LastUnicornLady

I use medical compression stockings from BrightLeafs and Lace Poet. They really seem to help, and I notice wen I don't put them on. The only compression I've ever tried is the 20-3o mmHg, because I've heard that was the strength recommended by several other POTSies, though I know that everybody has their own thing. I also found mine on Amazon for about or a little less than $20. I think it's probably more important to have the legs fit than the feet, so I would shoot for accuracy there if you have to pick.

Yep! I would definitely talk to your doctor if MCAS is a possibility. You certainly don't want o keep taking it and end up having a really bad reaction. Sometimes, allergies can develop. And with MCAS, you definitely don't want to mess around with stuff like that!

I definitely, definitely, definitely agree. I am really worried about what the summer is going to be like for me, health wise. I started getting really bad once the heat of the summer came, and there wasn't any respite until autumn started shifting the weather to be much cooler. (Around 70 or below) It ends up being really hard for me to get out at all when it's sunny and hot outside, and all of my symptoms are much worse. Fluids are definitely a must, and if I think I've got enough, I should probably drink a bit more.

Ugh. So so sorry for you! I know what it's like to have sleep issues... Caffeine is definitely a no-no, but I have found that fresh smoothies (with fruits, kale, etc.) make me feel a little more bouncy and happy at least. Also, I would invest in some essential oils peppermint- it's a great pain reliever, and it's also invigorating. Sniff a little, put some on your chest... something!

I've always been an introvert, so socializing has never really been a priority of mine, but I don't want to become a hermit, either. I usually try to get together with my friends on days where I don't have to do anything later. That's a big one. And also when I know I wasn't doing much the day before. I usually try to pick something like going to a quiet coffee shop or cafe, and we stay away from noisy restaurants. I also like seeing movies with them, because all it involves is sitting. (Though getting up is not as easy as it sounds.) And church has been a big thing for me. Many days, I struggle to get up early enough to go, because mornings are the hardest times for me. But I am so happy when I do go and feel alright, so... it's a toss-up.

I take probiotic twice a day, everyday. Mine comes in the form of a capsule, and I've never had any problems that I think are related to it.

I really feel like it's probably not just lingering bronchitis. It's hard to explain clearly, but it feels different. I know how my body feels, and this doesn't feel like what my bronchitis usually feels like. For instance, I usually cough all day with bronchitis, and it's worse at night. Right now, I'm really only coughing at night. And I also noticed that I was coughing a lot right after I was excising... But anyways... I'm definitely going to get this checked out, and investigate both bronchitis and cough-variant asthma, because I don't want to be coughing like this anymore. It's very disruptive to my sleep.

Hey, peeps! So, I'm just going to come out and say it. I think I've probably developed asthma. I've kinda felt it coming for some time now, so it's no surprise. I haven't had any tests done as of now (yet another thing to add for the list of stuff to bring up with the doctor in May... I'll have to bring a notebook!), but I'm fairly certain all the same. I've been really prone to developing bronchitis after a cold or upper-respiratory infection, and have had it at least once a year for the past several years. Recently, I developed a cold. Of course, I had the typical cough along with that (as well as a slew of POTS symptoms), but it just never seemed to go away... I've been coughing now for over 8 weeks. For the first several weeks, it was semi-productive. But it's not anymore (or, at least, I don't think it is, although I have a hard time telling, sometimes), which leads me to think it's not something like pneumonia. It's also much worse in the evening, regardless of whether or not I'm lying down... So, I guess what I'm wondering is if anyone else on here has asthma, if there is any difference in treatment for you, if this is possibly because of the POTS or simply one of those "things."

Hey, everyone! I am trying to investigate possible causes of my abdominal pain, and am interested in blood pooling. How many of you believe blood pooling to be the cause of your abdominal pain? Are blood pooling and dysmotility linked? How many have had success using abdominal binders, compression garments, etc.? What type do you use? How expensive was it? Thanks so much for your input. I'm trying to look into every possible avenue for the cause of my abdominal pain and nausea.

Hey, lynnie22! I have a pair of thigh-high stockings by Lace Poet, and a pair by BrightLeafs, both ordered from Amazon.com. I've been using the 20-30 mmHg strength. One pair of the stockings has toes, and one is toe-less. I really prefer the pair from Lace Poet, because they are comfier, and they don't have the silicone band that BrightLeafs does that makes me break out. Unfortunately, the Lace Poets pair is purple, so I can't wear it with much of my clothes... You can get a lot of fun compression stockings from Amazon, and they come shipped right to your door. Also, if you find that they help you, you might even invest in a more expensive pair from somewhere like RejuvaHealth or Juzo, as I've heard they are really comfortable.

