cmtaylor5

Our circumstances sound very, very similar. I also get the weird breathing thing. I really hated that feeling. Also, I would rather do almost anything than stand in one place holding something heavy. I have never gotten dizzy, but I feel exhausted and eventually, very, very ill after a while. When I'm in the sun, I can often feel my heart pounding. I never associated the sensation with a racing pulse, probably because I just thought it was normal. After my first episode of an adrenaline surge with resting sinus tachy that lasted over an hour, I became very aware of my pulse rates and found that it was racing lots of times when I didn't know it. I would usually be very fatigued and feel just really crummy. That's when I started to realize that my pulse was so fast sitting in the sun. I believe I was misdiagnosed with IST for a couple of reasons. The first is because I don't believe my doctor knew anything about POTS. The second is because whenever I was in his office, I as nervous, and my pulse would always be in the high 90's. The third is because I never mentioned to him that I was seeing other doctors for GI issues, breathing difficulty, vision problems etc... I am not a medical person and never in a million years did I think all these things could be related. An internist was seeing me for everything and I think he just thought I was a mess. He would send me to individual specialists and I would only discuss that particular problem with them. I'm sure that I've had POTS for over 7 years, and it's very possible that I've had it my entire life. I had no way of knowing that rolling over in bed shouldn't make your heart rate shoot up to 165. How could I know that? For me, it had always been that way as far as I could remember. The thing to remember about POTS is that it's not a disease, it's a syndrome. I'm better, but I still hang around the forum to learn and listen to other's experiences and offer support to people who are feeling like they won't ever get better. The more time you spend on the forum, the more you'll come to realize that there have got to be many, many reasons why different people have been diagnosed. To get a POTS diagnosis, all you have to really have is an increase in heartrate of 30 bpm or over 120 upon standing. The electrophysiologist I see says a normal resting pulse excludes a dx of IST. Maybe it's all semantics, I just know that I live a good life since my POTS dx and I was exhausted and becoming progressively worse before. Best of luck with your career aspirations. I hope you can find a way to wear that lead! Carolyn

Hi, Yes, my MVP used to show up on an echo, and it doesn't anymore. I also have a 12 year old son with some POTS symptoms. I recently took him to a pediatric cardiologist at the medical teaching college here. He found MVP. No doctor had ever even picked up a murmur on him before, but he was able to ellicit the murmur with a couple of different positions. He then verified it with an echo. He told me that it was in the "resolution stage" and that it should be gone in 2 years. (ny son has a re-check to be certain). I told him that I was always told I had MVP, and had to take profalactic antibiotics for dental appts. etc... but that it hadn't shown up on my most recent echos. I also told him that other cardios I'd seen had said, "So many people were misdiagnosed with MVP in the 70's and 80's....." This doc said that in fact, they were probably not misdiagnosed, but there is evidence now that MVP resolves in some people. This guy has a tremendous reputation in the medical community and I trust his opinion, so I didn't question him any further, even though it was the first time I'd heard such a thing. I guess we'll know for sure at my son's follow up. Carolyn

Sorry, Forgot to add that I never get dizzy or presyncopal either. I was a runner, and I would run for 50 minutes 6 days a week with a heart rate that was always over 185. My blood pressure, which is normally low, doesn't really plummet, either. During "adrenaline surges" I just get an extremely narrow pulse pressure or an extremely widened one. I was misdiagnosed with IST before my dx with POTS. I was put on a calcium channel blocker because I'm an asthmatic and was really ill from it. Be careful of an IST dx. Sounds like you're very informed, but I was on my way to an ablation (even though my resting heart rate was 55). Everything turned around for me once I had the POTS dx. I also would get heart rates of over 160 sitting in the sun. I also thought it was normal. After years of this, when my POTS symptoms got worse, with heart pounding (even with a normal heart rate) and episodes of resting tachycardia, I started to become extremely fatigued. Carolyn

I had MVP. It resolved in my late 20's/early 30's (just about the time I started to have some signs of dysautonomia. Carolyn

Yes, my Toprol controls my rates entirely with the exception of extreme exertion. I take 25 mg per day and live a normal life with a few minor limitations. Carolyn

I have recorded episodes of sinus tachycardia with an event monitor in the high 190's. Around 210 was the highest with a pulse monitor. I have never had any episodes of SVT. All of my strips show sinus tachy. Before I was treated, most of the time, my sinus tach ran between 165 and 185. Carolyn

I had this symptom before I was diagnosed and treated. It was horrible. I felt like I had to "remember" to breathe. After I improved I stopped getting it. Carolyn

I don't believe mine is a result of a viral illness. I live a normal life with a few limitations. I was symptomatic for at least 7 years before dx, and pretty much disabled for 6 months prior to dx. With proper medications, I'm satisfied with my quality of life. I think you can get better even if yours was not brought on by a viral illness. Carolyn

