Thank you for letting me join in and post. I have read much of this forum and found it very helpful. I am caregiver for mid-40?s Disabled woman Veteran. I would very much like an opinion from anyone here on her symptoms as we are getting less than no help from the VA. I do realize that you are not physicians but you all know the illness better than most doctors. Two years ago Dee had a spinal abscess and osteomyelitis in her C spine. After three months and intensive IV antibiotics, she came home. She did pretty well in recovery for the first year. Then an auto accident and whiplash caused more/different symptoms. In spite of repeated spells in the VA hospital they cannot find out what is wrong. This is what we deal with on a daily basis. Very low BP. Never over 90/60 and mostly about 75/49. Her heart rate is all over the place. It can be as low as 30bpm (yes it did that in the hospital they put her on a monitor and did an EKG and released her next day with no explanation!) and it will usually be in the range of 45 to 85 bpm but has shot up to 120bpm for no apparent reason. These are the rest of her symptoms: Severe fatigue and sleepyness; lightheaded/feeling faint (she has fainted in the past); short of breath or feeling she is not breathing properly; weird sweating and temperature control issues ? either heavy soaking sweats day or night or hot and dry with temp. elevated to as high as 103; nausea/vomiting and gas/bloating; slow to digest food (has vomited a meal after 14 hours); sleep disturbances (jerks awake suddenly); severe migraine and almost constant headache; severe memory loss and ?brain fog?; vision issues in spite of new glasses; swelling of lymph nodes (past biopsies yielded nothing); weight loss over past few months; no appetite and feels full quickly. (she is living on Gatorade, Ensure and yogurt right now). Also she always says she feels better when on antibiotics and I was stunned to see folks write that on here. She also has partial complex seizures which usually occur with extreme stress or fright. She is on daily morphine for pain and we know that morphine can lower BP but she has been on this for two years now and is taking a much lower dose than before. Even when they stopped the morphine in the hospital this last time, her BP did not go up. She also has Hep C for 20 years but with normal liver function, and thyroid issues controlled with thyroxin. I took some of the good information off here (not just about POTS but the other related illnesses) when we saw her GP last week. He glanced at it and said Rubbish. Then he saw the look on my face and decided to do something ? he had her sit on the exam table, took her pulse, had her stand up, took her pulse again and said, ?No you do not have this? End of conversation. As she is treated by the VA system it is hard to know where else to get help but this forum seemed like a great place to start. Thank you all so much for taking the time to read this. Any suggestions would be gratefully received.
