New here...

[HT65]

Hi,

I've been reading this site with great interest. Some brief history...I apologize if this seems a bit on the long side.

In late July 2003 I suddenly found myself being rushed to the local ER, with an extremely high heart rate (over 200), with violent palpitations, dizziness, chest tightness and pains. Actually it felt like my whole body was being shaken by my heart beat. This came on suddenly while sitting at my desk doing nothing more than typing an email. At the time I was not experiencing any stress, or anxiety. I felt lightheaded of course, became pale and felt liek I might go down..but I stayed on my feet. When I got to the hospital, and was laying down on the table in the ER, my heart was still racing along at 198 bpm. An IV insertion was made, as well as oxygen applied. I had a 12 lead ECG, chest xrays, blood tests, aspirin, and 6 hours later my heart rate slowly returned to the mid 70s. The ER physician told me I likely had SVT, and sent me home. At the time I had no idea what that was, but I was relieved to learn I hadn't had a heart attack. I'm only 38 and was in fairly good physical condition, and I have had no history of heart problems, or high cholesterol, heart defects, or anxiety attacks. I immediately started researching SVT online when I got home.

However, the high heart rate did not go away, although it has never risen quite as high as it did that day. I was given a Holter Monitor about a month later, and I was to wear it for 48 hours. Of course at the time I wore it, I thought I was doing better, and thought they would not likely find anything significant. Then I was to see the Cardilogist 2 weeks later, the same day I was scheduled for a echocardiogram. The echo went well and showed no structural heart problems. The holter monitor, however, showed a very high heart rate nearly all the time (averaging 110 bpm over 48 hours) with rates regularly hitting 174 bpm, as well as 140+ incidents of sustained SVT or something like that. Apparently my heart was way out of normal range on the high side even while sleeping. Yet the ECG showed no sign of an electrical problem with the heart, only a very high heart rate...according to the cardiologist. I also had other symptoms that had developed, I lost a lot of weight (mostly muscle), at the time 15 pounds in a matter of weeks, and this sudden weight drop had preceeded the first incidence of tachycardia. I also felt "wired" (even though I had given up caffeine as requested), my eyes hurt like there was a pressure behind them, I was tired all the time and weak, I was irritable and experiencing sudden anger and mood swings, my hands had a tremor, I experienced periods of diarhea and constipation, I was often too hot even when nobody else was, and would wake up soaked in sweat during the night, I suddenly couldn't stand the sun, and I generally felt and looked terrible. I suddenly went from a healthy looking individual to a wreck in a matter of a month and a half or so. Since the ECG showed no obvious sign of an electrical abnormality, the cardiologist figured it could be hyperthyroidism...but my GP had already had me tested for this, and it turned out negative. The cardiologist ordered more thyroid testing in order to rule it out totally, and perscribed Sotalol for my high heart rate. All the thyroid tests came back normal. Since that time I have not heard from the cardiologist, even though he was supposed to have followed up by now, and despite me trying to get him on the phone. However, this is Ontario, and we have a doctor shortage and they are all very busy.

Well, it's been almost 3 months since my first heavy attack of tachycardia, and one month since I was first prescribed Sotalol. I still have not had any diagnosis. My weight has dropped more, and I still feel fatigued and weak (especially my legs). I look dramatically different from June to now. I have started to have other symptoms as well, like periodic stomach pains, and a weird burning sensation around my chest and back area...and I also seem to experience sudden chills. Chest pain (like a brick on my chest) has been fairly constant since it all first happened. Interestingly, when I first started Sotalol, I bought a good heart rate monitor which I could wear all day. One of the first things I noticed was that my heart rate would jump at least 30 or 40 bpm whenever I stood up, and it would remain high, and get higher, until I sat down again. The change is very quick. At first I thought it seemd like a big jump, but also assumed that is a normal reaction to standing. I also thought it might be because of the drug. Then one day on a tachycardia discussion forum, a young woman there clued me into POTS. I didn't know what it was, but began looking into it immediately. I was quite astonished at what I was reading. I had experienced many of the symptoms, many of them sounded much like hyperthyroidism. That was interesting. But what really struck me was reading that the hallmark of POTS was a jump in heart rate (30-40 bpm) when standing up. I've since tested this many times with a my bp/pulse rate monitor, and the effect is consistent. However, I do not seem to experience any drastic change in bp. I stopped taking Sotalol because I felt it made me worse, and I am on no other medication at this time...yet this heart increase, when standing up or lieing down, reamains dead on consistent. I feel somedays like I could be feeling better only to find the next day I feel even worse. My work collegues, and my boss, are concerned about my apparent degeneration. I have to travel a fair bit for work, and I am very busy. Work has never bothered me though, and I like to be busy. Now I am finding it difficult, and it's getting increasingly harder. I still have not been able to contact the cardiologist to get him to follow up, and my doctor appears all to eager to put all this down to anxiety. I know that is total rubbish, however. I have an appointment with her next week, and I intend to make my point that this requires more investigation...like a tilt table test at least!

