How do you all handle the fear of having a seizure? The day before yesterday I had two grand mal seizures. I live alone and the fear of either being alone or being with people and having a seizure is getting the best of me at the moment.
Thank you for your input. I apologize for being negative, and I am not trying to suggest that one should be afraid. I just don't know how to get out of this fetal position I retreat to.
c&c
Mandi, thank you so much for answering my post. I really appreciate it. I especially want to thank you for your honesty. It is so nice to be able to "talk" to people, who are in a similar situation. They are unlikely to sugarcoat or dismiss it. God bless this forum!
Your suggestions are good ones. It might be wise for me to seek meds. I am in pretty bad shape psychologically. And alone.
I used to have a seizure cat. He died several years ago from heart disease. He hadn't received any training, but he was a seizure cat. He was a stray, who came into the basement via the crawlspace. Whenever I was going to have a seizure, he would come and tell me. And stay with me until I woke up afterwards. Now I am greeted by a wet dog's tongue, when I wake up, but Howard (dog) gives me no warning beforehand.
I hope you are doing well, Mandi. I often read your (and others') posts and wish you well.
Take care and thanks again,
c&c
Again, thanks, Mandi.
I am not on any meds. I don't even have a doctor. I've probably been on at least a dozen different meds over the years. None prevented or even decreased the frequency of the seizures. Most increased both their frequency and their severity. In addition, I've had side effects of psychosis, hallucinations (both visual and auditory), brain swelling, ataxia (loss of use of legs), and terrible rashes. My hair and my fingernails fell out, and I almost lost my sight. I've been in status too many times. Several years ago, when I had to be taken off Lamictal, I said, "That's it. No more. I am done with the meds."
I do have some benedryl in the house. On June 12th I lost my other dog (Denis) to pancreatic cancer. Denis was a stray, who had been terribly abused and, as a result, could not bear to be left alone. I would sometimes give him benedryl (vet recommendation), when I left the house, to keep him from chewing through the door.
Twice in the past I have been put on Prozac for depression. It really helped me. The only side effect I had was that it made me tired.
Thank you so much for your time, Mandi. I really appreciate it. I wish you the best.
c&c
Thanks again, Mandi. I read the piece you wrote on the thread "I am NOT epilepsy!". That is really good. I plan to reread it often. You have a gift. And a heart.
One thing I have noticed about not being on any meds is that it is easier for me to recognize an aura, when it comes. The meds were so overwhelming for me that they usually masked any warning that a seizure was coming.
I think the two seizures I had the other day were a result of the heat. Over half a million people in my city lost their electricity during an excessive heat alert due to winds of over 90 mph. There were trees and down power lines everywhere. I had no a/c for six days and had a terrible time with that. I didn't go to a shelter, because I didn't want to leave my dog. The day after I got my electricity back was the day I had the two grand mals. I have had seizures in the past, when there has been a sudden change in temperature.
c&c
Recognising an aura's a pretty important thing. I sometimes think the aura's the one compensation we get for having this darn condition. I live alone like you, coffee 'n' cigs, and can usually tell when I'm about to have a serious attack. There's a little ritual I force myself through when I'm having the aura and my body's still more or less operating - check the gas cooker's off, stagger upstairs and curl up on the bed. Sensible precautions but it also helps psychologically - it's a way of reassuring myself that nothing serious will happen during the attack. I find I mostly worry about having an attack in public. These should be less serious as there might be people around to help you. But I also worry they won't be able to handle it and freak out. I suppose, as Mandi says of people like this, 'screw them.'
Intrigued that you once had a seizure cat as opposed to a seizure dog. I once thought about this, dogs not being my favourite creatures, but was told to stop being so silly. The idea of a seizure hamster was also mooted but I think that was going a little too far.
Incidentally, does your nickname indicate a lifestyle choice? Coffee probably does no good for your nerves, it must be said. Cigs work wonders, however. I'm told they in turn have certain side effects but I choose to ignore this.
Take care,
Andrew
Intrigued that you once had a seizure cat as opposed to a seizure dog. I once thought about this, dogs not being my favourite creatures, but was told to stop being so silly. The idea of a seizure hamster was also mooted but I think that was going a little too far.
Incidentally, does your nickname indicate a lifestyle choice? Coffee probably does no good for your nerves, it must be said. Cigs work wonders, however. I'm told they in turn have certain side effects but I choose to ignore this.
