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24/f Inappropriate Sinus Node Tachycardia. PLEASE HELP
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24/f Inappropriate Sinus Node Tachycardia. PLEASE HELP

I am a 24 year old female. I've been told after having "unexplained" tachycardia for the last 6 years, that I have Inappropriate Sinus Node Tachycardia.

Beta blockers gave me drug induced lupus symptoms, so after 5 years on one, once they figured out that it was the cause of the lupus symptoms, they took my off the beta blocker. So far, calcium channel blockers have given me intolerable side effects. I haven't been able to take them long enough to see if they work for tachycardia, due to the side effects. I've been prescribed Cardizem CD now, and we'll see how that goes. My guess is that it will do the same as the others, due to the fact that I naturally have low blood pressure. They made me dizzy, floaty feeling, visual problems, shakey (shaky), cold, SO tired, and off balance.

My heartrate sits between 120 - 160+ bpm for the majority of the time. It will drop down to 80 or 90 bpm for a few seconds, and then go right back up. This is 24/7, all the time. It never stays at a normal rate. It feels as though it's always "pounding," and this wakes me up in the middle of the night about 5 times every 2-3 hours while I'm sleeping. Walking 2 driveway lengths shoots my heartrate up to 150+, and it doesn't go back down at all for about 30 minutes. The worst part, even more than it being fast, is that it feels as though it's POUNDING, even when it's only 80 bpm.

I saw an EP and was diagnosed off of an EKG, and listening to my heart with a stethoscope, (he heard it being high, and then drop, and then go right back up), and confirmation from another cardiologist that the ultrasound, stress test, and 24 holter moniter had revealed no structural abnormalities.

I'm not exaggerating when I say that I am pretty miserable and don't want to live with this for the rest of my life. I realize that if I can't fix this, not only will I continue to be uncomfortable all the time, but I won't be able to have children either. I was born over 3 months early due to my mother's untreated tachycardia. I can't be outside when it's hot out because this increases my heart rate even more. In just regular weather when it's not hot, by the time I get to class, 2 driveway lengths from where the bus dropped me off, my heart is so fast and I'm so tired that I'm stumbling and have sit down. I can't do more than 1 floor level of stairs without having to sit down, and I can't sleep at night because my heart pounds so much that it wakes me up. Just walking 100 feet(the length of 2 driveways) at a time is the most exercise I can handle.

The doctor said that surgery will not work on this, beta blockers are not an option, and so far, calcium channel blockers are a no go. I'm willing to try this next med, the cardizem CD, but most likely it will yield the same results due to my bloodpressure being low.

1) Is a pacemaker an option to stop this tachycardia? I know that I'm young, but I don't want to live with this. I'm willing to have a surgery every 7 years to not have to feel like this.

2) do I have any other options?

3) will having my heart beating this fast so often eventually damage my heart?

4) why does my heart feel like it's POUNDING, even at times when it's only 80 bpm?

5) were the test results that were gone off of to diagnosis this enough? he didn't see the 24 hour holter monitor results or the ultrasound of stress test results, just went off of the previous doctor's word that nothing was structurally wrong. the doctor I saw before the EP had said it was SA node tachycardia. The EP says it's Inappropriate Sinus Node Tachycardia.

6) Where would be the best hospital to go to/area of the US to go to, to get help with this?

7) When I was 16 I was told that I have a 2cm mass on my adrenal gland. It was never investigated despite my requests. (I've had my tachycardia for 6 years). The last 3 years, my hair has fallen out of my head by the masses. Could this tachycardia be caused by a pheochromocytoma? I know it's rare, but I do have the mass on my adrenal gland. Is hairloss related to pheochromocytoma? It falls out from the root, with the root attached, it's not breakage. It grows back to about an inch long, and those inch long pieces fall out too. I have hundreds of 1" long pieces of my hair that stand straight up all over my head. I also sweat on my eyebrows only, even when it's cold outside, for some unknown reason, which is very odd to me. You can't see it, but if I touch my eyebrows, my fingers come away wet. I am not overweight.

