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How Do You Cope?

Sat, 05/12/2012 - 15:01
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?

Submitted by nordygirl on Sun, 2012-12-09 - 18:27

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.

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?

Submitted by Journey 1000 on Wed, 2013-10-09 - 04:30
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?

Submitted by phylisfjohnson on Wed, 2013-10-09 - 10:01
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

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