I've had this problem for years. Just bumping into something small leaves a huge bruise (even if it doesn't hurt when I do it). One doctor I had noticed the bruises, and ran a blood test of some kind for a bleeding disorder, but it came back negative. Since my POTS dx, the neurologist I see says that it's related to fibromyalgia. It is pretty unsightly. Carolyn

I had disequilibrium and felt off balance when my POTS symptoms were at their worst. It disappeared as I improved. Carolyn

Hi, I used to have a problem with chronic sinus infections. Antibiotics in general usually give me terrible runs of PVCs and/or PACs and I hate taking them. I have only taken Avelox once. It was prescribed for me by my GP along with steroids, after a round of another antibiotic that did nothing to get rid of my infection. I took one dose and an hour later I had heart pounding that lasted over 12 hours. During that time, I had my very first attack of resting tachycardia (my heart rate stayed between 165-180 at rest for a few hours, then gradually came down). I have not taken it since. A good friend of mine is an Ear, Nose, and Throat doctor. He was using an antibiotic/antifungal mix that you spray into your nose instead of taking orally. I think there might be a third ingredient in it too, maybe a steroid for inflammation? Anyway, he mixed some up and gave me instructions how to use it. He thought I might tolerate it better since it only goes into your nose, and I'm so med sensitive. I used it and it worked. I have not had a sinus infection since. That was 2 1/2 years ago. I think it is pretty common now. You might want to look into it. Carolyn

Hi, I feel guilty always answering these posts, but I also feel guilty not answering them. I personally believe you have reason to have hope and here's why: Last June before I was properly diagnosed I couldn't get out of bed before 2 pm everyday. I couldn't take a hot shower or bath without needing three hours to recover. My GERD, other GI issues, and fatigue were unbearable. Going from an A/C car or house into the summer heat even for a few seconds started my heart racing and made me light headed and feeling like I was going to die. Rolling over in bed at night sent my heart rate from the 50's to over the 160's. I could not stand for any period of time without tachycardia up to the 180's. I had a HUGE pile of things I needed to return to the store that I had accumulated over a peroid of months, but couldn't fathom the idea of standing in line to do it. I had weird shortness of breath at rest and terrible left sided chest pain. I couldn't spend more than 20 minutes in the grocery store without feeling like I was going to die. I could no longer volunteer at my kids' schools and I could never have held down a job. Folding laundry (using my arms) was a nightmare. I was a runner, but any exercise meant a heartrate pushing 200 from the get go. My heart was pounding all the time, even when my heart rate wasn't fast. The absolute worst were the bouts of resting tachycardia: heart pounding for a few hours resting, and then a sudden jump over 160 that would gradually come down over a period of hours. It's now 11 months since I was diagnosed and started treatment. I slowly improved over the first 3 months, and then steadily. By 6 months, I would say I was funcitioning pretty normally. 11 months later, here is what I accomplished yesterday: Got up at 6 am to take my kids to morning camp. Took the dog for a haircut. Went grocery shopping. Gardened for almost 2 hours in 95 degree heat (I always stay hydrated and remember not to repeatedly bend at the waist). Picked up my kids, went to lunch with a friend and then to the library. Came home and cleaned my house. Swam laps for 40 minutes. Made dinner, cleaned the kitchen, visited with a friend and went to bed. I woke up this morning at 6 am again, and don't feel exhausted or drained. There is no way I could have done this (or even 20% of it, last June). I was lucky, for me, finding successful treatment was not a problem. I know for others, it has taken a long time for find the right combination of meds. I do know that if I take my medication late, or forget, I am right back where I started. I also have break-through tachycardia upon strenous activity, and I'll never run again. It has been 11 months since I have had any resting tachycardia. I do make accomodations for heat, inclines, climbing stairs, etc.... I have accepted that I will not ever be the same, or "normal" again, but I'm grateful for what I can do. If I chose to, I could easily manage a full time job. There aren't any "bad days" anymore. Just like everybody else, I don't have a crystal ball. Maybe this will get worse again, but then again, maybe not. If you are looking for hope, all I can tell you is, from personal experience, I think there is reason to have some. Best Wishes, Carolyn

I have always been just about as extroverted as is humanly possible. That hasn't changed since my dx. Carolyn

