M J

Hello I am also new to this diagnosis and this forum. I have questions and can use any info anyone can offer as I am really frustrated. After a few years of CSF leaking and patches, I was diagnosed with Vasovagal syncope. I don't fit into any of the more prevalent diagnoses but my symptoms are closer to a Neurally Mediated Syncope. There are no Neuro physicians in the area who know much about this and none are certified in the whole state of NC. Hard to believe with Duke and UNC right in my neighborhood! I had a Tilt-table test with a cardiologist who has seen a few cases, got my diagnosis, was given a prescription for Midodrine and rehab, and a follow-up appointment in ONE YEAR (the soonest she had available) with her. Say what? Any input for physicians in the area would be greatly appreciated. I requested a consult with Vanderbilt and have not received a reply but not crazy about having to travel so far. The medication made me so confused I stopped taking it (I let my neurologist know). The compression stockings are horrible to wear and really pricey. I went to a few rehab classes but they are for POTS and I was the only one there so no one to talk to about this. I'm drinking 4 l of water a day and eating so much salt I feel I should hide from deer (when I'm not in the bathroom of course)! I had to take an unpaid leave of absence from work (desk job) as I cannot sit longer than 30min at a time without symptoms. Any information or suggestions would be greatly appreciated as would any reply from someone in/near my area Raleigh/Durham. Best to everyone suffering with this odd affliction. MJ

Hello I am also new to this diagnosis and this forum. I have questions and can use any info anyone can offer as I am really frustrated. After a few years of CSF leaking and patches, I was diagnosed with Vasovagal syncope. I don't fit into any of the more prevalent diagnoses but my symptoms are closer to a Neurally Mediated Syncope. There are no physicians in the area who know much about this and none are certified in the whole state of NC. Hard to believe with Duke and UNC right in my neighborhood! I had a Tilt-table test with a cardiologist who has seen a few cases, got my diagnosis, was given a prescription for Midodrine and rehab, and a follow-up appointment in ONE YEAR (the soonest she had available) with her. Say what? Any input for physicians in the area would be greatly appreciated. I requested a consult with Vanderbilt and have not received a reply but not crazy about having to travel so far. The medication made me so confused I stopped taking it (I let my neurologist know). The compression stockings are horrible to wear and really pricey. I went to a few rehab classes but they are for POTS and I was the only one there so no one to talk to about this. I'm drinking 4 l of water a day and eating so much salt I feel I should hide from deer (when I'm not in the bathroom of course)! I had to take an unpaid leave of absence from work (desk job) as I cannot sit longer than 30min at a time without symptoms. Any information or suggestions would be greatly appreciated as would any reply from someone in/near my area Raleigh/Durham. Best to everyone suffering with this odd affliction. MJ