Cough headaches and chiari malformation 1 diagnosis

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I went to my Doctors complaining of cough/sneeze headaches, these were very severe, enough to make me almost pass out and feel sick. I had been suffering these for over a year. I was sent for an MRI and subsequently diagnosed with CM1, it's very mild and the consultant has given me the choice of being referred for surgery. I have currently decided to put this on hold for now, but may consider it at a later date if they get worse.

I wondered if anyone else has suffered with these "cough headaches" with CM1? My consultant doesn't think they are linked, but can't find any other explaination for them. He has now referred me to the ENT department so see if they can help. I also suffer with mild sleep apoena which is a symptom of CM, which the ENT department are also going to invesigate.

Thank you

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8 Replies

  • Posted

    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 😊

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  • Posted

    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
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  • Posted

    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

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  • Posted

    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 !

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    • Posted

      Hi htch, just butting in.....

      Glad to hear you are doing so well 14 days post op, good for you! 

      Take care & don't overdo it on the good days, lots of tlc is in order.....

      good luck with the rest of your recovery.



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    • Posted

      Am definately resting up hayleybell... Don't want to do anything to jeopardise the recovery...I felt so bad first 5 days I most definitely do not want to go back there !!! 
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