My sister is experiencing episodes of sudden extreme sharp pain starting in the back of the neck and quickly shooting to the rest of the head, and within 5-10 minutes will lose all consciousness, completely unresponsive for several hours. During these several hours, a lot of twitching takes place mostly with the hands and feet but also the rest of the body as well. After 2-3 hours of this, she then slowly starts to wake up (takes about 20 minutes) and then she is back to normal. She has had the following tests done:.

MRI - Normal
CT Scan - Normal
CT Scan with contrast - Normal
Spinal Tap - Normal
EKG - Normal
EEG (twice) - Normal
Video EEG for 24 hours during which an episode occured - Normal - no signs of epilepsy or seizures
Ultra Sound - Normal
X-Rays - Normal
Blood Tests - Normal
Blood Clots - Normal
EMG - Slight inflammation of the peripheral nerve in both palms

No diagnosis has been given to this date. It has been going on for 8 weeks with no answers. Episodes occur at least every other day, and at times back to back days. No trigger can be identified. She has extreme sharp pain in both arms and both upper portions of her legs. She gets tired really quick. Lack of energy and extreme fatigue.
We are extremely frustrated as we have not been able to get any answers and been knocking on doors of at least over 10 neurologists, and still no diagnosis. Unable to stop the episodes. Has anyone heard of such a thing or at least can lead us into the right direction. We keep hitting road blocks and confused on which other direction to go. Please HELP !!!!

Hi vatche,

I'm sorry to hear that your sister is going through such a hard time. My advice to you is to get your sister to an Epileptologist (Dr. specializing in epilepsy) it sounds like she may be having seizures (sz.) but I have never heard of a sz. that causes pain. You should also have your sister have a wada test, Pet scan and Spect scan this will show a lot of what's going on in the brain and what's causing it. Sometimes the problem is so deep in the brain that none of the tests will show any problems this is what happened to me before I had brain surgery done my Dr. thought I only had a problem on the right temporal lobe but they found lesions on the left temporal lobe and the frontal lobe also that not a single test showed.
Tell your sister to start taking vitamin B12 1000 mcg. once a day for adults and this may help her because it calms the nerves down. It has reduced my sz. a lot.
You can find an Epileptologist at a big hospital or at a University Hospital just have your sisters family Dr. refer her to see one so she can get in sooner.
I wish you and your sister the best of luck and May God Bless the Both of You!

Sue

I agree with the other post on what kind of doctor to find. A good teaching hospital is good too. Mayo clinic does wonders with a difficult DX. They will get to the bottom of what is occurring. I wish your sister all the best. ginnie

thank you "ginnie" & "Porkette", we have seen a team of 6 Neurologists specializing in Epilepsy at UCLA (and a team of 5 more neurologists at another hospital and they all agreed that she does not have seizures, that the brain wave tests (EEG) did not show any signs of epilepsy, and they are telling us that everything is caused by stress. I understand that stress plays a big role, but I don't buy it. I truly believe there is something being missed and that something sure can be seizures, but the onset is what throws me off. It happens the same way every time starting with extreme pain in the head, almost like the pain is too much and the body is shutting down. In the meantime, our lives have completely changed as she is unable to drive nor be by herself, since we don't know when the episodes will occur. We have not had the wada test, Pet scan nor Spect scan done yet and will look into getting those done too. Every other doctor we have seen at UCLA just sticks to the diagnosis of stress that's written in the reports and they won't budge. So as much as I am a fan of UCLA (experience with my mom many years ago fighting leukemia) I think that we have exhausted this hospital and now directing our attention to Cedars Sinai, and if still no answers, then head up to northern California, I heard Stanford has a great program there too.

Hi Vatche,

Stress and lack of sleep are 2 of the main things that can cause a sz. for a person. Stress effects the hormones which in turn can sometimes trigger a sz. for a person and lack of sleep can effect the brain making a person feel tired and then the person can have a sz. Often when a person has a sleep disorder like sleep apnea it can cause epilepsy. The only other thing I can think of especially with the head pain you have mentioned is a possibility of a brain tumor and that is known to trigger sz. for people. I have a friend who had a tumor and he had a lot of sz. before his surgery. One more thing is if you sister uses a cell phone a lot it has been proven that some people are cell phone sensitive and if they are around a lot of people using cell phones at the same time it will trigger a sz. do to the frequency the cell phone is using. I have this problem and my Dr. did an e.e.g. on me and I didn't realize it but in the room next to me people were using their cell phones on purpose and each time they did I would have a sz. If your sister has played a lot of video games with bright flashing lights or a lot of bright colors this is another thing that can sometimes cause sz. for a person and that's because a person may be photosensitive meaning that certain colors are triggering sz. for the person. I hope I'm wrong about the tumor and I wish you and your sister only the best of luck. May God Bless the Both of You!
Sue