Arrythmias and Other Heart Symptoms - Perhaps due to Mystery Auto-immune Disease

Hi,

My doc thinks I may have developed a collagen vascular disease 2 yrs. ago. I have many symptoms since: raynauds (diagnosed), overall cold intolerance, digestive problems, swallowing discomfort & esophagus spasms, etc.

I also have cardiovascular symptoms: For 1+ years have had SOB on exertion (or at night), pounding heart and elevated pulse after exercise or eating, & increasing palpitations. Tests done: 4 echos, event monitor(EM), stress tests, EKG's, PFT's, lung CT-scans, & right-heart cath. due to suspected pulmonary hypertension (results normal). Abnormalities from above tests: 1)EM showed short bursts (5-15 seconds) of sinus tachycardia & SVT's. The palpitations are quick to start & quick to end seemingly with no trigger. 2)The RHC showed a high cardiac output (7.83) & high venous saturations. 3)Two echos showed apical &  apical-lateral hypokinesis but later echos showed none. 4)My last PFT's were at 75% diffusion.

I started Toprol-XL which has slowed heart & helped some with palp's. & helped with exercise - but more snorting at night.  Questions: 1)Is there any significance to having BOTH sinus tach & SVT's? 2)Doc tells me not to worry about the SVT's but some of your information says they can be dangerous - is this true? 3)If my blood vessels are constricted in my body, could my heart be trying to compensate? 4)Since I have 2 kinds of SVT arrythmias -is there increased chances for VT? 5)Two echos at same clinic six months apart showed heart heart size increase but doc says this is due to test error - sound right?, 6)Where do I go from here?

Thanks:)

[CCF-M.D.-RCJ]

Mr J.,

Thanks for the post.

I think the key to your health care is to determine the correct diagnosis of your collagen vascular disease.

Different collagen vascular disorders have different cardiac manifestations.  Scleroderma, for example, tends to cause widespread fibrosis with subsequent conduction abnormalities, diastolic heart failure, and pulmonary hypertension.  Lupus, on the other hand, leads to pericarditis, myocarditis, and pulmonary hypertension.

Determining the correct collagen vascular disease will determine what type of cardiac work-up is appropriate, as well as help determine what type of therapy may be required.

Hope that helps.

[CareBear59]

Hi Hankstar!
Did the 12.5mg of Atenolol drop your heartrate or blood pressure way down.  I want to start taking that or Inderal for my PVC/PAC's and PSVT attacks and see if it helps but I'm afraid because my resting heart rate is already in the 50's alot of the time!  Thanks alot.

[Mr. J.]

Dear Dr.,

Thanks for your response.  I don't want to seem ungrateful but you really did not answer any of my questions.  My doctor has done extensive testing for two years and so far we cannot find a "name" for my illness which leaves me in the position of simply having to address symptoms - and my most concerning symptoms are the cardiac symptoms.  So, could you please take your best "stab" at my specific questions.

Thanks.

[Cathy12]

If your symptoms are trully collagen vascular disease (specifically scleroderma or CREST syndrome which is almost the same (the second is more mild)) then you should be on ACE-inhibitor such as monopril for kidney protection. All other treatments are only supportive and symptoms oriented. Your doctor should have done autoimmune antibodies tests to confirm or rule out specific autoimmune disease.
It general you should be seen by rheumotologist for it.

[Cathy12]

Also many rheumotologic diseases, if it is truly what you have, have  great overlap with one another so it is sometimes difficult to make a correct diagnosis, this is why you should be seen by a specialist in this area. If your doctor suspects Scleroderma or CREST syndrome you should be on monopril or other ACE-inhibitor.

[Scientist]

I've seen claims that both autoimmune diseases and arrhythmias (and allergies, CFS, etc.) can be caused in part by a viral infection.  In such cases, one might experience unexpected reactions to antivirals found in foods, especially certain herbs and spices.  In case you have noticed such a phenomenon and this interests you, I'd say more.

[CCF-M.D.-RCJ]

Mr J,

I purposefully did not answer your questions directly because I think that not knowing the specific diagnosis for the CVD is a serious impediment for deciding future therapies.  An analogy would be to say "Dear doctor, I have an infectious disease and palpitations -- what is the significance of the palpitations?"  The answer to this question depends heavily on the infectious disease.  If the disease is pneumoniae, then the palpitations are superfluous.  If the disease is Chagas, then heart failure may be causing the palpitations.

But to answer your querstions,
(1) Most people do not have both sinus tach and SVTs.  Usually the SVT is really sinus tach that has been mis-diagnosed.  However, some hyper-adrenergic states can lead to both.  An example would be hyperthyroidism.

