Here goes...

[MomThreePointOh]

When I was younger, elementary school age, I began having seizures - grand mal, one after another. I had an EEG done as a child and they didn't find anything and told my mother I would out grow them. Well, I did. For several years. I can't remember if it was last January or the one before, but I ended up having another grand mal seizure in the "middle of the night" (I had pain in my neck, a lump from working out too much) and it put me out for about 3 days. I was exhausted and could hardly move. They've all ended in exhaustion.

Over the last year (so it must have been last January) I have been dealing with anxiety and panic attacks. A few weeks ago I had to bring myself to the floor in WalMart and get the heck out of there in fear of going into another hardcore seizure. They scare the hell out of me. I sat in my truck forever talking to my husband, trying to calm down - my heart was racing right out of my chest. That night I was exhausted, completely exhausted with another headache.

But now, I am terrified. I get headaches a lot and my body "twitches", my eyes.... I can't turn my head quickly or I feel faint/dizzy. I often shell myself (tense the upper part of my body so I'm like a turtle in a shell) to get to my "safe spot" which happens to be in my house, in my bedroom, as quickly as possible.

I am terrified because I have three small children. I fear the outside world because I don't want to have a seizure in public, alone with my kids. I don't want to fall and hit my head or something else happening, anything.

I am scared to death of what has really been going on because I had SO many grand mal's as a child... I am just terrified. I play the "talk yourself out of it" game and sing songs and pray a lot until the feeling goes away.

I want to "feel" normal. I am not on any medication, I can't even swallow pills to begin with. Sigh.

Any comfort, seriously... doctors scare me. Blood tests scare me. I know I need to do all of these things... how do you "deal"?

I know I haven't had a grand in over a year - but I am certain there are different kinds going on after finally forcing myself to sit down and look...

Ugh.

Hi, I'm Jessica and I am absolutely scared of the outside world.


:banana: <--- THAT is funny though.

 

[Chaz1]

Hi Jessica,

I am so sorry to hear the worry is overwhelming you, it’s not uncommon to feel this what I can only describe as terror...it’s not me has the seizures it’s my only child/Son and I too feel the inner terror of worry deep within at times….for the unknown…

But each day lived in fear and terror is a day not well lived, it can make you ill in many other ways.

I would shout from the rooftops how good ole talk therapy has helped him deal with accepting Epilepsy and learning not to fear it and simply let it rip to a 3rd party. He is also in Neurofeedback /Neurotherapy for braining training, his EEG shows area of his brain which keeps him in hyper alert statue and they training this down (relax) and in his weekly Neurofeedback /Neurotherapy session they can and do see if his brain is in stuck in hyper emotional arousal/status (by the computer feedback) and there on the spot they train this down (it’s amazing).
And we talk about it….and all express ourselves and our fears and if anything, the one least scared about E and all that comes with it is my Son, he has support and love coming from all angles and this helps and you deserve that to….try to educate those around you to about how this ALL makes you feel…

Come here and vent anytime and you will see you are not alone...a warm welcome to CWE...for sure you are not alone...

Do love the dancing banana....giggle...

 

[Starfish]

You have every right to be scared, everyone fears their next seizure, especially when very few people understand what to do when someone has a seizure. I get by by staying away from things that could cause seizures and people who don't understand. When I am scared that something might happen I be careful, then I calculate the odds of me having a seizurE that day. I normally have my seizures less than a month apart so once I start getting to 20 or 30 even 40days sometimes if I'm lucky I get EXTREMELY paranoid. What helps me is knowing that everytime I've been able to get throguh it. That I won't let seizures stop me. After I'm better I keep going with determination because when you let the FEAR of having a seizure 100% control you you loose. If you have another seizure we are always here to talk and help you through it. Insuggest you check out some of the thugs in the lemonade stand, they always help cheer me up from seizure stuff.

 

[Nakamova]

Hi MomThreePointOh, welcome to CWE!

Do you know if you are photosensitive? I ask because Walmart in particular seems to be a trouble spot for some folks with epilepsy, largely because of the fluorescent lighting. If you think this is a possibility, consider wearing sunglasses or polarized lenses to see if it helps.

