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Living Alone With Epilepsy

Hi everyone,

I live a busy professional life as a consultant and live alone. I've been having grand-mal seizures for 2 years now (about 5-6 episodes). Living alone introduces some complications which I would like to bring up.

1. Sometimes it is extremely difficult for me to figure out whether or not I've had a seizure. This especially happens if I have been unwell, if I had more than 4 beers the night before, or if I am very tired with work. Often, some scattered stuff and a pounding headache is the only sign. At other times, some weird bruises are the only clues.

2. I also find it difficult to judge whether or not I suffer from absence seizures (staring episodes). If there was someone to see me, I could find out. Any alternative suggestions to investigate?

3. I have come to recognize the aura I tend to have. It starts with a feeling that "everything i've done is useless... pointless...". I usually lie down in bed, but have learnt the hard way that too much sleep is a sure trigger for a seizure in my case. Does it work for other like this? What do you all find useful in preventing a seizure if an aura is experienced?

4. Does anyone experience an increase in fidgety behavior for a few days following a serizure? I find myself shaking my legs, jerking my arms.... or a flickering feeling in eyelashes. I am keen to corroborate my theory that this is linked to a seizure because if so, I can use it as a sign to take it easy till these symptoms reduce (implying return to normal state of affairs in my head)

Whew! thats a lots of questions. Please feel free to contact me for more information. I like to lve life to the fullest and am not going to let a disease like this stop me. Others interested in the same goal should connect!

G

Comments

Hey there! Hope you don't

Hey there! Hope you don't mind me answering some of this, despite this being in the 'men with epilepsy' section - I'm not sure of the protocol on this. That being said, your desire to live a full life despite this is inspiring - you should be proud of yourself.

1)This has happened to me before, and the bruises as well as a sore tongue are usual signs for me after a tonic-clonic. The main other noteable is the feeling of 'being born anew' if this makes any sense to you. It's almost as if something has been reset in my head and I'm calm again. Have you spoken to your doctor about any of this?

2) The only thing I can think of is maybe a webcam or some other sort of video equipment, and film yourself for a period of time. I'm not sure if you would want that though - I imagine it could be strange watching yourself seize.

3)In regards to trying to prevent further seizures (auras are usually defined as Simple Partial Seizures) I find that if I try really hard to take care of my basic needs, sometimes it keeps them away. It's not foolproof, but it helps. For me, my triggers are things like stress, lack of sleep, bad eating habits, amongst other things. If a few happen at once then I start having more auras/SPS. So I will then take extra care, get the proper amount of rest I need, exercise well, eat properly, and do things like meditate to reduce stress. Make sure you take time out for you!

4) Absolutely! My eyes flicker, my limbs feel rather weak. I liken it to a baby animal trying to find its feet again. Strange perhaps, but it does seem like my body is trying to find things out again.

Basically, listen to your body. You can't prevent all seizures, but I really do believe that you can keep them to a minimum by trying to look out for yourself the best way you can. This includes making time for yourself, doing the things you like to do, and having the ability to say no to certain demands that infringe upon your time.

Take care, and hope this has helped!

Rachael

Re: Living Alone With Epilepsy

That is good you notice the signs. Auras are just simple partials.
Your bruising could be from your falls or just low on vit c at least that is what mine were from.
I do breathing techniques when an aura occurs and that has stopped my seizures.
Having the fidgeting and things like that you should get plenty of sleep and on a good diet for a seizure may be coming.

Also I thought a good thing would be to have a camera in the room that you are mostly in and set it up all the time. Possible maybe you will catch a seizure.

WHat meds are you on?

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Re: Living Alone With Epilepsy

thanks for the comments people.

i take Sodium Divalproex (1000mg once daily)... its apparently quite a strong dosage... and i want to get it reduced as soon as pessible! the scariest ting is if i have to take this medication for ever... ouch. very ouch.

thats for the tip on breathing/taking care when an aura is felt. i'll try some soothing music next time.

one more question: is conciousness lost in a staring episode/partial seizure? i suspect i'm having partials, but usually i remember what i was thinking immediately afterwards...

g

Re: Re: Re: Living Alone With Epilepsy

No you dont loose conciousness for a complex partial seizures.
Well I hope the breathing works for you. For it works for my complex partial seizures.

