help me help family understand

[bazpa]

My family thinks, especially my dad, who is a know it all type thinks I have lost my mind, because I have given in, and let my business go, as I am unable to conentrate, and get things done on time. I have been harassed so bad by the county office as I am contracted by the state that it was just a matter of time before they forced me to close. As it stands they made me shut down for a week on a medical emergency. As a lot of you have experience-things that I used to do without a thought, now take me an hour. This has been so terrible. I feel like I have gone from a sharp, intelligent woman, to a an idiot. My family has read what comes up when you put a basic search for epilepsy, which tell what happens, and that basically your are treated with medications or surgery. This really doesn't tell anything close to the whole story. There is no mention about mood swing, tiredness, personality changes, medicine side effects, memory loss, anxiety, depression, and all the other nasty things that happen to us along the way. I would really love to be able to send some web sites that would explain the bigger picture. In their opinion, I should be able to take a pill every day, like my dad takes his blood pressure pill, and all will be well. How I wish it would be that easy. I have been so down, and upset about losing my business, best friend, and don't seem to have family support either, that I would really appreciate any suggestions. I know I am a big girl, and should be able to handle this on my own, but I don't feel much like a big girl right now

 

[Nakamova]

Here are some sites you might direct your family too:

About moods, behavior, thinking:
http://www.epilepsy.com/epilepsy/thinking_seizuresthinking
http://www.epilepsy.com/EPILEPSY/moods_behavior
http://www.epilepsy.com/epilepsy/thinking_behavior_behavior
http://www.epilepsy.com/EPILEPSY/behavior_personalitychanges
About depression:
http://professionals.epilepsy.com/page/psysym_depres.html
About side effects:
http://professionals.epilepsy.com/page/table_9steps_sideeffs.html
About fatigue
http://www.epilepsy.com/epilepsy/interprob_fatigue
About memory issues:
http://www.epilepsy.com/epilepsy/interprob_memory

And a general report by the Mayo clinic on neuropsychiatric and memory problems in epilepsy:
http://www.mayoclinicproceedings.com/content/78/6/781.full.pdf

 

[DayDreamer]

Do you still drive? If not, you could possibly ask one or both of your parents to take you to an epilepsy support group found at epilepsy.com or efa and if they were interested they could sit in on it and learn, vent, etc. If they were not interested, they could still transport you and sit close by and possibly read while you gained some support and still hopefully learn things themselves by hearing things not really paid attention to. They might start to realize how hard you are trying.

 

[NeuroNotes]

My family thinks, especially my dad, who is a know it all type thinks I have lost my mind, because I have given in, and let my business go, as I am unable to conentrate, and get things done on time. This has been so terrible. I feel like I have gone from a sharp, intelligent woman, to a an idiot. I have been so down, and upset about losing my business, best friend, and don't seem to have family support either, that I would really appreciate any suggestions. I know I am a big girl, and should be able to handle this on my own, but I don't feel much like a big girl right now

I'm sorry to read that you did lose your business after all. So many people are losing their businesses these day and they don't have epilepsy. Look at all you have accomplished 'with' a disability. My advise to you would be to make peace with your decision, and close out the voices that lack awareness and education about your disorder. You have a lot to process after your diagnosis.

It may seem, at times, relentlessly exhausting and frustrating as you try to explain and educate your family about this disorder and your unique needs, especially during this time of transition. Continue to keep the communication channels open. Give them stats, i.e., that epilepsy is as common as breast cancer, and takes as many lives. That the mortality rate for people with epilepsy is two to three times higher, and the risk of sudden death is 24 times greater than that of the general population.

The article "Storm in the Brain", printed in Newsweek, states:

"It is thought to be rarely fatal, controllable by medication. There is a terrible irony here: because most people with epilepsy are not in a constant state of seizure they are, rather, in perpetual but quiet danger their condition can appear less serious than it truly is. It is all too human, but all too true, that a problem, including the problem of a serious medical affliction, stays out of mind when it is out of sight.

Because so many of those who must endure it do so valiantly, and with grace and grit, it is more difficult for those not directly affected by it to grasp that epilepsy can kill. Put harshly, we need more of a cancerlike sensibility around epilepsy. We cannot usually see our friends' cancer, but we do not hesitate to invest the search for a cure for different cancers with the utmost cultural and political importance. We must now do the same with epilepsy."

Source: newsweek.com/2009/04/10/a-storm-in-the-brain.html


Your family is proud of your accomplishments, no doubt. Because they have misinformation about the seriousness of your condition, they probably worry that the decision to give up your business will cause you more hardship in the long run. Your father may be looking at it from a financial standpoint, your future security, and may simply be projecting concern and worry. They will need time to process all this too. Try to be patient. You need time to process and heal with as little stress as possible. I do hope things brighten up for you soon.