***side note. My mother: mitral valve prolapse, and tachycardia.
                    My grandmother on the same side: mitral valve prolapse,
                    and tachycardia.
                   Both treated with atenolol.
                    My grandmother on my Father's side got atenolol induced
                   lupus. So did I.
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21 Comments Post a Comment
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560501_tn?1383616340

   Hello and Welcome to the Forum :)

     Sorry that you are in this state of physical despair. it is very scary and quite discouraging trying to deal w/ a chronic health condition.  just remember that You are your own best advocate when it comes to your Health Care and getting the right answers and help!

      I was Dx with IST (Inappropriate Sinus Tachycardia) and then they changed the Dx after a 2nd Tilt Test, to NCS (NeuroCardioGenic Syncope).  I personally think that I have NCS and POTS......But who am I other than one who knows my own body..Lol

     Ok, so, Yes! It is not good for your Heart Rate to stay elevated for long periods of time. So I would say to keep in close contact w/ either your EP or your Cardio Doc on this.  They do use pacemakers in some of these situations but I think there is a certain criteria that has to be met???  i think that's what my Cardio Doc told me cause I asked the same thing!  

      I also have the Tachycardia (and MVP w/ moderate regurgitation) and the Digoxin is really helping w/ the Tachycardia a lot!!   As far as Atenolol goes...My hubby takes that BUT it is is for High B/P.  It is not uncommon to see a Hx of MVP in a family. In fact it is not uncommon for MVP to be seen in Females period!  Luck of the Draw I guess....

     When do you go back to the Doc?
~Tonya

  
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Avatar_f_tn
If you really mean 2 cm, and not 2 mm, ( the mass on your adrenal gland) you need to ask an endocrinologist about removing it, or draining it. This would definitely make your blood pressure rise and fall way out of the normal ranges, and effect your heart rate.

My mom has a small mass, 3 mm, on one adrenal gland, and has been having trouble regulating her blood pressure for a couple of years. I think 2 cm would cause a lot of trouble.

Do you have normal cortisol levels?
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1455116_tn?1330509017
He wants to see me back in 3 months.
The digoxin side effects were too bad for me to take a third dose. I was told to stop.

The tests I've had done is a blood test last year to investigate the lupus symptoms. They tested for antibodies, and some other things. I'm not sure if they tested cortisol levels.

I called the EP yesterday and asked that he test my catacholamines due to the mass on my adrenal gland. The nurse said she'd ask him. I haven't heard back yet and called again this morning to check, only got the answering machine.

Just for the sake of asking, could a benign mass on my adrenal gland make my hair fall out? I'm pretty sure they had said it was a 2cm mass, not 2 mm. I'm the only one in my family with low blood pressure, but I read that that goes along with IST.

This is what I've been told from the heart doctors:
1s cardio: you're crazy and have anxiety disorder, and are anorexic (I got screened and have none of those. thank you.)
regular doctor then confirmed lupus symptoms w/ bloodwork (all levels slightly abnormal). stopped atenolol.
2nd cardio: heart is structurally healthy. see a rhuematologist (haven't gotten in to see one yet. am going through student health here. no written referral from cardio 2).
3rd cardio: you have an overreactive SA node. do calcium channel blockers. if they don't work, ablation. referred me to an EP.
4th cardio, the EP: you have IST. ablation won't work. calcium channel blockers will drop your heart rate by 20-30 beats. aside from those, you'll always have a high heartbeat. basically...that i'm screwed.
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1455116_tn?1330509017
ps: this is what my hair looks like. its not due to the bleach. it falls out with the root attached.  let it grow out this long without bleaching it as an experiment, and no change. the entire brown pieces that have grown in are falling out at only 1" long too.

http://i897.photobucket.com/albums/ac172/sadhair12345/7490aa6f.jpg
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1455116_tn?1330509017
and i have straight hair. i'm not sure why some of them are kinky and waved. this was after blowdrying it, so it's not like that from sleeping on it, etc.
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Avatar_f_tn
I'm not sure if it's the adrenal mass causing your hair to drop, but it could be. It could also be from biotin deficiency.
Find out everything you can about your adrenal mass. It may take more than one catacholamine test to get a good idea of what's really going on with this.

