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The unknown heart problem? Possible dysautonomia?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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The unknown heart problem? Possible dysautonomia?

My names Chris, I'm 22, and a college student. I developed a tachycardia problem after I lost over 75 LBS at age 16. I'm now 22 and I weight 179 and i'm 6 foot 2. I suffer from an unknown tachycardia problem that none of the 6 cardiologists and 1 electrophysiologist can figure out. I can't exercise at all which is weird because i was athlete before i lost the weight. I'm now also scared to do any exertion because I can feel my heart in my throat non stop. Even if i dance a little, or do some push ups, my heart is beating so hard and I have to take deep breathes. I have tachycardia with going to the bathroom, the HEAT outside, eating heavy meals, and especially exertion. The problem is debilitating and handicapping my life. I've seen 6 cardiologists like i've said and also an electrophysiologist. I've had multiple thalium stress tests, CT angiogram with dye contrast, hundred echos, hundred EKGS. Tilt table test, event monitors, holter monitors. I've had some tiny episode of svt show up on monitor and atrial flutter once, also had anvrt show up once. My heart is structurally normal, i've also had all the blood work possible and a brain mri and also aortic anuersym check up 3 times. Ultra sounds of all organs so i've done it all basically. My question is ANYONE HAVE ANY INPUT ON WHAT I SHOULD DO NEXT? I CAN'T GO OUT WITH FRIEND, NO GYM, NO BEACH, I HONESTLY DON'T KNOW WHAT THE POINT OF LIVING IS, IF I'M HEALTHY BUT YET FEEL LIKE AN 80 YEAR OLD. I'M CONVINCED I HAVE A BLOOD BLOT THEY CAN'T FIND OR A HEART DEFECT. I JUST FEEL LIKE SINCE I FEEL THIS STUFF THERE HAS TO BE SOMETHING WRONG AND EVERY DAY I'M JUST WORRIED ABOUT DROPPING DEAD NOW. ANYONE HAVE AN INPUT OR OPINION OF SOME KIND?
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1323747_tn?1364810482
My first thought is that loosing the weight might have nothing to do with your tachycardia.  Sometimes things happen at the same time that are not cause and effect related.  On the other hand I have known of a few people who have gone on all liquid diets who have later developed uncontrolled high BP.  I have never seen anything written about this but I have known two people who reported it.  

My first question is how did you lose weight?   What happened on your tilt table test and be specific as you can with numbers.  Have you had your thyroid checked including TSH, anitbodies, free T3 and free T4? Hperthyroidism can elevate heart rate.  

Have you considered going to a testing center like the Mayo clinic where they throw experts at you to figure out the cause of your problem?  With the amount this is disrupting our life this seems like a good idea. Realize you sometimes have to go to the experts when your problem is hard to diagnose.  You wouldn't be here asking for help if you did not still have hope that help is out there and I want you to realize you may just need to go to the help and you may not be able to access it right in your normal community. Those of us with unusual or rare conditions often have to travel to get the assessment we need.  Once you have that the doctors in your area should be able to work with you.

The fact no one has figured out your problem doesn't mean it isn't fixable or can't be improved, it only means it is complex and may take special approach to figure all out.  I hope you find answers soon and let us know how thing are going. You may also want to post this on the cardiac expert site to see if anyone there has additional ideas.

I hope this is helpful.  Marie


  
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Avatar_f_tn
Chris, Welcome to the forum. I have one question to add to Maries. Ru on any Meds to treat the tachycardia? Oh also guess this will be two questions what symptoms do u have with the tachycardia? For instance do u pass out, ru short of breath,etc?
I understand how frustrating this is for u. Hang in there.
Beemau
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Avatar_m_tn
I'm not taking any meds only because i'm not going to take meds unless i know what exactly the problem is. The symptoms vary. I've never passed out or rarely get lightheaded. The main problem is the heart rate in the throat, it's extremely annoying. Sometimes i'll have to take deep breathes through my nostrils. Please note that if i'm sitting the rate will go back to normal immediately unless i was doing exercise or in the heat. The rate will stay in the 90's normally sitting down.
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Avatar_m_tn
I've had the thyroids check. The tilt table test. laying down before the test my blood pressue was 115/70 and heart rate 64. As soon as I was tilted, my heart rate jumped to 120 and blood pressure 130/80. Then the blood pressure went 150/80 and and the heart rate was 130. I had all my symptoms and it was normal sinus rhythm the entire time. Also I went to a cardiologist in New York for this and she was there with me during the tilt table test and watching my heart rate the entire time.
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Avatar_m_tn
i know about the mayo clinic but they don't accept my insurance. I would love to see them, I just don't know what to do :(. I'm gonna be going into med school soon and I just feel like I won't be able to get through this without my problem being solved.
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Avatar_m_tn
My story is very similar to Meagan's.  My tachy started out of the blue and we tested many things for weeks.  This started 5 weeks ago.  I am now on a low dose of a beta blocker which has slowed my heart rate down with few side effects.  I also have "mild" POTS and we are not sure why I have that either.

