Can you describe your chiari headache?

[Carolplus6]

I was diagnosed with CM around a month ago after suffering from pulsatile tinnitus, worsening eye sight, headaches, migraines, fatigue etc etc...when diagnosed the ns said that the cm would account for my headaches but not my migraines and not all of my other symptoms, she suspect codiene use as the culprit for everything! (I take that for fibromyalgia and hypermobility ) so what I'd like to know is what other people's heads feel like as everything I've read seems to explain almost ALL ofy symptoms :/
Many thanks

[ChiariWolf]

Interesting doctor you have there... Could I ask, is this doctor a Chiari Specialist? Her response really doesn't sound like it to me.

Not that it's a dx or anything but much of what you mention here goes along with chiari's nasty little head. However, as to describing the Chiari Headache [some call Sub-Cranial Headache] - it's most indescribable. My youngest son also has CM, he describes it as the back of his head was just slammed by an elephant. Me, depending upon the severity my best estimation would be .... remember the movie 'Unstoppable'? Yes, it's that train ramming in the lower part of the back of your skull and radiating up over the skull to the eyeballs. Most of the pain is in the neck and back of head normally. The rest is what I'd describe as a migraine but believe it's the body's response to the earthquake it's trying to cope with.

CW

[Carolplus6]

No the ns is not a chiari specialist at all, lovely but not very well informed.
My headaches sound just like yours- stiff neck and shoulders, starts at the bottom of my skull and radiates over my head and creates pressure behind my eye...usually right

[ChiariWolf]

Growing up most decent people learn to trust policemen, firemen, etc, ect, etc... and to take the doctors word as gospel. After all he/she spent all that time in school right? But Chiari teaches us all in time that we can't openly trust any Doctor. Not that we distrust but we listen with discernment. Some very good doctors just don't know a thing about Chiari Malformation. If this is CM you really must find a doctor who actually listens to you and understands CM.
Another difficult thought process to accept is that there isn't a pill or surgery that will fix everything. As our wonderfully helpful and wise selmas has mentioned there are related conditions that can mimic some symptoms. So find the right Doctor, when you do they will help you sort it all out and bring a weird sense of contentment. Not that it's happiness but knowledge of what's going on can bring the inner peace you need to keep going.
All that gibberish said.... I hope it makes a little sense or at least will one day soon. The hunt for the right doctor is the key. But to get you there the best lesson you can learn to help yourself is to find your own way to find your own way to not let your body, mind to get stressed. Sounds impossible but keep in mind stress is a chiarians worst enemy.

Hope this helps a little at least...

CW

[selmaS]

Hi Carolplus6 and welcome to the Chiari forum.

Each one of us may describe our headaches differently....for me it was at the base of my skull where it meets my neck, and it would shoot up over the top of my skull with a laugh, cough, sneeze....or BM. Then I would also get what felt like a vise around my temples....I would get different headaches at different time.....some would come and go in a short time or some that lasted days or weeks.

Since you have a DX of fibro and hypermobility make sure they rule out EDS (type) and the Dr treating you knows the connection btwn the 2.

[ChiariWolf]

Ditto. This is the reason I quit posting here for the most part. But I do understand SelmaS's reply to me that it's still cm. Since the surgery it's mostly the related conditions that cause me issues but these HAs seem to hang on even when there are no other directly related symptoms. Sneezing, coughing, laughing or anything of the like is pure torture.