redoctober

Interesting topic. My skin has been horribly dry since all of this crap started...yet I can work up a pretty good sweat in the same areas (legs, arms). I'm not sure what causes it...but I'm sure it's just another wonderful side-effect of dysautonomia.

Do you exercise at all? If so...what does your HR do while exercising? Also...when do your low HR's occur...anytime during the day, or mostly in the evenings?

Yeah...it's very strange. I asked him a bunch of times about it...and he discounted it as part of conditioning.

Incidentally, I just went for a 5.5 mile run...my HR just before I started was 50bpm (140/85), peaking to around 170bpm during the run, and now 81bpm afterwards. My exercise tolerance is certainly much better these days. He seems to think that my ANS is just out-of-whack.

Probably because you're supplementing with NaCl (salt). This will increase your plasma sodium. Low Vitamin D is interesting...my doc mentioned that he sees it occasionally with dysautonomia. Go get some sun!

So, I had my follow-up with Dr. Watkins with the MVP Ctr. in Birmingham...and asked him about the slower HR's. He simply said that it's a matter of conditioning...that all the exercise I was doing was lowering my resting HR. They did an EKG as well...and sitting (114/78) and standing (118/81) BP measurements...everything was perfect in his book.

Also, even though he mentioned that the BB shouldn't reduce the resting HR's any further...I've dropped it anyway for now. We'll see how it goes. He does want me to up the Klonopin a bit...given that I'm still symptomatic in a number of ways despite being able to run 4-5miles.

Thanks for the feedback, all...I really appreciate it. I have a follow-up in 2 weeks and I will definitely inquire about this. Like I mentioned in another post...I feel like a conundrum -- I went (bike) riding with my neighbor yesterday...tortured him with all sorts of hill climbs...so my cardio stamina feels really good. Yet, my resting HR is really low at night and it makes me feel pretty bad. I was prescribed Clonazepam as well...so this certainly can't be helping the situation (slowing the CNS).

Sitting in bed this morning it was 56 bpm...jumps to 90+ just getting out of bed, and settles back down to 70'ish after 5-10 seconds.

My BP isn't plunging, though. Sometimes it's like 140/85 @ 55 bpm. So it's like the ANS balance has swung in the opposite direction. Plus I can run like 4+ miles. I still get HR jumps in the morning from 50's to 80/90 just getting out of bed, too. It's just the evening HR's that are quite low.

My HR is noticeably slower now, even off the Atenolol...and I'm not sure why. It can go as low as mid-40's at night, and up to around 150+ when I'm exercising. My BP appears to be fine, but my HR has slowed dramatically. I can now run 4+miles without getting really winded, but I still feel like garbage with the slow HR, unsteadyness, waking at 4am, GI stuff, etc.

Is this just a POTS/dysautonomia thing? I'd be pleased with the fact that I can run without getting winded for the first time in who knows how long...but I still feel so crappy that it's hardly something to celebrate.

I seems to wake at 3-4am every day...and can't really get back to sleep (even on Clonazepam .5mg). My HR goes from mid-50's in bed, to 90+ immediately when I stand up. Heck, even tossing/turning in bed gets my HR up in an instant. Very frustrating...I'd pay good money to get a decent night's sleep for once.

Does anyone else here feel like I do...that your health is the ultimate conundrum? For example...I can walk around feeling unbalanced and shaky...yet I can now run 4+ miles without really getting winded. I feel so crappy in the morning (stomach awful, cold, shaky), but I can go to the gym and work out for 1.5 hours 6-7 days a week. My skin is horribly dry and flaky, but I can sweat like crazy when I work out.

So frustrating...just had to get that off my chest as I'm sitting here with tremors as I've just eaten too big a lunch. No wonder Dr.'s look at us like we're crazy.

You know...I've always chewed gum...I think it just made me feel better, but I never understood why.

I did...low normal. Probably due to Chlorthalidone for renal calcium leak.

rama:

How much Florinef are you taking? I find that just under .0125 helps me out quite a bit. If I try to skip a dose for a few days, I tend to feel much worse for some reason.

I've had Anisocoria (pupils of unequal size) forever...discovered about 8-10 years ago. I only discovered how long I've had it by reviewing "red-eye" from old pictures...which makes it really easy to check your pupil size. You might want to check some pictures taken with flash to see if you've had this problem for some time or not...you may be surprised.