I read many of the stories here, and I see the frustration with the GPs, and I can really sympathize. But I am becoming more and more convinced that I am experiencing either POTS, or perhaps "innapropriate sinus tach". If anyone here has had a similar experience to mine, or has any insights, I'd love some feedback. Thanks for reading my long post. Take care.

[ethansmom]

Hi and welcome to the POTS forum!! I can relate to exactly what you are going through. About 7 years ago, at the healthy age of 15, I was sitting in my room calmly and quietly listening to music when my heart rate suddenly shot up out of nowhere, and felt as if it would pound out of my chest. I got chest pain, could barely breathe, and felt lightheaded. I went straight to the hospital, where they gave me an IV med to stop the 220 beats per minute heart rate I was experiencing. All the blood tests and the EKG came back normal, and I was diagnosed with SVT and sent on my way. I followed up with an endocrinologist and had a thyroid scan done, which also came back normal, as well as seeing a cardiologist and having the holter monitor come back normal. I went on about my life and hoped it would never happen again, but I never felt quite the same after that. I started having a lot of GI problems, and was later diagnosed with food allergies (which I now know has a lot to do with POTS). When I was 18, I was asleep in bed and awoke to find my heart pounding away again, and I called 911 since I was home alone. The paramedics ad me hold my breath and bear down, and the HR slowly came back down to 110-115 after a few minutes. It was less than a year later that my life changed drastically when I began to experience severe lightheadedness, fatigue, more stomach problems, and a whole array of other shocking symptoms that changed my life dramatically. I was lucky enough to find a doctor who was able to diagnose me with POTS within a months time, and it was about 6 months before I really felt decent after that.

I would definitely recommend pursuing a tilt table test based on the symptoms you are describing. Many POTS patients, including myself, do not experience much change in blood pressure when standing. My prominent symptom is the tachycardia upon standing, which causes all the other things, such as lightheadedness, to occur. If I'm not mistaken, the reason you may have felt worse when taking the Sotalol is because there was nothing to counteract the slowing of your heart rate. The heart is beating fast to try and compensate for the body's upright position, and when we slow the heart down, the patient can feel much worse. I am taking a med called Pro-Amatine & Florinef, both of which help increase blood pressure to counteract the slowing of the heart. Together, they work in sync to keep things running more smoothly.

I hope you can find someone soon who can help you get to the bottom of this. It's hard for me to say, not being a medical professional, but a lot of the things you described (in regards to the SVT) were uncanny as far as being similar what I've been through!! My doctor seems to think that SVT is seen in a lot of POTS patients. Please keep us updated!!

[MightyMouse]

Hmmm. Not sure if your issues sound exactly like POTS, but it certainly does sound like you've got some ANS issues. There are a whole host of disorders...including a problem with your sinus node that could provoke tachy, or even a genetic disorder that impairs the body's ability to appropriately handle certain chatecolamines, such as epinephrine and/or norepinephrine. A tilt table might help to shed more light on what's going on...but it may not answer all the questions either.

I would think a TTT would be in order and then take it from there, in conjuction with your doctor. Nina

[HT65]

Thanks for the responses. A bit of an update. Seems while I was typing my post, the elusive cardiologist called (working late I guess), and left me the following abrupt message..."ummm....I looked at your tests (thyroid I guess), and there's nothing wrong...(I already knew that, my GP gave me the results)...so I guess there's nothing else...good bye." That was it!! Is this dude serious? So he perscribes a drug which made me feel worse, and was supposed to be monitored to begin with (but was not, except by me), then just says well I guess that's it. I don't even take the drug anymore...I had to stop taking it, and of course the tachycardia has returned along with some of the other problems. I don't get it. What does he think, I was just going to take this drug to treat a symptom for the rest of my life, and never have to talk to him again, or what?? No further inquiry, no actual discussion with me. he was so sure he had it all figured out with the hyoperthyroidism suspicion, and then when it's not that, he dropsthe whole thing like a stone. I'm 38 years old, and now I feel more like 68. This guy is only in town every 2 weeks, and it takes a lot to get a hold of him or to to get him to call a person back...now that I've missed his call, I expect I won't be able to contact him again.