CDome, from your tilt table it almost sounds as though you do have dysautonomia although we of course cannot diagnose here.

Question for both of you - do either of you have PFO or other holes in the heart's septum?
I found out that I do (I have a Possible PFO and an interatrial septum aneurism (aneurysm)).  I am wondering if this plays a role with any of these symptoms?
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726204_tn?1285879778
The results you have given for your heart rate upon Tilt Table look possibly indicative of a POTS diagnosis.  For POTS to be diagnosed one has to have a heart rate increase of 30bpm or to 120bpm upon tilt table.  Please see the link below for diagnostic criteria:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196

Many doctors whom are not familiar with the condition are under the false impression that a bp drop has to present with the tachycardia, but this is incorrect.  Many patients, including myself see an increase in bp or even no change.

I would go back to your doctor who done the Tilt Table if you cannot get into somewhere like he mayo clinic, and take along information about the diagnostic criteria for POTS.

Now, POTS should only be diagnosed if all other causes can be ruled out, this includes a full endocrine work up as well as the cardiac causes.

x
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Avatar_m_tn
Do you need to have symptoms 24/7 in order to have POTS? Can there be days where your heart rate won't spike if you get up or days where your not symptomatic?
I've had every test that is non invasive for the heart. My heart is structurally normal. I'm very familiar with this disease as i've researched it for a year or two now. What treatment is best for POTS? AND does it get better with age as they say? Cause i feel like it gets worst.
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Avatar_m_tn
Yeah that's exactly how I feel.
After I had the tilt table test done in New York, the cardiologist said I should be on a Gatorade diet, and high sodium.
I thought high sodium leads to high blood pressure though?

How do you exercise and get physical activity with POTS/dysautonomia?
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Avatar_f_tn
High sodium/fluid also increases blood volume.  People don't understand how I don't swell with all the sodium I have in my diet but my body needs it to keep volume up.  
Low volume =Tachy
Every time I have had my sodium tested, I am between 135-140 (135 is the lowest acceptable number in the labs here).  I have had to resort to carrying an article from Standford explaining the difference between dehydration and hypovolemia.  I pull it out at the ER and ask the doctor if they want it as I am telling him/her I need an IV (possibly several bags), that I am not dehydrated and that I am sure being an MD that they know the difference (too smooth out their ruffled feathers after being told what their patient needs by their patient), that was after I was told over and over the two were the same thing :-/

Earlier this year after two weeks at the main Mayo, MN, I was Dx'ed with POTS and was told their standard is put almost everyone on a high sodium/ fluid diet. I do not have low blood pressure or high (usually, it has been known to be fickle at times)

Some people can exercise rigorously, some can't......There was just a Facebook article from Mayo about a young woman who was now POTS free....she worked with Dr. Fisher at Mayo, MN (Ped. Cardiologist who works with lots of POTS patients),  and he ok'ed her running and even challenged her to a quicker mile.
You have to find a balance, do too little- things get worse...do too much- things get worse.

Did you ask the cardiologist why they wanted you on a high sodium diet? Have you brought up POTS to them?
Can you see if Cleveland Clinic will take your insurance?  
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Avatar_f_tn
Have you been tested for a pheochromocytoma?  It causes elevated catecholamines, which in turn cause the body to "speed" up.  It will cause higher heart rate, high b/p, heat intolerance, and headaches.  All of that, I'm sure, would cause weight loss.  People with pheos are told NOT to exercise, as it aggravates the b/p.

