I don't mean to be a negative nancy but im getting tired of my seizures. im trying to balance this condition and my life without letting it hold me back from anything. I feel like my head has screwed me my whole life. ive had two brain surgeries and the epilepsy which has led to almost insurmountable depression, substance abuse (not blaming anyone but myself for that), and problems in my family. I feel so helpless. anyone have any advice on how they coap with anything similar?
getting sick and tired of this
- Thread starter djlo45
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Ruth
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What type of brain surgeries have you had?
Substance abuse will only make your seizures worse. What state do you live in?
To relax my brain, I drink Chamomile tea and Sleepy Time Tea. Try that!!
Are you on medications?
Do not blame family problems, you have to keep a Positive Attitude. Put a smile on your face. I was disowned several times by my family and my daughter and grandchildren because I have epilepsy.
Look at it this way, if they are truly your friends, they will accept you as you are. I was diagnosed when I was 6 years old, I am now 70. I always, from the time I was 6 years old that if they were my friends, they would accept all of me, including my epilepsy. That is a part of me.
You are not helpless!! You may feel that way, but you are not. Educate your friends and family. Maybe they do not understand what epilepsy is all about.
Go to Speber's Auditorium, music has a powerful influence on how we feel. It affects our emotions. Pick soft music. That will calm you down. There are all types of music, pick one that cheers you up. If one is not there, ask Shelley for a request.
Substance abuse will only make your seizures worse. What state do you live in?
To relax my brain, I drink Chamomile tea and Sleepy Time Tea. Try that!!
Are you on medications?
Do not blame family problems, you have to keep a Positive Attitude. Put a smile on your face. I was disowned several times by my family and my daughter and grandchildren because I have epilepsy.
Look at it this way, if they are truly your friends, they will accept you as you are. I was diagnosed when I was 6 years old, I am now 70. I always, from the time I was 6 years old that if they were my friends, they would accept all of me, including my epilepsy. That is a part of me.
You are not helpless!! You may feel that way, but you are not. Educate your friends and family. Maybe they do not understand what epilepsy is all about.
Go to Speber's Auditorium, music has a powerful influence on how we feel. It affects our emotions. Pick soft music. That will calm you down. There are all types of music, pick one that cheers you up. If one is not there, ask Shelley for a request.
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djlo45
I hear you, they really do get to you and the wondering about why and what you done to deserve this can drive you mad and make the depression worse, its hard enough deal with it without picking on yourself looking for the bad or looking for what you think is the bad I should say. For me all these years and I do not know about anybody else but you have to force yourself to look at the good in you and all the good you have done for others then look at the blessings in your life. E is like running the hurdles, you run your best as in life and you try not to knock the hurdle but you will always knock one, this is the seizure but like any athlete you get up and start all over again only trying harder.
Sure you will get fed up getting up and this is where you really get kicked in the teeth and the depression starts but if you do not get up and try again you cannot succeed just like what you go through with every seizure. Ok the substance abuse you make no excuse for and rightly so but I have also thought of ways of escaping the hell. Question, why, whats the point its still going to happen.
As for the family, well we all get that at times and each family is different so we all have to deal with it slowly and in our own way. A lot of the time they think they are helping when its the opposite, you have to try and hold your temper and make allowances.
I hear you, they really do get to you and the wondering about why and what you done to deserve this can drive you mad and make the depression worse, its hard enough deal with it without picking on yourself looking for the bad or looking for what you think is the bad I should say. For me all these years and I do not know about anybody else but you have to force yourself to look at the good in you and all the good you have done for others then look at the blessings in your life. E is like running the hurdles, you run your best as in life and you try not to knock the hurdle but you will always knock one, this is the seizure but like any athlete you get up and start all over again only trying harder.
Sure you will get fed up getting up and this is where you really get kicked in the teeth and the depression starts but if you do not get up and try again you cannot succeed just like what you go through with every seizure. Ok the substance abuse you make no excuse for and rightly so but I have also thought of ways of escaping the hell. Question, why, whats the point its still going to happen.