Grrrr...this is going to be a nightmare, I can see it now. Well I'll try again with my GP next week. Unfortunately if she doesn't want to help, there's not much else I can do. No other doctors here, or anywhere near here, are taking new patients. That's just the way it is in Ontario these days. I have to go on a business trip tomorrow, which I do quite a few times a year, I hope I have one of those good days tomorrow because it's going to be very busy. I don't know what else to do if my GP doesn't get serious. This *****.

[justin]

yep, he's serious. welcome to the wonderful world of living-with-mysterious-orthostatic-symptoms-under-the-ontario-medicine-regime. blame the tories. it's their fault. all those nice health cuts in exchange for a tax break for those who don't need it...

i'm thinking (keep saying this but haven't done it yet) of going to see the docs in montreal at the jewish general hospital. apparently they specialize in this thing...

[MightyMouse]

I'm with Justin...the doc was serious. Rather than say "I don't know what's wrong" (thereby acknowledging that you still have an undiagnosed problem), he's been trained to say "there is nothing wrong because I can't find anything wrong."

Don't be completely disheartened about it--there ARE some gems of doctors out there--clearly, this guy isn't one of them. If you haven't looked at the DINET physician's listing, you should do so to make your odds a bit better. Also NDRF has a physician listing too. Here are the links to both

http://www.dinet.org/physicians.htm

http://www.ndrf.org/physicia.htm

Certain areas of the country seem to have more resources than others. Most of the doctors are in NYC, Boston, Baltimore/DC area, Toledo, and a few others at Vanderbilt and Mayo Clinic. I live in Philly and it's taken me years to find a team of good specialists--but it can be done. I've got a great Gastro, Cardio and Neuro now...along with a decent (but not great) family doctor. Sadly, my GREAT family doctor moved to Virginia last year and I had to start over on that search.

let me know if I can help you in any way. Nina

[nicole]

Hi,

Your symptoms sound just like mine did. When I was 23 my heart rate went up to 200 and I got all the same symptoms as you (normal BP). They rushed me to the hospital and then the doctor wheel started. I was put on tenormin and xanax then told I had tachycardia. I lost tons of weight then got pregnant and felt normal again. I felt good for about 12 years then I thought I was having panic attacks and the cycle started again, this time I went on paxil and was told I needed an ablation (SVT) thank God I did not get it. Three years later went off paxil and again it started. I took the TTT and it was negative but my great cardiologist recognized the symptons and told me to research pots with low BP and tachycardia. I now eat lots of salt, water and Proamatine and I am starting to feel almost normal. Dont give up it took me 15 years. I am so glad you can still work, I am now able to go back myself.

[HT65]

Justin, MM, Nicole and Everybody...

Thanks for your responses. I'm back from my trip as of yesterday. The first two days were sort of rough, I was anxious, very tired, my legs hurt, and I was getting that weird 'burning" sensation in my chest muscles and upper back, as well as the accompanying super sensitive skin in those areas. I also experienced a few short lived episodes of sudden heavy SVT palpitations when bending and getting up quickly. But, it got better the last 2 days. I'm feeling pretty good today, not as fatigued as usual and no other symptoms, except the usual high heart rate while standing. However, I have more strength in my legs today, and more energy. This is how it can go, I can feel good and think I'm getting better, then all of a sudden I feel lousy again. As I'm sure you all know, this can be discouraging and frustrating. I bought some new mulit-vitamins today...thought they might help.

I am seeing my GP on Wednesday. I plan to go armed with info and the data I have collected on my own regarding heart rate, BP, and symptoms. I am planning on telling her I need to see an Electrophysiologist and obtain a TTT as soon as possible. I just need some sort of proper diagnosis so I can deal with this. I just want to get back to my life. I'm not interested in a sick leave from work (although it's available), or anything else..I need to work. Okay some more questions...

First, you all have much more experience with this than I, so perhaps there are some useful tips you could pass on regarding the best way to talk to my GP without getting irritated or getting the "brush off"? My doctor can seem (at least to me) to be very off putting, and unfortunately I am becoming fairly ticked off about it. She should know by this time I am not someone who over dramaticizes things.

Secondly, since I do not experience any hypotension with my postural tacycardia, will they still do a TTT? I already know my heart rate takes a big jump when I stand, and that can be easily shown. I get the impression from some of what I have read on the web, that the test is more for people who passout or faint, or experience low BP while standing, or sinus bradycardia. So, in my case, since I have seen not noticed a significant drop in BP after standing for a 10 minute period (although perhpas it just takes longer), is this test actually appropriate? However, having said that, I do have to sit down after a while standing, and I have experienced periods of lightheadedness. I have not taken my BP during those times because I usually do not have my cuff with me, so I do not know if there is a drop or not.