I'm kind of in that situation.  Every new doctor I go to thinks pheo, but so far the labs don't support it.  The symptoms I have DO support it.  Oh well.  I am in a new round of labs right now to check for it.
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Avatar_m_tn
I've been checked for the adrenal glands and tumors of the adrenal glands, specifically, I don't know if pheochromocytoma was the main source of search.
I'm on a 30 day even monitor right now and having plenty of symptoms, so i'm pretty excited to see what happens at my visit next month to see what the outcome is.
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Avatar_m_tn
Do you have to have an elevated heart rate all the time? Can there be days where you feel good and no rising heart rate?
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Avatar_f_tn
Are there days I feel good.......yes
Do I have days that are completely "normal" where I can go go go and not pay for it the next day or later that day.....no not right know. (but I have hope)
I am taking beta blockers to get my standing heart rate under 100.  I have days where I can stand and my pulse is above 100 and I don't have what I call " heart" symptoms (dry mouth, dizzy, vision, brain fog etc.)
I also sometimes have symptoms that are not what I would say are "heart" related (gastric, bladder infections , dry eyes etc.) so its hard to say when they flair up what my heart is doing, I mean I know what my pulse is but do I feel bad because of my pulse or the other symptoms or both..... million dollar question for me.

Does that help?
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1401877_tn?1288111239
Hi Chris,
Definitely sounds like POTS to me... ask about Hyperadrenergic POTS.  Most doctors don't know much about it at all but you may want to do your own research on it and see if you feel that you fall into that category.  It's often confused with Pheochromocytoma with many similar symptoms, so if you've ruled out Pheo then check it out.  I have the same physical issues as you and all the same test results that you've told us about.  I'm 31 and have dealt with this since I was around 19 (and I think to some extent a mild version my whole life... I also have exercise induced asthma though). There are good days and bad and you just have to know when to stop.  A beta blocker is worth looking in to. It may not cure you but it may help with that feeling like you are about to drop dead (not pleasant, I know).  Also, when I start feeling that way I take a low dose of Klonopin (like Xanax or Valium) to help calm and slow my system.  I used to play sports and played softball up until a couple years ago and would sometimes take a 'preventative dose' of Klonopin if I knew I was going to be in a situation where my heart would go crazy.  You are smart to not go crazy on meds all at once, talk with your doctor and try things one at a time so you can see what's helping and what's not.
Hyperadrenergic POTS (or any version where your bp goes up) should be distinguished because it may need to be treated differently.

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Avatar_m_tn
Yeah, I see what your saying. Even if it it sinus tachycardia, then I can go about my day knowing it's not a deadly arrythmia.
Thanks I will keep you updated.
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Avatar_m_tn
Yeah, it helps. Does POTS also worsen when there's a full stomach? And do you have problems with bloating alot with certain fulls/heavy meals?
I seem to feel better when I eat very small meals and have really not much inside my stomach.
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Avatar_m_tn
I will look into that alot :). Thank you.
I'm just confused with this whole POTS ordeal, sometimes I feel like there is enough to make me believe I have it, but then sometimes I just get throw that idea out the window.

Can POTS make you bi-polar, or in a way where your mood changes and your emotions are changed?
I feel like I get depressed sometimes, cause all my friends are 22 enjoying their lives, and i'm sitting at home just doing nothing, and my life was never like that.
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1401877_tn?1288111239
POTS is incredibly confusing.  It's a syndrome with a compilation of a million different possible symptoms and combinations of symptoms that are different for everyone.  All our stories are different from each other. It's such a difficult disorder because it is so complicated and you can't just go into the doctor's office and come out with a clear cut nicely packaged diagnosis that everyone can understand.  It's not even a disease in itself, it's frustratingly a catch-all diagnosis for whatever nervous system dysfunction we are having that's causing all these seemingly unrelated and un-diagnosable symptoms. POTS isn't really a "cause" for anything...it's a description...
Like Meagan I was also excited about my event monitor that I wore for a month bc I was sure it would show concrete evidence of something, but the results came back without anything substantial....
As far as emotions, I've had emotional issues in the past and "anxiety", etc. But POTS patients are very often diagnosed with anxiety disorders because what we physically feel feels like anxiety. Also, I've had one particular doctor literally try to convince me that I'm depressed even though I'm flat out telling him that despite my physical ailments I'm a happy person and love everything else in my life.  And he says "Well you seem pretty angry and upset..."    Ya think?!?!? Yeah I'm pretty pissed off about feeling sick all the time and I'm even more pissed off that he isn't taking me seriously just because he can't find any of the typical cardiac abnormalities that he's used to. *Anyone* would get depressed at not being able to do the things they used to be able to do or that their friends are able to do...
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Avatar_f_tn
I was told that symptoms can be worse after a large meal (postprandial) and that eating smaller meals are best.
Have you read anything about blood pooling? I don't have any links off the top of my head but not only can people who have POTS have blood pool in their legs but also the abdomen add food and more blood is pulled away.
If you have less blood to start with (but not everyone who has POTS is hypovolemic) and a "bunch" is pooled in the lower half of your body your heart is going to beat faster to try and move it back up.

