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At least no one fainted this time! 🙂 Of course we all understand… My sweet daughter took it upon herself to bring cooling cloths if anyone needed them! I saw someone wearing one around her neck! Smart lady! It also reminded me that when we meet again, we should also put our user names on our name tags! 😉
Hi Dr. Diana,
My husband did see a lady at the back faint. Her husband found her a chair just in time. I could have used a cooling cloth. It was so hot in there. That was adding to my nausea and pain. Where can I buy cooling cloths cheep? Is there a particular one that works best? Btw your daughter is a sweet, helpful, beautiful, young lady. I am sure you are a proud mama.
ShondaHi again, I can speak to the where to get a cooling towel part. And you really should try before they discontinue them for the season. I’m going to try to get another one. I get the impression they are designed for ppl who work out in the sun.. close enough, right?..
I’ve heard they are avail at Bed. Bath & Beyond, At Walgreens, (where I got mine,) and at Lowes Home Improvement, I heard advertised on TV once.. My son got a free one from his work and it’s smaller than mine. I’ve seen them priced at $3.99 and $9.99. The larger ones are $9.99… and worth it. they come in a plastic tube a bit smaller that the kind you use at drive though at the bank. you’ll love it. I was so nervous about “wasting the money” now I wish I had bought two.
At least no one fainted this time! 🙂 Of course we all understand… My sweet daughter took it upon herself to bring cooling cloths if anyone needed them! I saw someone wearing one around her neck! Smart lady! It also reminded me that when we meet again, we should also put our user names on our name tags! 😉
That was me. It was just too hot outside. I love my cooling towel. I hope to get a another one before they quit selling them. I keep one I my car for emergencies, and now I realize I need one for at the house. It really served me well that day, or might have been the fainter. I was really dragging. It didn’t match my outfit, but, I knew most of the zebras would understand anyway.. lol.
Hi Capri,
Were you at the meeting on Sunday? I would have liked to have met you. I was the one with the three kids that had to leave early because I was not feeling well. At least when you are in a room full of zebras they understand why you can’t tolerate sitting upright. I hope to make it to the next meeting. Hopefully I will be having a better day.
ShondaHi Lab Science Lady, I was at the past two meetings. the gal I rode with and I were late, last time, and unfortunately missed all of Dr. Diana’s presentation. So I didn’t get an book there. :-/ If you left early we probably crossed paths. I think I do recall some children. I had a peach colored “cool town” around my neck. Sandra was giving her talk when we got there. Bless your heart. So sorry to hear you needed to leave. Lord knows getting there is such a battle. We came from the Ft. Worth side of town. Traffic and construction. ick. Yes, Zebras understand one another very well. I was just thinking how sad it is that this illness makes us feel so vulnerable.. but it is nice at the meetings where other ppl know, if you faint, even though it’s no fun, you’re prob going to be OK. Hope to see you at the next Dallas Mtg. Hopefully we will all be having a good day. The closer to fall we get the better for me. Heat is one of my many triggers.
Yes, capri, you are the only one left. But to help you, ;), you don’t have to have a Kindle to get this. There is a sneaky little line to click to get the booklet right on your PC. I took an image for you see the attachment?). See where the arrow is pointing? Tricky, I know. It took me forever to find the silly little thing, but you all know that technology is not my strong-suit! So glad to hear it isn’t just me! Enjoy! 🙂
I think I just lost a post. Basically it said, thanks for the screen capture, I got it now, it took a bit of rigmarole, but your extra instructions. Were very helpful. Thank you. I’m looking forward to reading it.
Yes, capri, you are the only one left. But to help you, ;), you don’t have to have a Kindle to get this. There is a sneaky little line to click to get the booklet right on your PC. I took an image for you see the attachment?). See where the arrow is pointing? Tricky, I know. It took me forever to find the silly little thing, but you all know that technology is not my strong-suit! So glad to hear it isn’t just me! Enjoy! 🙂
OK.. It only took two middle age adults to do that. 3 if we count you. But it’s all worked out. hubby already had a amazon acct. so we down loaded it on to his laptop. I got it and I’m looking forward to reading it. Thank you for your help, and the screen capture, I would have never found that little avail for pc line… it was tiny. TY you for helping me get a copy. I probably won’t understand much of it.. until I read it a few times.. but there is something screwing going on with my eyes… gotta get that under control before it gets much worse. Thanks again, capri
So, again I ask. Could beta blockers thin out sinus mucus, make it clear, and make it change direction, and be the reason I got the very drippy nose? Guaifenesin thins mucus, sure, but would a beta blocker do this or is this a fluke? I so do not want to re-introduce the beta blocker, it was pretty miserable in itself, and took me days to bounce out of. Aside from the faucet nose coming out of the blue at the same time and then clearing up when I discontinued the beta blocker. Any thoughts? Anybody?
