms how a person can start "looking" for them and if you want to find one you will. I don't wanna be a hypochondriac running to doc all the time. It's just more a strange sensation w/o anything else really bothering me. I did notice last
time i had a depressive episode 4 years ago, when i went back on zoloft i felt better when i walked. and didn't notice as many episodes when i excercised like that. i have gotten extremely sedentary last couple years....
so if your period doesn't cause epilepsy only contributes to it, then
what is the flippin cause??
Reply With Quote
  #6  
Old 07-20-2009, 10:06 AM
Meetz1064's Avatar
Super Moderator / Fantastico
Recent Blog: Kindness is
 
Join Date: Oct 2007
Posts: 3,777
Thanks: 103
Thanked 302 Times in 251 Posts

Hormones


Simply put hormones can lower your seizure threshold, specifically estrogen. But, thyroid can do it too, as well as some others....

Progesterone is a natural anticonvulsant.......

And some people just naturally have a lower seizure threshold.........be it because they had a head injury, they were born that way, there's a scar on their brain, or whatever.......that's just the way it is......
Reply With Quote
  #7  
Old 07-20-2009, 10:25 AM
Getting Comfortable
 
Join Date: Jul 2009
Posts: 11
Thanks: 0
Thanked 0 Times in 0 Posts
gotcha. well i'll talk to me ob about it at my next appt. meanwhile keep a journal on this so i can better tell when/severity etc. It honestly doesn't effect my "life" at all except it's just a weird feeling i get ever so often. then got myself worried after stumbling across things on the net, which is never good. diagnosing yourself. You can have 5 our ot 10 things on a check list if you read into them. It's hard to be honest with yourself to figure that out or if you are just over reacting... hell have the times i've read on these posts people have went to several doctors and still never figure out problems..that just amazes me. do they teach different at all these med schools? some take you more seriously then others, i don't know. almost a waste of money i'm sure some feel. then find out you had diabetes. I had a husband who's brother when to er for chest pain and was a strange grey color to his complexion and did a chest xray and sent him home. died 3 days later. aorta ruptered. they were looking for heart trouble but usually they do this from the top and his was from the bottom. didn't catch it.... i've had a hard time trusting docs i guess after that. I know i need to know. but when i go and they tell me i'm ok, i worry they missed it, and if they find something if they are just experimenting on me..
Reply With Quote
  #8  
Old 07-20-2009, 10:30 AM
Meetz1064's Avatar
Super Moderator / Fantastico
Recent Blog: Kindness is
 
Join Date: Oct 2007
Posts: 3,777
Thanks: 103
Thanked 302 Times in 251 Posts

Oh, I


don't blame you for mistrusting doctors.

Myself, I've only been to 2 neuros (first moved, LOVE the 2d); 2 ob/gyns (first killed, LOVE the 2d); 3 primary cares (first 2 retired then died, and in different states, LOVE the 3d)--and I'm, uh, 21, yeah, that's the ticket.....uh, yeah.....

But let's NOT discuss the dentists or the ER doctors.......
Reply With Quote
  #9  
Old 07-20-2009, 10:33 AM
Getting Comfortable
 
Join Date: Jul 2009
Posts: 11
Thanks: 0
Thanked 0 Times in 0 Posts
you are only 21!! wow i thought i was talking with someone my ager
or older. you sure seem to know alot about this stuff....
Reply With Quote
  #10  
Old 07-20-2009, 11:34 AM
Meetz1064's Avatar
Super Moderator / Fantastico
Recent Blog: Kindness is
 
Join Date: Oct 2007
Posts: 3,777
Thanks: 103
Thanked 302 Times in 251 Posts

Sarcasm


lots of sarcasm...........

I'm really 44.........

I substitute teach, and kids like to ask how old I am, so I simply tell them that as long as I'm legal that's all they really need to know...
Reply With Quote
  #11  
Old 07-20-2009, 11:41 AM
Getting Comfortable
 
Join Date: Jul 2009
Posts: 11
Thanks: 0
Thanked 0 Times in 0 Posts
ya got me... i couldn't have imagine someone at that age knowing
all that and talking adult like it sounded. you are just a tad bit older
then me... 40. where do you live? I am in indiana. thank you for the
advice. i really have always felt also it had something to do with hormones but alot of neuros at the hospital where i work, and reading and such i've noticed they don't like to recognize CE. heck i never knew there was such a thing until a year or so ago and didn't think much of it since most knock it out of being possible that hormones could play a part. i virtually do it no other time. i do know since i have had a once or twice thing that when i feel that way and usually nothing comes of it, and a few times it did, that i need to
definitely pull over which i've never done this driving. otherwise i just sit down and try not to talk to anyone. i've went 40 years with it and probably had this since age 11 or 12.... never took a pill yet for it...
Reply With Quote
  #12  
Old 07-20-2009, 11:43 AM
Getting Comfortable
 
