Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

NOT SURE OF THINGS

Hello All,

As I always start out any discussion I find that I wish everyone well.   Right now I am during a big long struggle, and just don't know what to do.   

 Have had my epilepsy for 40 years.   Tough areas I have dealt with is how I don't feel like near family members don't care about my situation.    Looking for help.  

Brother / sister: Never call, never ask.    

Father / Mom:  My Mom just doesn't like hearing bad things so she never asks, and my Dad is just there to support her, so doesn't say much.  

Right now I am on Keppra & Dilantin.  My current neuro is not much to speak with.   Feel the Keppra may have been causing some anxiety issues.   But in my path towards getting a new job, don't want to rock the boat if it were with a new med.  

I am on my own anyway, so if I made decisions it would only be to myself.   Back to my folks, they won't ever ask about anything.   

My health insurance is not there right now.  I have meds to help me out temporarily, but other things could arise.   

I have skipped out on some bills, but just trying to get by.    Do I ever hear anything from anyone?  Don't feel like I have any friends that want to hear it.   

I have been looking at things more positively lately(trying).   Weeding out the negative nature of things.   

I am starting to ramble now.   I need to find a really nice church to be around.    But am finding that my anxiety is preventing me from that.   

Currently unemployed and had seizures on the job with my last two jobs.  Financial struggle.   Not hearing anything back from anyone on job applications.       

 

 

 

 

Comments

Re: NOT SURE OF THINGS

Hello. Just wanted to say I read your post and I understand what you are going through. I started to have grand mal seizures only in my sleep starting 5 years ago in 2009. I was taken to the hospital and had a CT Scan done. It came back normal and showed no seizure activity. The ER dr. did not really tell me anything about why I was having seizures or what type they were. I was sent home. Two months later I had another grand mal seizures only while sleeping. I went to the hospital again. Again the ER did not say anything about my seizures. It was taking too long at the hospital. I had to work that day so I left against hospitals advice. Went home and went back to bed. 2 hours later I had another grand mal seizure in my sleep. Went back to the hospital and was given a liquid anti seizure med intravenously and was given a script for Dilantin 100 mg 3xaday. The ER dr. did not really say anything as to why I had another seizure. He did not say what type they were. My boyfriend and I found out later based on his observations of seeing me have seizures during my sleep that they were grand mal seizures I was having. I would be sleeping and he would feel the bed shaking and turn on the light. He could see my face and lips were blue and I stopped breathing. So he knew they were grand mal seizures. I was told to follow up with my regular dr.

We went home and I started taking the seizure med. During the time I went to my regular dr. and had a MRI done and EEG. Both came back negative and showed no seizure activity. My seizures stopped but the pills caused me to have worse stomach nausea, gave me headaches, had my legs hurt and made me become unbalanced. I told the dr. and they said to take them 2xaday. The pills were changed to Phenytoin 100 mg 2xaday. These pills also caused stomach nausea, headaches daily, but no leg pain or unbalance issues. I took the med for a few months. Then for one week I was throwing up for 5 days straight, several times a day. I made an appt. with another dr. He put me on a new seizure med. Tegretol XR 100. 1 tab every 12 hrs. He also added an anxiety pill Hydroxyzine PAM 25 mg. cap 1 every 8 hours for anxiety and nausea. I took this new pill for 2 weeks. This new pill also caused me to have stomach nausea. I started to get headaches with the new pill and at night I would have uncontrollable muscle jerks in my arms or legs. As the week progressed I started to notice I was becoming angry and mean. My boyfriend would say a simple thing to me and I would get all upset and start yelling. It was getting to the point where I was starting to have thoughts of wanting to sneak up behind him and stab him with a knife. These thoughts were scaring me and I knew they were not normal. So I did some research and found out a rare but serious side effect of Tegretol is rage and anger. So I decided to get off this med and go back on the Phenytoin. The rage and anger and being mean subsided.

I took the seizure med for a year and a half. During that time I also started to notice that my brain would not be working properly in the mornings. I would feel like a zombie and not be able to think straight. I would have to take several hours every day to get my brain to start functioning properly before I could do things like make phone calls or work on bills. Then I started to notice I was starting to lose my memory. I could not remember my aunt's last name or my cell phone number. I was saying wrong words for things and could not remember words for things. I did some more research and found out that seizure meds cause memory loss. There is alzhiemers and dementia in my family. I did not want to start getting this disease early so I decided to get off my seizure med. I slowly weaned my self off the Phenytoin. 

Right now I take no seizure meds for my grand mal seizures. I still have seizures only while I am sleeping and I have 1 maybe 2 seizures a month. I am unemployed and trying to look for work, but so far I have not had much luck in that regard. I have been out of work for a year and a half now and it is making me depressed. I have no health insurance to even afford to take seizure medication. 

