sad

[bazpa]

Does anybody get to the point where they just want to give up? Tired of the meds. tired of the doctors. struggling at work, people giving them a hard time at work, because they cannot do what they used to be able to do. Tired of themselves, because they cannot keep up with what they think they should be able to do. I just want it all to go away, and be myself again. I am very sad.

 

[Nakamova]

I know epilepsy can be exhausting, stressful, frustrating out there. Coping is definitely an ongoing process, a bit like the bunnyhop. It sounds like you are taking a few steps back right now -- but that doesn't mean you won't be taking a few steps forward soon. When you feel lousy it can be hard to remember how far you've come, how much you've accomplished, how strong you are. Is there a family member you can call? A buddy? There are also social workers out there who can help you figure out the next step -- don't be afraid to ask for help.
Hang in there kiddo, I send big hugs to you.

 

[Jeannie55]

Bazpa I know what you are going through. I feel the same way a lot. You just want to give up, you cant do the things you are use to being able to do or your brain tells you that you can do. Sometimes part of me just sits ther and says "why bother, why not just sit here and become a veg.", but then there is the other part that say "what are you doing!!! You have family and people who care about you, you are a strong person why are you letting this thing win." That is when I stand up, take a deep breath, and move on. I agree with Nakamova very much, if you dont have someone to talk to then talk here, that is what I do.

 

[bazpa]

Thank you. My whole life is changing. I thought with a diagnosis that everything would be better. I would take a pill, and be my old self again. The tiredness, night sweats, finding myself in places I did not remember going to, nodding out, having to pull to the side of the road, falling out of the chair ect, all went away, but nobody said anything about the side effects of the medicines. My job take concentration, switching from one thing back to another, phones ringing, customers talking, and many interuptions. I noticed this started to be a problem a few weeks after I started the meds, but was not sure what was going on. The doctor sure did not tell me. Luckily I found this site, and it has been so helpful, and I am so thankful to everyone. I have no lost my business that I have worked so hard at for 16 years. It is killing me to give this up, but I can't keep up, and my best friend, and back up friend decided to just quit. I guess I was just too stressful to her, which is another very hurtful thing, since she has been such a big part of my life for 30 years. I don't know who to talk to, as my family thinks I have lost my mind for letting this business go, and does not understand what epilepsy and the treatment does to one. Maybe they are right. I used to be a sharp woman, that had her life together, and now it has shattered, and I don't know how to pick myself back up. I checked into disability, and was told I need to have no income for 4 months. I am amazed that I have paid into that program since I was a teenager, but it is so hard to get help from them, and yet my sister can get a $1500.00 emergency grant from welfare. I watch people selling there food stamp card for 50 cents on the dollar outside the store for cash, and people can buy cooking sherry with their food card, which tastes bad, but is high alchohol content. I am not asking for a hand out here-just a little help. I am so at a loss for what to do. Because I was sick so long, and nobody new what it was, and half my family did not believe me, my husband filed for divorce. He feels bad now. He actually has been around enough to see my seizures. Stress as you know makes this worse. I have had many in the last few days. Scared the daylights out of him when I dropped what I was holding and my eyes rolled back in my head. I guess he believes me now. Thanks to all for supporting me

 

[NeuroNotes]

Bazpa, I just finished reading your posts, and I see that you are online right now, too, so wanted to let you know I've got another post on the way. I do have a few thoughts to share, but I need to collect myself, as you have moved me to tears just now. It's good that you have a place to share during times like this. I think a lot of people can relate, and/or have empathy and compassion, which puts you in good company and among friends. =) Be back shortly.

*hug*

 

[Nakamova]

I don't know the appropriate agencies in Washington state that might help you, but you deserve their attention and assistance. Try calling your representative or Senators to see if they can point you in the right direction. Be persistent.

Senator Patty Murray
Vancouver office
Phone: (360) 696-7797

Senator Maria Cantwell
1-888-648-7328

Rep. Jaime Herrera Beutler
Vancouver office
Phone: (360) 695-6292

 

[NeuroNotes]

I don't know who to talk to, as my family thinks I have lost my mind for letting this business go, and does not understand what epilepsy and the treatment does to one. Maybe they are right. I used to be a sharp woman, that had her life together, and now it has shattered, and I don't know how to pick myself back up. I checked into disability, and was told I need to have no income for 4 months.

I am so at a loss for what to do.

Bazpa, you are still a sharp and savvy business woman who is going through a season of trial and adjustment. You finally have your diagnosis. That's a big feat. Now, whether your family and friends get on board with you and help advocate for you may be a challenge. They will have to be self-motivated and/or require a lot of education. In the beginning of this new season, you are going to have to depend on yourself and others involved with this disorder directly, which is what you appear to be doing here.