How much was he on? I stopped Florinef and started Atenolol 25mg BID...lasted about a week until I gave up. I've since re-added a tiny dose of Florinef (.0125mg) and reduced the Atenolol to 12.5mg BID...which seems to be working better. Not that I feel anywhere near 100%...but at least my pulse/BP are somewhat normalized. Even on 12.5mg of Atenolol...my evening HR's can get down in the 40's.

I can relate to a number of those symptoms...even though I only take a tiny amount (.0125mg). I've started to get flank/back pain lately...so I'm wondering if it is kidney-related.

Still at 2.5mgs

I may cut the dose to see if it's tolerated better, then I can work it up more slowly as tolerated. My big concern is not being able to sleep, I'm pretty scared about that. We'll see how I feel throughout the day and whether I will drop the dose down tomorrow.

I wonder if splitting the dose would help...half in the morning, half at bedtime. Coincidentally...I tried increasing from 2.5mg to 5mg a few days ago...and feel like an absolute garbage pit today.

Also...you might ask you doc about adding Clonazepam for sleeping. This definitely helps me get a good night's rest...

4 days in and symptoms are ramping up.

Are you still on 2.5mg...or did you increase?

Wow...just when I thought I was the only guy here.

I started Lexapro 2.5mg a few months ago...for similar reasons as you: had taken it years ago when I was dealing with health issues (which I now realize are related to dysautonomia), and seemed to do okay with it. Like you...I did HORRIBLY on Zoloft (Remeron was terrible, too)...but that prescribed via a p-doc before I discovered dysautonomia. I think it reduced my BP as I felt much more shaky, nauseous, and just plain terrible on it. I gave it about a week and couldn't take it anymore. So, YMMV when it comes to SSRI's.

So, hang in there. Do you take a benzo for the nausea, etc.? My Dr. put me on Clonazepam...which has been really helpful for sleep, IBS, and generally calming my nervous system. Fluids, Florinef (.0125/day), and 200 minutes of cardio per week have been most helpful. Need to be careful about overdoing the cardio, though...too much, and I crash the next day.

Couple of notes...I visited the MVP center as well...and consulted with Dr. Watkins (founder):

• Did Dr. Phillips mention anything about cardiovascular exercise and caffeine?
  
• Did your echo show regurgitation as well as MVP?
  
• Did you get an official diagnosis?
  

Likewise...I was very pleased with my visit, although they do focus primarily on the cardio-aspects of dysautonomia. Nonetheless...Dr. Watkins was the first MD that I've seen that didn't think I was crazy and explained everything in a way that made sense.

When my GI tract shut down, my BP also tanked, and I was basically bedridden.

I get basically the same thing...slow GI stuff definitely worsens my BP issues. Clinically...I don't get it, though -- how can slow motility result in low BP?

I've had success with a product called Digestive Advantage (Irritable Bowel)...seems to be helpful for me. I've also discovered that adrenaline worsens my IBS-C (always has)...so things that calm my nervous system are a tremendous help to the "rest and digest" part of the equation.

I could almost subscribe to this...my symptoms appeared to start after my p-doc prescribed Remeron to deal with "anxiety". I felt immediately worse...developed tinnitus/dizziness...which continues to this day.

I can't believe Emory doesn't have an autonomic center of some kind, they are top dawg, they need something like that, right?!

No kidding. I had my yearly visit with Dr. Lawrence Phillips...chief of the Endocrinology Dept. at the Emory Clinic. Brought him up to speed on my autonomic stuff...and he didn't appear to take it very seriously. I mentioned my consult with Dr. Watkins in Birmingham...and he didn't sound too impressed with his findings of MVP, Dysautonomia, etc. Ugh.

Sorry...I have mild hyperparathyroidism (high-normal PTH with high-normal serum Calcium levels). After "exploratory" (full-neck) and a minimally-invasive (small incision) surgeries...multiple surgeons have deemed my parathyroid's "normal". So, my endocrinologist is assuming that my hyperparathyroidism is being caused by my body getting rid of too much calcium (renal leak) or GI tract absorbing too much (hyperabsorption).

Incidentally...I take Sensipar daily...which normalizes my PTH and calcium.