 

[lovemyladybug]

neuronotes , that was extremely touching and very true .... bazpa , hang in there and keep trying , maybe with time they will understand

 

[bazpa]

Thank you to everyone for all the advice. I just wish I could get over this terrible sadness. The anger that a condition/disease, whatever you want to call it has come along, and taken so much from me. I realize that I have had these seizures from as far back in childhood as I can remember, but just every now and again. Funny how you know that feeling, and don't forget before an episode starts. I feel really dumb now that I never said anything or thought much about it. It is true that they continue to get worse. In my twenties-going to movies, started bothering me. I did know what it was. One night after the move, I realize that I could see nothing when I looked down. My eyesight is always effected. Scared the hell out of me! so bad that I did not go to the doctor out of fear. Weird things like that started happening, until at 43, they just wiped me out. If only I could have found 1 doctor that would have payed attention to all that I was saying-maybe I might not be in this place right now. I am so disgusted in the way doctors treat patients, and how stupid they tend to make one feel. What good is all the education in the world, when they don't know how to apply it. Ok-sorry-guess I am just venting. I should maybe call my neuro about this horrible sadness, but then I think I probably should be feeling this. I have not yet been on a medication more than 3 months, and all the changes are probably not helping. Trying to leave a message with this doctor is awful-you first have to get through his bulldog of a nurse, who decided if she will or will not give him the message. No offense to bulldog owners! I love them

 

[Nakamova]

I should maybe call my neurologist about this horrible sadness, but then I think I probably should be feeling this.

Don't hesitate to call your neurologist. There's grieving, and then there's depression. What you describe sounds like depression, and it's important to contact a professional to help you sort it out and get treatment. If it's a side effect of the meds, then that's worth knowing too so that you can re-evaluate them.

 

[lonnie]

Nice meeting you Bazpa

Dear Bazpa my heart truly goes out to you. I was unaware of this site before now. I can empathize with you. After 19 years my family are extremely non supportive. My husband is a good man and an excellent overall provider.(not for my medical in general. He does take money out of his check with an insurance (Aflax) that does pay for most of my extremely expensive medication

As far as my epilepsy and other medical conditions he has recently say in front of some significant people.

The only way I present myself or interact with people is my bad health
I worship dr's
My bad health is the only thing I think or talk about
I could stop my seizures if I wanted to.
Sometimes I even do it for attention
There is an entire list of health problems that I have had for many years and just want to defend myself
I should stop trying to defend myself and listen to what he and a significant other are trying to tell me"listen to the above things and change them"

He has no idea just how incredibly hard is was and is to hear those things from him, someone who is supposed to be your soul mate. Someone who promised to be with you in good health and bad.

To hear of your depression saddens and concerns me. I know personally. It only makes things worse all over. My husband just found out I have been seeing a psychiatrist 1x month for years and that is supposed to be a no-no too.

One instruction that was given to me (by my psychiatrist) that might help you to is "Stop trying to change his mind. Why my husband is like this he is not sure but my husband isn't going to change his mind and to try will only make it worse"

May God bless and be with you. Via this board we are not alone as we feel we are. Now if we could just emotionally feel so.

 

[bazpa]

Thank you so much. He actually filed for divorce a couple of years ago. He now says it was because he thought it would cause me to become active again. You see, he just did not believe that anything was wrong. Six months before my youngest daughter was to graduate from high school-it was like I hit a wall. I used to be a very active person. I would be up by 5, and be lucky to be home by 9, then do a few chores, bed, and start over again. That all just stopped. Just getting myself to work became a struggle. I started catching everything, including shingles twice in six months. I ended up having to close my business a couple of weeks ago. Just another blow. It seems like my whole life has just blown up. I was going through all the paper work from my office-what I needed to keep-what I needed to take down to the county office-it felt like I was looking at 16 years of my life. I can actually look at my paperwork and tell when I really started getting sick. I also realized that the bad times have been going on for 5 years, and not 4 years. I do know I have had these seizure all my life, but I just wish I knew what made them get so bad that they stopped my life, and why there was not one person, or one doctor around me that did not realize what the problem was. My friends and family have seen me have these for a few years. I have been to so many doctors. I read a post a couple of weeks ago about a ladies husband who had his eye droop while having a episode in his truck. He was diagnosed right away in the E.R., and told about the eye issue as being todds syndrome. I had this happen 15 years ago, after going to a movie. This kept happening to me. I was sent to several neuro's, but never got any answer. I must have the worst luck in the world with doctors! I will say that having family and friends that are not supportive is horrible. I may send you an instant message, because there is a little more that happened with my husband that changed his mind, but I am not sure that I want his support any longer. Sometimes it comes a little too late. Best of wishes. I hope you are getting good care. Thanks again

 

[elizzza811]

I can completely relate. Once I called my sister at 2am because I'd experienced one of my 'dizzy spells' (didn't know it was a seizure back then), and her response was, "Do you know what time it is?" And nobody in my family could seem to understand why I wasn't unpacked 2 weeks after moving into this place, too, even when I told them I wasn't sleeping and felt exhausted. (I have severe OCD, too).