It is called the diaphragmatic breathing.

Breathing Technique to help Seizures
http://www.epilepsyhealth.com/deep-breathing.html

Diaphragmatic Breathing
http://www.swamij.com/diaphragmatic-breathing.htm

I have also stopped some of the seizures from trying to pretend it is not happening. Or just keeping my mind occupied with something else can stop some.

Once I was going to have a grand mal seizure. My hand began to shake badly. (actually later I found out I was low on my sodium)Then I know I am going to have it. I had my laptop on my lap and sitting in a chair with my feet up. I was so worried that my laptop would drop during the seizure, that I was trying to get the computer next to me on my table without getting up. I did place the computer there and the seizure stopped.

So you see controlling is a big issue. Not many people believe it it. Look into neurofeedback I have done that too. Very interesting. I will be going back to it in the future.

What is Neurofeedback
http://www.whatiseeg.com/

Neurofeedback Info and Physicians
http://www.eeginfo.com

Take care
Lisa
Http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Re: Re: Re: Living Alone With Epilepsy

these are excellent suggestions. i'll have a closer look at these web links.

a month ago (my last full-seizure), i got an aura while showering. i slept off immediately and continued sleeping for 5-6 hours. on waking up, i could literally 'feel' that my seizure threshold was terribly low. pretty soon, bingo!

i will focus much more on controlling myself after petit-mal episodes in future.

Re: Living Alone With Epilepsy

George - NYC
55-Million Have It!
That's right. Studies show that over 55-million people 'round this globe of ours have epilepsy. 2.7 million in the USA alone. And there's a myriad of reactions, warnings, after-effects that we can experience. What can be most frustrating is what you pointed out--best put in your "fidgety behavior." This can occur as something of Mama Nature's warning that a seizure is on its way. As can an ongoing flickering of the area directly below the eye. Then there are the "electric" sensations we can get in the most unexpected parts of our body. For me, that area is often in the toes of my left foot. Or in one of my knees. But don't forget, our neurological system doesn't just occupy area in our brain. Our nervous system has "wires" running throughout our entire body. And while these little flickers and "should I scratch?" sensations are frustrating, they're part and parcel of the body's electrical system.

Your auras are much like my own. They occur usually one to two days before a seizure takes over, and are kind of a warning to me. Years ago, I let them frighten me into doing absolutely nothing. I'd tend to stay home. Call in sick. Cancel plans to go to the theater. Not now, however. I've come to see that our very moments on earth are invaluable. And with this in mind, even after a seizure I do not give myself unnecessary time behind a locked door. Sure, I'll let my system, and maybe my way of looking at myself, have a while. But nowhere like years ago.

No, your remarks are right on target. They spell out quite specifically what the majority of us go through. Only difference is a positive one. A feather in your cap. And that is that you recognize the changes in your behavior and manner in which you see yourself. Better that than running home (or staying at home) and, if you will, letting life's phone go on ringing!

--George

Re: Re: Living Alone With Epilepsy

Thanks George for your encouraging comments.

To take the discussion further, what is the recommended rest time after a full-seizure (tonic-clonic)? And what is the best way to spend this time, assuming you're not in hospital but recovering alone at home?

