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How Do You Cope?

I was diagnosed 5 months ago and I'm not coping well. My family insults me and refuses to educate themselves on my condition (they assume it's "common sense" and they already know). So, I've found that it helps to cope with pills and alcohol, cutting, journaling, etc... What are some ways you cope when you have no one in person to talk to and are constantly insulted and let down by people who claim to care about you?

Comments

Re: How Do You Cope?

since you are still very new with seizures and just trying to learn about it I'' say something very important, you should really give up your alcohol sorry to say but if you ask anyone with seizures, booze just doesn't work well with epilepsy. a few years ago I drank everyday and found out that I had to choose what I wanted, drinking or seizures,I had to give up everything cold turkey. I will hope you can trust me but alcohol just doesnt go well with us and can have alot to do with it, please ask anyone, I really would hate for you to have to learn on your own and go through many a seizures more. Try to make the best of it with your freinds and family, let them know that you can still have fun and that its not getting the best of you.

Re: How Do You Cope?

Thank you. And, you're completely right. I know it and often just don't care. My family is a big part of my feeling this way since they insult me, act like they don't care, or talk to me like i'm 5, especially my mother. Something has to give. I'm trying....

Re: How Do You Cope?

Hi there,

Sorry you are experiencing lack of family support. I would try local epilepsy group (I have been to 2 - so if the first one does not work out try the next - just having someone to chat to is good - I go once a month if I can)

I would try online chats - that will always educate yourself or maybe a nurse educator from epielspy society can help you find other suggestions to - I have found them supportive and caring. I would also try maybe a friend you can trust or therapist who specialises in medical conditions.

At first it was really difficult to be going to hosptials and tests and such and feeling really bad. Can you discuss this with your family perhaps or try other family members ie cousins - grandparents etc.

Re: How Do You Cope?

I've tried to attend that meeting a few times. I can't drive and Claudia (the host) hasn't answered my emails or calls. I really want to go, but have no one to take me.

Re: How Do You Cope?

Thank you all for your care and support. That is always needed. Unfortunately, about 9 months before my first seizure, I broke my foot. They didn't discover what was causing such pain until 6 weeks later, So, now, it has somehow affected the nerves. I have bad foot pain, and am being tested for peripheral neuropathy. I also hear and see things that aren't there- flashes of light.

From being assaulted and abused throughout  my life, I also have severe PTSD and social anxiety. I stay at home. The side effects that make me jerk and talk funny, fall, etc... would be embarassing in public. I have tonic clonic and complex partial seizures. One day, I kept having the complex partial ones for a couple hours in my bed. It wouldn't stop so I called an ambulance. They told me they aren't trained to deal with seizures, and the doctor said I was psychotic and even ordered a psych exam. She told me she never heard of that and I was just dilusional. I almost got sent to the psych ward. Thankfully, she was able to call my neurologist and he confirmed everything I told her. sigh. I love to travel when I can. That helps me get my mind off things. But, now I carry a letter from my neurologist in my purse in case that happens again. :(

How Do You Cope?

Hi you gave really good advice about not drinking that nobody wants to hear most time or nearly all times to " give up the drink" its hard yes everyone seems to drink around you when you go out but it can really have a great affect on life itself as you know.
And with seizures and alcohol both together the best of minds can hardly keep up with the damage, but there is some hope!!!
Peoples minds can recover from the damage done, but no doctor can just give you a certain date of when you will be well you just have to be convicted and stay strong.
Eat good healthy food exercise your body and also your mind and become a stronger person inside first!

Re: How Do You Cope?

Listen, you can either become a victim and let epilepsy rule your life, or you can take your fate into your own hands.

When I was first diagnosed as a teen, no one knew what to do with me.

My parents refused to use the “E” word. People treated me like I was some kind of pariah (which didn’t make me feel warm and fuzzy either.)They wouldn't even pay for college because, after all, I'd never amount to anything. Yet, I've been a successful copywriter for 30+ years!)

I think a support group would help. Try looking up Adult Epilepsy Support Groups at http://epilepsytalk.com/2011/05/20/adult-epilepsy-support-groups/

Phylis Feiner Johnson
www.epilepsytalk.com

Re: How Do You Cope?

I'm sorry to beat the old drum, but you can't imagine how helpful a support group can be. Some people even bring their parents.

