I've never heard of pseudoseizures either. Have they done an EEG on you? That's the test where they put all the pads all over your head and have a machine running a printout. It's kind of like the same one they do for your heart, but this one is for specific brain activity. Keep pushing with docs (neurologists, psychiatrists and neuropsychiatrists) until you get the answers you need and deserve.
Disability is hard to get. Everyone gets shot down the first time through. Do you have a local congressman or senator's office near you or at least have their address? Go for the ones on the federal level. Keep writing to them until you get some sort of response. With some elections just around the corner, this is a good time to get busy trying that route. Call them and hound them consistently. It takes a lot of work and energy to get your benefits, especially if it's something they aren't familiar with. I had to dig deeper into myself than I thought I possibly could to get it.
You have to make sure all your docs are on board for your disability application too. Tell them you are going to apply and gauge their response. If they say they don't think it's necessary, don't put them on your list. If you get denied again when you reapply, get yourself a good attorney who specializes in that area. Most of them won't charge anything unless they win. That will make them work all the harder for you.
I have a friend who is a psychiatrist and I rarely take advantage of that fact. I'm going to see what he knows about these pseudoseizures. It may take a few days, since he lives in Denmark now, but I will try to get some answers for you! Good luck!!!
Thanks Realife! I finally have some information for you. There's another name for pseudoseizures which I would have recognized. It's also called Psychogenic non-epileptic Seizures (PNES). I heard from my friend and here's what's going on with you! Your attacks are not seizures. There is a difference in the way an epileptic seizure progresses that is different from the pattern you have with attacks. I'm not going to go into all the clinical stuff, but the difference is remarkable. PNES are brought on by stress or some memory from childhood of abuse that is trying to come through, or some psychiatric problem like anxiety or depression. You do NOT make yourself have these attacks anymore than someone purposely trips and falls. It just happens as a result of built up stress, etc.
The usual treatment is antidepressants and antianxiety medications, which your doctor has put you on. Your doc has you on the right path. It may take many changes of meds to find out what combination works for you. I've been through most antidepressants until I finally found one that is helping a bit. I may need another one added, a dose increase, or something else, but I know I will eventually get there. It takes a lot of patience, and that's hard to have when you feel like crap every day!! Your doc is taking you serioously or she would never have put you on medication to start with. But if you feel she is not, then find one who will!!! It might be helpful to take your husband with you to one appointment and let him describe exactly what occurs when your attacks occur.
You are under a tremendous amount of stress right now, not working, getting denied disability, being afraid to drive, and on it goes. Stressors like that are really taking their toll on you. You need to find a way to release your stress. This board is a great place to start. Do you keep journals? If not, you might want to try that. Or even just write down whatever has you upset at the moment, then tear up the piece of paper and throw it away. It sounds stupid, but it works for some of us. Exercise will make you feel better too. Walking may not be in your best interest right now if you are still having these attacks. Try some dancing by yourself to some upbeat music. If you are very angry about something, get an old board, some nails and a hammer and sit at a table and pound the daylights out of those nails. Anything physical like that will help diminish your stress and you will find the attacks happening less often.
When you have an attack, write down the date, time and what happened right before it. Also write down who was there. Have them write down what they observed; like were your eyes open or closed, were your movements jerky, did you have any injury from it, etc. Take that to the docs with you every visit. I'm hoping that the medication and a few of the ways to de-stress yourself work for you and that you can come on here soon and say "I feel great and I haven't had an attack in 6 months!" In the mean time, just keep telling yourself, it will get better! Keep your hope alive!!!!! I'll be praying for you as well.
Learining2fly thank you thank you so much, just with that imformation u have brighten my day!!! Non-epeletic wow I like that name better psuedoseizures!!! Im going to google that, my doctor really cares im crying so hard. The journal, and having people write down the dates and times I have them in 4 years our family has never thought of this, thank you again we can even video tape them, and have that as evidence. Yes I am under stress when I read what U typed I am, I just need to find away other than my attacks to let it out. Excercise I used to go to gym but the attacks stopped that to, so I will dance in my home and have my family dance with me. I wish I could read a book I love reading but my mind is always wondering to another land or what's going to happen since my income has stopped. I have 1 question for U should I try to go work at another job untill my job allows me to come back, I'm so scared that my husband will become stressed.
Everything is on him an he holds everything in just so I can think everything is ok when I know it's not. I want him to be honest, but he doesn't want be to freak out.
My daughter is used to living a certain way an things are changing now with money and my 14 yr old comes up to me and ask mom is everything ok the our income, and I say O yes hon, should I tell her what is happening. Feeling better today!!! attacks or NES, depression, anxiety
I am so happy I could be of some help to you!! One thing I have found out is that keeping everyone in your family informed of your financial status will lessen your stress instead of making it worse. You worry about your financial status. Get your husband to talk openly with you about it. It might not be as bad as you think. If it is bad, just hold on, better days are ahead. Talk to your kids too. They feel more secure when they understand why things have changed and that they will get better.
You may also be eligible for some assistance from your state. Even if it is food stamps or some medical help, it is worth the time to apply. Have your husband come with you. If your state is anything like Pennsylvania, the forms are long and hard to fill in when you are so easily distracted. Do not be ashamed of asking for help! That is what you've worked for and paid into your whole life! It will only be temporary.
As far as applying for another job; it would depend on whether you are having attacks still or not. Starting a new job is a highly stressful thing to do. It's right up there with marriage and divorce!
Videotaping is a wonderful idea!! Sometimes it's hard to get the beginning of an attack, so you will still have to write that down.
I like the sound of PNES better than psuedoseizures too! Keep looking up and ahead!