(2) Yes, some SVTs can be dangerous depending on the circumstances in which they occur.  Most, however, are tolerated just fine.

(3) I'm not sure what you mean by "constricted".  If you mean fibrotic, which can happen with scleroderma, but not lupus, then your heart may also have fibrosis.  This is why I implore you to seek care with a rheumatologist at a big center.

(4) Probably not.

(5) I can't know the answer to this question without seeing the echo.  Also, who read the echo.  Is the doctor writing "enlarged heart" on the echo report, but then telling you that it is not enlarged?  Echos are read by people, so either there is a reporting error or a disagreement.

(6) Seek care from a rheumatologist.

Good luck.

[Mr. J.]

Hi,

Thanks for your second response.  I can appreciate what you are saying about knowing the underlying disease first.  My problem is that despite over two years of testing, I have no diagnosis of an underlying disease.  My doctor believes many of my symptoms are consistent with some type of collagen vascular disease - yet I do not "fit" into any of the typical diseases and my blood tests remain negative.  I have even seen a scleroderma specialist who has said he does not think I have scleroderma.  So, I will continue to pursue a diagnosis but in the meantime I feel I have to do something to address my most concerning symptoms - my heart!

After my right heart cateheterization, I was diagnosed with a hyperdynamic heart so maybe that is the cause for the combination of sinus tach and SVT.

By "constricted" I meant when the blood vessels constrict in the body as a result of inflammation such as occurs with vasculitis or collagen vascular disease.  I began experiencing an increased heart rate and shortness of breath right at the time that my raynaud's and overall cold sensitivity began.  So I was wondering if perhaps my heart was trying to correct for the increase resistance in my blood vessels.

As far as the heart size, my cardiologist said I do not have an enlarged heart - and indeed it falls within the normal range of size.  But, several of the specific centimeter readings seemingly increased over the course of six months.  For instance, LV diastole was 45.3 and LV systole was 29.5.  Then six months later LV diastole was 52 and LV systole was 35.  My cardiologist said this is due to how the echo was performed, who performed it, at what point the technician took the measurements, etc.  I guess what I'm wondering is - does this sound right or do I need to be concerned if my heart is actually increasing in size?

I thank you for your help in answering my questions.  I appreciate this website greatly and I thank you all for your efforts.

-Mr. J.:)

[minnierice]

Hi!
recently I've undergone many echo's.ekg's, stress thallium,carotids, chest xray and all sorts of blood work dor troponins and related heart tests. The ekg comes back boderline or abnormal. I have inverted T-waves. I do have lupus and now positive for anticardiolipid IGG (26). I have GERD an had a manometry done and it should some dismotility and scarring. I will be having another endoscopy with dialation next week. Meanwhile I also ahve had CRP of 24.5-41 being the highest.
Also chest pain,flushing,pain in left arm and back left scapula
pain and tingling. Also, orthostatic hypotension. Doctors all tell me different things, one say autonomic dysfunction along with Gerd,lupus,fibromyalgia. I'm on Toprol 25mg a day and take potassium cause potassium has been dropping also to lowest was 2.6. Everytime I end up in hospital with chestpain or the severe GERd the cardologists always tells me nothing wrong with your heart. Now I see that my records shows a mild mitral valve prolapse and trivial mitral regurgitation. I'm still quite uncomfortable at times with tachycardia and palpitations. BP as low as 90/58 during the day.
any idea as to what to do next about CRP,Palpitations,tachycardia,gerd? If I take more toprol BP will drop more and make me more uncomfortable or not?
Please let me know any advise possible.
Lourdes

[Mr. J.]

Hi,

Sorry I missed your comments a while back.  It would seem like a good step for you may be to explore what those palpitations are.  You could request your doctor to give you an event monitor which you could wear for 30 days to try to capture some of those palpiations.  That is what I did and that is how they identified my sinus tach and SVT.

We do have some similar symptoms.  What are your palpitations like?  What do they feel like?

-Mr. J.

