Cough headaches and chiari malformation 1 diagnosis

Hi Kitiara

yes, I did, mine then began to worsen when I bent down and stood up, coughed, laughed, strained  & sneezed etc. They are called valsalva headaches and are really horrid! They are a classic symptom of Chiari, as is sleep apnea as you mentioned.

It is definitely worth seeing an ENT specialist to make sure there is nothing else going on.

With these types of headaches it is very useful to stay extra hydrated as any dehydration will exasabate your symptoms.

Take care 😊

Hi I was back and forward for 7yrs before they diagnosed me. The pressure headache was awful any cough, sneeze, bending would set it off and dizziness was getting bad. I had decompression surgery Aug 2014. I'm 61 yrs and it was awful recovery but everyone is different. The operation was to prevent symptoms getting worse, so on the whole it is better, but I still have some of the symptoms but not as bad as before. But get as much information as you can. I have a chiari nurse I can ring even though I'm discharged. But they are the main symptoms pressure head aches and dizziness. Hope this helps you. X

Thank you for your replies, it's reassuring to know that someone else knows how I feel. Unless you are a fellow sufferer, you can't explain how painful "cough headaches" can be and sympathy can be very limited. I've even been told "it's only a headache, take a couple of paracetemol and you'll be fine" by people at work .... if only it was that simple! 

I had an occipital nerve block injection in January, which did ease the headaches for a while, but they are now back with a vengence.My consultant has referred me for another block, so just waiiting for the appointment.

I have noticed that the headaches are worse if I am dehydrated, so trying to drink plenty of fluids. There is very little information on the internet, other than the ones full of medical jargon which can frighten the bejesus out of you, so any help / information is apprecitated.

Thank you

Hi kitiara, 

i am 40 yrs old and was diagnosed 4 months ago. My main symptom was also cough headache caused by poor CSF flow due to the chiari.

i had other mild symptoms which I had not realised were chiari related until after diagnosis like pains in arms and legs and pins & needles and neck / shoulder pain but none were life altering and all manageable. 

However after doing a lot of research and talking with the surgeon I opted for surgery to avoid a worsening of symptoms as most surgeons will tell you the surgery is only to stop progression and not to improve symptoms and as I was fairly healthy I did not want to wait until I had worsened. 

I am now 14 days post op which is still very early days but I am feeling ok considering the surgery I've had.

the first week was pretty awful I have to say so it is very important to consider all options and go into this with yours eyes wide open. My surgeon also left the decision up to me which left bewildered as I didn't know what to for the best. So I went and did my research and went back with a list of general questions, a list of questions if I do have surgery, and a list of questions if I don't have surgery. I then went away and thought about it a bit more !!!

its a massive decision but only you can make that decision !