Arnold-Chiari Malformation Support Group

Sounds like you need a new doctor. Yeah you have chronic headaches because of your Chiari most likely.
I am not sure how much my advice will help you but this is something I do when my head hurts so bad i can't function. I lay down on my bed with a pillow under my knees and I put an ice pack on the back of my neck. I also take a couple Fiorcet for the pain and Zofran for the nausea I get. Now mind you the pain med only takes away a little of the pain. This helps sometimes other times nothing I do works. My symptoms have graduated though and are now effecting other things so I think surgery is in my near future.

headaches are a huge part of chiari. Maybe you should see another dr. I take topamax which seems to keep the migraines under control somewhat - but the chiari headaches are much different. Migraine meds work on migraines - they are not a pain medication. I also take a long acting pain med every day because I am never without head and neck pain. It is so bad that I can't function, I don't know what I would do without pain medication. Message me if you like - I'll tell u everything that I tried and what works and didn't work for me. I also do physical therapy that has helped me learn to support the weight of my head with my back instead of with my neck. I think it helps but is not enough by itself.

I also take Topamax 200 mg at bedtime it does help some but when a bad headache is upon me I take fiorcet and zofran and I do the ice pack thing as I mentioned before. Everyone has thier own things they do.

Hair pulling really does give me relief sometimes. You're the only other person that I have ever heard say that hair pulling helps! My hubby thinks I am crazy - he's always afraid to pull as hard as I want him to. I have no idea why it helps me but it does. :)

LOL I pull my hair too just wasn't gonna say it. Didn't want you thinking I was nuts.

You all are funny about the hair pulling. I also pull my hair. It does help sometimes and my husband does think I am crazy. I had surgery in 2006 and was fine, but now my symptoms are getting worse. I took Topamax but I am one of the lucky ones that those medications affect my thinking process. I have learned that some relaxion works, and stress makes it worse. Therapy has worked for me but I have to be carefull of the therapist I use, I also love a good neck masage. I have found the heavier my weight, the worse my headaches are. I am naturally a small person but with another condition I have, I have hard time with my weight. There are no doctors here in Kansas that really study Chiari so they all blame my symptoms on something different each time. They are all over paid quacks. Now that I have that off my chest. I hope this helps. You may have a hard time. I have been told by others that ACM that I should talk to a Neurosurgon instead of a neurologist. They can perscribe the meds and do everything the neurologist can do, but they are more knowledgable on things like Chiari and are less likely to blame it on Chornic Migranes. Find one that is not surgery happy. I know not everyone has the same problems as me, but I had the surgery in 2006 because I was going paralyzed. My symptoms are slowly coming back. If you do have the surgery, find some one that has done it hundreds of times for Chiari specifically. And know that recovery is long and hard and not always perminant.

My chiari was first diagnosed in 2007 but I was told then that it was not the cause of the headaches. (I've had headaches and migraines for over 40 years). While hospitalized for the second time this year to find a pain medication that would work, one of my nurses gave me the name of her husband's neurosurgeon who had performed his surgery. I saw him and he told me that the chiari WAS the cause of my headaches. Three weeks later, I had the surgery on 7/27/09. I'm still recovering but I have not had a headache yet!

You really need to get another opinion.