I’m on topamax for my headaches. But after uping and uping the dosage I felt like I went crazy so the doctor lowered me to 50th a day. But now the headaches are back even worse. Anyone know of other ways?? I’ve tried heat/ice packs. Dark rooms with no luck…
Hi I was having the same problem and I even thought somehow my AVM was back or that I was never going to feel better. I found out that I just need to take better care of myself. No one ever wants to slow down especially when your children need you a lot. I have felt better with less headaches and I hate taking medicine especially when I already take the seizure med, by sleeping more and just stopping when I don't feel well. I am not working and I am still visiting my Neurologist who has new med to try. I have found that I am ok with a headache once in a while and they are not that strong as long as I sleep well, take my other med on time and slow down when needed. That is what worked for me.
I’m glad your seeing refleif. I usually try to slow down. I’ve u p’s my water in take but the last 3 days between the loss of vision again, numbness headache and chest psin. I’ve managed to work 4 hours a day. Than sleep the rest mostly or I just lay here… what meds have you all tried any better than others??
I have the same issue but my migraines and headaches are usually every month for about 4 days, either before my period or when I ovulate.
I would love to get off Topamax! it is the only seizure med that I am still on though. ...so it won't happen soon.
The Dr who put me on it. Said I’ll probably take it for life. The only good thing I’ve had off of it was I’ve lost needed weight. But now with it not helping the headaches I feel why keep taking something that’s not helping. Ya know?
My son Gavin has an AVM in his brain and has suffered two bleeds (Oct-2012 @ age 6 and Feb 2013 @ age 7). He was experiencing headaches for several months. They would be on and off throughout the day and usually for very very short durations. Sometimes at the side of his head, at the base of his neck/back and often in between his eyes. From his last bleed he had hemiparesis and a suspected full right field cut. I decided to take him to a behavioral optometrist to see how his eyes were working together. Sure enough, his eyes were not working well together. Just like his arm and leg muscles being weak, his eye muscles were weak. We have been doing vision therapy since January and he has had remarkable gains in his right visual field, no more headaches, no more dizziness. His visual attentiona, interest in fine motor tasks and reading have also improved greatly. My point is to all with headaches, getting your eyes checked can not hurt. Not with an Ophthalmologist who looks at the health of your eye and acuity. A behavioral optometrist or developmental optometrist that will look at the coordination of your eyes with learning tasks. Many insurances do not cover vision therapy but it is well worth the expense. I am an occupational therapist and not only have I seen my son have dramatic changes, but many children I work with (adults can benefit too). Just wanted to share with you. A little FYI, many doctors and Ophthalmologist will put this down because they don't believe in vision therapy. However, your eyes have muscles just like the rest of your body parts. These muscles can be strengthened and work on coordination like any other muscles.
I found avm in 2009 ands have headaches ever since. I am on my second Nero bc the first one could not help me. I have headaches basically everyday and get worse when the weather changes or when it is going to rain. I recently tried nortripyline but the side effects were not worth giving it time to work. I have been on Topimax since 2009. I read the posts on here hoping to find the one thing that someone shared that might also help me. I take Vicodin to help ease the pain so that I can work during the day. Not sure what the neuro is going to have next on his list of plans. Keeping posting your situations and thoughts in hopes that bc we share maybe we can help just one person who reads these
Thanks! I am going to look into the vision therapy, I recently did go to the regular eye doctor because I thought new glasses would help the headaches but have not. I do see a correlation between my headaches and eye strain.