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realife
Regular Member


Date Joined Oct 2009
Total Posts : 77
   Posted 10/13/2009 5:08 PM (GMT -7)   
confused  i I am a 40 year old women that was diagnosed in 2004 with psuedoseizures!!! When the doctors told me that my reaction was what's that. They told me it was brung on by stress and that I was making myself have this what our family call attacks not seizures. OK Dr. why would I make myself fall out hit my head, fall in shower, fall outside, and when there over sometimes I can't remember what happens other times I can feel one coming on, and sometimes I remember what happen. They told me to go see a psychiatrist (hope I spelled that right) so I did. Once in here office she had never heard of it, so I took the book that Cleveland Clinic gave me after a week of which felt like torture to me in Ep unit. So once my mental health dr read the small book she said Wow I never heard of this and she put me on 20mg lexapro, 200mg seroquel and 0.05mg of clonzepam that's just what I take now, but I have tried every antidepressant U name I have tried it. I'm scared to drive and do other things that I love to do. Thank goodness for the disability from my job or I don't know what my husband an I would of done. My kids are 18 and 14, but when this start they had know clue what was wrong with there mom, and they still dont. As of Oct 3rd my disability from work ran out, so now everything is on my husband, and a week after that I was denied I second time for disability ssi, so they told me to reappy so that's what I did. If anyone is going through anything like this with these attacks or the medicine that has controlled yours please let me know. I don't know how much more me and my family can take of this mess, when doctors don't take it serious. They are real my muscles tighten up,sometimes after them my legs are so stiff I can't walk for a minute. HELP ANYONE WITH SOME ADVICE!!

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40588
   Posted 10/13/2009 6:23 PM (GMT -7)   
Hi Realife,
 
It sounds like anxiety could cause something like this.  Which is very real, yet, I don't know why it wouldn't be showing up in blood work or something like that.  But I am guessing that it is most likely anxiety related.  I have never heard of it, but I believe it.  Our bodies can do some very strange things.  It is like me with fibromyalgia, many people don't believe in it because it doesn't show up on any tests.  I even had one doctor that said I don't fit the profile.  But I know that I have it.  And so does the doctor that I have now. 
 
I have taken a lot of antidepressants too and sometimes you think it is never going to be better.  But you just have to find the right one or the right mix.  Usually it just takes ruling out a few to find out what will work for you.
 
It takes about three times with disability before you get approved.  Fight it all the way to the end.  They make it hard for you, but keep trying.  Don't give up. 
 
I wish I was more help with your situation, but it is new to me too.  Have you looked it up on the internet?  See what you find.
 
Take care, best wishes
 
Keep posting, and I forgot:  Welcome to the forum!
 
Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2283
   Posted 10/13/2009 8:14 PM (GMT -7)   
RL,
Welcome to Healing Well! I'm glad you found out a diagnosis, but that does sound unsettling that your current psychiatrist had never heard of pseudoseizures. Maybe you could either ask for a referral from the Cleaveland Clinic or try to find a neuropsychiatrist, who might be more familiar with something like that. I wish you the best. Keep posting & let us know how we can support you.

peace,
Frances

Learning2fly
Regular Member


Date Joined Oct 2009
Total Posts : 76
   Posted 10/13/2009 8:43 PM (GMT -7)   

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!!!

 

 
Major depression; Bipolar Disorder; Fibromyalgia; Spinal Stenosis; right arm and leg nerve compression; cataracts; glaucoma; IBS; RLS; hypothyroidism; B12 deficiency ... that's enough or I'll get more depressed.


realife
Regular Member


Date Joined Oct 2009
Total Posts : 77
   Posted 10/14/2009 4:13 AM (GMT -7)   
Thank you all for the information!! learing2Fly yes I had an  EEG at Cleveland Clinic thats who diagnosed me, after that the doctors took nothing serious. Neuropsychiatrist I didn't even know one of those Dr. assisted seems like my psychiatrist would of refered me to one I really have to look into that. Anything you can find out would be helpfull. confused

realife
Regular Member


Date Joined Oct 2009
Total Posts : 77
   Posted 10/14/2009 9:18 AM (GMT -7)   
 It's 12:15 today is not a good day!! Depression has me so down I can barely get up in the morning with my daughter and when she does come home I'm in the same pj. I'm soooo tired of living with depression and these attacks. If only I could be happy again I often look at pictures when I was normal an just sit and cry. Just want my life back!!  
 

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40588
   Posted 10/14/2009 9:44 AM (GMT -7)   
I am sorry that you are so down today. Take it easy, go easy on yourself. don't beat yourself up over it. Kind of go with the flow of things. You will feel better soon. Know that we all care about you.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Learning2fly
Regular Member


Date Joined Oct 2009
Total Posts : 76
   Posted 10/14/2009 2:57 PM (GMT -7)   
Realife, I want my life back too. It's so hard to think that it is possible when you are feeling like this. I have been down so far so many times, that I know I will eventually come out of this. I know you will too. It's a hard thing to go through when you don't have any energy. Sometimes it takes the doctors a few tries to get your medication right. How long have you been on your current meds? It can take some meds up to one month to fully kick in and do their job. If you've been on them longer than one month, call the doctor who prescribed them and tell him or her that they are not working. You may just need an adjustment of the dosage or a whole different set of drugs. It's so hard to have to wait, but don't knoch yourself down over this. It will get better and go away. Just keep telling yourself that. It will get better!
 