Re: Re: Re: Living Alone With Epilepsy

I know that some of this sounds incredibly reckless but assuming that I hadn't taken a header and hit anything hard I would sometimes sit down until my head cleared and then get on with life I have even had seizures at work, had a bit of a rest and carried on working, even when I was taken to hospital I would sometimes be literally fighting my way out of the ambulance or trying to sneak out of hospital, crazy I know but I was much younger and stupider then and we all like to think sometimes that no matter what this ******** condition isn't going to beat us. In case anyone thinks otherwise these were tonic-clonic seizures and yes I do realise how stupid I was. Another thing that drove me to these extremes was that I couldn't stand the thought that I might be perceived being less than capable at work. I know there are laws against discrimination but you try telling a lot of employers that, but that's opening up a whole new can of worms. I would often set off to work knowing that I would have a seizure that day but couldn't face the prospect of ringing work and telling them I would be spending the day at home because I knew something was going to happen later that day. You just get a mental picture of the reaction at the other end of the phone!! Sorry for going a bit off the beaten track but I thought I'd tell you not what to do after a seizure.

Re: Re: Re: Re: Living Alone With Epilepsy

Your approach is slightly similar to mine Andy. I dont have the strength to get back to work immediately, 24 hours seems a minimum i need to recover. But the thought of being considered less able or 'disabled' is not one I intend to entertain. Will just have to build some control mechanisms and carry on with life. Everyone has something or the other wrong with them, even if it isnt something as visibly disturbing as a seizure.

Regarding sleep, i find it increases my chances of having a seizure (too much of it). To illustrate, assuming I have a late night out with heavy drinking. On waking up, my seizure threshold is LOW. I can feel it. To avoid a seizure, I find it better to take it easy, watch TV... listen to music, talk to someone. Anything but excessive sleeping.

I think Lisa's approach makes sense... being personally determined.

So the question that emerges is-

Will such behavior (getting back to work immediately after seizures) go on to reduce my seizure threshold even more as time passes? What was your experience Andy?

Re: Re: Re: Living Alone With Epilepsy

It really depends on the person, the length of time of the seizure, and some are more tired than others. Like for myself, I dont have them much, but I dont sleep afterwards I just lay down and rest for a while. But I am still pretty beat for the rest of the day. Even the next day, I feel that my body is still drained.
Resting or sleeping is the best thing for you not walking around and doing work.

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Re: Re: Living Alone With Epilepsy

George - NYC
DEPENDS ON THE PERSON.
We all have different levels of strength, epilepsy or not. And how much time we take after a seizure depends upon several factors, including (1) the length and intensity of the seizure, (2) what shape we were in when the seizure struck us, (3) if we injured ourselves during that seizure, and (4) our basic belief in ourself. The last I have found is quite important, and corny as it may sound, after I've given myself a few moments' rest after a seizure, I'll count to myself silently from 1-to-10. And by "10" I've got to have those feet of mine on the floor. Something along the lines of "The show must go on!" And that it must. Try it.

Re: Re: Re: Re: Living Alone With Epilepsy

It's great to see how other people deal with E. I decided a long time ago that it wasn't going to stop me from doing things that are important to me and living a full life. I've been a cyclist all my life. My szs probably come from the bike accident I had (and the basal skull fracture). The szs started in 1993. I've ridden at least 5,000 miles each year since then. Swimming's been interesting of course. I wanted to add that body twitches (fingers, legs) are my warning that my bod's gearing up for a gm soon (like when I go to sleep). When this starts, I relax and do some yoga. Hot tub's also been helpful. We all learn how to deal with E. Hope everyone else is doing well.
Jim

Re: Re: Re: Re: Re: Living Alone With Epilepsy

Great to hear that Jim!! I love cycling too and find it a very liberating thing, I can get out on the roads, dirt tracks and beautiful countryside surrounding me and get away from everything. The city I live in is very cycle friendly, there are miles of specially designated cycle paths and tracks and you can criss-cross the city without touching traffic, I have always cycled even when my seizures were at there worst. This was partly to get to work but partly because I wasn't going to lose one of the things that brought me a lot of happiness. The most ironic thing of all is that now a few years down the line from those dark days I have been seizure-free for over 3 years and I have been told good news you can get behind the wheel of a car I don't want to and have no intention of doing so. Plus after all these years of seeing how bad people drive and having been knocked off my bike a couple of times in broad daylight by people who simply say ' oh sorry I didn't see you there' as they reverse into traffic I get the feeling I'm safer on two wheels.