Yes. For the most part. I still get the occasional "pre syncope" (floaters, pounding in head, dark vision, lightheadedness, etc.) when I stand up, but it's definitely decreased since being on Florinef. It took about two to three weeks before I really started seeing improvement, but it's definitely there.

I, too, can feel pretty bad even when everything points to "fine". Once getting on medication, my heart-rate stopped getting so high upon standing, but I was still having migraines, abdominal pain, nausea... the whole shebang. I just wasn't fainting as much.

Hey! I am currently taking .1 mg of Florinef twice a day. I have definitely noticed that being on Florinef helps, though I really did better on .2 mg twice a day. (Lowered it to add in Midodrine, but didn't have any improvement from that, so I'm thinking I'll go back to .2 twice a day.) My standing heart-rate was definitely lower than it was before I started taking it, and I have definitely had relief from fainting. I used to faint multiple times every week, and almost faint multiple times a day. Now, I don't faint except under special circumstances (Get overheated, dehydrated, sick, etc.), and I don't almost faint quite as often. My standing heart rate went from being in the 130s to being only 100 or less. I could no longer be diagnosed as having POTS, because there wasn't an increase of >30 bpm. (Of course, once I start coming off of it, my heart-rate jumps back up again.) I will say that the Florinef didn't do anything for my other symptoms- the brain fog, abdominal pain, migraines, etc. are all still there. In addition, it only works for me if I keep hydrated, and make sure to take my salt tablets. Hope this was helpful!

Hey, everyone! I've been thinking for a while now about getting some medical jewelry. I'm always worried that I'm going to faint or nearly faint while out and about, and I want to have information ready just in case. Even if it's never needed, it would be great for my peace of mind. Before I order any, I was wondering if anyone on here had gotten any medical jewelry, where they got it, how much it was, and most importantly, what information do you have on it? I'm not quite certain what exactly would be useful to have on it, so any advice would be greatly appreciated! Thank you loves.

For me, it really depends on the day. Some days, people tell me I "must be feeling better" or something to that effect, and I just want to tell them to shut up... I don't, though. And then other days, people will ask my family (never me directly, though...) if I'm doing alright, because I "didn't look like it." So, it really depends.

Daunarenee, I replied to your post in a separate thread, so I wanted to address June's questions. June, I also take Florinef, and have been doing so since my diagnosis back in October of 2013. Florinef has worked really well for me, with minimal side-effects. It hasn't gotten me to 100% of what I used to be, but I could tell after a few weeks that there was an improvement. I went from fainting at least every two to three days and near-fainting every time I stood up to going for up to two weeks without fainting, and less (though not eradicated) near-fainting. The only side-effect I've experienced was a bit of swelling in my feet, which I fixed by wearing compression stockings and decreasing my dosage from .2 twice a day to .1 twice a day. I can tell that i felt better on .2 twice a day, but I was trying out Midodrine again, and the first time I tried to do the Midodrine, I had a very bad reaction to it. The only thing I will say is that it does take time to see improvement. You have to let it build up before it really takes affect, so if you give it a try, don't give up too quickly. I'd give it at least two-three weeks before ditching it, unless she's having an adverse reaction.

Hi! Like Chaos said, I wouldn't wish this on anyone, but I know what a relief it is to know (sort of) what's going on! I would definitely check out the DINET website. It was the most helpful place for me when I was first diagnosed, and I strongly suggest it to anyone wanting to know more about POTS, dysautonomia, and OI. I was diagnosed by a cardiologist, and he is currently my primary POTS doctor. However, that may be changing in May after my first visit with a doctor who supports alternative treatments like nutrition, essential oils, etc. as well as medication. I have never had the chance to be tested at any of the big dysautonomia clinics due to lack of funds. Someday, I hope to be tested at Mayo or Vanderbilt, but that's not really an option right now, and may not really be necessary. As for investigating the primary cause of my POTS, the new doctor I am seeing in May is hoping to look into that. He is the first doctor I've seen who even mentioned looking for a deeper root cause, so I'm really hopeful that this visit will be a success. We will definitely be looking at Ehler's-Danlos Syndrome, and a few other things that I cannot remember at the moment. I am also taking Florinef, and am so happy it's been helpful for you! It has helped me somewhat, and I've definitely been able to do more since I started taking it. I can't wait to get to know you better, and wish you well on your POTS journey!

