not knowing how to cope

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idunno

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My first post. I have been reading other posts, but most of you seem more brave or have more will power than I do.

Quick synopsis of last 4 years.
Husband kissed me good bye, went to work and died unexecpted. I had lost my only son years before, and nothing prepared me for his loss too.

So I am a widower. In the 4 years that he died, I had a 7'th right knee surgery, a torn calf on the other leg and a broken ball of the other leg all because I favor the left leg.
Had a seizure and hadn't had one for over 20 years. On meds which make thinking hard and I am foggy and tired all the time.

Worked at a school with young special needs children. I physically could not do it anymore and they did not offer me a different job where it wasn't as physical. So I quit this year, just because I wanted one year of no orthopedic injury.
What I didn't take into consideration is how my brain function interferes with speaking. I drive only to a few places and sometimes I don't recognize where I am at. So now I am trying to understand how to answer interview questions to get a new job.
Not been good. Didn't understand how bad it is when someone asks me a question that is not an easy question. I just go blank...and can't find words. Can get words if questions are more specific.

I ended up on medical assistance. Just found out yesterday they don't pay for my meds.
And so now i am trying to brainstorm. Do I go off meds and quit driving and live until my money runs out. I do not see an option now.
The doctor wants to try another med, but living alone and having to go through a ton of meds that left me absolutely whacked, does not sound like living. I honestly can't see another option. I am not suicidal, but have never faced not being able to afford to live and not really wanting to see if the next med will kill me from crazy thoughts. Never thought i would end up with this problem. Not strong enough for criticism
right now. But very open to options that I cannot see that maybe someone else will see. Thank you.
 
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Hi, idunno, and welcome to CWE!

There are many people here who can offer empathy, sympathy and perhaps a few suggestions. If you're comfortable with it, perhaps you can say where you are from (ie. US and which state, Canada, or elsewhere) so people can offer financial advice related to specific areas.
 
I live in the United states in rural Pennsylvania. My neurologist has talked with my friend and he wants to see me with her so that he can talk and she can help me understand what he has said and why. My friend is going to be able to keep up with the pace of listening and understanding and will be able to explain what he is saying or has said.
She will be my advocate as well. She is scared of me being on another medicine too.

I have a lot riding on this appointment today. This med has killed my memory and ability to follow along in a normal paced conversation and to come up with words that make sense sometimes, but it had the least side effects so far. I forget, but I believe there were only one or two medicines that I have not tried already. So I am soon at the end of medicines to try.
So nervous now...but maybe today will bring some answer to questions and I can't even get them all out.
 
Hi idunno, welcome to CWE!

You don't mention which med you are on, but many of the seizure meds can be made affordable via manufacturer discounts or other programs.

Below are some threads with suggestions:
http://www.coping-with-epilepsy.com/forums/f45/when-you-cant-afford-medication-1452/

And nonprofit organizations that can help:
http://www.needymeds.org/about
https://tafcares.org/

Definitely let your neuro know about the cognitive issues that have been problematic with your current med. Also about any depression and/or other emotional issues. If you haven't tried Lamictal, it might be worth considering — though every person reacts differently, it has a reputation for fewer cognitive side effects. (It's what I'm on).

There are a lot of new meds out there so don't give up!

And feel free to vent here at CWE any time. :hugs:
 
I am on Lamotrigine extended release tablets.

Thank you Nakamova! I did not know that those things were out there. My friend talked to my neurologist and I am staying on Lamotrogine ER since I had really bad stuff happen on other meds.

My neurologist does not know how to help get assistance for meds. But I did find out you can cross the border and get them. But I don't know if it is legal.
I have searched some of what you have given me, not found any to take the extended release, but i am not finished with it.

Just wanted to let you know thank you and I will keep working hard to figure them out to see if any of them places can help. Some are asking for money before they help. I don't trust them because they don't even let me know if they can help.
At least I have hope tonight that maybe one of those things can help me afford meds and that I get to have a life as best as I can.
Thank you so much. You are like an online angel.
 
Good luck and keep us posted!
 
Hi idunno,

Welcome to CWE! I've been on many different seizure meds and I found out I was drug resistant after having a DNA test done. I later found out that using coconut oil on my skin once a day has done wonders for me. I just put it on my legs and feet in the morning and that it turn builds up ketones in my body which reduces the seizures. I've had brain surgery twice to reduce the seizures but between using the coconut oil and the CBD oil (medical marijuana) the 2 of them have helped me the most since I've had epilepsy for the past 45 yrs. I also have found that taking vitamin B12 once a day has helped a lot also. I wish you only the best of luck and May God Bless You!

Sue
 
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Well...at this point I figured out the Rx thing. It will be a lot cheaper than the pharmacy I was going. That is really helpful. I am waiting for a drug representative to get back to a friend. She is actually doing that. I know I worked hard...and got some info and at least a plan for next month with the Rx discount and going to a different pharmacy. That is insane the price differences...and glad I know now. There may be more I can do, I just can't keep track of it all yet. I have to kind of wait for good times in a day to see what other things there are. I tend to read everything and remember nothing. I am trying to chunk it down.
I am definitely feeling hope and I am so grateful for this place! Thank you everyone for all the help so far. I know that in time, I may be able to even do better than RX...but I will take anything I can get. I will wait for a clearer brain time that lasts longer than it has been.
Thanks so much everyone!
 
idunno,

Pharmaceutical companies have assistance programs in which people can get medication at low cost or free if you financially qualify. It can be done through a third party (e.g., nonprofit organization) or directly with the pharmaceutical company.
 
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