As for the family, well we all get that at times and each family is different so we all have to deal with it slowly and in our own way. A lot of the time they think they are helping when its the opposite, you have to try and hold your temper and make allowances.
arnie
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Hello and welcome. The best advice I can give you is to get yourself in touch with a good professional counselor and begin some regular, personal, one-on-one therapy. You clearly have a lot of issues going on in your life, and epilepsy is only one element. We can give you a certain amount of advice, and a lot of support, but if you really want to make the necessary changes in your life you need someone right there with you who can see you when you're talking, can read your body language, who can help you figure out what you need to do, who can call BS on you if you start getting off track! Just as you need a personal medical specialist for your epilepsy, you need a personal counseling specialist for your various psychological issues. Online forums are good in a lot of ways, but it can be really easy to pick and choose what you want to hear and say what you think others want you to say. I don't know what experience you have had with counseling. Unfortunately, many people have had bad experiences, or have not been seen by a really good counselor. It's a tough row to hoe, and there is no quick fix, but it's the best way to make the changes that you need to make. Are you in a place where there are good therapists? Do you have coverage for it or the $$ to pay privately? I'm sure your doc would give you a referral, and hopefully some advice as to someone who would be a good match for you.
Anyhow, that's my two cents worth, but I know from a lot of years of experience on both sides of the counseling table that it's the way to go, and that it's definitely what you need right now. Stay in touch with us here and find a good person locally.
Onward and upward!
Anyhow, that's my two cents worth, but I know from a lot of years of experience on both sides of the counseling table that it's the way to go, and that it's definitely what you need right now. Stay in touch with us here and find a good person locally.
Onward and upward!
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Hi djlo45,
Welcome to CWE. Sorry you're having a difficult time, but please know you are not alone. I had a Left Temporal Lobectomy and was seizure free for only 14 months. Then the seizures returned with vengeance. I also went thru a debilitating depression that made me suicidal at times, so I can sympathize with you to some degree. For the depression, I was sent to a neuropsychiatrist who specialized in depression/mood swings that go along with epilepsy. He put me on an anti-depressant. Also, some of the AEDs are also used as mood stabilizers, so ask your dr. about them. I also saw a therapist so I could talk because at the time I was married and my hubby did not understand why I was SOOOO depressed. But then, neither did I understand why I was depressed. So, like Arnie said, if you do have medical coverage to pay for it, please seek a specialist for counseling. And please do not be a substance abuser as that will make the situation worse. It can worsen the depression and epilepsy.
Also, if your neuro has you try more meds and you're still fighting seizures, has your dr. mentioned the VNS to help minimize them? After my surgery and trying many meds, I finally had the VNS (vagus nerve stimulator). It doesn't completely stop the seizures, but it helps minimize them. Plus it could help with your depression. Just a suggestion.
http://us.cyberonics.com/about-epilepsy
http://us.cyberonics.com/about-epilepsy/treatment-options
Welcome to CWE. Sorry you're having a difficult time, but please know you are not alone. I had a Left Temporal Lobectomy and was seizure free for only 14 months. Then the seizures returned with vengeance. I also went thru a debilitating depression that made me suicidal at times, so I can sympathize with you to some degree. For the depression, I was sent to a neuropsychiatrist who specialized in depression/mood swings that go along with epilepsy. He put me on an anti-depressant. Also, some of the AEDs are also used as mood stabilizers, so ask your dr. about them. I also saw a therapist so I could talk because at the time I was married and my hubby did not understand why I was SOOOO depressed. But then, neither did I understand why I was depressed. So, like Arnie said, if you do have medical coverage to pay for it, please seek a specialist for counseling. And please do not be a substance abuser as that will make the situation worse. It can worsen the depression and epilepsy.