A Great Dane?  What color?
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1455116_tn?1330509017
thanks for the reply.

yep. i LOVE great danes. i'd like to get a harlequin, but i also like the mantles.
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Avatar_f_tn
I like the harlequins and the brindles, but I've never owned a dane. Had to go with a smaller breed.
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560501_tn?1383616340

   Hey there,

   I checked out the picture......Those hairs are certainly "New Growth".    How long has this been going on?  The hair thing?  The reason that I ask is that every couple of few years (2-3) our bodies go through something (can't remember what it is called) and we begin to loose our hair.   I learned this from my hair dresser who is from Italy (they have to go to school for 2 years there verses 10 - 12 months here) so she knows her stuff!

   In fact she herself is going through this spurt thingy now.   when I went through it and blew out my hair to flat iron it I called those hairs my "Porcupine hairs"...lol

     Of course i am not saying that is what is going on with you now...but just thought I would throw that into the mix ;)

     My Digoxin dose is quite small and I only take it once a day (in the morning) for the Tachycardia.   I have you in thought and prayer for some answers and some kind of meds or remedy that will help you out.

Be Safe,
~Tonya
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726204_tn?1285879778
Hiya x

There is a strong chance that your growth is non functioning but considering all of your symptoms this should be checked.  You definately need to have a full work up by an endocrinologist.

I have POTS but I also have an adrenal growth.  I have had 24hr urinary cats done continuous over 3 days, these were negative.  I have had laying and standing aldosterone and renin levels checked and have just had a clonidine suppression test.  My cortisol levels have been checked along with several other hormones.   Even if the growth is not a Pheo it can cause alterations in some of the hormones the adrenal gland produces.

    
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1455116_tn?1330509017
update: i took just half of a 120mg dose of cardizem cd tonight and am very dizzy and tired, and have a headache from it. it's dropped my bloodpressure from 110/80 to 105/55 in 2 hours. i don't think this is going to be something i can take, especially considering this is only half a dose. my heart rate is still very high and has not changed, even though my blood pressure has. i'm really disappointed. it's difficult because the only medicine that worked gave me lupus, and the others are not working AND giving me intolerable side effects.

i think i'm going to go to a FIFTH cardiologist being that i've gotten a different diagnosis from every one of them, just to be sure. as well as to an endocrinologist. i think the hair problem indicates an endocrine problem, and that COULD be influencing my heart maybe? whatever that thing is on my adrenal gland, pheochromocytoma or not, i think it would be a good idea to take it out. the EP is supposed to call me tomorrow with his verdict on whether he'll give me a catacholimine test or not.
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1455116_tn?1330509017
* the hair thing has gone on over the last 3 years, progressively getting worse. this isn't normal hair loss during cycles. i get fistfuls of hair off my head all the time, and it's been going on for about 3 years straight. it never gets better.
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Avatar_f_tn
Hello!

Firstly, I would like to welcome you to the forum :-)
I am really sorry to read about your struggles - Constantly high heart rates like yours are certainly no fun, and even more sorry that no medication has helped you so far.

These are my thoughts in regards to your questions -

1) Is a pacemaker an option to stop this tachycardia? - In very refractory cases that do not respond to any meds and/or ablation (I am assuming here that you have been tested for POTS and it is negative, because otherwise pacemaker and ablation are not recommended as they will make you worse), a pacemaker can be inserted.
But to do so, they will need to to cut off your heart beat, so to speak, and put you into a complete heart block, so it is not a decision to be taken lightly.
Again it is very rarely that Drs do this - Here in the UK I know two ladies who did have a pacemaker inserted, but that was after years of trying other alternatives.
Statistically, those are the sucess rates for plain ablations -
"In a retrospective analysis of 29 cases undergoing sinus node modification for inappropriate sinus tachycardia (140), a 76% acute success rate (22 out of 29 cases) was reported. The long-term success rate has been reported to be 25% to 65%.

2) do I have any other options? -  You seem to have tried all possible alternatives beside the ablation (Beta-Blockers; Nondihydropyridine Calcium Channel Blockers like Verapamil and Diltiazem; Sinus node modification by catheter ablation).
There is a drug in the UK called Ivabradine that is not available in the USA yet - Maybe ask your Dr or pharmacist if there are any dates in the pipeline for a release in the USA.
This is a link to the med -

http://www.medicalnewstoday.com/articles/34139.php

You could also try Verapamil, because even if it is also a CCB you might react differently to it than to the Cardizem.

