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As far as regaining consciousness, I don't think I've ever been out longer than 20-30 seconds or so. For my worst episode, it took me a little over an hour to fully regain consciousness (clear vision, hearing, lucid thinking) and then I felt really tired and woozy the rest of the day and the following day. That was before I was on medication. I haven't completely lost consciousness since starting meds and salt loading and drinking tons of fluids, but after pre-syncope I feel off for about a day. I'm 26.

It's been between 100 and 104 where I live for nearly the last week and I've been miserable. I've been trying not to spend too much time going outside, but I'm trying my best to work part-time and recently my job requires me to go across town to the university for research so I've been getting in and out of the car a lot and walking from the parking lot over to the library etc (about a 5-7 min walk). I've been trying to exercise a bit inside, doing some cardio and my recumbent stationary bike, but it doesn't seem to help. This past week I've had some of the worst insomnia I've ever had and I feel extremely reluctant to eat, especially in the morning and in the heat of the day. I'm not good at salt-loading and this weather makes it even tougher for me to make myself eat salty stuff :/ I used to love hot weather, but since my symptoms started becoming a serious issue back in March, I feel like I just crumble in the heat.

I was at the dentist two weeks ago for a cleaning and to get a crown fitting and I had to stop them in the middle of putting the temporary tooth on because I was having pre-syncope symptoms. I figured at the time that it must be from the chair being tilted back too far, but thinking back on it, I was fine during the cleaning. After the cleaning they gave me the injection and that's when I started feeling weird and tachy, then after it set in and they leaned me back, boom! Ugh, it was so embarrassing, even though they were really cool about it when I explained. Still, I'm dreading going back for getting the actual crown put on.

I often wake up with my tongue coated, and sometimes during the day it gets kind of filmy. I end up with coating on the inside of my lips, too, especially when I exercise. I mysteriously came down with thrush when I was 22 after being really stressed out, and I have two thickened toenails and gross peeling skin around my big toenails, so I assume it has something to do with yeast as well (plus I'm really prone to yeast infections anyway). I really hate it, but putting cute nail polish on my toenails sometimes makes it less irritating

Hi Bren, I have the adrenaline surges too, particularly at night! I have trouble falling asleep (probably due to Florinef) and then often I wake up a few hours later with my heart racing, shaking, legs all sweaty so I'm chilled but I also feel hot...sounds like you know the feeling to a T! Like you, my GP also passed it off as panic disorder. It was difficult to explain the adrenaline, all I could describe was feeling a "rush" with lightheadedness and nausea and a feeling like I needed to move or escape or something. I'm recently diagnosed too, with NCS/NMS and POTS, so I don't really have any answers. Just wanted to let you know you're not alone Hang in there!

Hm, my "seizing" episodes are a bit different from what you all have talked about. I've never had the paralysis (my heart goes out to those of you who do!!) but I've been told I seize when I'm unconscious after passing out. It happened once when I collapsed at my university and also during my TTT. I don't have any real memory of it, but I did feel a little twitchy during the pre-syncope feeling. I also have attacks, often in the middle of the night, of tachy and nausea feeling accompanied by uncontrollable shaking, like a crazy panic attack. Clenching and releasing my muscles seems to help a bit, but it can last for hours. EDIT: For reference, I have NCS/NMS and POTS.

LOL about side effects being in your head. My poor husband can attest to the fact that I was on the couch sick for almost 4 days and lost 5 lbs. when I started Zoloft, and my reaction to Paxil was so bad at age 17 that my mom called the poison control hotline at 2:00 in the morning. I still have insomnia from Zoloft but I guess that is TECHNICALLY "in my head" I don't think a doctor with that kind of attitude is good for anyone. I have no qualms about ditching doctors who rush me, don't listen to me, or don't take me seriously. I collapsed and had a seizure earlier this year and the nurse who saw me told me I was fine and it wasn't abnormal. Really?? Thank god I ditched her, otherwise I would still think I was fainting and feeling miserable for no reason. Good luck!

I'm 26 and I've had floaters since elementary school. Some days they're worse than others-- especially on cloudy days where the sky is bright but gray. Have you been able to get rid of them before? My eye doctor told me it was something I'd just have to deal with. I can sympathize with the movie thing, too. I was misdiagnosed with panic disorder for years because of those adrenaline rushes, which sometimes made me have the full-body tremors like that. If I wake up in the middle of the night because of an attack, I almost always start shaking uncontrollably. I try to sip ginger ale slowly and it helps. Maybe it's a placebo, but it makes me feel better! I had a mini-attack when I saw Inception and I'm a little worried about seeing Harry Potter (tomorrow!). Usually my husband and I go to a drive-in so I'll be able to adjust if I need to, but I really want to try seeing this one with the surround sound. Isn't it crazy how us POTSies have to mentally rev up for something like seeing a movie?

Thanks for bringing that up, lotusflower! I've been on 0.1 mg Florinef for about 7 weeks now and my docs haven't mentioned getting potassium levels checked. I guess that's something I should bring up at my next appointment. I wonder if there's anything that predisposes some people to that percentage that is affected by the Florinef?

Wow, that's frustrating that he had no idea. I wish doctors and people at hospitals/doctor's offices would just SAY they aren't sure. My doctors- two cardiologists and a primary care physician- told me to drink fluids with electrolytes. My PC doc said she wants to see me with a bottle of Gatorade or similar ALWAYS in my hand, and my main cardiologist told me it's really important to replace electrolytes after I exercise and in the heat (I'm in SC, so heat is a big issue here this time of year). I don't like the taste of Gatorade, so I drink Vitamin Water Zero and Sobe Lifewater Zero. I drink a full bottle of one or the other with breakfast each day, then I have regular water and sometimes a second bottle throughout the day. If I exercise or sweat a lot, I try to drink a second bottle. I notice a big difference when I don't drink it, but I don't know if that's a psychological thing, ha! Sometimes I will do SmartWater too, but it doesn't have as high of amounts of electrolytes as the other two.

