I was recentley diagnosed with sudo seizures, after 6 days in an emu unit. I have a venous angioma and a slightly shrunken ventrical, the nuerologist has decided that these are non-epileptic seizures. What can I do? I the episodes I have are serious, I have full blown convulsions, unconsious, and its hard to beleive can someone please tell me that i am not crazy. It is embarasing and confusing.
I too was dx with the same siezure disorder. I have been through the ringer trying to find the cause of my seizure episodes, but all tests came back normal.
Firstly you are NOT crazy. Pseudoseizures are actually your body's way of getting rid of pent up stress that you have been unable to deal with in a more conventional or functional way. One of the things they asked me in a rather blunt way was if I had been abused physically or sexually in my life. I have never had either happen, but that does not mean that this still isn't of psychological origin. I didn't want to rule out the possibility that what they were telling me might be true. So I started therapy and although it has helped me dealing with the fall out of what I am going through, it hasn't made that much of a difference yet. One of the latest techniques being used for these type of seizures is called EMDR (eye movement desensitization reprocessing) It is a distraction technique that allows you mind to relax and flow so memories and thoughts related to what you might be repressing, or stress that has not been dealt with. I have only just started it so I cant really say how well it works yet. There is not much else being done for my seizures. Im off all meds and I just have seizures. Everyday I have these staring spells and they roll into tonic/clonic type seizures. I sit and shake infront of my kids and husband. My 10 year old son sits and tells me its ok. They finally subside and I am out of it for awhile then back to normal.
My daughter has unexplained siezures as well, the dr thinks it is because she hit puberty, but today she had field day and was stressed and had one about an hour ago.
I have posted a question thinking it might be a nerve...stress nerve pinch? could possibly be!!
I know it's hard for me to watch my daughter and I am touched to know your 10 year old is being so brave, what a strong little boy.
My daughter is on medication but still has them even though her dr says she shouldn't have any on meds...I have no insurance I pay everything cash right then and there, so I hope for my childs sake I am not getting the run around.
April...you are so not crazy...God doesn't give you anything you can not handle, I say that and I am not in the least bit religous, you are very brave and hope you don't let it get you down...my daughter is an honor role student, loves to play sports has ALOT of friends and lives a normal life.
I can't give you any advice because I have yet to get any answers...but keep your head up.
If you wanna chat sometime here's my email address
Oh I did do some reading that seizures can happen at any age and from all sorts of different reasons...sugar levels, sleep deprived, lack of eating, computer, tv, stress, lack of oxygen, long road trips...I can go on and on...did you get a package booklet from your neurologist?
Any way I hope you have a great weekend and KIT...meeee
Thank you for your words...I have recently been doing pretty well. I have learned to calm myself down, like when my ex husband calls lol. No seriously, If we cant cure these seizures, telling myself I HAVE CONTROL, seems to help. I still have them just not as many. And i understand, Kate about your brave little man,,, my 7 year old son took control, put a pillow under my head, calmed down my 6 adn 3 year old, and called 911. I was paralized for 2 hours. And what blows my mind is if these are not real seizures then why does there COCTAIL of meds not help? I am 5'2 120 lbs. and the highest does had no effect. My body kept going even when my mind gave up. It does make sense to me because I was abused severely, and lost both parents during,. and after 3 boys got a divorce and got on my feet all over again, yes yall can do it. I have faith in yall.
My daughter was dignosed when she was 6mths old with seizures however they only came when she had a fever. then at 6mths she was dignosed with meningitis after this on meds upgrading the seizures to Epilepsy . From 6 months to 13 she was being treated for Epilepsy she grew out of it . Now that the Sude seizures is what they are treater her for now ( makes me think this is what is was all along ) she also suffers from select mutism ( meaning she cannot exspress her self when needed verbally ) she also has a cognitve delay due to the previous seizures ( so ) what we did was went to Rush University for 2 days at the epilepsy center they did a 2 days sleep study with cameras and came to the cunclusion she is consious when shes having the seizures but under extrem stress . She has never been abused sexually or physically . Stress was the trigger shes only 19 . But she's strong ( we are now going to UIC university of chicago ) they specialize in this type of seizures so what your going to want to do is see a Nero psychiatrist . ( we have also started therapy ) we are only taking it day by day , We are also checking her for Fibromyalgia this can trigger this as well or be the calprate or exstrem pain ( she was getting 5 sessions of phisical therepay a week for musclu pain ) seeing a Rheumatologist on Monday will keep you updated. Just a couple addtional avenues to research or touch base on
i first started having these sudo seizurs nov 2011 i was in the hosp. for two weeks i dont remember a whole lot sents then i have had some here & there but the help from emts & dr at the hospital dont do anythin more than less most doctors dont believe in them & they will yell at me when im having one i did have one dr did tell me that sudo seizures r real & also thinks i have tonic-clonic seizures as well. between all the med i found out a combo that will make them less then stop but getting a dr that doesnt believe in them doesnt help i am 31 now & ive lost custidy of my son until they can get them figure out & under control but ive now lost my health inc & i dont qulify for any help im at the begaing of this & its rollor coster .... does anyone have any advice i would appirceate it thank u & good luck to everyone dealing with this too!
my daughter 18 yrs old started having sudo seizures in Feb 2012. some days she can have 5 0r 6 other days 15 or 20. People don't understand and think it's all fake. She is so scared. when she is having one she can hear everything we say, she signs and tell me Jesus love her over and over while she having one her eyes are rolled back in her head and she makes a strange sound. she can even write on paper and tells me to help her while she is having theses. I just dont understand, the other nite she had one in the bath tube and i was on the phone in another room, I went to check on her and the only thing out of the water was her mouth and nose and she was still sliding down, she could have died. we need help to find the right Dr to help us.
my daughter got diagnose when she was nine she is 12 years old now .
she has epileptic seizures and non epileptic , doctors have her epileptic under control but is now the non epileptic seizures are the one that we are having to deal with on an everyday basis . she is not able to attend school witch makes her so depressed. its also hard for her to understand why she has them and blames me for her condition .
Its nice to be able to share and know that there is people out there that are dealing with something similar and its able to understand from parents perspective.
I love my daughter with all my heart and just want to help her overcome this.
Although you are posting to an old thread, I can help you, but in the future you will probably get more response by opening a new thread. :-)
I'm sorry to hear about the difficulties you and your daughter are having. Have you considered joining a support group for children with seizures? You can research online for one locally in your area. Do you know why she is blaming you for her problems? Is she seeing someone for her depression? If not, she should or discuss this with her doctor privately. Is she being schooled at home?
You, as a caregiver, also need support as this takes a toll on you. So I recommend a support group for you as well. You may be able to find one online but being with others in a group who have the same things in common makes a big difference.
If you get no where, ask your doctor for a referral to a social worker or case worker to assist you with you/your daughter's issues.
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