Migraines with aura or simple partial seizures?
I have had headaches on and off since I was in 3rd grade. My mother had always had headaches so I never thought anything of them. I never had migraine like symptoms and as far back as I can remember, I only ever had 2 bad enough to put me in a dark room. My junior year in college I was diagnosed with tension headaches and given Fiorocet with helped treat the headaches when needed but gave me rebound headaches so I stopped taking it.
In August (I'm now 3 years out of undergrad) I started having blank spells where I would be fully aware of my surroundings by unable to process sounds, like if someone was talking to me or if the tv was on, or speak. It was like I was in the matrix, everything would be in slow motion and I was standing off to the side just watching. I ought they were simple partial seizures. These would occur with or without a headache following. It was never consistent. I went to my doctor in November after I went a full month of no headache free days and a large cluster of space outs. I was diagnosised with atypical migraines and prescribed Topamax 25mg 2x a day starting with 25mg for the 1st week then titrated up to the full dosage of 50mg total split throughout the day. My doctor is hoping that the Topamax will stop the space outs as it is an anti-seizure medication and a migraine medication so it will treat the headaches and the space outs (if the space outs are migraine related or simple partial seizures)
After 8 weeks at this dosage, It was increased to 50 mg BID, titrating up again. My space outs were much less severe but my headaches were still fairly frequent. I no longer had them every day but still 4-5 times a week.
So as of right now, I am one month into my new dosage of Topamax, and still having headaches 4-5 times a week. I haven't been able to identify any specific triggers yet but I have noticed that my migraines are much more severe the week before my period. I also have some crazy symptoms before and during my migraines like blurry vision a few hours before a migraine, nausea, photophobia, vision tracking issues, fatigue, etc. My Topamax pretty much kills my appetite so I don't eat much during the day so that may account for the fatigue.
I'm wondering if anyone else has had similar issues and what their diagnosis has been. I am still on my journey to a true diagnosis but I am curious at this point.
Thanks
Lauren
Hi Lauren,
Thank you for your question. Migraine can be complicated and ever changing for some of us, which may make it hard to treat.
Getting a new diagnosis is difficult, but once we have an accurate one, we can learn about our migraine/headache disorder and get the correct information and treatment for it. Is there any reason you aren't comfortable with your diagnosis? If you aren't convinced, you may want to seek out the expertise of a "true" migraine/headache disorder expert. These doctors are board certified in headache medicine, which is different than being certified in neurology. When you get a chance, take a look at this information on how these doctors are special and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.
Atypical migraine is not an actual diagnosis according to the International Headache Society's International Classification of Headache Disorders, III, rather migraine with aura. Take a look at this information about migraine with aura; https://migraine.com/migraine-types/migraine-typical-aura/.
It sounds like you are on the right track with your medication. Something to keep in mind is that it can take up to 90 days before we see a reduction in our migraine frequency and severity when we start new medications, and maybe longer while we tritrate to the optimal dose. As hard as it it, we may need to think in baby steps, rather than giant leaps and bounds. 4-5 attacks a week is a reduction from 7 days a week!
A great way to identify migraine triggers is to keep a detailed migraine diary. Once we can identify our triggers, we may be able to reduce our attack frequency and severity by managing them. Does that make sense? There are lots of migraine diary apps available and Migraine.com has the Migraine Meter you can see here; https://migraine.com/migraine-meter/. But if that isn't what you are looking for, there are many others to choose from; https://migraine.com/blog/using-digital-journals/.
I've given you a lot of information, so I'll stop for now! Let me know if you have questions after you go over it.
Nancy
