New to Epilepsy....help!

RE: RE: RE: RE: New to Epilepsy....help!

Submitted by Gretchen on Sun, 2005-01-16 - 16:39

The other poster(s) is (are?) SO on the money in all said. All I can do is add to and reiterate. Triggers? I worked nights for eons as a nurse so I naturally want to be up all night, asleep all day still, now 6 years after my diagnosis. That however means the phone rings, people at the door = loss of sleep = increased sz. Trigger then = not enough sleep. For me though THE trigger is stress and too much stimulation, which can be one of the same too. The question would therefore be - what stresses you? Only you can figure that out. Know what stresses me? NOT working. I sz too much to work and no one will give me a chance anyway and I figured out going to work, being busy, the sozialization I got at work, feeling of accomplishment was a major coping mechanism for me. Not something I enjoyed, it is part of my fabric and I imagine always will be something I'll grieve. NOT working even 6 years later is still something I wrangle with so I've found other things in my life I can do. A lot of extra things in my life have been added, not subtracted. Still I NEED to work. I'm stressed by loss of income, benefits, socialization - all those things. I'm also wildly photoconvulsive. I honestly think if I could get a handle on my photoconvulsiveness I'd knock out 90% of my sz's. To accomplish that I would be in a position to never ever leave my home and I'm not willing to do that. For me it's near emotional death.Did you notice in the paragraph above I mentioned grieving? You've had a major loss. Getting diagnosed with epilepsy does create grieving, a loss of many aspects of your life, who you perceived you were/are, and grieving goes through levels to acceptance. It does not happen all at once. You are posting, asking for help. That is a very positive sign to me always someone is seeking help. understanding, and seeking is how you "get there". I know we all hear these things and it sounds so easy to say, a lot harder to do, and it is, but there are some excellent stress buster things you can do. I personally have taken 2 long biofeedback courses. Not the once a week, 6 weekers often advertised but intensive long one on one biofeedback training. I took both of these prior to being diagnosed, years ago, so my biofeedback skills now automaticlaly tend to kick in, not always tho. But I have that skill and can get all by myself, apply those skills and lower my emotional and physical responses to stress remarkably. There are other kinds of stress reduction techniques too. Sometimes, often, plain avoidance of people or situations is the only answer too. Pul-lease don't take this as a lecture for I am the last person who earns the right to lecture, but in general alcohol isn't so hot on an already altered brain. Some people can drink a little, many not at all. Alcohol intake can be, is for me, a trigger. BUT you have just now entered a whole new world for you and epilepsy is a world unto itself. I like to call epilepsy "Ambush" because often that's how I feel - ambushed. It's changed so many things in my life. Too many. My entire life I swear changed and not to the positive. I don't candy coat epilepsy. This isn't fun and it's too life changing for me. But I wasn't given the choice either. I get a little irritated when people say - I am a much better person because I got epilepsy. That may be but I can think of a lot of things that could have made me a better person besides having THIS! I have had anger, frustration, depression, anxiety, acceptance which comes and goes. On the other hand while I don't know if I'm a better person, I'm not even sure what being a "better person" in me is any longer, it's taken on a new meaning. I do know I have become a whole lot more of a tougher person. In fact I think a hallmark of those of us who do have epilepsy is that we are darn tough people. We've had to be. We are. Give yourself a break and realize you are not going to figure this all out at once. Don't make big decisions when you're feeling real emotional. Instead of throwing in the towel, try adaptation, accommodations. Don't make more than one big decision at a time. I was a person who handled it all in an incredibly busy world before, owned my own very going business, also worked some shifts in a hospital, had 11 children, VERY busy - and loved it and that all came to a slamming halt. I was SO overwhelmed it took me 2 years to just get over the grieving of getting this but get over it I did. It took TIME. Being kind to myself. Stop expecting things from myself I simply could not do. Yes I've had to give things up - a lot. I personally had to find that out by self sabotaging myself by trying things out - some of which I look back on now and think - it's incredible I did those things! I harmed myself but these activities also helped me define my limitations, also my abilities.For me at least epilepsy is not just sz's. My epileptologist explains that epilepsy is a complex of symptoms called epilepsy. How true for me. Oftten I have plans and find that day I'm so slugged