They weren't there for me when I was searching for answers to explain my symptoms either. I just felt like my family was continuously rolling their eyes at me (and things haven't improved much), thinking I was exaggerating my symptoms and that nothing that drastic was wrong with me or doctors would have found it, and that I was just lazy.

I feel for you...

 

[NeuroNotes]

I also realized that the bad times have been going on for 5 years, and not 4 years. I do know I have had these seizure all my life, but I just wish I knew what made them get so bad that they stopped my life, and why there was not one person, or one doctor around me that did not realize what the problem was. My friends and family have seen me have these for a few years. I have been to so many doctors. I must have the worst luck in the world with doctors! I will say that having family and friends that are not supportive is horrible.

Hi Bazpa,

Were you able to contact Dr. Fraser with the UPLIFT program? As far as I know they are still accepting recruits in your state. They will listen and give you guidance. They can assist you in managing your thoughts that can lead to low mood and depression. and you'll be compensated for your time and participation.

Project UPLIFT for Epilepsy is a program designed for people with low mood. The program is offered over the phone or the web and uses group therapy and mindfulness to help individuals manage their mood. The program lasts for 8 weeks and is now looking for people with epilepsy who live in Washington and are not yet fully depressed.

Contact information:

Washington
Contact: Dr. Robert T. Fraser
Phone: 206.744.9131
e-mail: rfraser@u.washington.edu

**Recruiting has been completed for Georgia, Michigan and Texas

Study Staff Members:

Emory University
Principal Investigator: Nancy Thompson, PhD, MPH
Research Project Coordinator: Archna Patel, MPH, CHES

University of Michigan
Research Specialist: Shelley Stoll, MPH
Epileptologist: Linda Selwa, MD

University of Washington
Principal Investigator: Robert Fraser, PhD
Mental Health Consultant: Erica Johnson, PhD, CRC

University of Texas
Principal Investigator: Charles Begley, PhD

http://www.sph.emory.edu/ManagingEpilepsyWell/research/uplift_contactUs.php

http://www.sph.emory.edu/ManagingEpilepsyWell/research/uplift_main.php

 

[NeuroNotes]

What wires together - fires together (Plasticity)

Many of us can relate to your story. Many of us have battled with depression and feelings of low self-esteem due to this disorder, and many of us have been let down, and are still letdown by our friends and family. Many of us still battle with low mood from time to time but have found tools to cope, i.e., this forum and others, medication, alternative methods, etc. Recent psychological studies (based on the 9-11 tragedy) have shown that focusing on or reliving past hurts and/or traumas (edited to add: during counseling) is not always beneficial and may actually be disadvantageous long term. Thoughts create neural pathways. The more negative thinking, the more you reinforce those pathways and networks. This is why I thought the above program I shared with you a few weeks back might be beneficial for you.

Here is a short video that gives an example of neural connections taking place as well as 'pruning'.

[ame]http://youtu.be/Nmvk3zlyQ2wd[/ame]

Bazpa, I understand how important it is for family and friends to 'get it'. You need affirmation, compassion and nurturing. You need them to feel the depth of your pain and suffering, your hurt. You need emotional healing and you don't want to go through this alone like you have most of your life. You may want your family and friends to wrap their arms around you and tell you "it's going to be OK...we are here for you". You want someone else to help carry your burden. You probably also want them to feel your emotional pain and how much you were misunderstood. They can't and never will unless they've walked in your shoes or experience this disorder for themselves. You can only continue to keep the communication open, and share information but empathy takes time and may never manifest fully. Did you ever see the movie "The Doctor" with William Hurt? Perfect example.

The Doctor
Dr. Jack MacKee (William Hurt) is a successful surgeon at a leading hospital. His "bedside manner" with his patients, who are in many cases seriously ill, is also quite lacking.

One day while on a drive home from a dinner party, Jack has a coughing fit. In an examination, Jack has a sample of a growth removed from his throat. The biopsy comes back positive for cancer.

He then experiences life as a patient, including how cold and emotionally void hospitals, some doctors, and his own colleagues can be. He begins to empathize with patients, which is a new experience for him. Source: http://en.wikipedia.org/wiki/The_Doctor_(film)

If they don't meet your needs or expectations, you may build up resentment and unforgiveness 'and' more negative neural pathways reinforcing that resentment and unforgiveness.

