Becia

Standing up sends mine to 170 and up, sitting up I average 120-140. It feels like I'm constantly running a marathon.

I hate the desire to sleep during the day... When you take midodrine, you're not supposed to do that, and they always tell me to avoid sleeping during the day so I might sleep during the night. Usually after a big deal or outing, I will skip a dose or two to try and get some extra rest, because I hate feeling like I'm denying my body what I think it may need to function better, but I hate skipping my meds.

Yep, i seem to crash on a regular basis, but I never sleep... I basically just can't move.

I hesitate because I normally don't have a ride,and I'm not allowed to drive at the moment, and no one around here understands POTS, so they don't want to treat me. I'm hoping to go to the urgent care up the road tomorrow if I am ant get in with my normal gp who will trreat me. My hr has skyrocketed the last few hours, and I've really struggled to breathe, so yeah, I can't fight this without some antibiotics or something, whatever this is. Honestly does feel like a flu, I hurt like crazy, been having fevers and chills, and I've had several seizures today, no doubt from my body just going insane and not handling anything right.

I haven't seen a dentist since I was a jr in high school, and my teeth show it, unfortunetly. I wish I could just have my teeth pulled and have dentures, because I'm totally dreading ANYTHING that has to happen with them, given my POTS and hypersensitivites, and the fact it seems bad teeth just run in the family, and I certainly got the bad end of the stick. I have to see a dentist within 90 days for my insurance, so I'm taking everyone's suggestions here and writing them down to try.

I'm making a gatorade slushy now... I woke up this morning and can't breathe, wheezing pretty good and coughing a TON, although not coughing anything up. Yet, I'm coughing, so I'm passing out a lot too. Looks like a trip to urgent care may be in my future, because I can't really tolerate this much more. Can't recover from one thing while fighting anything else sometimes. I believe potato soup is on the board for today... throw it all in a crock pot and let it go, lol.

I also have a tendency to not grind my teeth, but to clench when I sleep, which makes my teeth hurt.

I was actually referred to my cardiologists via my primary care at the time. I went in with strep, and in the course of her examination, she noticed she could hear a third beat in my heartbeat, and started asking me some questions. About six months prior that, I had been in two emergency rooms with symptoms, which were all shrugged off as PVCs, was told I shouldn't feel them (but i so did, hard enough that they would shake me physically), and that people live with them like that everyday. She sent me to a cardiologist, who in turn, after trying two medications which failed, sent me to the EP cardiologist who did my ablations, and is now treating my POTS. I've been hospitalized twice because of my POTs, and the last venture I was told that the ablations could have possibly sent me on the downward spiral I'm in. I've heard that its possibly harder in Canada to get referred to the right people for certain things, this kinda being one of them. I have a friend up there who's been struggling with depression and anxiety, and she had a hard time getting to the right people, but once she did, it has made all the difference in the world for her conditions. Keep trying to get to the people you need. Tell them you want a second opinion from a specialist, if they will allow you to do that. I know my friend did eventually, and got her correct diagnosis and therapies going because she told them she wasn't leaving the office until they had it set up.

Before I was diagnosed with POTS, I was diagnosed with PVC's, although I had some of the same symptoms to varying degrees mentioned above. Two ablations later because about three weeks after the first one, I was passing out at work and home, and really struggling, I was diagnosed with vasovagel syncope. Put on Celexa, had my second ablation to fix more PVC issues that had popped up, and 26 days after that, after my friends couldn't tell if I was having a seizure or just unconcious because I passed out yet AGAIN, I was given a tilt table test, and didn't make it 30 seconds without my heart hitting 170. It seems like no one wants to make the diagnosis of POTS, or thats how I view it at least, because it has the possiblility of being very debilitating. I know it was for me, but knowing I can put a name to the problems I'm having helps... It helps my research, it helps focus my questions on therapies and how I seem to be progressing. Keep a journal. Get second, third, fourth, fifth opinions. Keep seeing doctors and questioning everything your body seems to be putting itself through until you get the answer you're okay with, your confident is, and trust. I honestly didn't think of POTS, although I know a girl in our praise band who has it. My symptoms were never like her symptoms. But in the TTT, when the doctor explained what had happened when I got a little more with the world, everything made sense. I had another set of eyes who verified what had happened the day before in the clinic when I passed out on them, and they couldn't get a blood pressure. Doctors sometimes think they can say its in our heads, until it happens right in front of them. I hope you get your answers soon. Sending good vibes!

