Relax86 Posted June 16, 2012 Report Share Posted June 16, 2012 The only drug I have been able to tolerate since this started in Jan is hydrocortisone. I originally thought I was adrenal fatigue. Found an endo who thought I was a complete nutcase but he did cotrosyn test to rule out Addisons. He said I would ruin my body using hydrocortisone and it seemed to him that's what I wanted. He also felt that I needed large doses of xanax to fix my crazy head. Since he was so mean I dumped him. I took what he said very seriously though.....however, the benefits for me outweigh the risk at this point in my POTS life. I had very typical terrible mornings and felt normal in the evening only to start it all over again the next day. The endo also found a blood-volume issue which he said I skewed my own results. Additionally I told him that during ovulation I get a 'let down' and produce breast milk. To me this screams pituitary and also that I'm one strange cookie. My mammograms are normal. I have found a good amount of people who use low level cortisone safely in getting thru some undiagnosed inflammation. I think it's helping me until I get a better game plan. I have a new symptom of my veins contracting out of my hands/arms Right > Left. I have no clue what that is - certainly my vascular system is confused at best. Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted June 16, 2012 Author Report Share Posted June 16, 2012 Relax - Have you been diagnosed with hyper pots? In the morning I feel exhausted but ramped up at the same time. It is a horrible feeling.. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted June 17, 2012 Report Share Posted June 17, 2012 Igail - I have no clue what type of POTS I have. I have low BP's, right ear pain, my head feels like I'm on a descending airplane, internal tremors, resting HR of about 100, unable to climb stairs. Most recently the blood vessels in my hands pop out what seems like a spasm..lasts for a few minutes then goes away. I started out orthostatic hypo but then BP is low in the am and slowly climbs t/o the day. My family doc diagnosed me with POTS but I have had some weeks where the HR wasn't the issue but poor vision, body temp and digestion was... Labs show a blood volume issue, low iron, low ferriten, sodium, potassium. No other autonomic testing performed. I had a TTT but didn't faint, just felt terrible. I don't remember what happened b/c I had been hospitalized for 4 days and don't recall most of what happened to me. Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted June 17, 2012 Author Report Share Posted June 17, 2012 Has anyone addressed this hypothalamus issue with their doctors. It seems very logical that problems with the hypothalamus and pituitary are involved in regulating the hormones that cause this circadian imbalance. I have not specifically addressed this with any of my doctors yet. I am wondering if anyone has and what was the outcome? Quote Link to comment Share on other sites More sharing options...
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