Take care,
Andrew
Hi Andrew! Yes, VERY grateful for the aura! It took me a long time to learn to recognize it.
I promise you I did have a seizure cat. lol. The really impressive part is that sometimes I would have what seemed to me to be an aura, but Sasha (cat) would pay no attention. And, sure enough, I didn't have a seizure. Other times, the exact same feeling would end with a seizure. And Sasha was there. I couldn't tell the difference. He could. Amazing.
Re my nickname: I chose that last January when I was at a particularly low point and coffee and cigarettes were all that was holding me together. I was really banged up from a seizure I had had in my kitchen. And very depressed. I know coffee is wrong. I have been told by the neurologist not to drink more than two cups a day. (I do make great coffee in a french press, btw.) Cigarettes are stupid. We all know that. (I have set the bed on fire twice during a seizure.) But, we, also, know that they are wonderful. It is a real dilemma. 
c&c
I had a seizure cat, too: Emmie. She wasn't trained either, but could easily tell when I was going to have a problem. She'd sit at my feet and meow, as opposed to jumping up with me. It's like she knew I was going to start twitching and didn't want to get to close. I usually live alone, although there have been a few times I couldn't do that. Usually I prefer to be left alone, but after a few pretty good concussions, I had to learn when to call for help and stop being so stubborn. The most embarrassing one was at an airport in D.C., and then, of course, they wouldn't let me get on the plane. Argh!
MandiAnn said...
C&C - Checkin in with ya hun.... How's your day? Doing any better?
C&C - Checkin in with ya hun.... How's your day? Doing any better?
I am doing better, Mandi. Thanks. I am trying to force myself to live in the present moment. I have had bad injuries and humiliating experiences in the past and I tend to relive them constantly and add fears for the future until I am so overwhelmed I can't even move. And the pain is excruciating. Bottom line is it doesn't work. The present is all that is available. Why worry about the rest?
Thank you so much for your help. I hope you are doing well.
c&c
jwj said...
Did you have side effects with Lamictal? I take lamictal and dilantin and still have right side seizures.
Did you have side effects with Lamictal? I take lamictal and dilantin and still have right side seizures.
I was on Lamictal only. It did not help my seizures (generalized tonic/clonic), though it did not make them worse or more frequent. I developed a horrific rash not too long after I started the med. Although I had promised to come to the ER immediately, if this happened, I did not out of a desperate hope that my seizures might eventually be controlled. Finally (a year later, the whole time with a rash and seizures), I gave up and called my doctor and I was weaned off of it.
Best wishes to you, jwj. I hope you find something.
HIYA!
i'm wandering in well into the convo! sorry! i'll just reply to the original Q i suppose..perhaps ramble a bit from there! i'm so amused by the fact that i'm not alone or completely mental, as id have myself believe!
for me- the anxiety, it's bizzare! i want the same things- people to go away- but i don't want to be alone! the weird thing for me, is when i started having seizures 12 years ago, they were strictly nocturnal, and i was a stubborn 15 year old who could care less during the day. i was not affected per se. but then about 5 years ago, everything turned on it's head...i suppose pun intended!
i wound up having random grand mals (my tonic episodes were...as i'd said, previously sleep only), went status afew times, had to quit my job- extended homebound-ness...more so due to side effects from the coctail they had me poppin' i believe. but anyhoo- anxiety popped up. very odd feeling for me. i'm not one to be held back- i was fearless! and all of a sudden i'm afraid to walk a click to the store alone? wtf?!! anyhoo- still being the stubborn git i am, i refused to allow that to dictate my life. i've been through it all before, and if i let it rule me, than what's the point? if i die...i die. if i seize, well it'll be something to laugh about in afew months....'did i tell ya bout the time i woke up in the store surrounded by people freaking out thinking i was possesed?....' lol s*it happens is my theory and how i manage to push through.
i'm currently between doctors, unmedicated, and uncontrolled. i've lost everything and got it all (almost) back in the span of 5 years. still can't drive n whatnot, you know the deal. but having gone from relative normalcy to paralising fear over nothing, to physically not being able to just "get over it"....well i'd had enough. i'm not my problem. i'm a bigger person than that and if i don't live my own life, no ones going to do it for me. i've never been handed anything, and i had to work for this too....and darn did i ever!i'm still a bit of a spazz when it comes to having to take long trips, public transport alone, doing this that or the other.....but there's life out there, and i intend to participate. if it happens...it happens.