I understand your fears and worries about having a seizure in public. I think it's possible that the headaches and anxiety and twitching and dizziness are seizure symptoms in and of themselves (called Simple Partial seizures). It's important to figure out ways to get them under control -- not just so that you can feel comfortable being out in public, but so the symptoms don't progress in terms of frequency or duration. One way is to look for triggers (like photosensitivity) by keeping a journal and writing down when you have symptoms. Also make a note of other factors (how much sleep you're getting, when and what you're eating and drinking, what your hormones are doing, etc.), that might be playing a role. Generally speaking, if you can be proactive about your overall health, it can help with seizure control. More info here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Despite your fears about medication, it might also be worth talking to a doctor about what the options are. Pills are a lot smaller than they used to be, and some of the meds come in liquid form. It might be worth it to just get a prescription for a short-term med like ativan that can help with anxiety and with seizure-related symptoms.

If pills are just completely out of the picture, there are options like what Chaz mentions above (therapy and neurofeedback). More info about neurofeedback here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Hang in there, things will get better.

Best,
Nakamova

Another approach is

 

[Starfish]

Sunglasses/polarized lenses don't really help with florescent lights because it's still flickering. Not to undermine Nakamova, I find that photosensitivity is cumulative, the more you are around things that cause you to have seizures, the more likely you are to have them and the worse they are. If any of your children play video games, or you yourself play video games, this could be making things much worse. I started having seizures when I was a child when the Game-cube came out becuase the graphics are just to much. There have like four pages dedicated to Photosensitive epilepsy in the safety packet instruction thingy that comes with it. Hope this helps, best of wishes.

 

[Nakamova]

It does depend a bit on the frequency of the light, and sunglasses might not do the trick for all lighting situations. But sunglasses can potentially help for some kinds of photosensitivity (such as from dappled sunlight or patterns), and there are different types of filtered lenses available that can help with fluorescent lighting: http://irlen.com/index.php?id=4

 

[MomThreePointOh]

Thank you all.

I have taken on the fear of stores - I've been in Wal*Mart once (with my husband) and had to leave because of the "feeling" and we usually don't go there anyways so I am pretty sure I'll never go back.

I find this everywhere I go. My body tenses and I get so stressed out. There are few times I can talk myself out of freaking out, I am terrified. I will see a doctor soon. I guess if I am going to seize I my as well be IN the doctor office, sigh.

I remember during my grand mal seizures... I don't ever remember having a warning that they would happen. I would drop, my body would stiffen and I would shake, sometimes I would be "talking" (if you want to call it that) and I think I dreamed. I've told people I've "dreamed" of the future and those things would happen within the next week. Happened the last time I had one of those too. And maybe I get them in my sleep? Sometimes I "dream" the bed is spinning and I move around a lot, according to my husband and wake up with a headache.

I have headaches a lot, since last January, in fact.

Hmm. I guess I do have "warnings" for whatever is going on right now. It's just exhausting. My poor husband doesn't understand why I need to "calm" myself down if we are out but he'll be there to help me. All of these things are really hard to explain that I am worried a doctor won't even get me. My last doctor (that I started seeing for panic attacks) was really not helpful. How do you search for the right now?

For the longest time I thought I was the only person in the world having problems, randomly I came across a blog about a girl that explained everything so perfectly and I googled epilepsy and came across this board. In a way, it's comforting. Because all I want to do is rock in a corner and cry. Literally.

 

[Bathtub]

Isn't it so wonderful when someone else gives you the words for what you've been going through but found impossible to explain, that blog was a real find.

I'm a bit puzzled about the description you can give of your grandmal though, I thought you were meant to be "out of it" to count as a generalised seizure? But I'm new here and still learning so I might be wrong.

Hope you can a get some victory on that paralysing fear. I do understand about the responsibility of having kids depend on you when you have a medical condition, but actually they are much more robust than many adults and they do see thing differently - can't remember the thread but someone posted up a very amusing account of her three year old's take on mummy lying on the floor in an unresponsive state and refusing to be teased into getting up - the child wasn't at all upset, just a bit peeved that mummy wouldn't play properly, and then got bored and wandered off and amused herself for a while! I think until they start school, they get most of their ideas of what's normal from you, so you can get away with some pretty unusual standards/behaviour - at home, at least!

 

[qtowngirl]

For the longest time I thought I was the only person in the world having problems, randomly I came across a blog about a girl that explained everything so perfectly and I googled epilepsy and came across this board. In a way, it's comforting. Because all I want to do is rock in a corner and cry. Literally.

:agree:

You are never the only person, you will never be alone. Seizures aren't that uncommon, and neither is epilepsy. It's just so unfortunate that it's not out in the public eye the way it should be. Won't take long and you'll know you came to the right place, here we all know how you feel from being scared to frustrated to only wanting to cry.
I myself didn't realize the human body could produce so many tears. Recently had my sixth grand mal, cry cry cry, and just found out today that I lost my license for six months. Cry cry cry... it's very normal and you go ahead and do it all you want. Necessary for relief actually.

