Hi my name is Claire,
I’m from the UK and I was diagnosed in June with Chiari type 1. I First started suffering with horrible headaches about 2 years ago, after about a year of suffering I finally went to my doctor. My diagnosis was actually very quick after seeing my neurologist he sent me straight for an MRI. He told me I have a 10mm hernia and chiari type 1 and that I needed to go away and research it to see if I wanted to be referred for the op!! So although diagnosis was quick he wasn’t very helpful. I wish I found this site sooner!
All I know about Chiari is what I have read on the internet. I have found though that I have more symptoms than just headaches, things I wouldn’t have known was due to the Chiari (if they are), I get numb fingertips, tinnitus, have trouble swallowing sometimes, have trouble sleeping, loads of heartburn (not sure that’s a symptom), also I’ve noticed that lately (and this is a new thing) if I lift anything heavy for a period of time it have major headaches and shooting pains going up into my head - not sure what this means either!
My follow up appointment was today, he wasn’t helpful today either as when I told him I had researched it and thought I had other symptoms he started wrinkling his nose saying it was mild chiari (I don’t know what constitutes as mild or severe) and Would NOT listen!!
In any case he has referred me to Kings in London so I am now waiting for an appointment to see a neurosurgeon, hopefully they will be more helpful and give me more info.
Sorry if it turned into a rant,
Thanks for reading x
A lot of the symptoms you are describing sound like chiari to me. I found all of my information, prior to finding this group, from the mayo clinic website... they have a huge list of symptoms. and I had all of them. Keep your chin up and stay strong. You will find that most people on this site aren't huge fans of Neurologists... the neurologist I had told me I was crazy and that chiari didn't exist. Neurosurgeons who specialize in chiari are the best route to take to get information about what you have and what can be done to help with the symptoms.
Sending you good vibes.
You need to find a doctor that will order a CINE MRI. They cannot tell what the chiari malformation is doing to your body unless they can see the CSF flow. My symptoms were just like yours and the first neurologist looked at my MRI and said "so you have a headache, we have lots of drugs to treat headaches" When I asked about the other symptoms he said they did not fit with a diagnosis of chronic headache so we are not going to treat those symptoms at this time. The neurosurgeon was not any better. He said "We treat chiari with surgery, you don't need surgery, try to avoid any head injuries"
Needless to say I never went back and found a chiari specialist that ordered the CINE MRI and found that my CSF flow was completely blocked.
Do as much research as you can! The Mayfield Chiari Clinic has a good website.
Claire, The increase headache with bending, coughing, bearing down, etc is probably a valsalva maneuver headache- Classic Chiari! Heartburn is also a symptom and you may want to research Ehlers Danlos Syndrome too. I’m not surprised that doc wasn’t aware of the symptoms, so sad but true this condition is little known and also little known are the accompanying conditions, like EDS. With Chiari also be aware of dysautonomia (pots is a popular type with us), vitamin D and vitamin Bs deficiencies, sleep apnea, syrinx/ syringomyelia, EDS along with cranio cervical instability,and magnesium deficiencies.
Jenn 
With this diagnosis, you are likely to wind up knowing more than many doctors. The herniation is by far not the only “symptom.” It is a must to find a neurosurgeon (NS) who will treat all the symptoms, not just the cerebellar tonsils. I had symptoms that mimicked MS and Parkinson’s. My first neurologist (NL) gave those to me as a diagnosis. Luckily I found an excellent NS who corrected the diagnosis and I just had decompression of a 14mm herniation on Friday!!!
Thanks Ladies
I will have a look at the websites you suggested, judging by what you have all said I’m going to need to go into my next appointment well equipped with info!!
It’s funny you should mention EDS as my cousin has got EDS, my mum has got Fybromyalgia and years ago a second cousin of mine was born with (and died of) spina bifida!! So there is a faulty gene somewhere in my family. I’m also scared that something might pass on to one of my children.
I keep worrying if this gets left, will I develop more symptoms as time goes on like syrinx?
Becky-Kelley hope you are doing well after your op
Thanks