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Everything posted by nblocksj@pacbell.net

  1. My daughter has diagnoses POTS and Ehlers Danlos Joint Hypermobility Syndrome. She get very dizzy and nauseous when looking left. Today she woke and had arm tingling and feels that her cervical spine is, "Out of place." Can a subluxed vertebrae cause this? Can vertebral artery compression cause this? She went to the hospital and they said she was not having a stroke and took no x-rays. They said it may be inner ear. When she rolls left she does not experience any nausea or dizziness only with cervical spine left rotation or extension. Inner ear does not seem to be the problem. Any ideas or thought on this would be appreciated.
  2. My daughter had very mild episodes as a child. Mostly spacey episodes and a dislike of crowds. She functioned very well and was a competitive soccer player. At puberty she started to get severe migraines, mostly aura without headache. She did get headaches daily but not necessarily migraines. She had a particularly bad aura of upper right loss of visual field. It never went away and was diagnosis as a stroke. She went on to have a brain stem stroke or a complicated migraine in her brain stem with lost of strength on the left side, loss of taste on the left, ataxia, tachycardia, dizziness, expressive aphasia. altered temperature sensation, severe right upper abdominal pain, and more symptoms of dysautonomia. It turns out she had a PFO (patent foramen ovale) a hole in her heart that has been correlated to migraines. The hole was closed and her headaches disappeared immediately. She has not had anymore migraines but developed POTS. There is a disagreement between neurologists and all other doctors as to the cause, stroke vs. complicated migraine. She recovered slowly and was doing well until she had an ERCP and had her sphincter of Odi cut. That got rid of her severe pain but brought on horrible POTS. She is slowly getting better but still we live minute to minute with a daily array of dysautonomic symptoms. So which came first ... we don't know, but it all seems related. So after my divergence I guess her is born with it and trama combined.
  3. My daughter has been on Flurocortisone for a year now. She had significant problems with sleeping as she was taking it in the AM and PM. She slowly switched it to AM only and sleeps much better. She recently had surgery on her sphincter of Odi and had complications of pancreatitis and has had significant problems since. She cannot hold her water. During the last hospitalization we got a new internist who prescribed her Vasopressin and she is doing significantly better. Her tests did not show diabetes insipidus but all her signs and symptoms screamed it. He gave it to her anyway on a hunch. What I have come to find out is many tests come back negative with dysautonomia, but the medicines work any way. You must be careful to get enough salt with both medicines and get your blood and urine checked regularly. My daughter has to take Potassium while on the Flurocortisone. She too is stuffy and feels that she is getting sick and then the next day, or next hour, she feels better and clears up. Read, Research your problem and remember many doctors are intimidated by their patient knowing more about their problem than they do. If there is "Nothing else that can be done", their hand is on the door, they are rude...etc. it is time to get a new doctor. What helped us the best was to go to a large teaching hospital and get a diagnosis and a plan. We took the plan to our local doctors and they now consult with the specialist and this helps them feel better about their prescribing medicines. Good luck! Potsy Mom
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