LastUnicornLady

Interesting.... I think I'll get with my mom (a wonderful seamstress) before it starts getting too hot to discuss making one of these to help me get through the summer a bit better.

I get blood pooling, too. Especially in my feet, and I suspect in my abdomen as well. However, I usually have super cold feet along with that, not hot feet. So I guess that I can't really relate in that respect.

I get chest pain very frequently, most of the time I don't know what causes it. Sometimes, it's musculoskeletal. I know that I've had multiple dislocated ribs, which obviously results in pain. But I also get pain that seems to have no cause- and it can come in both supine and standing positions. My heart, too, is in sound condition based on multiple ECGs and an Echo.

So, do your icepack type things remove from the vest to freeze, or do you freeze the whole vest?

Does anyone have experience with a DIY cooling vest? Has anyone on here made a cooling vest? I am thinking it might be a good idea for me this summer, since I ma very sensitive to the heat. However, looking on Amazon and various places, they can run kind of expensive. My mom and I are handy with a sewing machine, so I'm thinking that we could probably make one fairly easily. Has anyone else made one or know someone who did? I found some replacement icepack inserts on Amazon for just under $20, so I'm thinking that it might be good to just sew the vest base, and purchase the inserts. I dunno. If you own a cooling vest, what is used as the icepack? Is it gel beads, pockets of ice...? Any suggestions for putting together a cooling vest or features you think are absolutely necessary to make it worthwhile are much appreciated! Just comment below.

Hey, guys! I was wondering what your must-have products for getting through the summer were. The hot weather is really getting close, and I'd like to enter this summer prepared. So... what do you suggest for surviving the summer heat with POTS? Can't wait to see what everyone says!

Bigskyfam- that is awesome! *Let's go fly a kite! Up to the highest height! Let's go fly a kite! And send it soaring.... Up! Through the atmosphere! Up! Where the air is clear!*

OK... so. Update on this. After about a week and a half or so of having super pale stool, it's back to normal. My next question is, should I still bring this up with my doctor? Or does it matter, since I am no longer experiencing it? It just gets so confusing at times, trying to decide what's pertinent and what's not...

Hey, everyone! I had my first day of physical therapy today. About two weeks ago, I fell on my knee and injured it. We got an x-ray done, and they found no fractures, but there was fluid, so they sent me to a sports medicine doc to make sure there were no tears to any of the ligaments. He decided that it was probably a deep bone bruise (not fun, but it causes no permanent damage), and sent me to physical therapy to get me back in dance as quickly as possible. Now, I had been on crutches for about a week per my first doctors instructions just in case there was ligament damage, but since there wasn't, my main problem was stiffness from not using it. We did a bunch of stuff today, and I was able to walk out not using the crutches at all! Huge improvement. They were really great about my POTS. They asked about it, made sure they understood what was going on, and they asked me what to do if I had an episode while I was with them. They also made it clear that if we needed to modify anything because of the POTS, they were totally good with that and would work with me to make sure it was something doable. So, I really enjoyed PT, and I'm thinking it's going to be really good for me. I am interested in starting a more structured workout/program for my POTS in general, and was wondering what any of you were doing. I am actually in pretty good shape, and am still taking dance classes twice a week. I was hoping to start doing something more, though. I don't really like/do running, and I'm not too big on walking either. I like riding my bike, and I also really enjoy water stuff, because it eliminates the awful heat aspect that really gets in my way. (Summer in the south... not good for a POTSie.) Also, I have joint pain, and I know that being in the water gets rid of some of the trauma to the joints. Well, I was wondering if any of you had ideas on how I could get into some more aquatic stuff. I don't have access to a pool right now, and there's no way on God's green earth that we are getting a pool. So, that being said, what is the best/cheapest way to get access to a pool? Would my best option be to get a membership at an exercise... center? (Not really sure what those are called.) What do those memberships usually run? How about The Y? Would that be a better (cheaper, more practical, whatever) way to go? Do they have open... pool night... or whatever? How do memberships work there? What types of exercise stuff (movements and such) should I concentrate for my POTS regimen? So anyways... there ya go. I have a lot of questions, I know, and I'd really like to know what other people do and suggest. I plan on bringing this up with my doctor in May, but if I'm going to get a membership somewhere, than I want to start looking into that sooner rather than later.

I take one prescription med (Florinef), one OTC med (melatonin), and four different varieties of supplements. Because of the number of times and the amount of each one that I take per day, I end up taking about 12 pills a day...

That's so awesome! One of my good friends used to do some signing, normally during the songs. I learned a bit from her, but since she moved out of country a while back, I haven't done too much. Though on some especially bad days, when I can't sing, I do signing instead. (A lot of the motions are just motions and not officially signs, but I like it all the same.) It's always good to celebrate the little victories! Hope is a beautiful thing.

Hey, everyone. Sorry for the slightly TMI post, but I was just wondering if this happened to anyone else. This past week, I've noticed that my stool is really pale, and a rather sticky consistency. It's definitely different from my normal, and I'm not sure if I ought to bring this up with my doctor in May, or if it's normal, or what... Any thoughts are much appreciated! And once again, I apologize for the TMI-ness of it all.

It's so neat to be able to read everyone's bucket lists! I really feel like it's a little glimpse into everyone's souls...

I really feel for you right now, Becia. I, too, am suffering through a cold/bronchitis, after finally getting rid of a lingering cough that stuck around for over a month. So frustrated that I've taken about five steps back, but oh well. That bubble bath sounds SO nice right now... As for cough medicine, I just use OTC Delsym. I know it's not really very powerful or that it will work for everyone, but it works for me, so... whatever. Hoping your antibiotics work for you!