I was diagnosed with anxiety, depression and felt so badly because of them and stress. No I felt those (besides the panic attacks, which as mentioned is a common misdiagnosis with POTS) because I was living in doctors offices, labs, MRI machines, etc.) only getting worse with no answers except a few of the doctors who said it was in my head because they did not have an answer.
I also have a nine year old who wanted her "mom" back.....
Being in college and having health issues during what are supposed to be some of the funniest years of your life can bring you down.  
I speak with someone because I do get down, I get tired of feeling tired, I get tired of not being able to do the stuff I want to do, I DO NOT want to live with my parents so they can take over when I need help with my daughter.  Living with something chronic can bring you down and make you "depressed"  even but I believe that when the medical field can't find an easy answer that they jump to "its in your head" as an excuse and if you hear it often enough you start to believe it.
As for bipolar, has this been suggested to you or are you trying to put into words the fluctuations you feel in your mood?

Lastly did the cardiologist ever tell you why they wanted you to increase your sodium? There has to be a reason but knowing some of the doctors I have run across they don't explain things just "give orders"

Have you looked into seeing if you can be seen at the Cleveland Clinic? I know Mayo does not take your insurance but a head to toe look over from a place that has multi-discipline specialists under one roof that all work together to make diagnoses that single doctors miss is priceless in my opinion.
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Avatar_m_tn
You know what's crazy, I also have varicose veins at age 22. I feel liek that has something to do with pots also, is that possible?

The cardiologist in  NY recommended the sodium because of the tilt table results.
The tilt table results were from when i was laying down before the test my blood pressure was 118/70 ..heart rate 65 BMP...

When i was tilted up..my heart rate went straight to 130..stayed there for 30 minutes.
blood pressure went up as high as 150/80..normal sinus rythym the entire time, and i also had the symptoms present.
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Avatar_f_tn
Sorry I havent answered you for so long.....
I don't know about varicose veins and pots, but do know some people get discoloring from blood pooling.  Its not something I have so I don't have any information on it.

So the cardio in NY recommended high sodium because of your tilt table results but didnt give you a Dx.? I don't know much about other pulse issues so I am not sure if high sodium is recommended for other things.  How high did they want you to go?
The Mayo guidelines are 10-20 grams a day based on the person but there seems to be no standard across the medical community (surprise surprise).
Did they explain what they wanted the higher sodium to accomplish?
It sounds like they did some tests and gave instructions but now why or purpose :-/
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Avatar_f_tn
Cdome: Research Vasovagal Syncope and the Vagus Nerve.  I had your symptoms and they came out of nowhere.  The vagus nerve travels from the brain stem down both sided of the neck (near the throat) around the heart, into the abdomen - all related.  When this nerve 'malfunctions', it causes your heart rate to drop (causing the 'heart attack' feeling, pooling), lack of oxygen (brain fog, lightheaded feeling, etc.)   I had these symptoms along with stomach discomfort, the doctors couldn't explain the connection but when you research the vagus nerve, it's clear that there's a very definite connection.  SSRI's can help (not everyone).  I was prescribed Celexa which has some rough initial side effects but it eventually did help me.  Please research this and discuss with your doctors.  Good luck :-)
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