I've had a headache for about four days now, and we are slowly reaching defcon 5 with it. Hoping a Tramadol will kinda knock it down a bit, because I'm seeing spots and everything with it. The weather where I'm at may have something to do with the headache, as well as the flu I currently am fighting.

I know how you feel Alicia, I've been having a lot of seizures lately with triggers and such. I just broke down and bought some more Vicks vaporub and will be using that on my chest with some moist heat to open up this congestion until my doctor can tell me what I can use.

Oo, a Gatorade snowcone! I should totally do this now, lol.

Yep, been on florinef for about three or four months now. I'm hoping that maybe all of the issues here were kinda like a precursor to this cold/flu thing I have now. Still very symptomatic.

In this boat now, seeing as I came down with something on Saturday, and it's just getting worse. Extremely symptomatic on top of this cold. I can't get an answer out of my doctor on what I can take... I usually take DayQuil and NyQuil for this mess, but really afraid to this year given my current status.

There's a waiting list, at least a year long. As of November, they were looking at about 9 months waiting for me to see him.

Thanks Lyla, I do appreciate the thoughts.

I always call the few days after a major holiday that requires me to be out and about and to fight syncope more than normal, the "crash days." Literally, those are the days I crash, I cannot get out of bed, I cannot get up to do much of anything around the house, other than go to another place in the house and lay down because I'm so symptomatic. Thanksgiving was rough, mainly because my birthday was the next day, and my friends had planned on taking me to the arbortorium in Columbus (which was fantastic for a potsy, because it was so pretty and calming), and then we had church that weekend, etc. I crashed about two days afterwards, had lots of seizures because my body just basically decided to freak out, and coming back from all of that wasn't easy. Well, Christmas, I knew what to expect more, so I did my best to pace myself. Of course, I just finished a 2 day EEG test for my neuro guy to track my seizures and such, to see if there's a way to treat them, I was very symptomatic going into the holiday, but I still had the mindset of "I have to do this, I cannot pass out in front of family, please don't have a seizure, oh god, please don't let them worry about me." That didn't help..but I got through the day. By 3pm, everyone was filing out of the house, the dishes were running in the washer, and I was heading for my PJs to kick my feet up and do nothing. Pretty much did nothing yesterday, and same today. But I noticed when I tried to lay on my bed, my chest is sore from trying to catch my breath. I'm short of breath often, but normally when I'm sitting up doing something in my chair is it worse. I physically hurt from trying to take a deep breath. On top of that, my tachycardia isn't getting better today when I lay down. Even when propped up just a bit so I'm not all the way down (Midodrine is in my system, laying down is a no no), it feels like I should be running a marathon as fast as it's beating. I've tried yoga breathing, stretching (thought maybe my chest hurt from sleeping crooked last night), sitting up for a bit more... I cannot get it to slow down. Is there anything ya'll do to try and manage these symptoms better? I'm on all this crazy medication, can't really tell if it's working or just detrimental (I'm on four meds for my pots that have a side effect of seizures, which makes the past couple months really fun), but just today, I am so worn out, and the longer my body feels like it's running a marathon, the more exhausted I get, and then I keep thinking "I have to do ____" (blank can be shower, get up and eat something, use the bathroom, anything). Any suggestions?

Yeah, not a Dr. oz fan here either... It seems like every time I end up flipping to the channel with the show on, it's all about weight loss. This irks me for some reason.

Yeah, after how I went down after Thanksgiving, that's why I've decided to host Christmas at my house, so I have a place to escape and regroup myself from the chaos. Probably really mean though, that I'm hoping my family doesn't stay long. I'm making them do all their cooking at their places, reserving a few acts for my kitchen. The hardwood floors echoed so much when they were all here in July... But anyway... Merry Christmas friends... May the Gatorade be tasty, the potatoes salty enough, and symptoms minimum.

Its been years since I've gotten a flu shot, mainly because every time I've ended up not with the flu, but with something similar. it just doesn't agree with my body, so I usually decline it. I'm still on the fence about getting it this year, because I'm afraid of how I will feel on top of being so super potsy as of late.

All I know right now, is I want a boston cream filled donut, lol. I read that and though "hey, sounds good!". I have no energy to bake today though, unless I get some super strong med kick later.