I started one here and people just seemed to blossom. Caregivers, people who live with epilepsy and those that lived with them.

It's more than knowledge, it's comradship. You're not in this alone. 

Phylis Feiner Johnson
www.epilepsytalk.com

Re: How Do You Cope?

I believe that. Please find me one in Georgia (Atlanta area). Thank you. :)

Re: How Do You Cope?

Patients, Family Members & Friends are invited to participate in EFGA Support Groups that are located in the Atlanta Metropolitan area.

Atlanta Metro South / Fayette County

Meeting site: Fayetteville First United Methdist Church, Room C- 270
175 East Lanier Avenue 
Fayettevillle Ga 30214

When 3rd Thursday, 7- 9pm

Contact: Claudia Woodruff, (404) 527-7155

 

Phylis Feiner Johnson
www.epilepsytalk.com

Re: How Do You Cope?

The 3rd Thursday is coming up this week. I will call that number tomorrow. Thank you!!

Re: How Do You Cope?

Hi,

Do you know of any meetings like this in the southern ca. area? I attend United Methodist church in La Mirada.

Lynda

Re: How Do You Cope?

Well joining this forum is a great first step to getting a great support system :)
Finding ways to manage the symptoms of epilepsy is a logical first step. Also finding a support system that you can interact with fairly often will help you out. Don't dispair tho, there are plenty of us out here :)

I would venture to say the destructive habits that are helping you cope could trigger more seizures (increased physical stress) and are actually worse for the condition. Healthier habits would help physical stress relief, help you meet new types of people, and make you feel better all at the same time!

good luck

Re: How Do You Cope?

Well joining this forum is a great first step to getting a great support system :)
Finding ways to manage the symptoms of epilepsy is a logical first step. Also finding a support system that you can interact with fairly often will help you out. Don't dispair tho, there are plenty of us out here :)

I would venture to say the destructive habits that are helping you cope could trigger more seizures (increased physical stress) and are actually worse for the condition. Healthier habits would help physical stress relief, help you meet new types of people, and make you feel better all at the same time!

good luck

Re: How Do You Cope?

I'm sorry to hear that your family doesn't seem to care about your condition. My family doesn't insult me, but I feel that they don't completely understand my condition and can't really relate to me. So, I looked up some online forums things and happened to encounter this one. It's a good idea to go to a support group, and it is nice to be able to relate to people that can relate to you. Writing is a good way to cope, but the pills, alcohol (well excessive), and cutting aren't good ways to cope. Last year, I started running/walking and that seemed to help a lot too! Well, I see this is from a few months ago, but I hope things are going better for you! :)

Re: How Do You Cope?

I listen to a lot of metal...Ronnie James Dio, Black Sabbath, Volbeat, Lamb of God, Rammstein, My Darkest Days,etc. I have my family,my puppy, and my kitties. I also have my cross stitch. I had my work, and my coworkers, but recently moved.

The most important thing is to give back to others, roseanne. I have a sense of purpose and therefore don't harm myself. I've been busy buying presents for my former coworkers' children. :)

Re: How Do You Cope?

I am sorry to hear that you suffer from this from your family.  I suffer from this as well, my dad considers me as being a slight bit retarded, even though I do extensive amount of research on epilepsy and the only time they take me anywhere, as I don't drive is when they want to boost their ego.  As, they will not help me for any significant amount of time.  They insult me, slap me and tell my siblings that I just don't understand.   Some ways that I have learned to cope is to separate myself from them.  I have finally found my own apartment and I take the bus transporation so I no longer need their help to get anywhere, and they no longer use that to bribe me into obediance and shame.  I typically use music therapy and writing and reading.  I love to play my guitar and sing and this has been a tremendous help as it has helped me to distract the pain and the memories that I still have from the physical and emotional abuse from family.

Re: How Do You Cope?

Hi,

I've had some issues with my family. To me, I know I won't change these people. Not worth the time to think about their thoughtlessness. 

I now teach guitar to the little girl next door. She's in second grade and is doing well. 

Staying busy is important.  It keeps me sane probably.

I'm also writing a manuscript of my life's journals.  Who knows what this can become. I feel if someone asks me what I do I tell them I'm writing an manuscript and his sounds impressive.  It's good for my self-esteem.

 

Re: How Do You Cope?

