My 16 year old daughter had an episode while hanging out with friends on May 12th (had period spotting only). A staring spell, drooling, disorientation and staggering. The night before she had a headache with the pain going through the right eye and going to the back of the head (right side only). It hurt so bad she was pounding her head on the coffee table because "it felt better for a second". These headaches have been becoming more frequent. After the episode she said it hurt worse.
She has not been able to go to school for a couple of months ( she wants to go back to school because she misses her friends). On May 3rd and 4th she tried to go back and she made it the first day and didn't feel well when she got home. Teeth chattering like she is freezing but it was not cold in the house. The next morning she didn't feel well but went to school anyway. Had to have help up the stairs and help to the nurses office. The nurse said she was chattering her teeth and staggering. She sometimes has to use a wheelchair because she feels weak.
On March 1st she was hospitalized for anemia and dehydration (hemoglobin 9). They gave her iron pills and IV fluids. She was having hypotension when she tried to stand and walk. She was taking Paxil for anxiety (a lot of deaths in the family) and Seasonique birth control (to control heavy bleeding and cramping). She started the Paxil in November and the Seasonique in February. She has also been feeling nauseated. Couldn't walk very far had to get her a wheelchair. MRI and CT scans normal.
We then tappered her off of the Paxil and changed birth control pills to Estrostep. Her blood pressure stablized, iron good, appetite back. Energy level better. Still having severe headaches. Also, having pain in arm bad enough to where she can't move it. She describes it as nerve pain.
After the episode on May 12th (Tues.) (heavy bleeding and cramping) we went to the cardiologist on May 18th. She called the pediatrician and said she needed a nuerologist asap. She was pale and out of breath walking from the car to the office. He admitted her to hospital. EEG and blood work normal. They didn't do new scans. They just looked at the ones done in March. Had a seizure May 14th (Weds) in the evening. We had to change rooms and she was turning pale and out of breath and nauseated. She laid down and felt a little better. She then walked down the hall got really nauseated again and told me to get the nurse. When I came back in she was shaking and stiff, chattering teeth and staring at ceiling. They didn't do another EEG after this. They are saying it is her anxiety and gave her Zoloft. Now taking Zoloft and Estrostep.
I am going to another city for a second opinion because I don't believe this all due to anxiety. I know she has anxiety because this is happening and she can't do things she used to do (she was a gymnast). My first cousin has been diagnosed with epilepsy (abnormal EEG) and has the same symptoms as my daughter. Is there any other bloodwork or testing they can do besides the normal CBC, sed rate etc.? This has been going on for too long and I am worried. Drug tests are negitive.
Interestingly enough, my family has a history of seizures, including my son who has them only when he sleeps. While I don't have seizures I do have Fibromyalgia and with that in mind, so many of the symptoms sound like Fibromyalgia (or even Lupus or Lyme disease) and there are women in my support group who also have seizure activity and are having problems with their neurologist in finding the cause. Sometimes the sed rate testing needs to be done a few times to catch a diagnosis of Lupus, RA, etc...but I'm not a physician and can't give exact answers.
I'm not sure how this could be related or why, but I found it interesting that she has all the same symptoms that someone with an auto-immune disease would have.
i have had the exact same issue.
i was diagnosed with ttp (thrombotic thrombocytopenic purpura) in mid march. this is an auto-immune disorder that i will live with for the rest of my life. since then i have had seizures daily. not just one, but many. sometimes up to 5 in a min.
i was transferred to cleveland clinic in hopes of finding out what was causing my jerks and seizures. after a 48 hour EEG with a video recording and an MRI they found nothing. the psychologist team told me that i had conversion disorder. which essentially is my bodies way of letting stress out of my body. so i went home but my seizures didnt stop despite my anti-anxiety medication and a stress-free home.
because my seizures have not stopped i have a difficult time believing that it i have conversion disorder when i find myself with a low amount of stress and anxiety.
i understand what your daughter is going through. i was forced to drop out of college half way through my first semester at a university, i can no longer drive due to my episodes, and i have constant back pain due to muscle tension from the seizures.
i unfortunately am waiting to get into see another neurologist in hopes of getting another opinion and maybe an answer. but i cant get an appointment for another month.
as far as blood work goes, i dont know if there is a magic answer. i did make an appointment with my primary doctor and she thought it could be neuromuscular, but unfortunately only a neurologist can run the tests to look further into that.
i understand your worries and your frustration. i wish you and your daughter luck and hope that you find answers soon.
I am 29 and experiencing the same symptoms and the doctors are told me the same thing when I was her age. nothing helps and its getting worse I get older, more frequent. My ct scans are clear. I have never been sent to a neurologist because they said it was stress to go to a psychiatrist. Even if I tried to tell them it wasn't stress. I used to able to fight through the symptoms, like still walking slowly down the hallway until I can sit down. I blackout on roller coasters. I cant handle the heat or bright lights. During these episodes I have a horrible headache at the back of my head and on either the right or left side. It takes a lot of effort to move afterwards and if I try to move I will go down again. Bp is normal but my pulse rate is high 132. Its all different and hard to explain how it feels to go through it.
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