Hi, Diana, Although I have never posted about this, I also have a son that has POTS symptoms. His are the same as your son's, but without the fainting (I don't have a fainting problem, either). He also experienced unexplained anxiety and heart racing. He is also hypermobile and has a lot of Marfan's characteristics. I found that it was pretty easy to get a consult with a pediatric cardiologist since my dx was already in place. We were new to the area and I called the peds cardio that his doctor had recommended and spoke with the nurse before his appt. I wanted to make sure he was familiar with POTS, and that he treated it. I was very surprised that the entire practice was very familiar with POTS. It seems that these symptoms are (?) more common in kids. I was worried that they were going to do a TTT, and also that he would just be poked and prodded in general, and that maybe it would turn out to be nothing. The nurse ordered an event monitor in advance of the appt. at my request (this turned out to be a really smart thing to do), so the results were already in at his appt. All of his tachycardia turned out to be sinus tachy (the same as me). He was also physically evaluated (mostly for Marfans) and had an echocardiogram right during his exam. The doctor found no evidence of a bulging aorta, but did find MVP. He felt it was resolving (no doc had ever picked this up on examination before, but the cardio listened to my son's chest in a variety of different positions. It was squatting that illicited that murmer/leak.) I also had MVP as a child, and it also resovled in early adulthood. In the end, the doc told me that he thought all his symptoms were related to MVP. He didn't want to medicate my kid, and he also didn't restrict any activities. He just said to use common sense, and he said, "I'm sure you've learned tricks to accomodate your symptoms by listening to your body." He said that my son should do the same thing. Stay hydrated, sit down when you're tired, and no long periods of standing in one place (this was a big problem for my son). He has to go back in 2 years to see what's going on with the MVP, or sooner if he has an increase in symptoms. It has been several months, and he's doing fine. I also asked the doctor about the likelihood of this getting worse and he told me that "all the evidence isn't in" but it would be more likely that he will not be effected once he gets past puberty (he's about to turn 13) since he's male, and that he will just outgrow it as the MVP resolves. I'm hanging on to that. Sorry this is so long, but I just wanted to share how it happened for us. I really dreaded the possibility that he would be poked, prodded, misdiagnosed, etc... It just seems like it was easier for him, maybe because the doc was so familiar with the condition in kids, or maybe because we were working backwards from a POTS diagnosis, instead of trying to find our way toward one. Best of luck to you and your son! Carolyn

I used to have absolutely identical instances of this. I haven't had an episode for 11 months, though, ever since I started to take a time released beta blocker daily. I hate that feeling you get when your heart rate is slowly moving up, and then suddenly it starts pounding away over 160. Mine was also always sinus tachycardia (which is a good thing, of course). I also took a beta blocker along with 1/2 tablet of Xanax and it would calm things down, but I noticed that every single time this happened, I got my period the next day. Is there any correlation with your cycle? My friend who is a doc told me to try taking the beta blocker a few days before I was expecting my period. It worked when I remembered to do it. Hope you are feeling better. I know it's hard to shake that feeling that it will happen again. Carolyn

I have asthma, and I can take albuterol, but I hate it because of the jittery/tachy feeling. However, after I was diagnosed with POTS, my doctor prescribed Xopenex (not sure about that spelling). It is the same thing as abuterol, but sort of the opposite. My doctor explained to me that all drugs have a left hand side and a right hand side. He said that Xopenex is the "left hand side" of Albuterol. I know I'm not explaining this well, but anyway, Xopenex has the same effects as Albuterol, but without the jitteriness and tachycardia feeling. He was right. I don't use Albuterol anymore and I don't have to weigh the unpleasant asthma symptoms versus having a bout of uncontrolled tachycardia. You might want to ask you doctor or pharmacist about it. Sorry for the lame explanation! Carolyn

tachycardia Carolyn

Hi, I can sympathize. The heat definitely makes me symptomatic. Even though my POTS is very well controlled, being out in the heat for more than a few minutes and my heart is pounding and I have tachycardia. Here is something I've been doing in the 90+ degree weather we have in Georgia: I have oblong ice packs that I wrap in a bandanna and tie around my neck. The ice against my carotid arteries really seems to help. Along with that, I sit under a large shade umbrella. I also have a young son that I don't want to leave unsupervised. We just finished building an inground pool and it has been a godsend, but if that isn't an option for you, you can try keeping a dishpan filled with ice water outside and put your feet in it. It sounds silly, but these things make it possible for me to stay outside with my kids. Best of Luck, Carolyn

I had a very bad experience with Verapamil. I was exhausted, confused, and in general felt like I was going to die (sorry to be so dramatic). I took it when I was misdiagnosed with IST prior to my POTS diagnosis. My doctor preferred it to beta blockers since I'm an asthmatic. I took it for 3 weeks, and have only a very limited memory of that time. My friends still talk about how "out of it" I was, and how terrified they were. When I was diagnosed with POTS later, my new electrophysiologist told me that in my case, "It was the worst drug choice possible". I'm not sure why he felt that way. If you are seeing an EP or cardiologist that you trust, they probably have a good reason for prescribing it, but if you have doubts, I'd ask for an explanation. I am now on a low dose beta blocker, and I consider myself to be just about 100%. Hope you find what works best for you. Carolyn