Also I found this that might be interesting for you and your Dr to look into -
" But limiting drug use to these agents is a result of the fact that IST is usually diagnosed and treated by cardiologists, who tend not to subscribe to the “generalized autonomic dysfunction” theory of IST. Considering that IST may be one of many dysautonomias opens up the possibility of using several other medications that might be of benefit – these include midodrine, florinef, and the serotonin-reuptake inhibitors."

http://heartdisease.about.com/cs/arrhythmias/a/IST_2.htm

3) will having my heart beating this fast so often eventually damage my heart? -
This is the only allusion to this that I found -
"The risk of tachycardia-induced cardiomyopathy in untreated patients is unknown but likely to be small."

4) why does my heart feel like it's POUNDING, even at times when it's only 80 bpm? -
I have no answer for this one as, like you, I can feel my heart pounding with a HR of 60!? mostly at times when I don't feel too well.
My cardiologist said to me when I mentioned this, that heart patient or patients with arrythmias are more sensitive to their own heart patterns, and can feel the beating as pounding.
To be honest he did not convince me :-)

5) were the test results that were gone off of to diagnosis this enough? -
This is a good one - In my personnal opinion/experience I don't like 'words of mouth' between Drs, mostly when they don't know each other abilities.
I think that a new Dr should look at test results with a pair of fresh eyes, as their interpretation might differ from another Dr, mostly in complicated tests like tilt table or Holter.
Different EP Drs might have different interpretations of the same result.
Tests like cardiac echo are more straightfoward, so less prone to 'misinterpretation'

6) Where would be the best hospital to go to/area of the US to go to, to get help with this? -
This is a list of hospitals/Drs diagnosing dysautonomia

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

Has POTS been ruled out?
Have you ever had a tilt table test done?

7) Could this tachycardia be caused by a pheochromocytoma? -
Tachycardia is just a very small part of Pheo - Extremely high BPs are one of the cardinal sign of Pheo.
From the few BPs you gave, they appear to be normal to low normal - Do you monitor your BP at home during different time of the day and/or activities and events?
Because in Pheo the high BPs are sporadic - The 'crisis' can last an hour, and if you don't happen to take your BP at this time you might miss it.
"Attacks usually occur weekly, but may occur several times daily or once every few months; 80% last less than an hour but rarely they last for several days"
This is also what I found-
"Sustained, labile, or paroxysmal hypertension is almost always present and is due to excess circulating catecholamines. However, very rarely pheochromocytomas, especially familial tumors, may not secrete enough catecholamines to cause hypertension. Also, a few cases of pheochromocytomas have been reported that secreted only dopamine and did not cause hypertension."
Is hairloss related to pheochromocytoma? -
Nowhere have I seen hairloss related to Pheo. The problem with hairloss is that it is a mostly non-specific symptom that can be caused by a multitude of health problem, from chronic stress, to vitamins/mineral deficiencies and normal hormonal changes in the body.
From the photos, it seems that your hair are not thinning out, so it is a good sign.
Have you asked your Dr what was his thoughts about it?
About diagnosing Pheo - "plasma and 24-h urinary metanephrine and normetanephrine are the most sensitive (97% to 99%) biochemical tests for making the diagnosis of pheochromocytoma, and they are equally sensitive for detecting sporadic and familial pheochromocytoma. Only rarely will a clonidine suppression test be needed."

Well, this in one long email!!!!
I hope it has helped answer your questions, and that I have not rambled on too much :-)
Please do not forget that I am *NOT* a doctor, just a POTSy who reads a lot about this stuff!
Keep us updated on your progress.

