JanaDaisy

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.

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?!?

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...

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.