JanaDaisy
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Posts posted by JanaDaisy
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Has anyone else been diagnosed with narcolepsy? I have POTS/NCS, Ehlers-Danlos. Last time I went to Dr Grubbs office, they recommended I see a pulmonologist because I was having shortness of breath, but my PCP would only give me a referral to a sleep dr because he thought my problems were anxiety, because "POTS is more of a psychological disorder". (Clearly I need a new PCP). However, the sleep dr seemed very knowledgeable about POTS and a sleep study and MSLT diagnosed Narcolepsy. The sleep dr thinks there may be cataplexy involved, but I think it may just be POTS... Is there anyone else that has been diagnosed with POTS and narcolepsy?!?
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I sometimes feel like I can't catch my breath. Like my lungs can't get all the air I need. But it feels more like my brain is struggling to get oxygen. My o2 Sats are always perfect when this happens. The first dr I saw brushed it off as anxiety, so I am seeing someone else now and getting some testing done, but I suspect it will all be normal...
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I know what you're going through:(. I've been having horrible fatigue and I was convinced that nothing would ever help. I just started on concerta 3 days ago and for the first time in almost 2 years I have hope again that I may be able to function. I have more energy than I've had in a long time. No where near normal, but enough... So hang in there and keep trying, don't give up. I tried probably 6 other meds in the last 2 years that either did nothing or made me worse.
Propranolo Vs. Fludrocortisone
in Dysautonomia Discussion
Posted
Propranolol dropped my hr to the 20's, but Florine's raised my BP to the 170/110's. neither made me feel better. Was on both for 3-4 months because they did that after dose was increased. On the lower doses they didn't help at all and I just had extra side effects, but I'm sure they help some ppl.