anjuu

I tried the Thermotabs for a week, and had adverse reactions to them. I had even worse reactions to salt tablets. Maybe you are peeing a lot because you have too much sodium/junk in your system? You thirst so your kidneys can do their jobs, but maybe you void too much salt and fluid in the process? Then the cycle repeats itself?

Thanks for taking the time to reply! Sorry that you have to deal with two opinions that don't add up. That is very, very frustrating, and I'm glad that there are other people who can relate. It's all speculation as far as I'm concerned, especially since I still don't know if I have POTS or something else that's going to take another 4 years before I know. So, before you had a pacemaker, did you always feel crappy, or was it like a bunch of intense episodes with intermittent normal/fairly normal heart activity?

Hey everyone, I haven't been here for a while, but I have some queries about this disorder. I have hooked up with a decent Cardio doc. He doesn't think that my POTS is really POTS at all, that it could be Bradycardia-Tachycardia syndrome, aka SSS. I was 'diagnosed' with POTS in 2005, but when I brought my transcripts in to this new doc (this year), I saw that they had also diagnosed me with Sinus Arrhythmia/Sinus Bradycardia and Sinus Tachycardia (separate form the POTS). I love how DRs fail to mention kinda important stuff like that and you find out almost 5 years later. Went to the ER last night because of heart pain (not chest) that felt like burning sharpness, first with Bradycard, then it switched to Tachy with palps and shortness of breath. It kept me from sleeping and was not relieved with sitting up, or laying down. Still have some pain sitting here typing this. I've been feeling these new chest pains for a few months now, on and off, with varying intensities, but did not report them to the DR until today (have appointment next week). Had X-rays, blood work, EKG at the ER, my BP was pretty even (100/60-normal for me), and of course, they found nothing and just dismissed the pain as arrhythmia (even though the ER DR said my EKG was normal). Am I missing something? Is there anyone here with this disorder that can help shed some light? What questions should I be asking my DR? What should I be looking out for that could be serious? Are these pains serious even if arrhythmia is the only culprit? I don't know if I should be concerned, or even embark on this wild goose chase. I really do not have any faith in DRs at this point, so I'm almost ready to just give myself to the universe and just roll with it. Any insights are appreciated. Thanks for reading this, -a

I have been doing acupuncture for over a year to help alleviate symptoms. I have had decent results with it. There was one or two times where too much of my 'qi' was moved, and I felt light-headed, had serious vertigo (I thought the floor of the room was warping beneath me), light flashed before my eyes, and felt like I was going to pass out. My acupuncturist then used a few points to bring the qi down to my legs, and within minutes, most of the symptoms disappeared. The only sucky thing about ACU is the fact that you need to establish a rhythm...you can't just do it once or twice and expect full benefit. Therefore, it can be hard to gain anything positive out of it if your schedule is not willing, if you are not receptive to your own energy, or if the acupuncturist does not have an acute intuition of maximum benefit for the sufferer(s).

^^ Same with the stress. Started with worst emotional job stress, then thumb surgery, then more of the same job stress since I couldn't work for a month. Once I healed, I was walking to work and I became short of breath, light-headed, and dizzy. Within two weeks, it was a full blown assault of symptoms.

Hey guys, Thanks for the replies. I called the doc's today, and they said they couldn't get me in until July 26th. After I let them know of my symptoms, they had an opening for this Friday. This is why I dislike dealing with physician communities. The nurse there said I should probably head to the ER if I get symptoms again. I know that if I go to the ER, they aren't going to tell me anything worthwhile. Sorry if that is a hard-headed response, but it's not worth the stress and aggravation. Last time I went to the ER (over an animal bite), the ER doc had me in tears because he said something about amputating my thumb. I had surgery and was fine. The time before that, I had a glass cut on my foot/toe area, and the doc said they might have to amputate my big toe (yea, this is when I was 10). All I needed was a couple stitches and I was ready to go. Anyways, yes, I have done a few 4 hour sessions before. My longest was 7 hours with only a few bathroom breaks for my client. That wasn't a good idea, and I learned quick. Luckily, I was spared a major episode, thank goodness. Smaller sittings take more out of me. I do not have any allergies that I know of. BP might be low, I haven't been able to check. If anything, my body temp has been low. When checked on 2 different days, it was 96.2, even when I felt comfortable. What's wierd is that I got a small spell of symptoms last night while laying down. Even felt like I was going to blackout (***-I'm laying down trying to sleep!) My heart was not racing all that much. Blargh. We'll see what Friday concludes. Thanks again, everyone.

