I have a lot of concerns about my migraines and I believe my situation is a little unique. I've been having migraines with aura since I was about 12 years old (I'm now a 24 year old woman). The first one I had was triggered by a bad fall off a horse. An hour or so later I had visual disturbances, numbness on one side of my face/tongue/hands which then switched to the other side. I eventually felt very nauseous and threw up and then got a really bad headache. A year after that, I fell in gym class and had the same series of symptoms, but it was more serious because I couldn't verbalize properly (I had to call my mom to come pick me up but I couldn't tell her what was wrong). Another year later, there seemed to be no trigger (I was travelling by car and it was hot but that was all) but the same thing happened.
It would happen about once a year until the past few years when I get migraines much more frequently. I've talked to my regular doctors and OB's about this but they say it is probably hormonal and don't offer much help. I even went to an ER one day and had a CT scan while I was having a migraine but they just diagnosed it as a migraine with aura and I had to pay $2500 for the whole ordeal so I was pretty disappointed.
I hate getting these migraines; I feel like I just want to die when I get them - it's the worst feeling ever. I'm not sure what my treatment should be because I don't know what the cause is. The way they were first triggered I felt there might be somethign going on in my brain due to that fall. But later on they could be triggered by anything - excitement, hormones, exertion, chemicals, and sometimes I really have no idea what the trigger was. My main theories about my migraines are these:
Hormones: I started getting migraines around the time of puberty, and also I have had a migraine while in labor and immediately after having a miscarriage.
Heart defect: I have ventricular septal defect (very minor, not enough to suggest repair or medication or any lifestyle changes) diagnosed around the same time I started getting migraines (but I was most likely born with it). I have done some research and found that some other people with heart defects have more migraines because clots can form in the hole in the heart and move to the brain.
The second part of my question is I'm wondering if it's really clear that these are simply migraines and not some form of stroke. Each migraine varies in how severe it is, but the worst ones leave me unable to verbalize what I want to say, and unable to read or write. Sometimes I'd have a twitching or droopy eyelid for days afterwards. I know it is impossible to really diagnose my personal situation without seeing me, but all of the doctors I've brought this up to have not seemed concerned at all. Thank you very much for any insight you might have on this.
, but, if I could mention that sometimes, even the best neurologists who say they are "headache specialists" may not be "true" Migraine/headache specialists. Neurologists treat so many different conditions like MS, epilepsy, stroke and Parkinson's, it is difficult for them to be experts in one area. Whereas a Migraine specialists is just that, an expert in one area, Migraines and headaches. These Migraine specialists are certified in headache medicine, attend scientific conferences in headache medicine and so on.....
Nancy and Lindsay, My 16 yo old son fainted in 8th grade and then started getting migraines after physical exercise after that. Recently he has increased his exercise regime and got more migraines, plus some new symptoms - lightheadedness, tunnel vision, blurred vision, eyes crossing, orthostatic hypotension and exercise-induced near syncope. He was diagnosed with a heart murmur as an infant, but we were told it was innocent and that it closed before he was one. He has had an MRI, carotid ultrasound, echocardiogram, chest x-ray, and a treadmill cardiac stress test (where his bp went to 240/60 and a heart rate of 200) but the docs say all looks normal. He has had these symptoms for three months.
We have been to see a migraine specialist in a large teaching hospital and she feels his current symptoms are not migraine-related and we should follow up with cardiology. My personal opinion is that his current condition is the result of a "perfect storm" of three things coming together - a congenital heart defect that was causing the exercise intolerance mistakenly diagnosed as migraines, an increase in exercise regime, and taking a new migraine drug - Axert, which can cause cardiac problems. He took 4 doses of this drug over a 40 day period.
He was also taking Doxycycline during this time for acne. Doxycylcine is a sustrate of a type of anitbiotic/antifungal that is contraindicated with Axert. The only problem with this is that no one will listen to me. His pediatrician believes the cardiologist who says the tests show nothing is wrong so it must be in his head and has him on prozac over my objections. I have found a new pediatric cardiologist and am hoping she can figure this out. Any ideas or thoughts?