Major depression; Bipolar Disorder; Fibromyalgia; Spinal Stenosis; right arm and leg nerve compression; cataracts; glaucoma; IBS; RLS; hypothyroidism; B12 deficiency ... that's enough or I'll get more depressed.


realife
Regular Member


Date Joined Oct 2009
Total Posts : 77
   Posted 10/14/2009 3:25 PM (GMT -7)   
Thanks you Learning2fly!! I just had an appt. today and she took my dose up by 100mg. I have been on this medication long enough it should be working know. An we have tried alot either the side effects are to bad or they just dont work. I thank you again for you incouraging words. Wow U are going through alot yourself, I will pray for U, me and everyone else!!




Psuedoseizures, depression, anxiety

Learning2fly
Regular Member


Date Joined Oct 2009
Total Posts : 76
   Posted 10/15/2009 10:01 AM (GMT -7)   

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!!!!!   smilewinkgrin    I'll be praying for you as well.


VIEW IMAGE
 
Major depression; Bipolar Disorder; Fibromyalgia; Spinal Stenosis; right arm and leg nerve compression; cataracts; glaucoma; IBS; RLS; hypothyroidism; B12 deficiency ... that's enough or I'll get more depressed.


realife
Regular Member


Date Joined Oct 2009
Total Posts : 77
   Posted 10/15/2009 10:22 AM (GMT -7)   

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!!! turn                   attacks or NES, depression, anxiety


Learning2fly
Regular Member


Date Joined Oct 2009
Total Posts : 76
   Posted 10/15/2009 11:28 AM (GMT -7)   

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!


VIEW IMAGE
 
Major depression; Bipolar Disorder; Fibromyalgia; Spinal Stenosis; right arm and leg nerve compression; cataracts; glaucoma; IBS; RLS; hypothyroidism; B12 deficiency ... that's enough or I'll get more depressed.


realife
Regular Member


Date Joined Oct 2009
Total Posts : 77
   Posted 10/16/2009 9:30 AM (GMT -7)   
Today I'm feeling a little better, I had a couple of attacks last night, but we got through them,todayIcan have a good day, but I need to push myself to put clothes on and comb my hair. Who would thing putting clothes on and making yourself look nice would be such a challenge, and the weather in Ohio doesn't make it any better, it so nasty out I look out the windows and I walk through the house and close all the blinds untill my husband walks behind me and opens them back up.



NES(psuedoseizures) depression, anxiety, I
like calling the non-epelectic seizures better
than psueo

THE HAPPY TURTLE
Elite Member


Date Joined Mar 2009
Total Posts : 18757
   Posted 10/16/2009 11:59 AM (GMT -7)   
sorry that i haven't posted real-life, i hope things continue to improve. i have just read the posts on this thread, l2f has given you excellent support-info. good on ya l2f!! keep postive realife, here for you. healing compassion to you. jamie

realife
Regular Member


Date Joined Oct 2009
Total Posts : 77
   Posted 10/23/2009 10:29 AM (GMT -7)   
The last 2 days has been just terrible for me. I'm really in a hole and I just can't seem to climb out know matter what! My husband told me that I have to go back to work because he can't handle all the bills hisself, I would love to go back to work, but I know I can't. I understand his check is the only 1 coming in since my disability stop from work but I'm so depressed I wouldn't be able to function at all. I've been wanted to get on but today is the day I pulled myself up and ate something and got on the site.

I've had attackes all week(seizures) couple of days I had to stay in bed untill my son came up stairs because he didnt hear me yellling for him. I don't know what to do should I try to go back to work, and If I don't will we loose our house, that's the only thing Im concerned about is the house. Cars they can take it I don't care. A Dr at Cleveland Clinic told me once choose your job or your health, if U dont have your health how are u going to work at a job. I think he is right. Please help me out I need alot of feedback, because I'm planning on going back next week if my dr lets me

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40588
   Posted 10/23/2009 1:52 PM (GMT -7)   
I had not worked for seven years due to fibromyalgia and depression. But went back in June. I fine that I do better at work than I do at home because my mind is busy. I am not saying that it works for everybody, but it has worked for me. So far so good.

Hope that this helps some.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


realife
Regular Member


Date Joined Oct 2009
Total Posts : 77
   Posted 10/23/2009 2:52 PM (GMT -7)   
Gettingby thanks for your input, but I'm scared to death of going back to work around all those people and different personalitys. I don't leave my house much at all, and to be thrown back in that type of enviroment would sink me. I know we need the money, and jobs are hard to find so I have know choice. My lawyer did tell us it would mess up my disability that I reapplied for again. I want to work but I dont think I can handle the factory enviroment anymore. Dealing with this is weighing me down, I don't want to eat, I'm crying all day, I dont want to come out of my room. It's killing me. confused
 
                         psuedoseizures(non-eplectic seizures)   
                         depression, anxiety
                        

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40588
   Posted 10/23/2009 3:33 PM (GMT -7)   
If it will mess up your disability, then don't do it. Maybe you can get some help with social services. Have you applied for anything? You might be able to get some food stamps even to help you out until you get disability.

I hope that htis helps some.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


realife
Regular Member


Date Joined Oct 2009
Total Posts : 77
   Posted 10/23/2009 3:36 PM (GMT -7)   
Cant get anything my husband makes to much!! U have to be down right poor to recieve anything, it's a shame it's like that because people who really need it cant get it while others that are able to work, but just don't get everything from food to cash to utility checks.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40588
   Posted 10/23/2009 7:06 PM (GMT -7)   
Yeah, the system kind of sucks. But hopefully that will change. It makes it hard for a lot of people to get by. I got denied for disability, so I had to go to work. And luckily I am able to do it so far. But can't work full time. Only part time. But it helps.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies

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