Also, if your neuro has you try more meds and you're still fighting seizures, has your dr. mentioned the VNS to help minimize them? After my surgery and trying many meds, I finally had the VNS (vagus nerve stimulator). It doesn't completely stop the seizures, but it helps minimize them. Plus it could help with your depression. Just a suggestion.
http://us.cyberonics.com/about-epilepsy
http://us.cyberonics.com/about-epilepsy/treatment-options
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I have nothing really to add to these excellent posts, but I wanted to welcome you to the board.
I've had problems with substance abuse so I can empathise with you on the problems that causes. Depression which seems to go hand-in-hand with epilepsy is terrible, and if I'm honest that's a bigger problem for me than my seizures.
You've definitely come to the right place though- thinking about the support I've received here makes me cry sometimes. Not unhappy tears though- tears of joy that I can finally speak to people that understand.
I've had problems with substance abuse so I can empathise with you on the problems that causes. Depression which seems to go hand-in-hand with epilepsy is terrible, and if I'm honest that's a bigger problem for me than my seizures.
You've definitely come to the right place though- thinking about the support I've received here makes me cry sometimes. Not unhappy tears though- tears of joy that I can finally speak to people that understand.
thanks guys,
im trying to push on every day but its tough, its nice to know that I can come here and either vent, start a thread, or try to help someone else which will in turn help me. Also Ruth ive had chari malformation when I was 6 (excuse the spelling) and a chrinoplasty when I was 13 to repair what the first surgeon more-or-less screwed up. The VNS that was mentioned sounds interesting il have to look into that
im trying to push on every day but its tough, its nice to know that I can come here and either vent, start a thread, or try to help someone else which will in turn help me. Also Ruth ive had chari malformation when I was 6 (excuse the spelling) and a chrinoplasty when I was 13 to repair what the first surgeon more-or-less screwed up. The VNS that was mentioned sounds interesting il have to look into that
Ruth
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Hi djlo45, Every day when you eat breakfast, write down 5 things that you have to be grateful for.
Today I have to be grateful for:
1. I have the Bible to read
2. I enjoyed my breakfast
3. I have my son and my husband who have always supported me.
4. I am able to do some housework. That is a blessing.
5. My son makes great dinners that I can look forward too.
Think of at least 3 things that you car be grateful for today.
Today I have to be grateful for:
1. I have the Bible to read
2. I enjoyed my breakfast
3. I have my son and my husband who have always supported me.
4. I am able to do some housework. That is a blessing.
5. My son makes great dinners that I can look forward too.
Think of at least 3 things that you car be grateful for today.
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If I'd had the insurance for another brain surgery when I was younger and the doctor's had also agreed I'd had another surgery. How long have you had epilepsy? I've had it 50 years taken about 23 drugs. I've had VNS and it stopped workingfor me.I know about depression these drugs are good at causing depression.
It helped me when I kept a diary and wrote my feelings down and I did that for years.
If you have someone you can confide in when you need to talk that always helps a friend or relative or even a doctor.my neuro has me tell him when I get depressed because I'm prone to depression and it helps to just talk to him for 5 minutes.
Try exercise or what ever you like to do.I'm one that walks and when I've had bad day a good walk helps me.
It helped me when I kept a diary and wrote my feelings down and I did that for years.
If you have someone you can confide in when you need to talk that always helps a friend or relative or even a doctor.my neuro has me tell him when I get depressed because I'm prone to depression and it helps to just talk to him for 5 minutes.
Try exercise or what ever you like to do.I'm one that walks and when I've had bad day a good walk helps me.
Ruth
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Belinda5000, I have had epilepsy for 63 years. I was 6 years old.
I agree exercise is good. It relaxes and keeps me in shape.
I read in another thread that they can replace the VNS. They also have other models. I decided not to get a VNS for me personally. I am sorry that they cannot replace yours.
I agree exercise is good. It relaxes and keeps me in shape.
I read in another thread that they can replace the VNS. They also have other models. I decided not to get a VNS for me personally. I am sorry that they cannot replace yours.
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Ruth,
the VNS stopped working when the battery was fine.I was 2 years old when I was diagnosed with E.
the VNS stopped working when the battery was fine.I was 2 years old when I was diagnosed with E.