Join Date: Jul 2009
Posts: 11
Thanks: 0
Thanked 0 Times in 0 Posts
afterthought, if progesterone is a natural anti convul then why
are seizures not null if they can just give that to someone and stop them
why don't they? or is it just for THIS kind... or do the meds have some of that in it...
Reply With Quote
  #13  
Old 07-20-2009, 11:46 AM
darcness's Avatar
Weaving the Community Fabric
 
Join Date: May 2009
Posts: 251
Thanks: 1
Thanked 3 Times in 3 Posts
I just wanted to say that my wife has E and also was taking Zoloft.

I don't like to jump to conclusions, and I'm by no means medically qualified in any way. However, when my wife was on Zoloft, she had 3 t-c's. Between the first and second tonic clonic, 1 year elapsed. Then, her Zoloft was increased to 100mg from 50mg (she also has anxiety/depression). After the increase she had another t-c only 3 months later.

After the 3rd t-c she was put on Depakote (anti-epileptic drug) and then her Zoloft was changed over to Lexapro. Since then she's been seizure free and doing very well both physically AND mentally over the past few weeks. It took her a while to adjust to the Dep. and the Lex. After she did though, she's like a whole new person.

Because she was put on Dep. right around the same time as the switch to Lex, I can't be sure what actually helped and what didn't. I really have a suspicion that the Zoloft had something to do with it though. For whatever reason it seemed to lower her threshold.
Reply With Quote
  #14  
Old 07-20-2009, 11:53 AM
Getting Comfortable
 
Join Date: Jul 2009
Posts: 11
Thanks: 0
Thanked 0 Times in 0 Posts
thank you. i do know as with TONS of other drugs seizures can be more
frequent upon starting a new drug, or ending one for that matter. However i have been on zoloft more on then off with only about one year lapsing before going back on and i had them (not often) but before zoloft, during
and after. now with my age and slowly going through menop probably that might be adding to it. i'm gonna make sure with my doc at my ob appt
soon that it's not related to thyroid or hormones... i have had that checked b4 and it's never been. almost worse to know it's not health related, cuz then it means its in ur head!
Reply With Quote
  #15  
Old 07-20-2009, 11:59 AM
Super Moderator / Thank You Queen
 
Join Date: Jun 2005
Location: Massachusetts
Posts: 16,380
Thanks: 938
Thanked 7,290 Times in 5,376 Posts
Hi Shawna --

Regarding the use of progesterone to treat eizures:

Progesterone was used fairly frequently in the 1940s to treat epilepsy. It works by stimulating GABA in the brain. (GABA is a neurotransmitter that inhibits seizures). It was phased out as a primary treatment because: 1. There wasn't a lot of it available back then, 2. You couldn't use the higher doses on men, and 3. Progesterone can't be patented, so there's no profit in it for the drug companies.

In recent years there has been renewed interest in using hormone-related treatments specifically for catamenial epilepsy. (There's some general info at epilepsy.com about this). Definitely ask your OB-GYN about this option. It's also possible that as you go through menopause the reduction in estrogen may also lead to a reduction in seizures.

Best,
Nakamova
Reply With Quote
  #16  
Old 07-20-2009, 12:00 PM
Meetz1064's Avatar
Super Moderator / Fantastico
Recent Blog: Kindness is
 
Join Date: Oct 2007
Posts: 3,777
Thanks: 103
Thanked 302 Times in 251 Posts

Lol


I live in West Lafayette, home of Purdue University, and the Boilermakers! Go Boilers!!

Progesterone IS a natural anti-convulsant, and the bio-identical progesterone is a great thing to use. HOWEVER, it WILL NOT always prevent a seizure from happening. Once your brain has learned how to kindle (seize) it has to be stopped (via anti-convulsants like the AE drugs, diets and/or neurofeedback) so that it won't kindle any more, or rather, as much as before.

Once this occurs, your seizure threshold is raised, and you suffer from seizures less. Your E is not necessarily gone, though.

