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I never suffered from horrible headaches. I would get a few when my allergies were bad, but other then that it was the end. I was half way through my second year of teaching when I would get these (as I refer to them) lightning headaches! It felt like lightning way hitting a particular part of my brain and I would be horrible for about 24 hours after that. I went to go and see my Dr. who referred me to an infectious disease specialist. The dr eventually sent me to the hospital because they were so bad to do a spinal tap (he thought I had West Nile virus. My fluid was clear so I was sent to a neurologist. By that time I had a constant headache that never went away and lightning headaches on top of that. The Dr told me they were a form of migraines and diagnosed me with EDHS as well. I was put on TOPOMAX as a preventative. I was first started on 25 mgs once a day, it got so bad I was then upped to 100 mgs three times a day. I loved being on that medicine because I could function, but it effected my short term memory as well as left me 35 pounds lighter. I eventually had to get off that pill because my husband and I wanted to ttc and it causes birth defects. That's my story :) don't know if it helps.

July 25, 2010 - 2:27pm

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