Bathtub is right as well, doesn't sound like a grandmal to me either - not if you didn't lose complete consciousness. You won't know you're having one until you've woke up and had someone tell you, or if you're alone it takes a bit to come around and realize what has happened. There will likely be drool, bumps and bruises (though those may not settle in until the next day), and such confusion that it takes a few minutes to even walk and talk properly again. This last one I wasn't even able to call my boyfriend by the right name (called him by both of my best girlfriend's names ??). So, I would look more into simple or complex partials - from the very little I've read of your story it sounds like a bit of both. Best of luck and hope to see you around the forum...

 

[MomThreePointOh]

I'm a bit puzzled about the description you can give of your grandmal though, I thought you were meant to be "out of it" to count as a generalised seizure? But I'm new here and still learning so I might be wrong.

I was completely out of it during each one. But I remember "dreaming", not really sure! I've had several infront of doctors, when I was younger, once in the care of my OBGYN - nothing ever came from it. Years went by and suddenly everything started coming back again.

I have lots of waiting to do... and money to spend.

 

[MomThreePointOh]

Bathtub is right as well, doesn't sound like a grandmal to me either - not if you didn't lose complete consciousness. You won't know you're having one until you've woke up and had someone tell you, or if you're alone it takes a bit to come around and realize what has happened. There will likely be drool, bumps and bruises (though those may not settle in until the next day), and such confusion that it takes a few minutes to even walk and talk properly again.

Definitely grandmals, that is confirmed. I have never had any idea they were coming when I had them - when I've had those, it's taken up to 2-3 days to feel back to normal, usually the first day I can barely get out of bed. Those are very wide-spread though... my last one was over a year ago... It's been 10+ years, then suddenly I have another out of literally nowhere. And all this starts.

Right now I have, I have no idea what I have.... I'll be sitting and suddenly feel weak, my head with spin/switch, and my body will feel like a feather. I don't fall because I "feel" them coming so I quick sit or lay on the floor because I am afraid of falling and hitting my head again. It takes a long time to feel "normal" again, whatever that is and immediately my head hurts and I feel sick to my stomach. I am scared to do lots of things because I don't want to black out. Especially while I'm driving (I have 3 small children) - I don't know what to do. I don't want to have my license taken away but at the same time... I am so scared something will happen.

Baaaaah. What I really don't get... is ALL of them I had right infront of doctors, EMT's, etc and the tests I had where all normal? How? Is this normal?

 

[qtowngirl]

Unfortunately yes, one can have seizures/epilepsy with all test results (mri, eeg...) return as normal. Frustrating as hell.

 

[MomThreePointOh]

I am trying to get in ANYWHERE and I don't have insurance - what a nightmare.

 

[Silat]

No insurance is a nightmare...
I think the most important thing, in your case, is to find a medicine that works for you as soon as possible, and not worrying about test results.

 

[MomThreePointOh]

No insurance is a nightmare...
I think the most important thing, in your case, is to find a medicine that works for you as soon as possible, and not worrying about test results.

I finally got an appointment today with an old PCP ~ for Tuesday morning. I am ready. I haven't left my bedroom in two days because it won't stop! Hopefully she will supply me with some kind of med and get me a referral in for a neuro.

I love this forum though. I've cried some happy tears instead of "OH EM GEE my world is ending" tears. This is good.

 

[Silat]

I'm sure this has probably already been said, but have you been keeping a journal? It'll come in handy

 

[MomThreePointOh]

No... actually. I need to start writing everything down though.
I feel like I'm losing my mind.

HA! Not funny? Didn't think so...

 

[MaryK]

Hi Mom ThreePointOh..

I am so glad you were able to get an appt with your PCP. Maybe he will be able to get you in with a neurologist. You are not losing your mind, you are actually trying to get control.

I am not sure if you are photosensitive like some of us. If you are the lights in Walmart could really be bothering you.

Oh, along with the journal and questions for your PCP, try taking a friend or your husband to the appointment, to catch what you may miss. I always take someone with me

Take Care.

MaryK

 

[MomThreePointOh]

Thanks MaryK - definitely taking the husband along! I won't drive myself anymore. I think I have a lot of triggers but I am not 100% sure on what they are exactly. I think I may be photosensitive, because grocery stores are the same and I have given THAT job to my husband for the last several months.

Sigh. Can't wait to update about Tuesday. And maybe call for back-up for a neuro. I haven't seen my doctor in a long time for a reason but it was my last option. Besides E.R. but I'm kinda weak on the cash flow.