I had an interesting thought... If you didn't have Dysautonomia, what would you be doing? It could be outrageous, or it could be normal. For me, I would be taking Aerial Silks classes. I've been wanting to do them for a while, but the easy fainting and everything just doesn't lend well to that sort of thing. I plan on taking some Aerial Yoga over the summer, since it's a bit less strenuous, but the Silks class is simply out of the question. *Edited to include all dysautonomia patients, not just POTS people! My bad.

That's so exciting! I may or may not get a diagnosis of EDS fairly soon- maybe next month. I have an appointment with a doctor who is hoping to look into possible causes for the POTS, and I am suspecting that it might be EDS.

Ugh. Knee issues. I've had them for a while now (was told they were "growing pains", but they never really went away), but it's officially gotten serious. I fell in a class last Monday (the 7th) whilst trying to do a turn, but I figured it was just a nasty (VERY nasty) bruise and it would go away with time and rest. So I took it easy until this weekend, when I had a dance competition. I stupidly did the three minute dance as though nothing was wrong (completely ignoring the severe pain in my knee and the oncoming POTS symptoms). After forgetting to take my meds that morning, not getting enough to drink that day, and being in severe pain (that's another factor for me), it was no big surprise when I came off-stage and promptly fainted. After the trauma of falling on it, dancing on it, and possibly falling on it again/twisting it when I fainted, my knee ended up worse than it was before. I ended up going to get an x-ray yesterday, and saw a doctor this morning to discuss it. The x-ray showed fluid in my knee, so we're being sent to an orthopedist to make sure there's no damage to any of the ligaments in my knee. I got a certain amount of gratification out of the fact that it only took one test to find that something was wrong. I am so used to having every test come back "clear", that it was a pleasant surprise to have the very first one show an abnormality. Is this odd? Anyways, I just wanted to let you all know about my fiasco for this past weekend. Right now I am crocheting some crutch covers.

Food is basically my enemy. I have terrible nausea issues, and that was what sent me on my journey for a diagnosis in the first place. I have so much trouble eating because of this, and have noticed that I haven't eaten nearly enough for any given day. I would generally avoid fasting completely, but eating smaller meals is supposed to be a good thing. I also have found that smoothies do tend to cause less blood pooling, and you can pack a lot of meaningful nutrients into those babies.

Hey, Merina! Your name is beautiful. Just wanted to say hi, and welcome to the forum!

That is greatness!!! Thank you so much for the laugh. We, too, are setting up for Passover, and I'm always surprised when I hear others talking about it as well. I am, sadly, not able to help this year, because of the POTS symptoms, plus a messed up knee that I am seeing the doctor for tomorrow. Have a wonderful Passover, and Resurrection Sunday!

Hey, everyone! I am interested in writing a (semi) fictional novel/novella about a young woman diagnosed with dysautonomia. I'll probably draw a lot from my own experiences, but I don't want this to represent just me. I want it to represent all of us who are suffering with dysautonomia. So I was hoping that you guys would share your stories and experiences- your journey to diagnosis, how long it took you, the ups and downs of life with a chronic illness for you personally, the most difficult part for you of being ill, what relationships have been life during the course of your chronic illness, and something you think absolutely needs to be included to accurately portray life with POTS or another autonomic disorder. Also, if you could share links for blogs written by people with dysautonomia of any kind. I already follow Bob is Dysautonomia, and also Cranberry Tea Time, but if any of you know of (or write) other blogs about a journey with dysautonomia, please feel free to share them! (Even if they're not currently being added to very much, I'm content with reading the archives.) If you have anything else to share or contribute that isn't covered in the rest of my post, just chime in. I really want this to be about not just my story, but about all of us. I want to represent our community, not just my own personal journey. Thanks in advance for your time!

Katybug, no idea why, but it didn't occur to me to consider the weather. That's likely what it is, though! There's possible chance of severe weather on Sunday, so that's a definite possibility. I guess the reason that didn't immediately come to mind was because usually I have migraines anytime the weather changes. But, I bet that's what was up.

I think I've heard that any knowledgeable doctor can diagnose EDS-HT/EDS III, since diagnosis is based on a clinical exam and family history. However, I believe that a geneticist is required to diagnose/rule out other types of EDS. At least, that's what I had thought. If I'm wrong, someone please correct me.

Hey, everyone! All day I've been experiencing pretty much unexplained fatigue. In spite of getting a surprisingly good night's sleep last night, doing nothing out of the ordinary yesterday, I am just feeling so incredibly drained of energy. Every time I get up, I get pre-syncope, despite being on Florinef and having been doing fairly well for a while. I've gotten to the point where I get up and I just fall over. (Onto an already hurt knee, sadly.) My vision goes completely black, and I lose control of everything, but I can still hear and feel, and I know where I am. I get out of breath with even the slightest bit of exertion... Just walking to get something to eat was way more than my body thought it could handle. I'm really not sure what's up, and it's a little scary. Usually, when I get this way, I can point to the causative factor. And abnormally active day, missing my meds, stress... But there seems to be no reason for this. And I guess that's why I'm a little upset about it- because it's different. SO much has changed over the last year regarding my health, but I've kind of worked out what my new normal feels like. SO it's slightly disturbing when something doesn't fit. Does anyone else have idea that I haven't listed of why this might be happening? My next appointment isn't until mid-May, so going to the doctor is out of the question. But I'm always open for suggestions on what I should discuss with him when we meet up. Tips, personal stories... anything is much appreciated. I know you can't give technical medical advice, I'm just wondering who else has experienced this, and what (if anything) helped you out. And, as always, ideas of anything else I should bring up with my doctor in May. Thanks so much, loves.

I, too, am expecting a diagnosis of EDS III... My appointment is in about a month, and I'm a little nervous for it.