Hey guys/gals, I don't post too much here, mainly because I haven't had any major issues with my POTS for nearly a year. However, all that seems to have changed recently. This is kinda long, so grab some popcorn... A few days ago, I was with at work with a client for almost 5 hours ( I'm a tattoo artist). I ate before I started with the client, and ate after. I developed a wierd headache which was making me sick to my stomach. Later, I was at a friend's house and could not get a comfortable postion (sitting or laying) on his couch. I left, still feeling sick. On my way home, I started having a hard time breathing. There was a strange discomfort in my chest, almost like someone stuck their hands in my chest (sorry, I don't know how to describe it) associated with nausea, sweating, the headache as mentioned, and what I can describe as mild dellusions. There was also this strange cold/tingly sensation that went from the back of my head down to my neck. I finally got a hold of myself, and after about 5 minutes, I calmed down and found myself short of breath with weakness in my legs/hips, with most of the other symptoms gone. I was driving in my car the entire time this was happening. I have been feeling a little weak and short of breath for the past few days, even while I am lying down typing this. Also, I haven't had much of an appetite lately, associated with a tiny bit of nausea. My heart is not racing, either. I have not been under any major stress, I have been eating great (up until the other day), haven't physically stressed myself, etc. I don't know what happened to make my body freak out, especially since I have done worse in the past year that hasn't triggered anything. I know you all have probably seen posts like this a million times, but I'm wondering if there is something that doesn't seem right. I have been meaning to get to the doc's for a check up and such, so I swear I'll be going soon. Just wanted to get some opinions. Thanks in advance, -a

Hey there, I haven't been on here much, but I'd like to offer my opinion on this subject. Almost one year ago, I started noticing serious emotional disturbances after some major changes occured at work. I brushed it off, thinking it's just the POTS, and let it go for a few months. Things got worse, I was conviced to see a doctor who prescribed me Lexapro, then Effexor LX. It didn't do much except make me dangerously depressed. I stopped the meds, and eventually had an emotional break down at work. I quit my job, and shortly after, my intense emotional fluctuations were gone. After talking to my doctor, she seems to think stress was the underlying factor. I think she's right. The stress was caused by personality differences when my ex-boss started treating me unfairly, especially after hiring 2 new employees. It is frustrating, and I can't even imagine what you are going through with all the cancerous genetic history. It's hard for you to step away from your family, so I apologize if my story doesn't help you much. If you can take a break and find something that takes your mind away from the stress for a little while, go for it. I hope that things get better for you and your family. Please keep your chin up, and know that others are cheering for you. Best wishes. -a

Antibiotics = Sick. I've even seen 'normal' people become naseous and 'sick' from taking them. Or it could be the stress from all of the above. Hang in there!

For those of you who dislike regular V-8...You should try a small bottle of SPICY V-8. Throw it in the microwave, add green onions, carrots, any vegetable really, and some soup crackers. VOILA. You have dinner and your daily sodium intake! It does have a slight spicy zing, so if you don't /can't do spicy, this is not for you. My roomate cannot stand V-8, but I gave her some heated, and we concluded that without any veggies, it tastes like a poor man's vegeatable crab soup.

I discovered that whole salt/fluid ratio when I would start to get symptoms, and the first thing I would do is get a cold drink of water...which actually made things worse. I started drinking Gatorade when I could not eat anything, and found I didn't get symptoms as bad. Salt, who would have guessed? I usually drink a bottle of gatorade a day. Once I'm done, I fill it halfway with water, and drink that the rest of the night. Works like a charm. Even with all the excessive heat, I haven't had any symptoms. Oh yea, not only does your brain swell in that hypoatremia condition, but I've read so does your other organs (liver, kidneys, etc.). They basically get 'diluted' with so much water, they cannot function. Truly amazing.

Ahhh, I see. All explanations make sense. Thanks for the insight guys/gals!

Just a quick question about weight loss... How many of those with POTS have noticed mild or severe weight loss? I have been the same weight for years, even when I was diagnosed with POTS. It seems, however, in the past few months, I have experienced slight unintentional weight loss. It's not that im wasting away (and I'm not complaining, either), but it just occured to me that for almost the first year of POTS (and years prior to POTS), my weight had not changed. I have lost a little less than 10 pounds, so it seems insignificant to call the doctor. My diet has not changed other than I have been eating smaller, MORE frequent meals. I've also noticed I lose my appetite every once in a while. Exercise hasn't increased, either. So perhaps this weight loss is an effect of [raised] metabolism due to eating more often? Again, it's just curiousity. I think if I surpass 15 or 20 pounds, technically it becomes a concern. Thanks for any opinions@