As a South Carolinian, I'm interested in the answer, too! Hopefully someone has some experience with those or something similar.

Well, I'm glad I'm not alone, but I'm sorry you all have this issue, too! Mine is exactly like my pulse, too, and it does seem to happen when I switch positions- especially when I stand up. I had thought that after the diagnosis and starting meds I would see an improvement, but it seems like the POTS is playing hard-to-get. Good times.

In the past week or so, I've developed a fun new symptom: every now and then my left ear gets this throbbing, or pulsating sensation inside. It feels like it's coming from my eardrum or something. There's no ringing or anything, and it isn't constant, but it's enough to make me a little nervous. I've been on Florinef for about a month and a half and I'm on Zoloft 100mg. Has anyone else had this? Is it something I should be concerned about?

For POTS, you don't need to faint on the TTT. My test was positive really quick, HR jumped something like ~60 BPM in the first 1-2 mins, then I fainted after about 3 minutes and had a seizure while unconscious. BUT I also have NMS, which is what causes my fainting/seizing, according to the cardiologist. I'm not sure what the difference is between POTS and orthostatic intolerance, but my heart rate will jump and I'll get the dizziness and nausea during a variety of activities- standing too long, sitting too long, if I'm too warm, etc. regardless of what I'm doing (stirring a pot of soup vs. lifting weights or something). I'm always in favor of contacting the doctor when I notice a change in symptoms if possible.

Thanks for the replies & advice, guys Oh, lizababy, sorry I wasn't clear-- I drink 1-2 bottles of Lifewater/Vitamin Water in addition to water and decaf tea. I try to drink as many fluids as possible even though sometimes I just end up feeling waterlogged

I find it really hard to do social stuff, too. I also have trouble looking people in the eye and not getting fidgety-- it's the same when I was in classes in grad school. I'm married and so thankful for that because I would probably only talk to my mom if I didn't have my husband. I can't help but feel like I'm missing out since I'm only 26, but I just can't handle going to department functions and stuff. I went to one and left after about 40 minutes because I felt overwhelmed and shaky. When I started feeling sick and getting down about it years ago, my then-best-friend, who has never faced serious health problems or financial hardship (both of which are issues for me), said "Why do you always act like your problems are so much worse than everyone else's?" I guess that kind of stopped me from wanting to reach out to anyone since.

Hi all, I was diagnosed with POTS and NMS/NCS in May after a TTT, several EKGs and 3 weeks of a TCAT heart monitor. I also, evidently, have a heart murmur, but I don't think this contributes to the other things. I began having fainting spells in middle school, and they would seem to occur frequently and then disappear for a while- sometimes years. Then in college I started getting extremely sick even if I just caught a cold, and I would have other, seemingly unrelated, symptoms such as getting out of breath and tachy after climbing one flight of stairs even though I exercised a lot and have always maintained a healthy weight. Then in grad school the symptoms kept getting worse and worse, and I was misdiagnosed with panic disorder and put on Zoloft. This helped for a while, but then I went off of it when spending several months abroad last year, and went back on a lower dose. During the spring, I was tired all the time, but I figured it was from finishing my Master's. Then during class one day, I started feeling what I had thought was a panic attack coming on, after not feeling very well all morning. I stood up and left the classroom to take a breather, made it four steps down the hall and woke up with blood pouring out of my nose and people standing around me saying "911." The doctors brushed it off and said there was nothing wrong, but I persisted and saw another doctor who referred me to a cardiologist immediately. Less than a month later I had the diagnosis. I have some questions for those of you who are old hands at POTS My doctor is keeping me on Zoloft 100 mg for now, but says he might switch me to Lexapro if the Zoloft doesn't seem to help. Has anyone had good or bad experiences with either? I don't know that the Zoloft is doing much for me. He also has me on Florinef 0.1 mg. As for salt loading, how much do you all usually put on? I don't like salt, so it's tough for me. And I still worry about adding too much, even though my doctor says to add it freely. I've been finding it somewhat helpful to drink 1-2 bottles of Lifewater or Vitamin Water Zero each day. Does anyone else find this to be helpful? Are there other drinks that help? (preferably ones that don't taste obnoxious, haha!) And the last question is pretty specific. I'm in central South Carolina and going to Columbia Heart. I'm curious as to whether any of y'all have seen doctors here or maybe other good POTS doctors in SC or maybe around Charlotte, NC. Sorry this is so long! I didn't want to make a new post for each topic so I rolled them all into one. Kudos if you read the whole thing

My fainting experience is very similar to hholmes13's, except I don't actually throw up. I also have this sensation like I can't get enough oxygen, like I've been holding my breath or something. Also, I sometimes have a seizure after I black out-- this happened once in March and I managed to beat myself up pretty good, and then again in May during my TTT. Afterwards I usually feel pretty woozy for quite some time.

I was only recently diagnosed with POTS and NMS/NCS but the symptoms had been developing for quite some time. I started to get headaches in college (age 18-19; I'm 26 now) in the back of my neck around the base of my head that would get so bad they made me sick. It seemed like I went through phases where I would have them every single day for weeks and then they would disappear for a while. I'm 26 now and I still often get those types, but sometimes I also get a "pressure" headache in my forehead. Recently I had a nasty headache in just one side of my head with eye pain, but it hasn't happened again. Usually I can take a couple of ibuprofen and it subsides, but these aren't the type of headaches you can sleep off. If I try to sleep when I have one, it seems to get worse. Before POTS, I can't remember ever having headaches except when I had a cold or something.