Maybe Gatorade would work? I always found that to be helpful when my blood sugar would get too low. And it doesn't actually have any juice in it.

I don't have anything to add about MCAS, because I don't have that diagnosis (at least, not that I know of). However, I do have a few things to add about compression stockings. I got mine on Amazon.com, and they were only about $20. They were delivered in about a week, and there were actually a few pairs that were really cute! If you find that they help you, you might consider investing in a more expensive pair from somewhere like RejuvaHealth or Juzo. I have heard really great things about these stockings. The stockings I have, though, are from Lace Poet and BriteLeafs, both thigh high. Your doctor may be willing to prescribe you the stockings, if you're having trouble getting your insurance to cover them.

I'll definitely bring it up with my doctor. The only thing is, my next appointment isn't until May. Do I need to talk to him sooner, or is it OK to wait until then? I'm hoping to wait, but is there any reason I need to contact him sooner? At what point (if ever, of course) should I do that? I'm just so lost right now...

I had an episode like that just last night! Freaky! I have no idea what my blood sugar or BP were doing, because I didn't think to check my BP, and I don't have the equipment to check my blood sugar. Mine was also accompanied by a migraine, so that may have been the cause for me, although I don't usually get that when I have a migraine... So. Not sure if it was actually related or not. I've never been tested for a mast cell disorder, though we may be investigating that along with EDS at my next dr appointment in May. We'll be trying to see if we can find a cause for my POTS.

OK, so... a few more questions everybody! Anyone is welcome to chime in. Do you think it's necessary for me to see a GI doctor about my nausea and weight-loss, or is this something that my other primary POTS doctor can handle? Should I be worried at this point about the weight-loss? If not, at what point should I be worried? Is there anything I can do that will increase my appetite, or is this dependent on my nausea, and so, will fix itself once we take care of the nausea?

A lot of young people grow out of it eventually. Or, it gets less severe and they learn to manage it better. I'm not sure about when you develop symptoms during pregnancy. Plus, every person is different. For me, I am fairly young, so I have that going for me. However, I am also facing a possible diagnosis of EDS, which might make recovery slower or make the disease more long-term, though I'm not certain...

Haha! I don't do spicy foods. Period. It was a spinach enchilada with sour cream sauce. Very good, not spicy or greasy... Of all the things on the menu, I thought it was the best choice. I still think it probably was. I mean, I did manage to eat all but one bite of the first enchilada. If it had been greasy or spicy, I probably wouldn't have made it that far... Do you think I should bring up a GI referral at my next doctor's visit? I went to a GI doctor as my first specialist because we thought I had GI issues instead of POTS. They did a few tests, but nothing huge I don't think. Just a stool sample and exam. She was the one who suggested I get checked out for POTS. Is it necessary to see a GI doctor, or would my primary care doctor be able to monitor this? The reason I ask is because we have to pay towards a very high deductible before insurance covers anything, so it gets rather pricey...

Hey, everyone. Well, one of my first signs of something being wrong was when I started feeling nauseated pretty well 24/7. I hardly ate, felt terrible, and when I did eat, I was convinced I would throw up, even though I never did. I actually wished that I would throw up just so I could feel better.... Anyways, the constant nausea eventually started to lessen, although I would still feel ill after eating, it wasn't as bad. However, I guess over the last few weeks (give or take- probably give) the nausea has started coming back, and my appetite is dwindling down to nothing. I used to be a pretty big eater, which surprised most people because of how little I was. (And still am.) I would eat a good three meals a day, plus snacks in between. I mean, I really didn't go more than a few hours without at least a snack. And if I didn't eat, I would notice. My stomach would hurt, I'd feel faint/weak. It was bad. I didn't really notice it at first, but I have definitely started to eat less and less. For instance, today, all I ate was a banana and an apple until dinner, when we went to a Mexican restaurant, and I could only eat one enchilada before feeling super nauseated. At one point in time, I could have eaten both enchiladas plus the rice and beans, and it would have been perfect. I ended up bringing home more than I ate. And I've also started losing weight. I never really had much, but I've just gotten even smaller over time. I used to top out at about 51.5 kilos (about 114 lbs.). Now, I've dropped down to barely 48 kilos (106 lbs.), though at one point I was as low as 46.5 kilos (103 lbs.) I've tried to do more smoothies, as I've heard that they're easier. And they are! But they're so much work to put together, that I can really only do about one a day since their is so much cutting and assembling. (And I really don't do the store-bought kind.) Any tips would be much appreciated! I don't know what to do, and this is kind of starting to worry me a bit... Does anyone else have experience with this?