though i fully admit to having myself a personal breakdown alone at times. so frustrating having one diagnosis (you have seizures...you're epileptic.....we think) and a whole bunch of confused looks from every doctor. i'm normal on paper....i'm seizing otherwise!
as far as the being alone...partials are horrid for me...knowing it's coming, i'd rather be hit out of the blue to be honest. but i put the same frame of mind into play when i'm alone....i'll mamange...this is gonna suck....but remember...endophnes kick in before you get knocked out! i'll wake up confused and in pain.....but i'll manage....again!
ahhh and lamictal....horrid stuff! lol not as bad as tegretol...but def nasty stuff. good for nothing.
Jaimes,
I just made the comment about prefering it to hit out of the blue, instead of knowing it's coming and dreading it. he pointed out that if it just hit, I'd get hurt a lot more, and end up in even more embarrassing situations than I already do. Which is true, I know, but I still hate knowing one's coming, and having to deal with it when I really just wish it would go away.
~Heidi Hope~
I just made the comment about prefering it to hit out of the blue, instead of knowing it's coming and dreading it. he pointed out that if it just hit, I'd get hurt a lot more, and end up in even more embarrassing situations than I already do. Which is true, I know, but I still hate knowing one's coming, and having to deal with it when I really just wish it would go away.
~Heidi Hope~
"For I know the plans I have for you", says the Lord. "Plans to prosper you and not to harm you. Plans to give you Hope & a Future."
Jeremiah 29:11
Great post, Jaimes. Thanks.
Oh, Tegretol. The morning after I was put on Tegretol, I woke up with a fever and the feeling that my legs were broken. I called my neurologist. He would not come to the phone. He told his secretary to tell me that it was all in my head. That, because I didn't want to take the med, I was imagining a reaction. The next day I was worse. Neuro still won't come to phone. Next day worse yet again but now with stunning rash. Beginning to get angry response from neuro secretary now when call. By end of week, holding head from pain. Covered with very dramatic rash. Temp of 104. Neuro unavailable. Won't take my calls. I called the doctor, who had recommended the neuro and said, "I can't stand the pain any longer. The weekend is coming. I won't get a doctor on the weekend. I need to go off this med." Doctor said, "Meet me at ER of hospital." I did. ER doctors said that I would have been dead before Monday. The blood vessels in my brain were swollen almost to the point of exploding. My system had already begun to shut down. I was hospitalized in intensive care. The neurologist (whose attention I finally had) switched me to Depakene. After several days I was recovered to the point that I was asked to try to get out of bed. I couldn't walk. Ataxic. Depakene reaction. Neuro says, "You may or may not ever walk again. We don't know with ataxia. However, we need to take you off the depakene now. I am afraid that you may react to another med and go into anaphalaxis. Your alternative is to go into status from the withdrawal. The choice is yours. You may die with either decision. If you choose status, I will leave orders that no one but me is allowed to give you the valium iv to bring you out of it, because one out of five people die during this procedure." I chose the withdrawal and status. I go into status during an MRI. I was in status for 8 1/2 hours. How is this possible, when I am in a hospital? Because the neuro had left orders that no one but him was allowed to bring me out of it, and he is UNAVAILABLE. Finally, I regain consciousness and confront the neuro. He tells me that he was at another hospital sewing back together the brain of an epileptic he had begged not to drive. He points his finger and me and says angrily, "And let that be a lesson to you." I know at this point that I am in the Twilight Zone. He tells me that my reaction to the Tegretol was atypical. It did not appear to be a Tegretol reaction. When he leaves the room, the nurse whispers to me that there was a boy two rooms down with the exact same reaction to Tegretol the previous week. The other nurse in the room nods in agreement.
It was years before I got up the nerve to try another med.
Ye gods, C&C, that sounds a horrendous experience. Nice to know your doctors failed you on every possible level - from initial diagnosis through quality of emergency care right through to the lack of basic humanity in their treatment. Not surprised you were left wary of meds and eventually decided to reject them completely. Though in defence of Tegretol, just in case everyone starts thinking it's the Devil's Pill - it's the only med that's done me any good whatsoever. It's meant that when I have a bad attack, I almost lose consciousness instead of completely losing consciousness. As I can think of no feeling worst than waking up after a grande mal, I consider this progress.