Yes, I did watch the entire video, at 3 twice already. It’s very informative and really helpful Re: HYPERADERNEGENIC POTS, which was the main focus of the video. I see my comment was targeted so much towards the last couple of minutes of your video. Maybe it was just was just a personal reflection of the moment. I think music has been a huge coping strategy for me at multiple throughout my life. I’d have never gotten this far if I hadn’t been a music junkie. Music is good for the soul, so it’s got to be good for the body. Again, great vid and a must see for Ppl living with Hyeradrenegenic POTS and shareable with those that love, care and live with them. Aren’t we a barrel of fun!
I’m confused… I thought only one parent had to have the EDS gene to pass on, or be a carrier of, EDS for a child to inherit it. ??? Can someone help me out? Which is correct, one parent or both parents?
Well, I thought I would try to post it over there, but the msg board won’t let me post it. It says there is an error in my posting or something to that effect.
opps, sorry for the mis-placement of the post above… I guess I should have put it in EDS not POTS… I don’t now how to delete it, but I’ve going to repost it in the EDS topic area.
Oh, yes, I can relate. It’s a really great video Dr. Diana… thanks for making it.
I know “ramping up’ to make these informative videos must be a challenge for you each time. I applaud your continued efforts. Maybe it’s the music that helps keep you able to continue your valuable work. Music definitely helps me along the way.
I have a layman’s theory… First off, my father died due to complications from a non-vegetative, diabetic coma, after many months of suffering. And knowing he was so severely brain damaged gave me a great interest in how the damaged brain works… and to couple that, because I had been told years ago that pain actually “assaults the brain” – being a chronic painer, I worry about the future of my own pain reeking havoc on my already compromised situation.
So,there was a wonderful 1 hr news report that explained the concept of “Music Therapy” as a new therapy for treating ppl with head injuries of every sort, strokes, military personal with severe trauma, car wrecks, etc…, and the study found that ppl who participate in “music therapy” (it’s very specialized on the high end, and fairly new, probably not enough practitioners to go around, but critical care hospitals are using them, because it works!) Back to what the studies revealed… ppl who participate in Music Therapy had much quicker recovery time and much less extensive rehabilitation time. MRI’s taken all along the “music thereapy” journey revealed that these patients’ brains actually “re-mapped” neuro pathways around the damaged areas, and within the areas there were not damaged, and drastically enhanced much of their ability to learn to walk, talk, use muscles and motor skills… everything you might consider from total coma back to a much miraculous recoveries that were once unheard of and thought to be impossible.
Based on that, I’ve concluded that as this illness might be assaulting our brain on it’s worst days, or even the days that we are “Pretend Living” (that phrase hits so close to home, btw! Plus in itself, “Pretend Living” is most likely hard for the brain, especially on difficulty days.) However, with the help of music therapy, which I do as often as possible, being a music junkie, this might be slowing down or countering what some of my brain is dealing with. The TV special (I wish I had a tape of it, it was great,) revealed that just the simple act of listening to and simple tapping your feet or fingers to the music is of benefit. Playing along, singing along, or participating with instruments, even if it’s just drum sticks or a bongo, or strumming a guitar, is even better.. it seems the more involved you are with the beat and the rhythms, the more it benefits a you. Critical/trauma care ppl have to start off very slow of course and it’s still a long road back from where they were prior to their health event.
So to tie this up, it is my (layman’s) theory, that as our brains are being impacted by the illnesses, those who use music as a coping tool, or therapy, might actually be stimulating the brain to build new neuro-routing and re-mapping. Sort of like getting well, as you get sick… if that makes sense. I hope so. I am a challenged writer/composer tonight.
Best to you thank you for sharing your research and videos with us who are desperate for answers to the confusing maze of an illness.
I agree with Bendable. And my “cynical of the medical industry” side has me thinking that shunts are over-rated and manufactured to be sold… to ppl who are desperate for solutions. But they are such a hit and miss alternative, I just don’t hear many good things about their success and effectiveness, not to mention the surgical implications and risks of complications. If I were in your shoes, I’d avoid shunting. I hope you feel better soon. Like many of us, you are coping with a lot of difficulties at one time and it’s very frustrating. Keep researching, keep checking back.