[Spirit Talker]

This is a first for me. I am not a group person. I have had "problems" for 18 years now. I have seen near a hundred doctors from many hospitals in many states, they play me like a yo-yo. It seems that there is nothing to operate on so they do every torture test they can think of and then hand me pills and say they don't know what is wrong with me and send me to another specialist, mostly endocrinologists. I was very athletic till my first "episode" I was riding my trail bike had "something" go wrong with the heart, fell off the bike and was down on the ground trying to recope for over an hour. After that my Cardiac nightmare started. I had one heart specialist say "sticky valve, sticky valve" (I'm quoteing here) "you're too young and healthy, go excersise more, run" Well a few years later I passed out at the wheel and woke up in the ICU Heart floor. The next day my heart stopped, I flat lined and got everyones attention...finally. I had been living in hell for 6 years with doctors looking at me as if "I wanted Attention"...Just another "crazy needy female", just not menopausal yet!" Well, after I died for them, "They" decided that I must have a problem. They couldn't come up with an answer as to why my heart just up and stopped so they gave me Norpace and sent me home after teaching me to walk and talk again. On Norpace I gained 50 pounds in 3 months and sat in a chair drooling on myself. One day I woke up and refused all meds. A few weeks later I came out of the drug world and could think again. I tried living again but my heart wasn't working right. It would race and look like it was going to bust through my chest and then just give a big hard beat and stop. I was being cared for and they had all taken CPR classes and had to use them more than once on me. So then "They" said lets try more tests and then Inderal...well I gained more weight, had brain fogs, dizzy all the time, ringing in the ears to the point of maddness, tremors, leg cramps to tears and a hundred other things (of course more specialist for all of these symptoms) And another decade of my life passed in heart doctor hell. I have never known anyone with these problems and was surprised to see this site and in a way happy (please don't anyone take that the wrong way) to finally find others who are suffering like me....I am so sorry to put it that way....if I ever find a way out I'll come back and help each and everyone like me. This is what make me mad...As many doctors as I have seen, each has a different twist, none have the answer to the "what is wrong with me" question and they all just pass the puck because their is no big money in a heart operation for me and that is how I feel. And they just shake their heads at all the symptoms I list.."They" say they're not related to the heart but I'm reading them here from you other heart suffers. I have no faith in doctors anymore and since I have tried to Post a Question to the doctors on this site for the past 4 months but it's always full...I've given up there too and will throw this out to the ones that really know, the ones that suffer every single day of their lives wondering if the next heart beat will be the last one. And I know that no matter who you are or how strong you think you are when your heart screws up you are Scared As Hell just like me. And you'd think that after 18 years I'd be use to this. There's only one thing I know is that I have lived through them before and I will try to live through them again. The first time my heart flat lined the doctors told my parents that if my heart wasn't as strong as it was that they'd be viewing me in a toe tag. They also said that one day it wouldn't be as strong..how could it be after getting beaten up all this time. So, what have I always felt about my "problems" well some how I have always known that this is an electrical problem caused my a huge hormonal imbalance caused by a faulty endocrine system which is riddled with autoimmune diseases. I get a new one with each new doctor visit!!! Last week my newest Cardiologist (after seeing me once for 15 minutes, no tests) said I had POTS and he's sure of it and he wrote me out a scrip for Toprol-XL. Now I've read here that some take this beta blocker only when they "need" it (their hearts are pounding at 180 + don't ya just love that feeling!) Like many of you I get this so called POTS at night when I want to just sleep, after I eat and sometimes when I try to do yard work, etc. Mostly the heart will just take off like a bat out of hell whenever it feels like it. I've got it down to 3 major "eposides" per month and always every morning when I first wake up and move my heart will go off for about 3 to 5 minutes. My eposides last anywhere from half hour up to 9 hours at a stretch. These "episodes" are different than the one I had up till this time. Now I have a internal freezing seizure like eposide..which one ambulance driver (I'm rushed to the ER a couple times a month..my veins of course are all blown after years of this ****) said it looked to him like adrenal failure. If there is anyone out there that has POTS or any heart problems where an attack brings on uncontrolable shaking and freezing could you please respond. That is if anyone can read this without falling asleep. Sorry to have written a short story but this is my first attempt at trying to find help from people who know. I wish I could give all my heart doctors a change to experience first hand just one of my episodes perhaps then they would work to find a cure and not just pass out band aids, especially if they ever thought that it would happen again. To all that live in this hell I pray that we can find our own cures because doctors never will...they don't care their hearts beat just fine.  Spirit Talker (why, because I've been there)

[minnierice]

Hi,
Well, my symptoms are dazed,fast heart rate sometimes up to 130 while I'm doing nothing,palpitations,lightheadedness,flushing and orthostatic hypotension as low as 88/58 blood pressure. Since I also have Lupus everyone always want's to blame that.
This has been going on for 6 months now and has kept me from graduating nursing school. So needless to say I'm so tired and fed up with doctors cause they really like to blow me off. It seems like to much for them to try to figure out. I wish they would be men enough to just say I can't help you.
Mr. J what are your symptoms? Tomorrow i'm doing a tilt table test to see what's going on with my blood pressure and palpitations I sure hope this is going to help.
Take care!
Lourdes

