Hi, I am new to this community and site. I was diagnosed today with "complex atypical migraines with aura". I am confused and trying to figure out exactly what this means. I was in a car accident 1 1/2 years ago and have suffered from mild to severe optical and cervical headaches and migraines since. Almost 2 months ago, something new occured and I did not have a migraine at the time. I fainted and had seizure activity. I had bad jaw pain and then progressively a migraine came on for the next 24 hours. My EEG came back normal, but my MRI came back abnormal. The neurologist treating me thought this was not a true seizure and that it was not going to happen again. He didn't really go through the results of my MRI thoroughly with me. My records show a linear enhancement in my right frontal lobe which he did say was most likely an angioma-not to worry about- and showed signal alteration in my parenchyma. It notes related to inschemic leukoenceophalapathy or demyelinating process. He only summarized this by saying there was damage to my myelina protecting?? I was not put on anything for the first episode and was told it was fainting with seizure activity.I had a second very similar episode last week. I did not faint this time, but was not coherent. I was standing and lost vision and hearing again and my upper body was convulsing. It lasted probably 1-2 minutes, but I was not able to speak or see or control anything until I "woke up". My body was the last thing to "snap out of it" but did within probably a second after I "came to". My symptoms this time afterwards were extreme nausea and then the best way I can describe it is that I felt "drugged" for about two days. I was exhausted and my speech was wierd, slow and I had a lot of trouble articulating and getting words out. Difficulty having a conversation. About two days later, that got a lot better. I did get a headache a couple of hours later after this episode, but it was not severe like my first episode.I haven't heard of the dx he gave me "complicated, atypical migraines with aura" before. I am concerned that I am actually having seizures. He did not run anymore tests today. My questions are as follows:1. are the symptoms and episodes I noted above in line with symptoms of this condition?2. were these episodes seizures or what else could they be-causing me to convulse and not be "present" or to lose conciousness?3. what additional questions should I be asking to better understand?4. do you think I need a second opinion?5. I was put on Topimax that I am to begin tonight and increase in the next two weeks. Is this typical medication for this diagnosis?6. is this a disease, a disorder or a syndrome? Do people work and function with this?Sorry for the incredibly long post. I am just extremely confused and looking for any feedback or knowledge on this subject and if anyone's experienced this before, I would greatly appreciate the responses.Thanks.... Chelle
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Q: diagnosed today with "Complicated Atypical Migraines with Aura"-but I am having seizure activity...
Hi Chelle,
*'""*:•Welcome to Health Central's Migraine Community!•-*'""*
Please don't worry about your posts being long, that's what we are hear for. I will try to answer as many of your questions as I can, how does that sound?
First - YES to a second opinion. And here's why - first if my doctor told me all that about my MRI without any further information I would be as confused as you are.
Second - one of the most important things is to get an accurate diagnosis, which you did not recieve. This will help simplify matters and make it easier for you to get information and treatment. To reach a diagnosis, doctors usually go by the gold standard for diagnosis, the International Headache Society's International Classification of Headache Disorders, 2nd Edition (ICHD-II). Although people often ask what "complex" or " complex atypical" Migraines are, there's no such diagnoses under ICHD-II. We do see it used, but doctors use it differently, so it really doesn't tell anyone what type of Migraine you actually have. You can read more about this What Is a Complex or Complicated Migraine? and The Type of Migraine Does Matter.
Third - Being told that you would not have seizure activity again sounds a bit off to me. Does the doctor have a crystal ball? How does he know for sure you won't have a seizure again, and he was wrong because you did have another one. It is definitely time for a second opinion.
So here are the answers to your questions: No, the symptoms you describe are not "typical" Migraine with aura symptoms. As much as I'd love to be able to answer your question regarding what exactly your "episodes" were, the only person who can safely do that is a doctor who can review your and your family's medical history, discuss your symptoms with you, and conduct a complete examination. Nobody can diagnose via the Internet, it just isn't safe. Yes, again to a second opinion. Topamax is used for Migraine prevention and is an anticonvulsant. You can find dosing and other important information on this page: Topamax Profile.
Something important here, if your doctor isn't able to help you, it may well be time to consult a Migraine and headache specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. You might want to think about it like this: neurologists may be fine doctors, but have a hard time being experts in one area. This is because they treat so many conditions like MS, epilepsy and stroke. A Migraine specialist is just that, an expert who treats one condition - ours - Migraines and headache disorders. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.
I understand how you feel, I really do. It is awful to have so many questions and not now where to turn. But we have the place! If you'd like to talk with other folks who understand how difiicult life is with Migraine and headache disorders, come on over to our discussion forum. You'll need to register again once there because it's a separate membership database, but you can use the same member name, email address, and password that you used here. You can find our forum athttp://forums.healthcentral.com/discussion/migraine/forums.
I hope this helps some, let me know, ok?
Nancy
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