Totally agree with you, Jaimes, about refusing to let epilepsy rule our lives. It's a hard trick but, unless you're condition's really serious, it's possible. Did onlookers really think you were possessed once? The worst I've had is people walking past me warily in the street, thinking I was the Town Drunk off my head on cheap vodka.
Take care all,
Andrew
Totally agree with you, Jaimes, about refusing to let epilepsy rule our lives. It's a hard trick but, unless you're condition's really serious, it's possible. Did onlookers really think you were possessed once? The worst I've had is people walking past me warily in the street, thinking I was the Town Drunk off my head on cheap vodka.
Take care all,
Andrew
Rogue said...
Jaimes,
I just made the comment about prefering it to hit out of the blue, instead of knowing it's coming and dreading it. he pointed out that if it just hit, I'd get hurt a lot more, and end up in even more embarrassing situations than I already do. Which is true, I know, but I still hate knowing one's coming, and having to deal with it when I really just wish it would go away.
Jaimes,
I just made the comment about prefering it to hit out of the blue, instead of knowing it's coming and dreading it. he pointed out that if it just hit, I'd get hurt a lot more, and end up in even more embarrassing situations than I already do. Which is true, I know, but I still hate knowing one's coming, and having to deal with it when I really just wish it would go away.
and yeah- i've had ppl think i'm being possesed, trying to stick their hands in my mouth...the whole nine! lol
andrew50 said...
Though in defence of Tegretol, just in case everyone starts thinking it's the Devil's Pill - it's the only med that's done me any good whatsoever. It's meant that when I have a bad attack, I almost lose consciousness instead of completely losing consciousness. As I can think of no feeling worst than waking up after a grande mal, I consider this progress.
Take care all,
Andrew
Though in defence of Tegretol, just in case everyone starts thinking it's the Devil's Pill - it's the only med that's done me any good whatsoever. It's meant that when I have a bad attack, I almost lose consciousness instead of completely losing consciousness. As I can think of no feeling worst than waking up after a grande mal, I consider this progress.
Take care all,
Andrew
Each of us is different, Andrew. I am truly happy for you that you have been helped by Tegretol.
Take care,
c&c
During my hospitalization for the Tegretol reaction, once I was out of Intensive Care and on a regular floor, there was another patient, who was convinced that I was possessed by the devil (seizures) and would come into my room several times a day and read the Bible over me. Too weak to fight back, I feigned sleep during the readings. 
^ oh no!!!! 
lmao!!! that would have enduced many more seizure for me!!! lol ooorrr i'd have started speaking in tongues for my own amusement...see what the bible guy would do then! lolol
Isn't it people filled with the Holy Spirit, rather than demons, who speak in tongues? I seem to remember a religious gathering once where they all started doing it. Maybe the Bible guy would have decided C&C was a saint and able to perform miracles. Which of course you may be, C&C - I can't make any assumptions without having met you.
Oh, and Mandi: "HA HA HA" in the most sarcastic tone possible.
Andrew
Oh, and Mandi: "HA HA HA" in the most sarcastic tone possible.
Andrew
jaimes said...
^ oh no!!!!
^ oh no!!!!
lmao!!! that would have enduced many more seizure for me!!! lol ooorrr i'd have started speaking in tongues for my own amusement...see what the bible guy would do then! lolol
andrew50 said...
Isn't it people filled with the Holy Spirit, rather than demons, who speak in tongues? I seem to remember a religious gathering once where they all started doing it. Maybe the Bible guy would have decided C&C was a saint and able to perform miracles. Which of course you may be, C&C - I can't make any assumptions without having met you.
Oh, and Mandi: "HA HA HA" in the most sarcastic tone possible.
Andrew
Isn't it people filled with the Holy Spirit, rather than demons, who speak in tongues? I seem to remember a religious gathering once where they all started doing it. Maybe the Bible guy would have decided C&C was a saint and able to perform miracles. Which of course you may be, C&C - I can't make any assumptions without having met you.
Oh, and Mandi: "HA HA HA" in the most sarcastic tone possible.
Andrew
Years ago, some Russians involved with the theatre (a superstitious lot to begin with) would ask me questions concerning their careers. What did I see, what decision was best, etc. It was impossible to convince them that I did not have special connections and that my seizures were not trances during which I was receiving information. I promise this is true. lolol