Hi, I was diagnosed with VM just over four weeks ago and spent a week in hospital. Since then I have had on-going problems with headaches which vary from a background headache on some days to disabling headaches where I find even walking to the toilet difficult. My balance and coordination is not great. I also often feel nauseous and dizzy and sometimes actually vomit and faint.
My problem is that I have seen my GP several times as well as visits to the out of hours service when the pain has been unbearable. I have seen a neurologists and tests have shown that there is nothing seriously wrong. There seems to be very little they can give me to reduce the pain - I can't take NSAIDS and opioids are discouraged as they can cause headaches. I have found an increasing dose of amitriptyline has reduced the number of severe headaches but I am having to reduce this as it may be contributing to problems with my blood pressure and fainting. My worst experience was with a nurse when in hospital for another condition. Even though I was covered in vomit, crying in pain and struggling to even walk to the toilet she said it was "just a headache" and to be expected.
Most of the medical professionals I have seen have been understanding but I don't think they appreciate the impact it is having on me. Even though I have family and friends around me, I feel quite lonely and misunderstood. There are days when I can only lie in bead crying with pain and I am covered in cuts, bruises and even a burn due to my lack of balance/coordination. I am quite concerned that one day I will cause a serious injury but my treatment does not change. Does anyone have any similar experiences? Is there really nothing else they can do to help improve my symptoms?