Back to all discussions

Extreme pain standing or when laying down

Hi, I started getting migraines when I was 9, the usual visual disturbance, sensitivity to light, pain in head. Then 16 years ago I was diagnosed with "cough headaches", another form of migraine. In the last 6 months though I have had new symptoms. It started off by waking every night around 3am with a blinding migraine pain and feeling the need to "drain" my head! Upon sitting up, I would literally feel a draining sensation from my head and the pain would reduce, but not go completely for a while. That has now been replaced with being unable to lay down without 3 or 4 pillows, because if I do I get severe pain in my head. The same applies if I turn over from one side to another in the night. Again it's a feeling of excess fluid in my head! In the last week I have started getting a searing pain when standing from sitting, feeling dizzy and nearly passing out. I have to sit straight back down for it to stop. It doesn't happen every time I stand up, probably 40% of the time, and more likely when I've been sat down for a longer period. Can anyone give me any advice please? I really have had enough!

  1. Hi Jules14, Those sound like some very scary symptoms that you're experiencing. I have the great differential between lying down and standing to my migraines at times. And like you I found that having my head in a certain position, and completely supported, on my side, from chin around to spine certainly helps.

    I have not experienced the fluid like feeling that you are describing. I would definitely recommend that you speak with your doctor about any changes to your migraine and these distressing symptoms.

    Thanks for being part of the community. We're glad you're here. -Warmly, Donna ( team)

    1. Hi Donna, thank you for your warm welcome. I saw a Neurologist yesterday who is 95% sure that all of my symptoms are caused by a CSF. He even said that my diagnosis of "cough headache" 16 years ago was probably a mis-diagnosis and that I have had a CSF for 16 years! Apparently it was an unknown condition back then. I am relieved to finally get some light at the end of a very long tunnel! I am awaiting an MRI to confirm his diagnosis. I would strongly suggest that anyone previously diagnosed with cough headache looks at the symptoms for CSF.

    2. Hi Jules14,
      Did they confirm that you had CSF in the MRI? I too suffer from similar symptoms...

  2. Did they confirm that you had CSF in the MRI? I too suffer from similar symptoms...

    or create an account to reply.