[sweetsong28]

HI, IVE BEEN DEALING WITH VERY UNCOMFORTABLE SYPTOMS (symptoms) FOR ABOUT 7 YEARS NON STOP , I MEAN ITI ITS CONSTANT VERY HARD HEART POUNDING SOMTIMES FAST IVE DONE ALL THE TEST IVE BEEN TO DOCTORES OVER SEAS NO ONE CAN FIND WHATS WRONG WITH ME, AND WHEN DOCTORS CANT FIND WHATS WRONG WITH YOU THEY LIKE TO SAY ITS YOUR NERVES BECAUSE THEY DONT KNOW HOW TO GET TO THR ROOT OF THE PROBLEM INSTEAD JUST PRESCRIBE PILLS FOR ANXIETY.MY HEART IS ALWAYS BEATING HARD THERE'S NOT ONE MINUITE OF THE DAY THAT IS DOESNT IT STARTED 7 YEARS AGO AND IT NEVER WENT AWAY I WAS LIVING A NORMAL LIFE BEFORE THAT, NOW EVERYTIME I EAT OR EXPECT MY PERIOD THE SYPTOMS (symptoms) GET WORSE SOMTIME I CANT BREATH IT FEELS LIKE I JUST FINISHED RUNNING, SOMTIMES CHEST PAINS I FEEL LIKE I GONNA DIE IVE BEEN TO EMERGENCY FEELING THIS WAY AND I COME OUT THE SAME WAY I GO IN NO ONE CAN FIND ANYTHING, THEY SAY EVERYTHING IS NORMAL, IVE BEEN HOOKED TO UP HALTER MODITOR'S AKG STRESS TEST, EVERYTHING COMES OUT NORMAL, MAYBE ITS NOT MY HEART MAYBE ITS SOMTHING THATS MAKING MY HEART ACT THIS WAY MAYBE SOME KIND OF INFECTION THAT NO ONE CAN PICK UP ON I DONT KNOW IF I SHOULD GO FOR NUCLEAR TESTING TO SEE IF SOMTHING SHOWS UP, BECAUSE NERVES IS NOT GOING TO MAKE YOUR HEART BEAT HARD 24-7 OR WORSEN YOUR SYMTOM WHEN UR MENSTRUATING OR IF ANYONE KNOWS OF ANY TEST I CAN DO PLEASE LET ME KNOW IM TIRED OF FEELING THIS WAY I WANT MY LIFE BACK IM 28 YRS THATS ANOTHER REASONW HY DOCTORS DONT TAKE MY CASE SERIOUSLY, PLEASE LET ME KNOW IF ANYONE KNOWS OF ANYTHING IM WILLING TO TRAVEL THANK YOU KINDLY

[Spirit Talker]