Just so you know, I care.  I am not your family, but we who do care, are here on this forum. 

Pills, alcohol and cutting, are harmful to you.  Please don't hurt yourself.  Turn you attention toward having the best health you can have. 

I actually became vegan and started training for a marathon.  I have never felt better, and I sleep better at night.  I look forward to the next day, to improve myself.  I have developed better self-esteem.  I control my destiny in as much as possible.  I take care of myself first, then other things. I don't want to be a hater.

I want the same for you.  I am not saying you have to be vegan and jog.....I am saying do something for yourself, treat yourself well, and stop worrying about what other people think.  Go for it! Make a plan, stick with it for 30 days!

I care very much.  Take care of you, and other good things will fall into place.

Re: How Do You Cope?

I know can be frustrating when people do not understand. I was diagnosed about 10 months ago, but I have been having seizures for close to four years. My epilepsy resulted from head trauma, I ended up having to go to two neurologist and a neropsychologist before I was diagnosed as a result of an EEG test my second neurologist ordered. My first neurologist said I would be fine in 6 weeks to six months and basically dismissed me, that was over 3 years ago. My seizures are not usually overtly visible to other people, and they do not look like the seizures that you see on TV shows so it is hard for people to understand why I drop things or stop talking in the middle of a sentence or why things like playing an electric guitar near me makes me feel like my brain is being electrocuted (NOT fun).
I have learned that while my brain may not handle situations normally or sometime act normally, but that does not mean that I can no longer do the things I love. It just means that I have had to adapt to what my brain can handle. While going to an electric guitar concert with strobe lights with friends is now out for me, I can still go see a movie with them (just not in 3D and I usually bring bright colored (all the ones I have found are bright pink, orange, green, or purple) ear plugs to help dampen the noise from the movie). Knowing what your brain can handle and when not to push it are important.
I also now know that I am more susceptible to having a seizure if I do not get enough sleep, am stressed, or do not allow my brain enough time to recover after I have had a seizure. The brain uses sleep to help repair itself and the rest of your body. Sleeping at least 8 to 10 hours a day and eating properly are important for your brain. Feeling tiered is usually a side effect of a seizure, but taking things to make you brain wake up is not healthy for it. Also watching what you eat and drink is important. (For example I have stopped drinking and eating things with large amounts of sugar in them and I have stopped drinking anything with any amount of caffeine in it because sugar and caffeine are stimulants and I have found for me that my brain does not do well with them).
Talking to someone who knows what it is like to deal with epilepsy helps. Whether it is a neurologist who specializes in your type of epilepsy or someone who is also going through the same thing.
Do not be afraid to seek out more then one neurologist sometime a second voice is a good thing. A neurologist who specializes in your type of epilepsy can help you to better understand and deal with symptoms you have and how to help others in your life to understand the type of epilepsy you have, they may also know about a support group or someone who you can talk to in person.
Having epilepsy is not the end of you life, but IT IS frustrating, annoying, can potentially be embarrassing, and may force you to change or modify parts of your day to day habits. It also can be infuriating especially when you want to do something you use to do before the seizures, but you know that it is no longer a good idea or no longer possible. For me knowing what my brain can handle and when not to push it was an important factors in coping for me. Understanding your brain and listing to it will help you to figure out how to adapt. One of my physical therapist after the accident had me use a number chart 1-5, where 0 is how I felt before the accident and 5 is I am going to pass out now. She told me not to push my self if I was at a 3 or 4 because I could be doing more harm then good. I have since started to apply it to how my head feels each day, to determine if it will allow me to do things like listen to music or watch TV or go online. I know to stop when my head reaches 2 or 3. If I have a seizure or more then one my head tends to start out the next day at 2 or 3 so I know not do anything that I know will bug it.
My neurologist also gave me a list of things to avoid to help reduce the potential number of seizures I have a day. She told me to not drink alcohol or anything with caffeine, sleep at least 8 to 10 hours a day (take a nap or go to a quite dark room when my head hurts), don't push my head to its limits, take Tylenol (or the generic equivalent) when I am sick because fevers are not good for my brain because of the seizures... It took five different prescription medications but she eventually found one that has helped to reduce the number of seizures I have a day, they are not gone but there is some improvement, (she had to added a second medication to help stabilize the side effects of the first). So don't give up! Everyone's brain is different because we are all different people so medical treatments that work for one person my not work for someone else. Also there are different types of seizures and even with in a type the symptoms could very, and what can potentially cause seizures in an individual can very.
I know from personal experience that seizures can also mess with your moods which is one of the reasons why I think it is not recommended that people who have seizures drink alcohol. Alcohol can mess with the brain in someone who does not have seizure but it can be worse for people who have seizures (I would talk to your neurologist about it).
Taking pills that are not prescribed by your neurologist or prescribed by a doctor who knows about your diagnosis could make your seizures worse. [Before I was diagnosed they tried putting me on a pill that was suppose to stop the headaches, it made the headaches (seizures) a lot worse!!!] If you look at the warning labels on most medications they will have some kind of possible neurological side effect(ranging from dizziness to cognitive impairment). Most recreation drugs can have much worse neurological side effects. For a person with seizures the side effects of these pills can be worse then they would be for someone who does not have seizures. You should talk to your neurologist about them, even if you have since stopped taken them, the effects they have on you and your brain may stick around depending upon what they were. It is very important that your neurologist knows about them, especially if the pills effect your mood when you took them, because they could effect you brain long term as well.

