LastUnicornLady

I am about to have my cortisol levels tested, so I will answer to poll after we get the results back.

OK, everyone. SO, I have a question about compression stockings. I own two pairs of stockings, one of which is this --> amazon.com/Lace-Poet-Thigh-High-Compression-Toeless/dp/B00452JK00 They're some pretty nice stockings, especially because they don't have the silicone bands that make me break out. (Anyone found any other brands that DON'T have those?!?! I'd love some suggestions.) So, it says they're great for "Yoga, Sleep, and Sports!" My question- is it actually alright to sleep in them? Is there any benefit beyond not having to mess around with them as much?

I am most definitely taking my mom along to field any family history questions they have, because she knows this much better than I do.

Hey, everyone! Thank you to anyone who was praying for/thinking about me yesterday. The appointment was a success in my books, and the doctor was amazing. After taking a look at me, he decided that a referral to a Geneticist was in line, and gave that to me. We made the appointment today, and it's scheduled for mid-June. I'm so excited for that, as it looks like we may be very close to figuring out what caused the POTS.

Tomorrow is the big day... my long awaited doctor's appointment! I've been waiting for this since January, and I'm so ready for to get on with it! The suspense has been killing me. I really feel like I am prepared- thanks to the suggestions of many people on here! I made an exhaustive list of all of my symptoms (yep- took a long time), plus noted the ones I wanted to bring up, and what about them I was wondering. I listed the other possible diagnoses we were looking into, and questions I had about those. If anyone wants to format I used, just ask! I found it really helpful. Anyways, if you're the praying type, please pray for me! I am so nervous, and there's a lot riding on this appointment.

Hey, everyone! I shared that I would be doing a performance,and I'm finally finished. It was an incredibly long week, full of stress (physical and emotional) and exhaustion, and as sad as it makes me to say, I think it will probably be my last for some while. I've been acting for over four years now, and I love it. However, my body can no longer cope with the stress. My joints are in severe pain that ibuprofen doesn't touch. My brain feels as though it's turned to mush. I'm crying at every little thing. My vision goes dark every time I stand up, no matter how much water I drink. (Thankfully I haven't completely fainted just yet.) Each muscle in my body feels as though it is just on the verge of collapse. If I do any more plays, they will have to be much more low-key than this one. Part of me is really regretting being in the show, but the rest of me thinks that it was worth it. I had such an amazing experience, and everyone was so understanding of my illness and my condition. They were very passionate about theater, and they shared my same beliefs. Everyone was so incredible, and they just blew me away by how invested they were in me as a person, not just as a character. But every muscle in my body has been so tense this whole week, and my brain is completely fried. I'm still running on the adrenaline from the shows, but I'm about 99.99% certain that I'm headed for a huge crash... And I don't know that there's anything I can do about it. Has anyone ever headed off a crash before???

Sadly, I too am going the wrong way. I've been "pushing myself through" for a year now, and I just seem to keep getting worse with every day that passes. Be very, very careful about pushing yourself to do more than your body can handle. I know of several POTSies who have ended up worse off because of that mindset. I believe that Jackie M on here can tell you her story in which pushing herself through her illness ended up forcing her housebound. I'm not saying to give up, stop exercising, or anything extreme like that. But PLEASE- be cautious. Listen to the signals your body is telling you. Work to get better, but don't OVER work yourself to where you're even worse off than before. Gentle hugs!

I think the fastest mine has been recorded is at 140. Taking my Florinef and keeping hydrated helps most of the time. If not, I usually have to sit down, take deep breaths, and just wait for it to pass.

It's a bit funny actually, because I'm the sickly one... And they cast me as this part before they knew about my illness. Thankfully, this means I have the lest strenuous part in the performance, and I get a nice, dramatic death scene, as well. I really feel like I can connect with this character, and understand why she says and does what she does. It's probably the most suited part I've ever gotten. Thanks for all of the tips, guys. They will have plenty of snacks and water backstage for all cast members, and we have gotten special permission for me to have some kind of electrolyte enhanced drink backstage with me. (Do you guys know of any non-staining, non-colored drink similar to Gatorade, Vitamin Water, etc.?) I will definitely be hanging out in the room with the A/C as much as possible when I'm not on stage. Prayers and healing thoughts are much appreciated, and I will be sure to keep everyone updated on how it goes!

Hey, everyone! I have a SUPER scary week coming up, and would appreciate any tips you have for getting through it as best as possible. I am in a theater production that preforms this week, and I have three-four hour long practices every day this week, as well as performances. I am rather nervous about it, as it's my first serious show since POTS became an issue. Also, this same week, (and the day after my theater show) I have a dance performance. I am only in two dances, thankfully. I'm pretty much preparing and expecting a huge crash next week, which might be good for my doctor's visits. It can be a good thing to feel less good at a visit so that they see what I'm really experiencing. I guess I'm just trying to stay optimistic. Do you have any tips for staying hydrated and cooling off while in the hot costumes? I can't take them off, and I can't spray water on them. Is there anything else I should remember as I go about my week? Prayers and positive thoughts are also much appreciated.

I am so glad you found this site! It has been such a life-saver for me since I was diagnosed last year, and I cannot even imagine what I would be like without it. Congratulations on getting a diagnosis, as I know that's a very big step in the right direction. Gentle hugs!

Hey, everyone! I was wondering if any of you had noticed that your pets helped you get through your illness better. I know a lot of people with ME/CFS have seen that pets helped them, and I was wondering if they did anything for POTS as well, even psychologically. Do you feel calmed by your pet? Does your pet encourage you to get more exercise? Have you had difficulty caring for your pet through your illness? Thanks everyone!

I'm so sorry for the rough time you're having, and migraines are absolutely the worst! Prayers and healing thoughts are being sent your way!