Third, what about an EP study? Is there any point in getting such a study done in my case?

Last, this may sound weird, and may just be a coincidence...but the last few days I have done all those things they say not to do, like drink real coffee and have 2-3 glasses of wine or beer at night, and strangely this coincides with feeling better. Odd, but I thought it was interesting, since I've been avoiding those things for a while now.

Thanks for all responses, and I hope you are all feeling well.

[justin]

sometimes a ttt also includes an injection to see how your heart responds to stimulus. usually people with hypotension don't have to get that far, because they experience syncope and/or tachycardia just from the tilt. or at least that's what i've been told. ?

so maybe a ttt would be useful. maybe your postural tachycardia could be related to the release of stress hormones. there could be a bunch of reasons, and hypotension isn't necessarily one of them.

coffee and alcohol. i can't have either anymore; i don't care too much about the coffee, i stopped drinking that years ago, although i miss chocolate/cocoa. i can't even tolerate the caffeine from that anymore, it triples my resting heart rate with, say, a slice of cake. the alcohol thing is annoying, though. i haven't had a real drink in almost 10 months.

soooo...you're lucky. i say go with it.

smoke if you got 'em.

[MightyMouse]

Many people with ANS problems do well with caffeine in moderate amounts--in fact, one the treatments for pots is Ritalin or Dexadrine--both are stimulants, like caffeine. Others are very sensitive to stimulants and cannot tolerate them.

I would see if you can start first with the TTT--it'll at least let you know if your body reponses are measurably unusual. Also, just becuase your bp isn't typically all that low, doesn't mean it wont be out of the normal range on the test; for example mine crashed completely on the test and that's very unusual for me in day to day life--probably because I drink a BIG mug-o-java at least a half hour before attempting to leave the house and the test required I be off of caffeine. Typically, my bp isn't just low--it's irregular. My heart rate also goes all over the map, but will have leaps where it stays high for bit, then drops...then back up again, over and over all day long.

Depending on how your test progresses, they may or may not add the IV medications during the test.

I would just ask your GP straight out--tell him /her what you think and ask him/her directly if you could get a TTT. If you've got a good relationship, you can bring some documentation with you.

Nina

[HT65]

Well, the last few days seem promising. I see my GP tomorrow, and will discuss things with her. However, the last two days have been great! Today for the first time in ages there has been no large jump in my heart rate when I stand up! It can still go to around 107 when standing, but that's from 88 bpm sitting, which is a considerable improvement. It seems to be lowering, and it's even been under 100 when standing tonight. I've generally been feeling better since Saturday, with improvement everyday. I really hope this keeps up. I can't imagine why the sudden improvement, perhaps it's the multi-vitamins...who knows...but something is different. I'll still ask for the TTT, because this may not last. But I'm feeling better today than I have in months. I even have the energy to work out tonight, and I've been regaining weight. This seems to have happened relatively quickly.

I have to ask, however, has anyone else had sudden improvements like this, only to have the symptoms come back shortly afterwards...or even some time afterwards?

[MightyMouse]

Oh...you should know that in order for you to get an accurate diagnosis on a TTT, you'll need to be off florinef for at least 10 days PRIOR to the test--and you should do so by tapering. Some docs believe that stopping suddently could cause some problems with the adrenals. Proamatine is a short acting med, so being off for only a day should be fine. YOu'll have to be off of caffeine for 24 hours too--and nothing to eat after midnight before the test...

at least this was the protocol they used when I took the test at Columbia Pres. in NYC at their Syncope Center.

Nina

[HT65]

Nina,

Actually I am not on any medications at all right now. The only one they ever gave me was Sotalol, and I stopped taking it weeks ago. Thanks for the information.

[MightyMouse]

Oops, sorry about that--now that I re-read the post you started with, I realize that the florinef & proamatine were Ethansmom...

I get easily confused

Let us know if your doc writes the Rx for the test Nina

[HT65]

Hi...well, she is holding off ont he TTT since I am actually feeling better at the moment. Actually my heart rate seems to be coming back to normal...we're not sure why. She said if the symptoms come back, then she'd ecommend the TTT. However she did agree that the Sotalol was likely making me feel worse because I may very well have had POTS, and may still have it. We'll have to see how it goes. I really hope it keeps going well..feels good to feel almost normal again...without any medication! Thanks for all the help. I'll keep you updated.