Daily Headaches?

[Mom4atc]

Hello, I am new to this forum. It is really nice to have other people who can relate to what I am going through. Can any of you tell me if it's normal to have a headache everyday with Chiari? There are several days out of the week that I have a full blown migraines, but almost always have a headache. My neurologist tries to tell me that it has nothing to do with my condition and that he wants me to do physical therapy. I have read that we should not do physical therapy or go to a Chiropractor. I have had horrible luck with doctors in my area. I have been in contact with Dr. Frim's office and hoping to hear back from them on Monday to setup an appointment. Please let me know what you think. Thanks, Erica

[Mom4atc]

My Dr had me do a HA diary also. I realized that it was pointless to do so. I only say that b/c he tried to tell me that my HAs were due to stress and not my CM. He also told me that my HAs were not migraines and that people with Chiari do not suffer from a "regular headache." I have a HA almost every day and a migraine about 2-3 times a week. These Drs need to be more aware of the symptoms that us Chiarians have to suffer from.

[actressmouse]

I know that feeling of being told that Chiari is not to blame for your symptoms...boy, did I get that before I went to a Chiari specialist!!  I had the same size herniation (same length, anyway, 6 mm) and it had EVERYTHING to do with my daily, chronic, debilitating headaches!  It also had everything to do with my non-restorative sleep.  How do I know?  I had my surgery done in June and woke up in ICU with NO HEADACHE.....plus, I can sleep now too!!
Good for you "quitting" that doc....you know your body best!!

[lazycrazyjen]

I found a neurologist last fall who had me fill out those dreaded headache journals. What an eye opener! Then, in February he informed me that my MRI showed a chiari  My headache journal for the month of February, 29 days long in 2012, had 26 days of some degree of headache pain. Today I was, unpleasantly, informed that none of my symptoms are related. To each other, or the minimal chiari malformation (6mm).
I'm quitting this doctor.

[Mom4atc]

Thank you for helping me feel that I am not alone. I actually started to believe these doctors. I was starting to doubt myself and minimize my symptoms. I have an appointment with the University of Chicago. I am going to see one of Dr. Frim's colleagues. Hopefully, I will get some answers from some knowledgable doctors.

[linnielou232]

It is so irriating to me to hear how many of us have to go through this flustrating journey of the "Chairi-run-around"  I was told by so many Dr's that it wasn't due to Chari.  Had shots done, went to pain Dr for these.  Went to 2 other NS that told me surgery wouldn't help.  As everyone above states.  You know your body and you know something isn't right.  You have to be your own adovate and soon someone will listen.  I had headaches so bad before surgery I would cry just to get some relief from the pressure.  So do press on and I hope you get an appt soon and they will listen and understand.  If not always recommended to see a 2 oppion and find someone you are comfortable with.  Best of luck, and know we are here for you.
Linda :)

[actressmouse]

Hi Erica:  I had headaches every day before my surgery....they would vary in intensity, but they never left me.  I was also told by local docs (not Chiari specialists) that Chiari couldn't be the cause of my headaches.  Well, I can say from first-hand experience that in my case, Chiari was the cause of the headaches.  

My headaches got so bad I had difficulty concentrating, recalling words mid-sentence, and spelling.....kind of like a thick "brain fog".  Listen to your body and press on if you have the gut feeling that you haven't received a satisfactory answer.  It's often referred to as "the royal Chiari run-around".  
Good luck to you.  :)

[Mom4atc]

Thank you Selma! You have been very helpful. I do know my body and it is very frustrating when the doctors try to tell you differently. You explained my headaches perfectly. Thanks again for your help. Erica

[selmaS]

  Hi...yes, it is possible...not sure how a Dr that has not had the condition can say deff not when they r the ones that tell us we r all diff in how it may affect us, but this is one that most of us do have, a constant HA that changes in severity.....we have workable HA's and then those knock me off me feet types...Chiari cycles too, so we have up and down periods with it all too.

  U know ur body, and u know how u feel, make sure they r also looking at relates conditions like syringomyelia and Ehlers-danlos as they can cause headaches too....so it is a double whammy....

Get the Dr to listen to u....u have the symptoms not them....

Good luck with Dr Frim.