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Cala

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    Kentucky

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  1. Hey, where I'm from, people have those blasted Bluetooth thingys clamped to their ears and heads 24/7 ha ha ha Most of the time I can't tell when someone is talking to me or to the random person they are on the phone with, so why not music via Bluetooth? IF I had money I'd so do exactly that ha ha ha But I also cheat a bit LOL have really long hair so hiding my earbud isn't even a concern for me, the majority of the people around me don't even notice it.
  2. When I get really bad, I use music. Not what you think though. I bring up Pandora on my phone, or any music player, put in "one" headphone, and put it on a Spanish rap channel. (I do not speak Spanish) or a music only dubstep/dance heavy beat channel. This noise, in a language I can not follow, with a beat that often will mimic the heartbeat, distracts me and will NOT let my mind do but two things. What I'm doing AND listen to the music. It's important though to only use one headphone. Using both will drown out everything around you, put you on the music only and your mind will shut it off and take off in a million directions. Also, with one headphone, no one can hear it, you can still talk to people, and carry on like normal. I guess you could use just about any music you wanted but calming classical or ancient music just makes me think of things (bad choice) country music....well you know what happens with country music LOL That's my idea :-) it works great for me
  3. I gave up sugar several years ago. Lost 60 pounds when I did and it helped me a lot. When I do consume sugar now, if it's very much at all, it has a time delay reaction, my blood sugar plummets in a couple of hours and my blood pressure goes right along with it. Takes me days to get it all back in line again. I assume my body is dumping insulin out on me like a fire hose LOL
  4. OK this is what I pulled up when I waded through all the Cf sites. Aquagenic wrinkling of the palms (AWP) The cause of AWP is unknown but relates to sweating. It may be caused by a salt imbalance in the skin cells, which results in increased water retention within these cells and increased transepidermal water loss. Some cases have been related to different medications, such as non-steroidal anti-inflammatories and some antibiotics. My guess is it has something to do with all the fluid/salt fighting I do with my body most of the time? Since CF is not something that is anywhere in my family tree and I had no sign of this problem until my Dysautonomia made itself obvious years ago. I do know I'd live in that saltwater pool if I could...man I felt normal when I was in there
  5. Oh I did notice last year that it does not happen at all in saltwater. So a saltwater pool is awesome!
  6. My palms do exactly the same thing!!! Dead on, your pictures could be my hands LOL I always thought it was odd because I don't remember when I stopped wrinkling like I'd do as a child. But it seems like it's been like this forever. And it's just water that does it, doesnt have to be soap, chemicals or anything else. Really weird, so what part of Mercury were you from? I was from the east side. :-)
  7. Don't look a gift horse in the mouth LOL it may go away tomorrow but enjoy it for however long it lasts :-) Although you could be on to something. I do my best with feeling decent when I'm in a lot of sunshine/outdoor light. I'll even sit in the sunlight in windows during the winter whenever possible. Even going so far as to hit tanning beds when I was at my lowest when I used to work retail big box store and couldn't get enough light. I've never really connected feeling mentally decent to how symptomatic I am but they would have to LOL Maybe I need to start keeping a log for myself. Excellent theory here! Keep us posted!
  8. I don't think it causes them, my heart does that by itself every time my blood pressure goes above a certain range. Not high blood pressure by any means but higher than normal for me. Example, I get really stressed out or in pain or the two together (migraine pain) and my blood pressure will elevate and if it comes over that invisible barrier, my heart starts fluttering. It goes crazy sometimes. That why I was kinda sorta expecting it to happen. I've had it happen when I over do the salt every now and then and I'll check my blood pressure and it's reading "gasp" almost like a normal person LOL but my heart is thumping around like a Mexican jumping bean in a match box. SO don't let the medicine freak you out. I do not think that's what's doing it
  9. Hi guys, time for the report :-) It worked about like it figured it would. I tried it twice. Both times at the house. Once when I felt fairly normal and again when my heart rate went down low and my blood pressure bottomed on me. Each was the 2.5mg (I weigh 125 pounds and I'm 5 foot 4) Both times I noticed my blood pressure jump within about 25 minutes. Prolly about 10 points. I was checking it but I wouldn't have had to, I could physically feel it climbing. Along with my hair LOL I felt like I had bugs in my hair. Hands were tingling as well. (My body does this when my blood pressure bounces around anyway but just not this bad) It does make my heart go out of rhythm though (what I call stump jumping or butterflies flapping around) and it seriously unnerved me in that respect so not so sure I want to try that again for a while but I did give it a good old college try. It is something I can keep for emergency use in case I was out in a very bad place to be like that but let's hope I don't start visiting street gang hang outs anytime soon LOL I think I'll stick with salt and Gatorade and just hang out under the Christmas trees and swap stories with the other shoppers while it works LOL
  10. Oh yes indeed! Anytime the barometric pressure shifts drastically one direction or the other it affects me bad! Can feel like my brain is being squeezed from the inside. My kids always refer to it as my "hackles" because I always "know" when a storm is about to turn nasty LOL but any shift affects me to some degree. Sometimes they are terrible but they can affect me the other way as well and make me feel really good. I guess it's just easier to overlook the good ones. I have only ever heard of those house fan things before and they honestly sound like something out of a horror story.... I can only imagine what they would do to me....
  11. My directed dosage is 5mg 3 times a day and not to take 4 hours before bedtime. But I've not taken any of it "yet" I'm doing the paranoid, nervous, freak out, ask too many question thing I typically do when confronted with a new medicine that will either help me or possibly kill me LOL I did that with the Mestinon and left a bottle sitting for 2 months and regretted with my whole being later because that stuff actually restored my legs to me (I have neuropathy as well) neuro gave it to me and didn't truly explain what it does etc... But tampering with my blood pressure hr really terrifies me. I think I'm going to try splitting the pills down to a 2.5 trial and see what it does to me at home and go from there.
  12. Yet another question on this drug. I'm sitting here looking at my pills, 5mg and I already know I'm going to be splitting these up before I attempt to try them but my question is, my bp is all over the map most of the time. I've tried tampering with my hr with beta blockers and things before and the results were not pretty so I'm paranoid of anything long term. My heart rate is usually 100 to 140 and the bp stays around 90/70. I function "okay" at this level right? SO there are times when my heart rate tanks out for no reason and it plummets down under the 80s when I'm standing up and my blood pressure bottoms out and that's when I have. my problems. If this happens, if I was to take one of these pills, how fast would it start to work? For example, if I was at a store and I end up almost passing out under the Christmas tree display and I find I can't safely leave, would it be "in theory" a good emergency drug to use to raise my blood pressure? Has anyone ever used it like this?
  13. AWESOME! I was just browsing for stuff last night to print out and for stuff to post! That is perfect! Thanks!
  14. I was sharing this post during a debate last night and it got some serious information out guys! While the people that were with me were well aware of "my" condition, they were not aware of the higher end extreme of the tachy and several were shocked. I could see them, hands on their chests, eyes round, imagining what that would feel like LOL Always teach whenever you can! Made me show my age by blurting out.... And now you know And knowing is half the battle G.I. JOE!!!!
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