My wife Janet had her Cerebral AVM embolized 3 months ago. She had bad headaches for about a month. Now they aren't nearly as bad, but she still has them. She takes Advil when they aren't too bad and Hydrocodone when they are a real problem
She has been taking Keppra since the AVM was discovered after she had a seizure. The Keppra has kept any more seizures from happening.
Our family Doctor has suggested that she consider switching from Keppra to Topamax. The Doctor says that the Topomax can do both, control seizures and help ease the headache pain. That would eliminate the need for other headache medications.
Does anybody have any experience with Topamax? If you do, I sure would appreciate hearing any opinions about the switch.
Thanks in advance. This is such a great forum for exchanging ideas. I would be lost as a caregiver without AVMsurvivors.org
I was pout on Topomax for migraine unfortunately my body could not tolerate the drug. It was effective for alleviating the vertigo. Another epileptic acquaintance also had difficulty with the drug which was a shame as it did control his seizures. Hope your wife has better luck
Thanks Cranberry. The Keppra is working GREAT for the seizures. The Doctor just suggested the Topomax to help with both seizures and headaches. But, I think we're leaning on just staying with the Keppra for now.
We live on the Outer Banks of North Carolina. It's a great island to live on, but tough to get healthcare. The closest neurologist is more than a 90 minute drive to see.
I think we'll stay on the Keppra and talk with our Surgeon about the Topomax in a couple of months when we head up to see him.
You are right, I am not interested in changing a med that is working without counsoltation with a specialist. I think our Family Doctor was just being helpful by suggesting another idea.
Thanks for getting back to me. AVM survivors are a special group of people for us!
Chuck.... I know how difficult it is living on the Outer Bank. I used to live on the Outer Cape of Cape Cod....We were really lucky tho...there were boats that would take us straight to the Boston hospitals.
Honestly, my AVM was diagnosed 7 years ago and what I have learned is to see a specialist that knows what an AVM even is....I was fortunate, my Primary Care Doctor did research so he could help me, BUT there are many, many doctors who don't do the research....even certain neurologists. The first doctor I saw was an every day neurologist who told me to forget about my AVM...just do nothing. Thankfully, I went online and found the top neurosurgeon in Boston...who saved my life.
AND, yes we are blessed to have this Network...it has made my life so much better!
Also, Chuck....From what I've seen...those of us with AVM's have headaches even without seizure meds...So I'm not sure why she is having the headaches. You are correct, stay on the Keppra until you discuss with your AVM doctor.
I think the headaches are mostly simple tension headaches that have been brought on by the consequences of being treated for the AVM. After her surgery, the headaches were bad for about a month. Then, she went almost 6 weeks without a headache at all. Lately, they have been bad again. But, I really think it's because she is faced with partial blindness and numbness on half of her body. It's kind of like she is depressed about the side effects of surgery.
Me, on the other hand feels like we won. Heck, she's alive and able to work and enjoy life a whole lot better than if she wasn't alive....LOL
Thank you so much Louisa. We'll get through this with ibuprohen for now.
We do have a great surgeon who actually specializes in AVM treatment in Norfolk Virginia. We were really lucky to find him and his whole team.
I did a search for you…http://www.avmsurvivors.org/main/search/search?q=Topamax. Topamax like Keppra effects people in different ways. Some members lost a lot of weight on Topamax. Others had trouble concentrating (problems with memory). Other members cannot tolerate Keppra due to rage issues. I would say it depends on the individual’s body.
Sorry that I could not be more helpful.