Do anyone know anything about PNES? or any type of seizure you have in your sleep, where when woken up, you are aware of what is going on and able to speak a few words but are still unable to stop the nasty shaking/jerking process?
The doctor have told me this is does not sound like a seizure but he is unsure what it is.
Any help or advise would be grateful as i am quite worried and the doctor don't seem concerned.
it is not called that anymore. it is called conversion disorder or neurological functional disorder. our son is 15 and started having seizures everyday. between 5/8. he can not attend public school anymore. has to be homeschooled. they have found out a lot more about it. watch the movie UNREST, it is a documentary about a lady who has this and how much it impacts her quality of life. she did it to bring awareness to this disorder. the problem is that the structure of your brain is fine but the way it functions is the problem. they say that for years this is what they called it by as time went by and more studies were done they know that they are not fake as a stigma was put on people for years. read up on epilepsy and the triggers that cause them to have them. its the same way for our triggers except the ones my son has or you have is not from electrical firing impulses ours is from other causes. the study they did do said the blood flow in our brain is decreased . ask you docter for a PET scan. that test will show how the function of your brain is. if you have any questions let me know, we are seasoned veterans and know his triggers on what to avoid so he wont have them that often. anyway texas hugs
No problem, this affects the quality of life. it also impacts your family as a whole. anything i find out i will for sure share. there is a Dr. John Stone in the UK in Edinburgh who is a neurologist and he and a small team has been doing studies on NFD and has helped people. He is the one that is finding out a lot of stuff with this rare disorder. There are only a couple in the states that have worked with him and help people here. One is in Louisville Kentucky and the other in New York. But do your research through Dr. Stone for he is really well educated in this disorder because of his research and studies. Also, please watch the movie UNREST it will really help you see there are others out there who go through the same as us. Let me know if you need anything else and i really hope this helps. it seems like people with NFD , fibermyalgia suffer a lot and are stigmatized when science and research are not funded enough to be able to do more studies. not trying to be discrimitive but a lot of people seem to put more money into cancer , aids , and other studies more. which i just do not understand why light is shone more on others then on others like us also. We suffer also. if you see the documentary UNREST we are the least funded so since they are not funded enough to find out why they have to blame it on psychological reasons when actually they state it is not factual. its more of a assumption. go figure Huh ? years ago they assumed people who had multiple sclerosis it was psychological until the ct scan was invented and now they discovered lesions on the brain. so, hopefully one day they will find out what actually causes ours. going to close for now . You take care of yourself and use your spoons wisely. That's the spoon story for people who have chronic pain and illness. bye for now Laura.
Could it be a side affect of sleep apnea?, i usually woke choking with occasional muscle spasms, the spasms were sporadic and unregular and other times my wife could talk to me although i was not aware of answering her back as i was in a state of sleep where my consciousness was still active as i never went into a rem sleep. Also check any medication you may take for side effects, i hope this helps god bless.
Thank you all so much for your help, i will look into it a lot more. You have been great thanks again x
Sleep paralysis I have it scary. It's when your muscles don't relax after REM sleep