Now you have to find the right meds, or combination of meds that will allow you to function so you won't lose the business, or you may have to wait out the time period if you really feel that adjusting your meds will not help you hold on to what you've worked so hard for. Have you spoken to your doctor about your mood, as well as the side effects? With regard to your business, in my opinion, I wouldn't make any drastic decisions until you are not feeling so sad...until you can think a little clearer. I'm sure it all seems so chaotic for you, but it's that very chaos you are focused on that is exacerbating your seizure activity and lack of clarity, so you must make that a priority right now...to get them under control. Seizures begat seizures.

I did a little search in your state and found this program. It will at least get you in contact with an advocacy network. The program is still active.

Project UPLIFT for Epilepsy.

Project UPLIFT (Using Practice and Learning to Increase Favorable Thoughts) is a research study that is testing the effectiveness of the program on helping people manage low mood. It is a mindfulness-based cognitive-behavioral self-management program. The program focuses on reducing the risk of depression as an important way to help people manage their life as well as their mood."

"Project UPLIFT 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 state and are not yet fully depressed.


How to get Involved in the study

People who want to take part in the study must:


Have a diagnosis of epilepsy.

Have been diagnosed with epilepsy at least 3 months before they start the study, and either be on medication or have the permission of their doctor.

Have symptoms of low mood, like feeling down or losing interest in things.
Be 21 years of age or older.
Speak English.
Have access to a telephone.
Be mentally stable.
Be willing to take part in the UPLIFT program by completing the screening measures and by attending 8 weekly sessions (by phone or Web).
Be willing to complete the study measures three times.

Those who live in Washington and are interested in taking part in the study can contact Dr. Robert Fraser to get a consent form. This form must be signed and returned. It gives information about the study and what is expected from those who take part, lets them know that taking part is completely voluntary, and lets them know that if at any time they want to get out of the study, they may do so. Once a signed consent form is received, a 10-15 minute screening will determine if the person qualifies to take part in the program. Once this is determined, the person will be able to be a part of the study.

Compensation

Volunteers who qualify and take part in the study will get a small payment. Participants will get $25 for each assessment that is completed and $15 for each Project UPLIFT session that is completed. There are 3 assessments and 8 sessions so a person who takes part can get $195 at the most.

Source: .sph.emory.edu/ManagingEpilepsyWell/research/uplift_main.php

You need to c/p or I can send you the link via PM. I can't post the link at present because I have not been posting here long enough.

It's imperative that you get your stress and mood under control and work on getting sound sleep. Easier said than done when you have a business and financial concerns, and don't feel well, so I don't mean for these comments to seem like pat answers. I've walked the talk. When I couldn't find outside help, (including disability), I became my own best friend and advocate. I have a wonderful, supportive family, but they simply don't understand, nor have they ever been an advocate for me. It's either do it yourself, or nothing changes. I've worked hard and paid into the system since I was a teenager. I had a very strong seizure and came close to death. I simply could not go back into a high stress corporate environment again. The lights were so much brighter, and the sound amplified. I was experiencing symptoms similar to low latent inhabition. My senses were taking in a lot more data than it was able to process, and that still hasn't changed, but I've found ways to manage it. As a side note; I'd actually had a seizure disorder since at least age 4, but went either undiagnosed, or misdiagnosed until the strong one. Rather than filing for disability right away, I took some time off work to focus on research that would help me better understand this disorder and manage my seizures. Last year I was notified by SS that I don't qualify for disability because I have not been paying into the system for the last several years, and don't have enough credits built up for that time period. Huh? I've been paying into the system for 20 plus years continuously, and because I fell off the radar for 5 or 6 years, I now don't have enough credits to qualify? You do have hope in qualifying for disability, so please don't give up hope, OK?

I feel it would be helpful for you to find an epilepsy advocate group in your area/community who can assist in guiding you through the process, and perhaps find a course of action that will expedite the filing of your application. You also need people around you who understand your plight. Maybe you could also find out more information through the contact lists Nakamova left you, and through this advocacy network which is active in your state:

sph.emory.edu/ManagingEpilepsyWell/about/news.php

It's so good that you are reaching out. PM me any time.

Ƹ̵̡Ӝ̵̨̄Ʒ

 

[mspang]

Well since 1993 I have had the tonic clonic seizure where you go unconscious. Finally in 1997 I went in remission, but only for it to last three years. The reason was because the drug that was doing the job Felbatol caused aplastic anemia said a new neurologist so he took me off it. He did put me on another drug that did pretty good and kept my seizures aways for months at a time. That's until 2007 when I got the atypical seizure where i'd have bunches of them every couple weeks for almost three years. Definitely would have to say 2007 thru 2010 makes me think i'm lucky to be alive. In between those years I had unsuccessful VNS Therapy and brain surgery. Finally though lucky for me I was put back on Felbatol and its doing its job and keeping my seizures away pretty good. Just think positive and think everything will eventually turn out good if not sooner. I wish you all the best!