mynagirl

I was just on the regular, sorry no Timespan experience here. But now that I've heard of Timespan I'm gonna ask for that one next!!

Wow, I had no idea the fatigue thing and especially the awful-in-the-morning okay-at-night stuff was so common. That's me EXACTLY. It's so frustrating because it makes housework or home improvement such a risky endeavor - I never know if I'll feel good enough to finish what I start. I know this is a bit of a threadjack, but while we're on the subject of fatigue and when the symptoms hit us, how many of you have your POTS symptoms: 1. Every day 2. Some days, not on other days 3. Every day for months at a time, relatively normal (if not a marathoner) for weeks or months at a time I fall into #3 and I never thought it could be wholly POTS because the arcs seem so weird to me. Does anyone else have arcs? Is it just weather and I've never noticed it? And yes, I want to know where nowwhat lives too!!

I have to say, I think you'd need to try it for more than a few days. It took me a while to get into a rhythm with it. I'm waiting to get back on Mestinon after pregnancy and breastfeeding. Yes, the digestive side effects are brutal (I have IBS, so constipation was NEVER my problem anyway). On the other hand, my dry eyes disappeared - I could wear contacts comfortably again! The bowel side effects did subside somewhat after a while but eventually I got on some meds to calm the digestive issues. Ultimately it was worth it for me. It made me feel a lot better. I wish I could be on it now!!

I would LOVE to find something that says that Melatonin is completely inappropriate for autonomic issues - my husband keeps thinking I just haven't tried it consistently enough, or in the right low dosage, or whatever. That stuff is like psychological torture in a pill as far as I'm concerned, I cannot tolerate it AT ALL. I wish it worked for me, but it's the gateway to awful torturous dreams that do NOT help me feel rested in any way.

I've seen a couple people on this board mention Delayed Sleep Phase Syndrome (link here: http://en.wikipedia.org/wiki/Delayed_sleep_phase_syndrome), and boy is that me. And near as I can remember, bad sleep started when my autonomic stuff started. I try EVERYTHING to get good sleep at night but it just doesn't help, or it helps only marginally. My "good" sleep starts at about 6 am - which is a bummer, because I get up for work at 7:00 or 7:30 am . Naps are also very deep sleep for me, unlike overnight sleep. Again, I have no idea why other than possibly DSPS, which I've known about for all of 24 hours. When I did a sleep study it showed I roused 30+ times and came fully awake 14 times by 2 AM (the doc just stopped counting at that point). No apnea, but almost no Stage 4 deep sleep. Sleep issues seem like a common problem for us ANS-ers, yes? The only good sleep I've ever had since all this started is either medicated to the eyeballs on something like Versed, Valium or Ativan (I used to look forward to hospital diagnostic tests because I'd sleep so well afterward!!) or once after a Kirtan chant. (And I've tried duplicating the chanting experience at home, doesn't work). Of course all of the meds are a no-no right now with the pregnancy, so it's basically occasional benadryl and mostly just suffering and napping when my schedule allows it. My cardiologist never liked the benzos though, but after baby and breastfeeding I might bring it back up again, since several people seem to have success setting their sleep schedule at night with some low-dose benzos. There is something called "binaural beats" (it's an audio thing) that's supposed to help put you into deep sleep. There's a company called Acoustic Sheep that sells headphones you can wear to bed, and they also offer downloads of white noise or waves with binaural beats woven into the sounds. I think that's actually what happened "live" to me with the Kirtan chant. It's not a cure-all for me because I have to sleep with earplugs b/c of my husband's snoring, so the headphones can't be an all-night thing. But maybe it would be worth a try for you! Good luck with getting good sleep!!

My main complaint for years was just "dizziness" in the mornings after I woke up, worse the more I moved around. It was treated as migraines and then inner ear, which are both still likely factors on top of the POTS. (I definitely get headaches from some foods and I definitely have a vestibular-ocular-reflex issue according to a vestibular rehab specialist). Is yours lightheadedness (where you feel a little oxygen starved) or vertigo (where the room spins)? Lately mine doesn't always go away immediately with laying down either, although a good nap usually helps a lot . If your cardio doesn't think it's purely POTS, it might be worth it to get vestibular studies.

When I was DX'd at the Mayo, the autonomic doc there said unequivocally that moving to colder weather would do me good. (I live in Houston). She also told me to give up hot yoga . I've been watching this thread very avidly because my symptoms go in huge arcs, where I'm relatively fine for months at a time and disabled all morning and early afternoon for months at a time. Luckily I work from home so nobody really has to know when I transition from being showered and dressed by 8 am to when I can't shower until lunchtime and I have to lay down while I work. We keep pondering moving - we both have the same type of job and could work from just about anywhere that we can keep Eastern time zone business hours - but, like many here, our family is here in Texas. I keep dreaming of Hawaii (spent a magically POTS-free week there once in August) or California or Vermont but seems like the consensus in this thread is the constant weather and barometric changes rather than just colder weather.