Recently my daughter, age 22, has been having Grand Mall seizures. Epilepsy has run every other generation in my family, so far ending with my sister. My question is...How does the doctor come to think it is NCS? instead of Epilepsy. Is it due to her age? My sister was diagnosed at age 14. What kinds of tests should we insist on running to get an accurate diagnosis so that she can get some treatment? If it is NCS, is it dangerous, I mean a dangerous heart condition? My brother has a heart disease, that was diagnosed when he was 13. I am not sure of the name of it as I was very yound then. We just want to find out for sure what this is and can we treat it. Any information for us as far as tests we could insist on her having? She has been hurt very badly while having a seizure and we are worried about her when she is alone. We are desparate to find out the cause of these. Thank you VERY MUCH for any information sent to me regarding this.
Based on the information you have provided it sounds like your daughter collapses and then has a convulsion. An EEG test (brain wave test) is used to document abnormal brain activity or capture seizures. Depending on how often the spells are occurring a prolonged continuous EEG recording in a hospital may be useful. To document syncope a tilt table is commonly performed. During this test the patient lies on a table which slowly moves into the upright position. During this time the patient's blood pressure and heart rate are monitored. For many of our patients we also do EEG during a tilt table to document the brain activity. These would be the tests used to differentiate these possibilities. If you are in the area our Epilepsy Center at the Cleveland Clinic Foundation is one of the best in the nation, and we perform consults similar to this regularly. Good luck.
What a hassle this can be!!! I was diag by TTT in '99 and by a very positive reaction to therapy (beta blocker) as having neurocardiogenic syncope. In early 2001 I had an episode that for some reason made me think seizure. I went to the ER and left out the detail of the hallucination, because I was afraid and was told it was the NCS (I am sure because I was already diag with it, too). Anyway, my cardio and a couple other cardios disagreed and felt seizure. So, on to a neuro and then an epileptologist. Video EEG showed some sharps and spikes, and slowing (the slowing showed on other EEG's) but no real seizure. Diagnosis epilepsy. More then a handful of drs. agreed I have both, but 1 or 2 said just cardiac and another said mostly cardiac so, now I have an implanted heart monitor in my chest (Reveal ILR). It's been 3 yrs of back and forth! I was taken off AED's (seizure meds) in May after having a normal VEEG and told maybe I never had epilepsy! So far the events aren't showing up as cardiac, which is what my cardio felt all along, but I am left hanging in the balance for a bit longer. I hope you are more successful at getting solid answers right off!!!
This run around is exactly what my daughter does not want to go through. She has no Ora before a seizure. She does not faint first, she just immediatly begins convulsing violently. I think she has a bit of denial, because she is afraid of being sent from one doctor to the next with test after test. I'm sorry you have been through so much, to get the help you need. We really do have to be our own advocate, don't we? The Neuro wants her to go through a four hour EEG, but she has drug her feet on getting it done. I am so frightened for her. She told me she will get it done if she has another seizure, because she thinks it could be due to stress. I laughed and said, "Honey, if stress can cause a Grand Mall seizure, I would be in a Coma!" That is why I think she is in denial. I think she may be afraid to find out what is wrong, also. So....They are STILL not sure what your diagnosis is? That HAS to be VERY frustrating for you and your family.
Stress can cause a seizure if you have epilepsy, though. Also, some people only ever have one seizure. I understand where your daughter is coming from and wish I had decided to go that route, too, but don't tell her I said so. I do have the NCS diagnosis and had rec'd a 2nd opinion at an academic center. They haven't removed the epilepsy diagnosis, but I am off meds. I have to continued to be monitored for it so, early next year I get another EEG (just a reg. one this time). It's so confusing, because you can have a normal EEG even with epilepsy and some will say with some sharps and spikes you might still be normal. Sheesh, how do they decide? The heart monitor should help them, too.
Here is a good forum for people with epilepsy. You can just read if you like or feel free to ask questions.
Yes. My sister had MANY EEG's and other tests and every one of them was normal. The doctors tried to ween her off her meds last year since she had been seizure free for years and they say sometimes after menopause you, in a sence, out grow the seizures.......But...she had another siezure after droppping down the dosage of meds, so I guess she will have to remain on them. My daughter wore a heart monitor, but had to push a button to activate it if she felt a seizure coming on. She does not feel them coming on, so this test was of no value. I do want my daughter to have the 4 hour EEG though. I hope you are able to get things straightened out soon. Just knowing a sure diagnosis and prognosis/treatment, is a relief itself. Good luck to you!
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