Sometimes, after I've had a seizure, one side-effect can be negative emotions. I can get memory flashes from my past. I have experienced several traumas and when there is abnormal electrical activity in my temporal lobe area, those traumas can be brought back to my memory in vivid detail, like a TV being plugged into a receptacle and up comes a picture, only it's a horror movie. My right amygdala (negative emotion) can become over stimulated, and if I am not mindful of this, I can allow myself to be emotionally and physically affected. That is not at all beneficial to my brain or biochemistry and can have long term effects on my health. The brain doesn't know the difference between real and fantasy. This is clearly exhibited during visualization practices. Critical thinking skills and mindfulness tools can assist the brain and body in differentiating the two when your emotions want to get the best of you.

I've been experiencing seizures since age 4, and trauma and stress exacerbated the disorder. Even still, I was misdiagnosed up until just a few years ago, after starting a new business. I had a lot to process, and ended up closing down the business for a season. I went through a time of self-discovery that made me realize that I was a pretty awesome person for having had as many obstacles as I had experienced, but still had some spitfire left in me, lol. I found an inner strength from this realization and it helped me carry on. I cried a lot as I learned the symptoms of TLE, but they were happy tears because now I knew...now I had something to work with. Now I could really get to know myself...'me' and learned to block out the other voices of my past and present that thought they knew me better than myself.

A little history:
My first husband sustained a closed head injury after being in a train accident. That injury led to seizures, which the doctors missed all together. He got progressively worse and no longer wanted to see doctors. He eventually became very depressed. Shortly after the birth of our daughter, he took his life. I was home at the time. Our daughter was 11 days old. He used a shotgun and the scene was a horrid nightmare. Life insurance doesn't pay in the case of suicide, or at least it didn't for me. Suddenly I was pretty much on my own, with a disorder (unaware they were seizures) and a child to raise.

Then in 2000, I experienced identity theft. This was at a time when there was little to no support for victims of Internet crime/fraud. I had to file bankruptcy, and I lost my business. I had finally realized my dream - to start my own business. Within a few months I had more business than I could handle. I had only been in business for about a year when this happened. I had to start my life all over again, yet again, relocated to another state, yet again, and continue to support my child, now with no credit and a feeling to humiliation.

A few years later, I remarried. We had been married for a couple of years when I found out I had a seizure disorder. While I consider my ex to be a good person, I chose to divorce him because he was bad for my health. He was supportive in this request and we had an amicable divorce. No matter how much I tried to educate him on this disorder and the triggers that could cause me to seize, he pretty much continued on with his normal life and habits. In other words, he still wanted me to participate in hobbies and lifestyle that were obvious triggers for me, i.e., going to almost every college football game (his favorite team) and tailgating before the game. I was exposed to extreme temperatures most of the time and loud noise. Eventually he stopped making me feel bad for not going. He simply wanted me to participate in things that he was passionate about, and he wanted me by his side. I had to step outside of my personal situation and see it from his perspective as well. He liked watching TV in the dark. He had to fall asleep with the TV on in the bedroom. The strobing encouraged nocturnal seizures for me. He now 'gets it', sorta. Like you said, water under the bridge, but there is forgiveness on my part now, which helps to alleviate unnecessary stress. I allowed myself to feel less valued because he or other family members didn't understand. That was my fault, not theirs. No one can make you feel that way unless you allow it.

The reason I am bringing all this up is because I 'know' that even in the worse of situations there are always silver linings to be found. My past made me strong, not weak. I can't do the things I use to, but I've found other outlets. I overcame what seemed like insurmountable obstacles (with a disorder), and learned that I could change my outlook on life, simply by how I perceived my world. I had to make peace with my family and friends and myself. I also lowered my expectations with my family. They still struggle with comprehending what I've been through, or the nature of this disorder.

What I have learned is that my thoughts (even in childhood) created neural pathways that were disadvantageous to my well being. I needed to prune (atrophy) those negative neural pathways, because eventually they connect with other negative pathways and wire 'and' fire together, creating neural networks, as is demonstrated in the video. Mindfulness-based, cognitive-behavioral, self-management was very beneficial to me and still is. UPLIFT utilizes mindulness-based cognitive-behavioral self-management in their program. I have no association with UPLIFT. I just know from personal experience how beneficial such tools can be.

Mindfulness helps you step outside of your experience. You become the observer of your experience rather than the one experiencing it. This helps in preventing one from becoming too self-reflective, and studies have shown that too much self-reflection can lead to depression, especially for women.

Do I still get disappointed in my family's lack of awareness from time to time? Yes.

Do I allow them to get to me like I use too? Sometimes, but I don't nurture my disappointment.

Allow yourself to feel fully, then move on. This will assist in atrophying pathways of hurt and disappointment. It won't pay the bills but it will help spare some of the energy you expended trying to get family and friends to understand what you've been through most of your life. You are your own best friend and your best friend says:

To self ♥
"I love what you are, what you do, how you try.
I've seen your kindness and your strength.
I've seen the best and the worst of you.
And I understand with perfect clarity exactly what you are.
You're a hell of a woman.”