Something else to think about....Birth control will mess with seizures, too and lower the seizure threshold....because of the estrogen in it.
Reply With Quote
  #17  
Old 07-20-2009, 12:09 PM
Getting Comfortable
 
Join Date: Jul 2009
Posts: 11
Thanks: 0
Thanked 0 Times in 0 Posts
just got two posts from two diff moderators and one says estrogen COULD lower my seizure threshold as i go thru menop, and then the next one says loss of estrogen can cause them?
Reply With Quote
  #18  
Old 07-20-2009, 12:16 PM
darcness's Avatar
Weaving the Community Fabric
 
Join Date: May 2009
Posts: 251
Thanks: 1
Thanked 3 Times in 3 Posts
Trust me, I know how it is to have anxiety as well. I'm actually on Zoloft myself. Funny thing is, my wife having a seizure in front of me is what caused my mental breakdown. So now I'm on the med that likely lowered her threshold in the first place. How ironic is that?

I know how you feel with the anxiety. It can be crippling and change your life forever. It certainly has changed mine over the past 4 months. And yes, the Zoloft is working well for me. However, there are a TON of different AD meds you can try. I was just sharing my story because I think it needs to be considered. Nothing less, nothing more.

Hang in there and keep posting and educating yourself. When it comes to E, the best thing you can do is learn as much as you can about it and about your body. Those things lead to you knowing what you need for control and what you're comfortable with doing.
Reply With Quote
  #19  
Old 07-20-2009, 12:24 PM
Getting Comfortable
 
Join Date: Jul 2009
Posts: 11
Thanks: 0
Thanked 0 Times in 0 Posts
so to anyone who is reading my posts or has been responding, am i understanding correctly that whether i have this or not, i have not been told, but lets say i do. i've already been checked out for underlying cause
with ct and nothing shows. soooo, i let it go. didn't do it for a while but then started to more often but seemed pretty much same feelin each time that really doesn't change. my question is about the brain, once it has seized, it has to be told how to stop? i read that in one of these posts. that it kindles? what is that.. i suppose then we all have a seizure threshhold and some are just lower, so i might be particularly sensitive to being low on estrogen sometimes, companied with whatever else might be goin on. stress..
and therefore i have them, sometimes not.... i just need to get my threshold higher with diet? excercise.. or at least try these things see if i notice it helps.
Reply With Quote
  #20  
Old 07-20-2009, 02:02 PM
Meetz1064's Avatar
Super Moderator / Fantastico
Recent Blog: Kindness is
 
Join Date: Oct 2007
Posts: 3,777
Thanks: 103
Thanked 302 Times in 251 Posts

I am sure


you're confused by now, and I would be too.

Ask for the EEG to be done around you TOM, which will be the most likely time to catch any activity, and make it a longer EEG, at least 24 to 48 hours. If you can doing it during the time of your TOM of month that you think the "events" occur, then that would be best. And, if you can get the EEG to be longer than 48 hours because it's your TOM, that would be even better.

And yes, both statements that Nakamova and I made about estrogen are right--because once the hormonal imbalance occurs, it can alter the brain's chemistry enough that it will "kindle" or seize.

Kindle simply means that the brain has learned over the years how to seize, so it knows how to do it in your body--and now your body, or rather I should say brain, has to be trained (or medicated) in order to stop it.

Something else to consider about the hormone imbalance is that sometimes the E will become MORE active or MORE pronounced as menopause approaches or even happens. If you are in that state already that may be why it is becoming more active now than it has been in the past. Menopause would account for a major imbalance in your estrogen/progesterone hormones......but it would not explain why it happened all your life. You may just have a lower seizure threshold, period.

CTs and MRIs usually are run to find any physical abnormalities that would be the underlying cause of the E. If there was nothing on it, then there was no scar/lesion on your brain (at that time at least) that was causing the seizures.

Finally, yes. Diet, exercise and removal of stress would be big steps in the right direction to helping yourself with the problem, and I can guarantee that ANY neurologist would tell you the same. I know they're not easy by any means, trust me, but you can do it.

And, we'll be here for ya, no matter what, if ya need us!
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
Epilepsy and Anxiety allisoncliff The Kitchen 11 07-20-2009 10:52 PM
Hey! Check this out! Leanne The Kitchen 11 04-06-2009 06:59 PM
New Here with a ? about sleep anxiety. ev-4u The Foyer 3 08-19-2008 10:21 AM


All times are GMT -5. The time now is 03:32 AM.


Powered by vBulletin® - Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 Measuring Up. ALL rights reserved.