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BBBlue

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I had my 1st grand mal last November while driving. I was coasting slowly and stopped after hitting a sign. I had my license revoked. And I had the worst year trying to get rides or help. No one understood the problems of getting groceries, Rx's and especially the dog couldn't go to the groomer to have his nails cut and trying to get to the rabies clinic was impossible. I worry I may lose him. I also have other health problems and have been on SSD for a long time.

I got my driver's license back and then had a grand mal on Halloween while at my Mom's. The seizures happen after not getting enough sleep from living downtown. I hunkered down at my Mom's not wanting to go "home" but I need that zip code to qualify for Section 8 Housing but I know if I go back I will not get any sleep. Yes, I have industrial earplugs. The doctor believes the seizures are from lack of sleep and stress.

My Mom has a lung disease and cannot do much; she is suffocating. In my paranoia from realizing I now am diagnosed with epilepsy, I called Adult Protective Services for help. Mom can hardly function and stubbornly said she needs no help. I don't know if I should try to use their services as I have had nothing but problems with social services including missing most doctor appointments using the disability bus or being forced into situations I never want to be involved in. I don't trust the system. I need reliable rides to doctor appointments, tests, grocery shopping. Plus they want me back in my room and not at my Mom's for their help. I cannot go back there without losing it.

I am on Lamictal increasing 25mg per week with panic attacks, migraines, itching, vivid nightmares. I was told this is normal until I adjust to the medicine. My Mom expects me to be normal as the dosage increases. And the last 2 places she drove me to, she got very ill and couldn't drive.

I am very scared. I don't know what to do or what is the right choices. I am not getting the support or good advice I need. I feel very alone. Should I try Adult Protective Sevices? I told them I was mentally ill because I figured it was the only way to get their attention and help. I am suppose to call the social worker back. I am scared to death to call them back. Now what?

Sorry this is so long. It has been a bad, long year. Thank You!
 
BBBlue,

First, welcome to the forum. I'm so glad you found us!

You are in such a tough spot, one that so many people with disabilities face. Trust me, I understand. And I'm so sorry for what you are going through.

First of all, you are not alone. You have us. <<<<<hugs>>>>>

One thought is to pick up the phone and call 2-1-1. They can hook you up with all the government and charitable services that are available that could help you. Each 2-2-1 is run by their own local area and most counties have one. Here is the national website. Dialing 2-1-1 on a landline will get you to your local 2-1-1.
http://www.211.org/

Another thought about help and support. The sicker we get, often the more isolated we get. We need to do the opposite to help ourselves get well physically and mentally.

A suggestion, is there anything you believe deeply in, or at least a little? A place where people help and support each other and have their belief or conviction in common? Someplace where you feel like a part of something that is bigger than yourself and helps you have purpose? It could range from a church/synogogue/mosque/temple to the sierra club, the PTA, PETA, or a million other things. Get up and go, no matter how you feel. Talk to people. After awhile tell the people you know well your needs and see if anybody can help. Some organizations will be able to be more helpful to you than others. For some organizations that hold compassion as a strong shared value you can go straight to the leader whether you are a member or not or have ever been to a meeting or not. Explain your situation, and ask for help (rides, someone to bounce ideas off of, help figuring out assistance options, etc). The help will be generously and happily given - it makes them feel good.

If you are treated at a major regional epilepsy center, many have a social worker that is an employee of the clinic. They may be helpful in helping you find resources.

Sleep - try white noise. You can turn it up quite loud. It can be a fan, downloaded MP3, static on the radio, you name it. Noise cancelling headphones work nicely, as do earbuds with industrial hearing protection ear muffs over the top. One of my favorite white noise things is waves on the beach with quiet peaceful music in the background. There's also one with rainforest rainshower with birds in the background. I forget the name of them but I think it is part of some "natural sounds" series. You may not fall asleep but you will feel peaceful!


About doctors and getting the help that you need. Are you on Medicare, Medicaid, any health insurance? If so get a team of doctors to manage your care.
  • Primary Care Physician
    • Your primary care doctor can help coordinate care and manage side effects of any drugs you are on, as well as make sure your various doctors are talking to each other.
  • Neurologist/epi
    • Your neurologist or epi would manage your seizures, seizure meds, etc., and the side effects of your seizure meds.
  • Sleep Doctor (who is also hopefully a neurologist)
    • A sleep doctor will do a sleep study to rule out any sleep disorders, and will prescribe whatever actions or meds he thinks will get you to sleep.
  • Psychiatrist
  • Counselor
    • Someone to talk to whose job it is to listen and advise. I've heard the quality of services varies widely and I have no idea how to find a good one, or find one at all. 211 might be able to help???
As for your mom, 2-1-1 may have a suggestion for a free social work, visiting nurse, or counseling resource that can help your mom see what needs to be done. If she is on medicare they will pay for a service to come out and do an assessment. Your mom may be suffering from depression, which would explain her unwillingness to help herself or let anybody else do it either.

You have a lot on your plate. IMHO, start with yourself. You know what they say on the airplanes... "put your own mask on first before helping someone else" If your health isn't up to a certain level you won't be able to help anyone else either.

Hang in there. Things will get better.


Oh - addition... If you are experiencing lots of side effects with the lamictal, ask your doctor about ramping up more slowly. I did and it made all the difference. If after a few months you still have headaches then this may not be the med for you.
 
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Hi BBBlue --

Endless provided lots of great advice above -- I hope it allows you to get some help and feel better.

I had some of the side effects you describe when ramping up onto Lamictal -- they did go away after about 2 months.

Best,
Nakamova
 
Thank You!!!

Thank You SO much Endless and Nak for answering. Excellent options. Yes, I have a PC and now a neurologist. I also have AARP. Which is pretty good insurance. I feel that both my doctors care and will try and work closer with them. Although the neurologist didn't sound very optimistic about services with help.

But I will also be looking into the 211 and other places for support. Right now the eplipsy group disband for lack of participation. But there must be other support that I just haven't tapped into. Therapy sounds good. I'd rather do it by phone at this point but maybe as time goes on I will feel better about going out. I feel so weird right now.

Thank you also for the med info. I wasn't sure what was normal side effects or what.

This is so new and strange. I am so glad to have found this site!
Again (((Thank You))),
BBB
 
Welcome to CWE!!!!!!!

On the meds. Each persons side effect is different. It seems it takes my body 3 weeks to a month for my body to adjust to new meds being in me.
 
HI! and as others said before me Welcome. I know that I have found an amazing amount of support here at CWE. Endless has provided some great answers.
I know what its like to be afraid of "the system". I was in and out of foster care through out my life and I have developed quite the fear of the system doing the wrong thing. But they can be of use and if you land out with the right SW they can be wonderfully helpful!
 
Thank You nana and seizing beauty. This has to be the hardest thing I have had to deal with. How do you find the right SW? I am having a hard time not only with the meds but trying to get my Mom and brother to understand how horrible this is; the feeling bad, the fear. I just don't seem to be able to do the steps in order yet. I feel so cruddy that I feel like it won't get better and I hate getting chewed out about not pretending that I really am ok. Right now I am not.

Thank You Everyone. I will keep hanging in there until I can get up and go again.
 
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