Hi! I just joined 5 minutes ago…hoping to find answers to questions I don’t even know how to ask. Our son, at 19, got ‘swine flu’ while at college. He was unable to go to class and had to withdraw. It affected his autonomic system horribly and he lived with this for 3 years. We thought this was bad until the day he suddenly got a migraine that has lasted day and night for 3 years and counting… ALL DAY, EVERY DAY…he feels like his head is about to explode. His sleep has been affected REALLY Badly! He might be able to sleep 2 hours in 24 hours. This is on TOP of the autonomic problems. Medicines work for about a week then have no effect on him at all. He has been at home these 6 years, only occasionally leaving the farm to go get his hair cut or to the doctors’ office. Our local doctor is awesome, but last week told us…with heartfelt despair that he “is at my wits’ end”. Doctors at Emory in Atlanta had no clue how to help him manage his pain or to have ANY life AT ALL. Diamond Headache Clinic in Chicago tried to help and gave us “POTS” for a diagnosis. Mayo, in Jacksonville, tried to help, but gave us no answers and nothing to help. They told us to ‘Come back in a year.’ Right now, any activity outside the house is about too much for him to bear and we feel truly blessed WHEN he feels well enough to walk down the hill to feed the mules some apples! 🙂 If anyone wants to share advice, stories or whatever…please speak up! For the first time, last week, we heard ‘bipolar’ mentioned. We are researching lots about this new term… The folks at NAMI have been really nice about giving us advice and support the last few days… Thanks!
Prayers from LOTS of friends, family and even strangers have been the strength that is getting us by day by day! God has truly blessed us to be parents to this humble, sweet and wonderful young man who is enduring all these horrible things and never complains! We have to ask him how he is feeling. What a role model!
Any ideas about getting Disability to go on through?
Thanks for any and all help! 🙂 Beccahp