I do not take medications whatsoever, not even tylenol for headaches and such. I stay mentally active, and drink a bottle of gatorade and water throughout the day (I found that drinking too much water will make symptoms worse). I try to eat crackers and things throughout the day. If I'm in a crappy mood, I may take herbal supplement (st. johns wort, skullcap, etc.). Granted, I don't seem to suffer as bad as some, and currently, I'm not having an episode/serious symptoms. It seems mopeing about all day worsens symptoms, too. My job requires serious mental devotion that keeps me active, and I love it. That is my drug, so to speak. Hope things work out well for you. I'm sure you will be ok. Just listen to your body if things get a little crazy. Good luck! -a

That sounds like most of my 'black-outs.' Most of the time I lose conciousness for all of a split second, and become concious just in time to feel myself fall (but not feel the ground hit). My line of work deals with the possibility that my clients may pass out. I can tell when they don't feel well by the way they look. Usually the skin is greyish or pale, as are the mucous membranes, their eyes do become kinda glossy (almost like they are crying without the tears), and their skin may be cold/unusually textured.

Thanks again, everyone. I appreciate the welcomes and replies!

Well, it's good to get so many different answers. I do excercise...I am fortunate enough to still be able to walk to work (about 1.5 blocks), my job occupies 3 floors and I am constantly up and down, and I also ride a moped (in order to start it, I have to pedal/push it). As mentioned before, I get POTS episodes that will last for weeks/months, although I may experience a few symptoms on a day to day basis. In return, I am usually episode free for months before it hits me. As far as PMS being involved, I've actually had the moodiness start prior to one period, and not go away until well after the second period. So I'm pretty sure it's not PMS. I have no major symptoms currently, but I'm so angry one second, and literally, the next I'm calm and euphoric. My perception of people and events is directly related to what I'm feeling at any given moment. So sometimes I become furious with my coworkers for no rational reason, then the next I am totally cool with them. I was tested for Thyroid disorder, Adrenal disorder, and cholesterol. All were negative. I am attributing what I've been feeling to the POTS, but have not heard of people having such hardcore mood swings. Meh. I suppose it is possible. Such is life. I love my job, and I love my mopeds. I'll risk the discomfort for these things.

Thanks, everyone. I had spoken with my doctor, unfortunately BEFORE I started noticing the moodiness. Sometimes I feel like a real **** calling my doctor everytime I have a 'new' symptom. The last time we spoke, she said my symptoms sounded like depression. I looked up the actual symptoms of depression, and found that mine did not coincide. Sure I felt fatigued, but I had more of an interest in my hobbies than I had for a while. Didn't feel suicidal, no aches or pains, didn't feel emotionally void. That's why I figured I'd give this forum a shot. 900+ members might have a little more experience than one doctor... BTW, my full name is Angelique, and I usually go by Angel, or Anjuu in this case. Call me what you'd like, I'd respond the same. Thanks again, all!

Hey everyone. I was diagnosed with POTS last year. I am 22 (although I feel 80 sometimes). I have read through some posts, and figured I throw a few more questions out there. I am currently working, and trying to stay involved. I feel like I may have it easy compared to the other cases I've browsed through. My symptoms are extremely varied, and my episodes seem unprovoked (although they seem to occur in an undetermined cycle). I was curious if extreme moodiness is common? I am coming 'off' of an episode, and I feel like my whole train of thought has completely changed (or maybe gone back to normal?) It seems with each episode, a 'new' symptom develops. I am attributing this intense moodiness to the lack of oxygen thing associated with PTS? I've never been one to suffer from PMS, but during my episodes, it's like persistent PMS...Furious one second, calm and collected in another split second. I think that's the most debilitating part thus far. I can cope with the physical problems, but the mental ones are starting to destroy the fragile social network. Seems like my memory is heading on its way out, too. I do not take medications, but I try to do the 'eating right' thing. I have found that Gatorade and crackers have been staples in my diet that make me feel a little better. Since being diagnosed, I have noticed I have progressively become weaker, and have been shedding a few pounds as I progress (regress). My PTS symptoms usually last 2 weeks-2 months. Included are the common lighehadedness, dizziness, nausea (ESPECIALLY after eating), loss of appetite, shortness of breath, imbalance, etc. The only visual disturbances I have noticed are tunnel vision, and high contrast vision. The high contrast vision is like a reverse of blurred...Objects that I look at become sharp in focus, almost to the point where they are only recognizable as a colourful shape. Anyways, I think you all know what I'm talking about. I think they only real-time person who has been truly able to relate is a coworker who was diagnosed schizophrenic/bipolar. Everyone else recognizes the physical symptoms, but I don't think they are aware/accepting of the mental ones. Little help, Please? Sorry for the novel. Thanks for letting me rant. Glad to meet y'all. -a