Hi, For me, once I started the beta blocker, there was in improvement right away, but not all my symptoms resolved immediately. I still had some heart pounding, and occasional shortness of breath. I had one "surge" about 2 or 3 weeks after I started medication. I was also still tired. Gradually, over a period of months, my symptoms all quieted down. It has now been 9 months since I started medication and I can honestly say, I've had heart pounding (very minor, I was able to fall asleep easily with it, and it used to keep me up all night) once this month, I haven't had the shortness of breath feeling in over 6 months, I'm never dizzy anymore, and my blood pressure is stable with one or two drops over the past 3 months. Stick with it. Last, month I tried to answer the "energy level" quiz at the forum and my response was that I was functioning at a "9" capacity. Even with summer fast approaching, this month I would rate myself as a 10 everyday. I don't know if this will last forever, but I don't feel like a "sick person" anymore. Good Luck, Carolyn

Hi, Linda, I've read more than once that dysautonomia can cause a type of hypoglycemia called "reactive hypoglycemia" (which is the opposite of diabetes "hyperglycemia"). I don't have a good enough understanding of how it works to explain it, but it seems like it would be possible that if dysautonomia can cause one, maybe it could cause the other. Maybe someone with more medical knowledge at the forum can take an educated guess. It seems like there could be a connection for you. Carolyn

I would say that I function very well. Before I was diagnosed, I was very tired, especially in the mornings. I could not get up and live my life until around 2 pm. Since dx and treatment, I have gradually gotten better and better. No one would know I have a chronic illness now unless I told them. I am lucky to be a stay at home mom, but I think I could handle working now, even full time. I do all the cleaning of our house, with a few modifications (I will not stand and hang laundry, and I fold it sitting down, for example). A few other modifications: I take a bath instead of a shower on tachy days. I will dry my hair sitting in a chair (I very rarely have to do this anymore) on bad days, too. I cannot wear high heels. Walking in them makes me have a high heart rate, (I think it's from being up on "tip toes" or something), so I only wear flat shoes. I will not walk on inclines for exercise, and I have accepted the fact that if I want to run, my heart rate is going to be pretty near 200, therefore I don't run anymore. I also really restrict my activities in the heat. We live in Georgia, so I'll only garden in early morning or late evening. I've recently started cutting my lawn again, and I only do that when it's cool and I take very frequent breaks. Tomorrow, I'm going with my son's class on a field trip at the local teaching hospital/medical school. It is a 5 hour field trip and we'll be walking or standing the whole time. I wouldn't have dreamt of volunteering to go on this trip last year. It's only the past month or two that I would feel confident that I can do it. However, I would not volunteer for a similar trip if it were outside. I take my beta blocker religiously, I make sure I stay well hydrated and I always give myself permission to rest whenever I feel tired. It's taken me most of this year to accept that I'm probably never going to be the same person I was before POTS, but I'm grateful for the vast improvement I've made in the past 9 months. I wish every person who visits this forum will eventually be able to feel "normal" again. Carolyn

I was also originally diagosed with IST. Most doctors won't dx you with IST unless you have a resting heartrate that is over 100 as well as an inappropriate heart rate with standing and exercise. What's your resting heart rate like? The doc who misdiagnosed me didn't realize I had a resting pulse in the low 60's as I was nervous in the office the day he made the dx. Later, when he found out that I had a normal resting pulse, he admitted that he had made a mistake. I don't think all cardiologists are familiar with POTS. Also, I was a former healthcare worker, and my first cardiologist immediately jumped on IST because it has an incredible prevelance in nurses and female healthcare workers. As soon as he found out I had worked in healthcare, he was positive and really didn't even order any more tests. Do you work in healthcare, by any chance? I agree with previous advice. Find somebody who knows something about POTS and see what they think your dx should be. The treatment for IST is usually beta blockers, which also work for some POTS people, but I was also given a calcium channel blocker that just about killed me. Usually calcium channel blockers are not given to POTS patients. Good Luck, Carolyn

Hi, Michelle, I've had two. The first without any medication at all. The second with the twilight meds. I didn't have a problem with either after. The first one was a little scary (the nurse was freaked out that I was awake, and the doctor had to keep reminding her to suction my airway), but was over really quickly. The best part was, I could just get up and go home afterward. My doctor hadn't really done it that way before, but he told me that it was much easier than working with a sedated person. The second one was a different doc who flatly refused to do it without medication. Other than feeling a little groggy afterwards, I had no problems and felt fine later that day. Good Luck, Carolyn

I lost my sense of smell and taste completely after and URI followed by a sinus infection, so I have to agree with Be Still. It was a really weird feeling not to be able to taste anything! It lasted for several weeks and then gradually came back. Good Luck, Carolyn