I actually just found that, and I think it's probably what it is. I just don't know if I need to be worried about it. Do you know what the cause of yours is?

Hey, everyone. The day before yesterday, I experienced something really weird, and a little scary. I was sitting working on a crochet project, concentrating on the stitches, when all of a sudden, my eyes were moving rapidly side to side, uncontrollably. It lasted only about two to three seconds, and it wasn't the first time it has happened. It happens maybe once every few months. Does anyone else experience this, and is it something to be worried about? Do you have any ideas of what might cause it, and should I bring it up with my doctor? Thanks!

My heart monitor (an event monitor) showed the definite sinus tachycardia, plus some PVCs. I was told they were "nothing to worry about", but I've been getting these weird occasional feelings of my heart beating in my throat. I've been told this is called palpitation. Is this anything like what you've experienced? It's frustrating that I never actually had it caught on the heart monitor (they didn't start until afterwards), but I also only had an event monitor, not a 24 hr. holter monitor. I kind of wish we could do a holter study for me, but they probably wouldn't show up on the days I had it...

I had an extremely bad reaction to the last antibiotic I took, too! I took Amoxicillin for bronchitis, and within twenty minutes, I was so dizzy I couldn't stand up, and felt extremely nauseated. (And this was before the POTS!) I took it twice, and got the same reaction both times. Needless to say, I discontinued that... Haven't taken an antibiotic since.

I'm so sorry you're having a rough time, Tammy! That's a difficult place to be in. I haven't been diagnosed with MCAS, but I know that a lot of POTSies (whether they have MCAS or not) are sensitive to medication. For me, it was Midodrine. I had severe nausea and palpitations. I had some headaches when first starting Florinef, too, and they eventually went away for me. Every person is different, but I hope this is the case for you. Florinef has been the only thing that helps me to function. Good luck on seeing a specialist! My thoughts go out to you, as they do to all POTSies.

I'm guessing, based on what everyone has said, that it is the Salt Tabs. I guess Ill try taking them on a full stomach this evening. If I'm not able to find a way to take them that doesn't cause me to feel violently ill, what do you guys suggest for getting enough salt? I hate salty foods, and when I looked at the Nuun tablets, it looked like I would have to drink the entire container in a day to get close to the salt intake I need. Tips, anyone? I'm currently still feeling the effects of whatever it was right now, even though it's been several hours. Is this typical? Or could this mean it's the Florinef that's the problem? I really hope this isn't the case, because it has been the only thing that allows me to function right now. Midodrine made me nauseated, too...

Ugh. I hate feeling sick. Today I had to stay home from church. I woke up feeling fine, took my medicine, and not two minutes later, I was kneeling over the toilet about to throw up. I never actually did, but there were a couple of dry heaves in there, and I generally felt awful. Is there any reason that I should feel this way after taking my medicine? I'm currently taking .2 of Florinef in the morning, 2 salt tablets, one probiotic capsule, and a B Complex vitamin. At night (because this also happens at night), I am taking .1 of Florinef, 2 salt tablets, one probiotic capsule, a vitamin D pill, and one Melatonin. Do you think this is caused by something I'm taking, or just the act of swallowing so many pills? Is there anything I could do to combat this???

Forgot to mention that Rejuvahealth also has a bunch of different knee-high patterns available, and they are cheaper than their thigh-highs.

Thanks guys! I found several on Amazon that have some pretty funky patterns. Just search up Knee-High Compression Socks. There are quite a few from a company called Celeste Stein. They have some really awesome ones. You can look through their patterns here- http://www.amazon.com/Celeste-Stein-Therapeutic-Compression-Socks/dp/B00CPO59DW/ref=pd_sim_a_12?ie=UTF8&refRID=1D1RZBC7FH2EM9DP6WR4 I am thinking about purchasing a pair. They are on sale right now, and I guess if I am going to try one out, I might as well do it while they're cheaper, huh? Another brand that has several is Sockwell.

Hey, everyone! I was wondering if anyone had experience with knee-high compression stockings/socks. I am very intolerant to heat, and am worried about wearing my compression stockings during the summer. I have thigh-high currently, but I was interested in trying out some knee-high socks. For one thing, they tend to be cheaper. I am also hoping they won't be as hot for the warmer days ahead. And have you seen some of the patterns they come in?! So cool! So I was just hoping to see if anyone has tried out knee-high stockings, and whether you thought they were worth it before I go ahead and order a pair. Thanks for your insight!

Lyla, good luck on your appointment, as well! I will definitely be wearing lightweight clothing, because I am terribly intolerant to heat. Funnily enough, the cold is also pretty bad for me... It's a fine line between too hot and too cold. By the way, your name is beautiful!

Hello, everyone! I've been very quiet lately it feels like, because so much has been going on for me. I just finished a stint with physical therapy for a knee injury, and I'm also preparing to be in a theatrical production next month. All that combined means that I have had very little time or energy for DINET. As sad as that is. Anyways. It just dawned on me that I have less than a month until my first appointment with a new doctor! As the days creep by, I am both excited and nervous. I may be looking at a diagnosis of EDS, which is exciting and disappointing. I am excited that we may find the cause of my POTS. But EDS is yet another incurable, chronic illness that's hard to treat. It could also potentially mean the end of my dancing... Dance has been my life ever since I was two, and the idea of giving it up scares me. Who am I without my dancing? But what I really wanted to talk about was the appointment. I really want to make the most of the time I have with the doctor, since it's been a pretty long wait to see him. With my terrible brain fog however, I know that I will need to bring notes or something so that I don't forget. What all would you suggest bringing? I guess I'll try to put together a list of things I'd like to bring up, but if you have any tips, they would be much appreciated! You might have something to add that I haven't thought of yet.