Take things one step at a time is important, don't let it all overwhelm you at once. Talk to someone who has experience with it. Don't let others decide for you how to feel about your condition. You know your body, you know what your symptoms are, you know that they are real don't let others convince you otherwise. Writing things down in a journal can help to vent frustration. I have also found that reading a funny book in a quite non bright (soft light not florescent) environment helps to relieve stress which in turn helps your head. Good Luck, you are not alone even if it feels like it sometimes.

Re: How Do You Cope?

Epilepsy — Preventing Depression — Project UPLIFT

It’s called Project UPLIFT (Using Practice and Learning to Increase Favorable Thoughts). And eureka! It doesn’t include meds…

What’s more, this new study has proven successful in the prevention of depression in people diagnosed with epilepsy.

Project UPLIFT focuses on teaching mindfulness and methods of consciously redirecting thoughts away from worry and negativism.

And it applies a revised version of a web and phone based method focused on preventing, rather than treating depression.

Thanks to a team of researchers at the Rollins School of Public Health at Emory University led by Nancy Thompson, PhD, MPH, associate professor of behavioral sciences and health education, and lead researcher of Project UPLIFT, “we are able to prevent depression, reduce seizures, and improve quality of life – all at relatively low cost”.

The statistics for depression in epilepsy are hardly surprising. Depression affects between 32 and 48% of people with epilepsy.

In fact, depression is known to have more of an impact on quality of life than frequent seizures.

Also, people dealing with epilepsy often experience barriers such as transportation, frequent seizures and feelings of isolation.

And suicide rates among people with epilepsy are much higher than the general population. A recent study reported that 14% of deaths in people with epilepsy were attributable to suicide.

The UPLIFT materials, based upon Mindfulness-Based Cognitive Therapy for Depression, includes eight sessions:

1. Monitoring Thoughts…
2. Challenging and Changing Thoughts…
3. Coping and Relaxing…
4. Attention and Mindfulness…
5. The Calm Present…
6. Thoughts as Changeable, Thoughts as Impermanent…
7. Focus on Pleasure and the Importance of Reinforcement…
8. Preventing Relapse and Giving Thanks.

The program is delivered in eight 1-hour sessions over 8 weeks, either by telephone conference call or through a web-based conferencing system, originally developed for online education, to groups of seven patients at a time.

“When a group is moderated by someone with first hand experience, the discussion becomes much more effective, yielding greater results,” says Thompson.

Statistical analysis showed that 12% to 19% of new cases of depression were prevented through these cognitive behavioral interventions.

That means, according to this study, up to 120,000 people with epilepsy will have positive results.

Those who took part in the research increased their knowledge and skills for preventing depression, allowing them to incorporate positive techniques to replace negative feelings.

They were ultimately able to make clearer decisions about epilepsy treatment and other aspects of life.

While this proposal targets people with epilepsy, the intervention could be easily adapted to serve other populations, many of whom have elevated rates of depression.

And preventing depression avoids the lost productivity associated with depression, along with the significant costs associated with treating depression after it has already occurred.

It also enhances people’s capacity for managing future encounters with stress and difficult life circumstances.

Phylis Feiner Johnson
www.epilepsytalk.com