out and tired I have to cancel. At first that was beyond frustrating, I'd push myself way too far over what I could do, or dissolve into depression because I had to give up things that before I was diagnosed it was so easy to do. Fatigue is experienced by many of us. Epilepsy itself, sz's, AEDs cause fatigue and I think many if not all of us experience this and it's different person to person. I have days of bursting energy almost always followed by days of numbing inertia. It I sz'd a lot during the night? I'm almost unable to do more than read a book the next day. Now I've accepted that and it doesn't frustrate me (as much). It took me awhile to get to that point tho. Some days I'm not having a lot of sz activity but I'm plagued by uncomfortable auras, all day, and never knowing if that is an aura signaling a sz or going to stay an annoying aura. Some days my memory is fairly sharp. Today is not one of them and it's frustrating still to me as heck. Post it notes became something always in my pocket to write things down I will undboutedly forget then I forget to read the post it or become so used to reading it I start ignoring it. That's irritating.HOWEVER on the good news scene as I've traveled this road I have found ways to chip away at these problems with methods I've devised and learned from others. I'm much more tuned into myself now, know immediately if I'm in a situation that is setting me up to sz, learned to listen to that inner voice and I have NO problem in straight out leaving a place, telling people to back off, whatever it takes to protect my health. For instance I'm used to being alone while my husband works, comes home and goes to sleep about 3 hours later. It's lonely I admit but I'm also used to being a free agent, also used to not being stimulated by a lot of people around me and recently have found out I can't handle the chronic stimulation of the demands of people around me. Awhile back we moved in with some nice people, they had an apartment we rented temporarily when we relocated, they had other tenants and we all knew each other. Suddenly someone always was in our apartment during that month, so much conversation, so much stimulation was making me sz an alarming rate. So I announced a moratorium on ANY visitors or phone calls for 2 days. I hope I didn't insult people but I've had to become some what selfish too to protect my health/sanity. If I'm sz'ing a lot? What kind of companion am I? Getting used to this does not come in a day. It took me 2 years to grasp all the the ramifications fully but we had an unusual situation too where my husband had open heart surgery, identification of some other serious health problems a few weeks before I exploded into full blown epilepsy. We had just moved to a new community, thus no support people around. No income, no support, no known well to us health resources was very stressful. I hibernated which wasn't a good way to adjust either. Still acclimating to this doesn't happen in a day, a month or even a year. I think it's an ongoing process.The last thought I have is that I have never been able to handle alcohol well. I'm a real cheap date, always have been. I have never liked how I felt when I did drink either tho. But of course feeling a tremendous amount of rebellion when I was diagnosed, I started craving a very cold icey beer or wine cooler. I have found out the hard way, and tested the theory several times, if I drink even 3.2? I'm going to sz and the post ictal is intensified, miserable. That beer or wine cooler I HAD to drink, wasn't worth it. Another realization, adaptation. After awhile adapting to this or to that became what my life is and it isn't all bad. Reaching acceptance of this, reducing the fear, finding out what your triggers are, what helps, what hurts, is a process of trial and error. You'll figure it out. Take it slow, be kind to yourself. You're worth it and no one will do this for you. Asyou do this you will be again taking control of our life. It's up to you and sometimes you will have to be insistent as I described above in telling people - no, I can not do that safely, and feel okay about it.Personally I wouldn't want to go through those beginning months after my diagnosis for any amount of money. It's frightening, confusing, angering but you'll get used to the new you and your new life. Some things will remain aggravating. If you can find a support group, do. If you can't? You sound dynamic to me, start one. I have twice and at times these supportive people with problems like mine have kept my head above water. Find a physical facility, put up signs in doctor's offices, and I found twice people are as anxious to mingle with people like you, like me, who share the same problem. It made me feel more "normalized" and taught me too there is life with epilepsy, taught me too how others handle things that to me were overwhelming.Good luck. This IS hard. Be kind to yourself. Realize you still have a life. But it's going be different now, and more challenging. I have a feeling you're up to it and will figure it out. Give yourself some time. It doesn't come in a day.Gretchen