[HappaGuy]

Betcha didn't think it could be done, but I'm having an epileptic seizure, while I write!

Isn't that a neat trick. Isn't that a great way to spend a Friday night!

I could see this coming since about six, when I discovered I'd missed my morning anti-seizure meds again. I might as well have tied myself to the railroad tracks. I can hear that train a comin' down the tracks, I can feel the wheels a'poundin' in my bones.

Perhaps the worst of this is having failed myself so.

I had an aura a little while ago -I briefly hallucinated an unpleasant smell - then had left head pain, and now my left hand kind of wants to wander off and paw the air while my thinking gets foggier and foggier until I can't think how to move anymore and soon this head pain will make it too nauseating to move...

Most people expect I'd be flopping around on the floor distressing everybody who sees, but this is what they call a complex partial seizure. It doesn't involve the motor center of the brain like a grand mal seizure does, so I can sit here and type even while this electrical storm is going off in my brain.

Oddly enough, this is the easy part. I can't feel much of what is happening now. I won't notice how thoroughly what's happening now is deranging my brain functions until tomorrow, when post-ictal zombification sets in. Then it's headaches and confusion and fatigue for twelve to thirty six hours.

If I can sleep tonight that is. The meds are good for preventing fires in the brain, but not so good for putting them out. These damned seizures generally won't let me sleep. Over a decade of insomnia before I got the meds right!

Well, I've gone to Grassroots and gotten a pair of their best baked goods into my belly, -- props for the quality, service, and compassion -- and I've got my Brainwave Generator running an audio headache treatment at top volume. Maybe this time it won't be so bad, I think...maybe this time will be different. Just like I always do...



I don't know why I post this melodramatic real-life vignette.

Maybe it's because I think a lot of people have this disease who don't know it any better than I did for thirty five years. Maybe it will help them make the decision to ask their doctor for an EEG.

Maybe it's the same impulse that leads men to place notes in bottles and throw them into the sea. Maybe it's just to draw attention, or because this is just such a lonely fix I'm in.

John Steinbeck observed that we humans are lonely creatures, and that we share stories because they make us feel less alone; they make us feel 'yes, it's that way with me too'.

America has a culture of fear that makes it necessary to avoid showing any weakness, and that just makes the ills to which all flesh is heir harder to bear for Americans. (Nor will Americans say I'm sorry which makes of it a nation of lonely people.)

So maybe I share this because sometimes showing a little bit of vulnerability helps those worse off, and better off, to know YOU are not really so alone, as we make our way past the seeming impossibilities of our solitary nows, into our somehow tomorrows.

:slaugh:

Bless you all.

Please, contrive to thrive.

And please, "dammit, be kind."
-Kurt Vonnegut

[Bemysnugglemate]

So sorry your having to go through this....I will pray for you so hopefully it won't be as bad as it has been in the past.....

[Organo]

sorry to hear your in this kind of condition right now. it sounds pretty rough and i appreciate you posting about it. it certainly taught me a lot about seizures.
i get migraines and cluster headaches (commonly called "suicide headaches" because most people who get them, regurlarly, end up committing suicide) that also trigger seizures with the kind of head pain and unability to think properly like how you described. i cant even pronounce simple words or construct short sentences while im in this state.
i hope you feel better very soon and if you need anything, just ask!

[HappaGuy]

Originally Posted by Organo

sorry to hear your in this kind of condition right now. it sounds pretty rough and i appreciate you posting about it. it certainly taught me a lot about seizures.
i get migraines and cluster headaches (commonly called "suicide headaches" because most people who get them, regurlarly, end up committing suicide) that also trigger seizures with the kind of head pain and unability to think properly like how you described. i cant even pronounce simple words or construct short sentences while im in this state.
i hope you feel better very soon and if you need anything, just ask!

Organo, have you had an EEG and/or tried anti-seizure meds and/or talked to your doctor about the possibility that your "cluster headaches" (=migraine) may be symptomatic of temporal lobe epilepsy (=complex partial seizures)??

BTW folks, with the help of those intense baked goods I actually slept last night, and I'm only moderately f***ed up today.

YAY CANNABIS!!

Thank you for your notes of concern and support.