You sound just like me...I was healthy, happy and 29 years old and one day my heart just started beating so fast I couldn't believe what I was feeling and then I passed out and died. Yes, you are on the right track...the problem isn't with your heart, it is with your endrocrine system and don't let anyone start you on beta blockers and Zoloft and all the other band aids they pass out because they haven't got a clue and they are so pompous that they won't admit that they are nothing but band aid dispensers. I've had 19 years of their tests and bloodwork in over 20 major hospitals including the Cleveland Clinic, I'm only 45 minutes from their hallowed doors of death (they killed by baby sister several years ago) and I've been in the ER over 100 times and not one of them has ever helped me, or even given me a real answer as to why my heart does this!!! Sure they have said it's everything from leaky value to POTS. I am so sorry to tell you, if you are a person that believes in the conventional medical field because to put your life in their hands is suicide.
You need to, if you haven't already, keep a log and I mean a good one...you have to record everything you eat, think, feel and do that happens before things get worse. And yes, I get worse the week before and the week after my periods... On each of these days I have different symptoms: two days of feeling like my heart is in a vice..pressure like someone is pressing down hard on my chest....2 days of I can't breath....2 days of I'm so dizzy that I run into walls....2 days were I feel like I have morning sickness all day long...then comes the Crash (there are always at least 2 per month..one one the 15th day of the cycle..ovulation time..I know when I am ovulating!) and the second crash is the 2nd day of the menstrual period. Now let me discribe a "crash" I could be having the greatest day of my life and in a flash I will feel that something horrible is going to happen...it starts in my head with heat, my vision blurs, my mind gets vague, my hands get clammy, I feel shakey (shaky) all over, my heart starts to race over 100 bpm (usually tops out at 150's) and bound right out of my chest, you can actually see the heart moving the chest out..I have frightened many people when this happens. My heart is going so fast that I feel like I am passing out, my face and body goes on fire but I am freezing inside. Then I start into what looks like a seizure...my body goes into uncontrolable shaking all over but especially the legs...this is very painful because your muscles are constricting so quickly that after you are in spasm and craps for a day later. These episodes last anywhere from, the shortest one I've ever had was about 30 minutes the longest was 26 hours. After which I am exhausted...I feel like I have run a 1000 miles in 5 minutes. And during this 2 weeks of hell every month on each morning of this time as soon as I more my heart starts to race...I'm lying down perfectly still and the heart ups to 140 's and stays that way for about 5 minutes. Now, in my 19 years of living with this what have I discovered other than I hate it and don't want to be sick anymore and that I wish I could give one episode to each of the demi-god doctors that have looked at me (and when I was young and you are right they look at you like you just want attention or like you have some mental problem..poor little girl she probably just broke up with her boyfriend!!!) I've learned that you can "fire" your doctor and that telling them off often makes you feel better because at least you feel in control of your mental state..if you can't feel in control of your NACAR heart. Yes, and humor is a good weapon against all illness. They disabled me the 3rd time I was pronounced dead in the hospital....that's the time they brought in my family and told them that I had "sudden death syndrome"  boy they do have their names for things....they make up a new "syndrome" everyday..this just shows me their incompetence. And I have learned that the god doctor complexes run deep and their egos are so inflated that to even confer with another demi god is almost unheard of. Now, I hope I haven't lost you in my sarcasm..after 19 years of their torture I've earned the right. Now what have I learned to help myself....first stop going to the ER..because they don't know anything and if you're going to die you might as well do it in a nice environment...your own bed. But not wanting to die just yet either and wanting my life back which was and still is a good one...meaning that I have a great family, great support, and I know that I am loved beyond words and that I love. I also know that I want to be healthy and that life is good and there are a million and one things I still want to do here. So what I did was start to research....I get every book that I can and I read it...written by MD's to just good people. I was so into the research that for therapy (LOL) I enrolled in Medical School..but not convention because they have nothing to offer me. MD's whole schooling is in emergency care then they go out and play either a GP or FP or they go back to school and specialize..they know nothing of the real workings of the human body...because they don't recognize the other parts..The Mind The Body The Spirit...Conventional doctors only know what they were taught and once they set up practice they have little time to ever learn anything else. I kind of feel sorry for them but it really ticks me off that most people believe the doctor and his words are as god.  When is the last time you ever heard of a doctor curing anyone? I never have. We get well ourselves. And that brings me to what I'm learning....first no one knows everything..everyone needs the help and support of others....minds need to brain storm together to get answers to tough questions (and the Endrocrine system is  a total mystery to all doctors...don't ever believe otherwise and the heart is right behind that) What is causing your heart problems....your hormones are....we have to stop thinking of hormones as being only sexual....the thyroid hormones effect every cell in your body 24 and 7....365 1/4.....don't ever let anyone kid you on that. And you can not have one gland in this system off without all of them being out of wack. Your Adrenals are also causing the heart rate......In order for you to get this under control and to get your life back you need to go on line and find a health care professional that will look at you as a individual and not just prescribe you the Pill of the month club..because good old doctor is getting perks from the pharmaceutical company and her wants a Hummer! Start on line with the American College for the Advancement in Medicine  ACAM go there and click on find a doctor in your state your area. You need to start to try all the alternative methods you can until your find the one that works for you...I've said many times I don't care what I have to do to be healthy again..if that would mean eating worms or cow dung or standing on my head and chanting..I don't care...I just want to be well....I have a life and I want to live it without all my heart stopping me in my tracks....there will be a moment that I forget to exhale but it isn't this moment and I want to enjoy each heart beat...not be afraid of it and thinking is this my last heart beat? Let me know if you "crash" too like me. But most of all know that there are many like us out there...too many and that we must take our lives back and be in control of our medical care...we have to be our own doctors because god knows the convention medical field is a vast disappoint and each time another of their ranks takes the oath...To do no harm...they are lying....all their passing out of pills does is harm and shorten lives everyday. I just woke up a few years ago...I was one that believed in medicine and admired doctors right up till the point when I realized that they were killing me. I wasn't living I was taking up space and making waste. That is what you become living on their pills and in their "care". I almost married an MD...glad I didn't...he'd be a windower by now.