Smallmom

My 19-year-old daughter was diagnosed with POTS three years ago. Her primary symptoms are fatigue, low blood pressure/dizziness, migraines, and GERD. She also has hypermobility. About two months ago, she experienced an overuse injury in her arm. Although we've been having a difficult time getting a definitive diagnosis, it's likely that the injury involves a nerve. Her doctor prescribed Nortriptyline to treat nerve pain and migraines (both off-label uses). Although Nortripyline is helping her arm pain, her migraines have continued. Her doctor increased the dose from 20 mg to 30 mg on Monday. This afternoon my daughter's blood pressure went down (85/59) and her heart rate went up (114). Her doctor told her to back the Nortriptyline dose down to 20 mg tonight. So my questions are: Have others here had difficulty with POTS symptoms when using Nortriptyline? What do you use instead to treat migraines and other pain? Thanks in advance for any suggestions you might have.

Welcome from a fellow Marylander My 17-year-old daughter was diagnosed with POTS in summer 2011 at Children's Hospital in DC. She takes 0.1 mg Florinef and Adderall XR daily. She also experiences migraines, but has found some relief by being on birth control pills. I hope your new treatment makes a difference and you soon feel a lot better!

My daughter takes an SSRI (Lexapro) for depression with 0.1 mg Florinef for POTS with positive results. I agree with the previous poster -- why can't you take the SNRI with Florinef? Is there a contraindication?

Thanks for all your responses. My daughter's treatment team agreed to run some blood work last week just in case we're missing anything else; we're currently awaiting results. I'll post here if I learn anything new.

No, the concussion clinic never mentioned an EEG. The neuropsychologist did cognitive testing and said her cognitive functioning is fine, although she should have reduced homework because concentrated work gives her headaches and fatigues her. Her cardiologist, who treats her for POTS, mentioned that sometimes kids who suffer concussions have a disruption in the autonomic system. I'm just trying to understand the connection, if any, and whether we wait this out or treat her in some way.

My daughter is 17 and was diagnosed with POTS in August 2011. Her most significant symptom is fatigue. She drinks a lot, eats a salty diet, and takes Florinef and Adderall. Over the summer she seemed to be doing well and even held a part-time job. In mid-October she went to her school's Homecoming Dance and was elbowed hard on the top of the head. She was diagnosed with a concussion (her fifth). She has been experiencing headaches, dizziness and extreme fatigue. The headaches and dizziness are getting better, but the fatigue is not. I took her to a concussion clinic in the major metropolitan area where we live, and the neuropsychologist recommended rest. We're wondering what the overlay of concussion and POTS is, or where concussion ends and POTS takes over. Has anyone here experienced anything similar? If so, what did you do? Thanks in advance for any advice you might have.