[shecky7]

Maaan , that must be frustrating to deal with when 'IT' wants to. Much love and well respec' to you Happaguy!

[Organo]

Originally Posted by HappaGuy

Organo, have you had an EEG and/or tried anti-seizure meds and/or talked to your doctor about the possibility that your "cluster headaches" (=migraine) may be symptomatic of temporal lobe epilepsy (=complex partial seizures)??

i had talked to my old doctor about an EEG, but one was never done. i have since switched dr.s. the last one i talked to about my symptoms simply wrote me a script for an excessive amount of norco and phenobarbital. i guess they felt anti seizure meds werent necessary.

[HappaGuy]

Originally Posted by Organo

i had talked to my old doctor about an EEG, but one was never done. i have since switched dr.s. the last one i talked to about my symptoms simply wrote me a script for an excessive amount of norco and phenobarbital. i guess they felt anti seizure meds werent necessary.

In short, I urge you to pursue the epilepsy line of inquiry. An EEG can positively establish and probably falsify the hypothesis. - You can know, in short, if whether these are symptoms of epilepsy, and you want to, because there are treatments that work straight off for ninety percent of patients. A lot of doctors will simply give you anti-seizure meds and diagnose you based on whether they work or not. I like actual EEGs. (Note please: I was not diagnosed until my second EEG.)

Those cluster-f**k migraines sound like something to avoid.

With mine, I feel pain, and it is nauseating, but I have this sensation that there is a world of pain beyond that that I'm not feeling. Sounds like you keep a cottage there.

Organo, I wish you well...clear of those migraines, and soon.

------------
PS:

It is essential to take charge of your own diagnosis and treatment, in my humble but experienced opinion. Don't be passive with your doctors.

My resume of experience informing this opinion follows:

In 1993 when insomniac desperation secretly symptomatic of epilepsy drove me to consult the Japanese company doctors at my Japanese corporation, they told me I had a cold, go back to work. (One guy died at his desk while I worked there. Karoshi, they call it. Death by overwork.)

In 1998 when again I consulted a doctor - in America now - she told me I had depression (actually I told her), and gave me antidepressants. I ate them and they helped me not to be so depressed about not being able to sleep at night or function during the day.

In 2002 I talked to another doctor who sent me to a psychiatrist who told me I wasn't depressed, I was bipolar. So I ate the pills he gave me for a couple years, but they didn't help.

In 2004, the Social Security psychiatrist pronounced me to be merely malingering.

In 2005(?), my first EEG - during a sleep study - agreed that I must be merely malingering. (I ate a sleeping pill before the study - so they could have some sleep to study, y'know? I told the technician...Yeah OK, these things I do. Oy.)

In April 2006 another EEG unexpectedly turned up "epileptiform tracings", and the anti-seizure meds definitely helped!

The battle with insomnia continued though, until -- I hope -- last January...

--

The point of all this is that doctors don't know but they are willing to guess and they'll get paid even for merely jumping to the most convenient conclusion and diagnosing you therewith. By and large they do just that.

If you get a good one, as I did, hang on my friend. Such are treasure.

You can't solve the problem without correctly diagnosing it first - or getting dumbly lucky.

You want to solve the problem ASAP, because these days of our lives spent coping with illness are days we are not free to live well. We have a limited number of days counted out to us in life, and no power on earth can replace a single one of them.

Good luck, Organo, and all of you, my friends.

[OakSmokeMJA]

Happaguy, I hope you feel better soon my friend.

America has a culture of fear that makes it necessary to avoid showing any weakness, and that just makes the ills to which all flesh is heir harder to bear for Americans. (Nor will Americans say I'm sorry which makes of it a nation of lonely people.)

You speak the truth. Your vulnerability is as human as there is. In my eyes, you are one of the strongest persons on this site. I've learned how to be more subtle just by watching you in this forum.

Please don't forget your epilepsy meds Happaguy, we care about you man.

[Eazy]

Man, that sucks. I couldn't imagine.

I hope you are feeling better now.

[HappaGuy]

Originally Posted by OakSmokeMJA

Happaguy, I hope you feel better soon my friend.



You speak the truth. Your vulnerability is as human as there is. In my eyes, you are one of the strongest persons on this site. I've learned how to be more subtle just by watching you in this forum.