I wanted to tell you that I understand about your family not calling you or your parents not asking you how you are doing with your seizures. My family is like that too. My brothers and sisters hardly call me. They live in Minnesota and I live in Louisiana. Both my parents are passed away. My boyfriends step mom and dad and his mom is still alive, so they have become my second parents. But they do not ask me about my seizure disorder or if I had a seizure lately. I guess they don't like to talk about it because sometimes I have become emotional when talking about my seizures. I just feel like they don't understand what I am going through and how I feel every day. Even though I don't have seizures everyday, I still feel side effects from them. I have stomach nausea almost every day. I don't know what is causing it. It might be stomach migraines or some other medical problem. I have headaches almost every day as well. I have had them for 2 years now. I don't know what is causing them either. I have dizzy spells sometimes and I also have auras before I have many of my seizures. I also think I might have Restless Leg Syndrome, but have not have that diagnosed by a dr. But I know I have it because my legs bother me at night and I have many of the symptoms of RLS. So with the RLS bothering my legs and not getting much sleep at night, I am always tired the next morning. 

Well that is about all. Hang in there and know you are not alone in your struggle. 

 

Re: NOT SURE OF THINGS

Thank you to both.  I have spoke to others at times and some have said for me to call out to my parents, but am afraid if I do I am concerned it may do more harm than good.  

  

 

Re: NOT SURE OF THINGS

The side effects of epilepsy is isolation. I m sorry that you feel this way. You are not alone and you are in good company! People here can relate to your situation, so don't feel as if you are on your own carrying this burden. Anyway, just wanted to say that it is hard for some to talk about the ugly "e"word. It is traumatic for you and your loved ones that have seen you suffer. It is not a natural conversation either, not buddy ever said "so, how was your seizure.activity today" said no one ever. Some people think that if they on talk about it it will go away, it is the coping mechanism of choice of people that are too frightened to address it. I wish you best of luck in your job search.

Re: NOT SURE OF THINGS

One of the many things we have to deal with is what seems like isolation. It is not that they don't want to know how you are doing it is just not a thing that comes up in normal conversation. Don't feel that way since it isn't just epilepsy  but diabetica and heart attacks. How many times do you hear hows you hear doing today or is you blood sugar at normal levels today. Or even Hows tour wheel chair getting you  around today. You are having to deal with something that can't be seen and if it isn;t seen they others know nothing about it that is until you have a seizure infront of them. There are many people in here dealing with the same issues and in some causes they need to vent.

Also understand that Epilepsy has a stigma which other things do not have. If you look back in history you would see that many people were still being put in homes away from the public back in the 1960's. The old saying is out of sight out of mind. Even in the 1970's there were still some states that would not give marriage licenses to people with epilepsy. Which is why some of the stigma still remains. I have family members that will not bring up anything regarding to the E word. However I do have a couple that will check how my medicines are working. My sis especially ans of course Mom.

As for family members not calling it runs in most families not just in families with a person with epilepsy

Good luck with your job search and do let us know whats happening

Joe

Re: NOT SURE OF THINGS

Hi Toddsw,

I'm glad you sent in your comments. That's why there is this forum. Each of us has there own personal struggles but as people with epilepsy are things we do share. I have had epilepsy since 1970, following a brain operation.

Sometimes they are more controlled or less so, but they have been chronic. It can affect so many areas of your life.

I have been in the hospital and ER more times than I can remember and lost a number of jobs. I have fallen off of ladders and down steps and injured myself. The long-term side EFX of some medicines can be worse than the seizures.

But what you have addressed is someting additional and equally important...feelings of social isolation, misunderstanding, sometimes ostriazation and lack of care from some people. After 40 years you have been on a long road.

Here are some things that have helped me: 

1. Medicines and doctors can help. With the education and skill of physicans and new medicines being tested and prescribed there are many ways seizures can be alleviated. Finding the the right doctor and a fairly effective medicine may take time; since you have had it so long you are aware of this.

2. Friends and family are sources of encouragement and comfort. But understand though that we cannot depend on them for everything you need. It can be exasberrating when our emotions run low to try to understand but we all have limitations; even if many won't admit it. Even so, be willing to ask for practical ways for help from someone. 

3. Reaching out beyond our comfort zone from isolation to become involved in an activity or helping others is very healing and takes my mind off of myself. Your posting a comment on this forum is already something you have done! And my answering you has helped me.

4. Know your limitations physically and emotionally and avoid activities or things that trigger seizures. That is not often easy (whew), for me my seizures are nocturnal so if other things are not well they wake me up from sleep. I look very tired. :-). I need to remind myself of this regularly.

5. Watch out for feelings of guilt or shame about your epilepsy. Very often depression goes along it. Once I gave my life to the Lord, I return again and again to the fact that he is sovereign and in control over all things. He knows you and will not forsake you. He knows our pain and will guide us  as we seek him. Read and pray from the book of Psalms. Don't worry about "venting", you can be completely honest with God, he will always listen and knows already.

6. Financial struggles can be very pressing for some whose epilepsy is intractible. I am inspired to see there are others who have health issues far worse than me who are persevering. Read "Life without Limits" by Nick Vujicic, a man without arms or legs.

7. Join a church and become connected with even a few individuals there. You will find God's love there and also realize that none of us is really completely "healthy or perfect". Become involved in some outside activity that connects you with other people than your family; you will feel a greater sense of purpose and strength.

8. Refuse to see yourself only as just "disabled" or as an "epileptic". We are more than that; after 40 years for you and me we can see that. Use your "weakness' as a strength to encourage others.

9. Develop a sense of humor. This helps to see things in a different light and can disarm people and bless them in surprising ways. 

Thanks for listening. I'm still learning and putting these into practice, too.

Stanstedy (Greg) 

 

 

 

 

 

 

 

 

 

 

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P