Please don't forget your epilepsy meds Happaguy, we care about you man.

Originally Posted by Eazy

Man, that sucks. I couldn't imagine.

I hope you are feeling better now.

Thanks y'all. I'm fine now. Those timely and high-quality baked goods really helped keep the ictal fires to a low roar.

Oaksmoke, really I'll be grateful if my friends keep reminding me to take my meds. That part of my brain seems to have been fried long ago, and for some reason I haven't mastered my new alarm clocks yet.

[OakSmokeMJA]

Originally Posted by HappaGuy

Thanks y'all. I'm fine now. Those timely and high-quality baked goods really helped keep the ictal fires to a low roar.

Oaksmoke, really I'll be grateful if my friends keep reminding me to take my meds. That part of my brain seems to have been fried long ago, and for some reason I haven't mastered my new alarm clocks yet.

happaguy, maybe you could give me your phone # via PM and I can give you a one ringer every morning to rimind you about your meds.

I will happily do this as I am up by 6 am every morning. I can just make it part of my morning coffee ritual.

[Eazy]

Originally Posted by OakSmokeMJA

happaguy, maybe you could give me your phone # via PM and I can give you a one ringer every morning to rimind you about your meds.

I will happily do this as I am up by 6 am every morning. I can just make it part of my morning coffee ritual.

That is so cool. luv you!

[oRANGEgumby]

Being an epileptic myself you've left me wondering what kind of pharmacueticals you take to control your seizures. If you do not mind me asking, which do you take? It seems as though every epileptic I talk to, medicinal regimines and medicines vary widely.

[HappaGuy]

Originally Posted by oRANGEgumby

Being an epileptic myself you've left me wondering what kind of pharmacueticals you take to control your seizures. If you do not mind me asking, which do you take? It seems as though every epileptic I talk to, medicinal regimines and medicines vary widely.

For epilepsy I take Trileptal, for epilepsy and sleep I take Klonapin, for sleep I take Benadryl.

BTW I'm very interested in EEG Biofeedback. They say it not only treats but cures epilepsy.

[Absynthe]

Oh my gosh, you've been through the ringer again, Happa!

I'm supposed to take Topamax, to prevent my Migraine seizures, and Auras. I've been told, "You're one of those poor buggers who get the exact same auras, that Lewis Carrol wrote 'Through the Looking Glass' over. And that seems to be pretty dead on!

Until I get my new meds from Canada (90% less than in America), I'm dependent on Imitrex, and when that fails I go straight to the hospital, for some 'happy' juice, which stops the Migraines cold! Two times over the past month for that...and I like to avoid things that upset me, so I don't get a Migraine again.

They call Migraines, Epilepsy's little sister, and many of the same drugs do prevent them from forming!

All I can tell you, is that I get strong visual hallucinations, 10 - 15 minutes before they hit; warning to get off the road, and to a safe place, because the train is derailed!

For Migraines, the website is: www.magnum.org - because trust me - sometimes THAT sounds like the only thing that will help us - when we need to just control it.

Just urge those of us who suffer both Epilepsy and Migraines, to take care of ourselves, and each other. Because, who else can, unless they comprehend the nightmare it is?

I sleep in a "Migraine" habitat, with blackout drapes, and an airconditioner blowing right on me, even in the winter time (S. Cali, I can get away with that).

Yesterday, my neck started the Puff Adder routine, which is my OTHER sign, the train is off track, and if I can get cold pack on it (and a heatpack on my shoulder at the same time), it can be stopped.

We need to stick together, Epileptics, Migraineurs - after all, we are brothers & sisters in the Neurological rollercoaster.

[sugarfoot]

WOW, how could you keep your thoughts, are your seizures on one side or the whole brain? I know this happened awhile ago, do they happen alot?
The reason the 20 questions.....my son suffered seizures, he had a bad one in 2005. a grand -mal...his body was tight for 4 hours and seized in his brain 2 days...on life support for 3 1/2 weeks. Thank-God he is ok today...very short term memory loss. UCSF did surgery, took out the rest of the Left Temporal lobe. All they expected to do was stop seizures, he would be ike a bump on a log

but..he is good....very glad we got together!!!

sugarfoot