:-)






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1455116_tn?1330509017
global hiking, thank you so much for replying with all that information.

i have not had a tilt table test.

the first cardiologist i saw who told me i was crazy, did an ekg (while on atenolol, which gave me a normal heart rate), and then told me i had anxiety problems and anorexia because my heartrate was able to shoot into the 90's when someone opened the door. i do not have anxiety problems or anorexia. i got screened for both to make him happy. he reluctantly agreed that i had lupus symptoms from the atenolol. he told me to stop taking that med and carry on with life with a heartrate of 120-160+.

the second cardiologist did an ekg (which showed my heart rate to be 60 at the time, one of the rare times when it dips low), an ultrasound, a stress test, and a 24 holter monitor. he found all my tests to reveal tachycardia and no structural problems with the heart. he told me to see a rheumatologist as he thought something like lingering lupus could be causing the problem. i moved and was unable to see a rheumatologist.

the third cardiologist did not see those test results (the hospital is very hard to get ahold of to get them to fax my test results. it's been 2 weeks of calling and i still can't get ahold of anyone to fax my results.). this cardiologist did an ekg and asked about those test results and i said the previous doctor had said they revealed no structural problems. he told me i had SA node problems, and that ablation or medication would solve it. he referred me to an EP.

the EP did an ekg, said it appeared normal with a pulse of 90, and asked about those previous tests which i said the second doctor had said he saw no structural damage. he wanted to know if the other doctors had caught my heart being abnormal. i said the 24hr holter and stress test etc. only revealed tachycardia. he listened to my heart with the stethoscope and caught it beating at 120 and then dropping a lot very quickly, and then going right back up. (he asked me if i felt it when it dropped while he was listening. i did not.) he did not schedule any other tests and told me i have IST, gave me cardizem cd, and told me to come back in THREE MONTHS.

So those are the tests I've had and a description of how it all went.

i looked up symptoms of dysautonomia and i have almost every single one of them, even the rare ones, most of which set in alongside the tachycardia. i felt entirely healthy and vivid and full of energy prior to developing the tachycardia and all these other dysautonomia symptoms. apparently a symptom of dysautonomia is hair loss too. this all started when i was put on ritalin. i went off of it, and never got better. prior to all of this, i was so healthy, always active, playing sports and running and not tired unless i'd been doing things that would appropriately tired. now i am always exhausted, out of breath, feeling jittery, numb/tingly hands and feet sporadically, my hair is always falling out, tachycardic, etc. i'd describe life now and difficult just to get through the day due to fatigue. even without a jumpy heart all the time, when i was on the atenolol i was still exhausted all the time. 14 hours of sleep is not enough for me.

even if this mass on my adrenal gland does not appear to be a pheochromocytoma, would it be a good idea to have it removed? i'm wondering if it could be what's causing the dysautonomia, which in turn is causing the IST. could it be, even if it's not a pheochromocytoma?

i've seen by researching dysautonomia, that neurologists treat it. is that something i should ask my EP about doing? seeking help from a neurologist to treat the base cause of this? it's the base cause if that little mass isn't.

***all my symptoms showed up around the time they discovered the mass on my adrenal. i got the tachycardia, they treated it. then about 6 months later i was going to the doctor at 16 for joint pain and fatigue. somewhere in that time period they discovered the mass, and passed it off as a calcification due to being born premature, regardless of it being on my adrenal gland and me continuously coming in saying i didn't feel well.

sorry this is SO long. i've been researching furiously all weekend to try and find SOMETHING i can do to at least help this heart problem.

thank you for all your help, i appreciate it so much.

ps: i've looked at meditation as a form of lowering heartrate, but it said it only lowers it by 1-2 beats per minute according to clinical trials :/
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Avatar_f_tn
Hi again. Have you been checked for magnesium deficiency? I seem to remember something about low magnesium levels being a part of some types of hair loss. Magnesium deficiency is part of the profile of Mitral Valve Prolapse, and it is vital for normal heart function, so maybe? Have you tried taking extra magnesium? Taurine is important in heart function too.
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1455116_tn?1330509017
i take a multivitamin and i've tried all different kinds. none have changed anything unfortunately :/ right now i'm on centrum silver as we thought maybe the included minerals/magnesium/zinc might help, but it hasn't.

i read today that dysautonomia causes decreased bloodflow, which makes it so your hair follicles don't get enough bloodflow, and therefore your hairs (hehe, hairs :) fall out.
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Avatar_f_tn
So maybe your hair is falling out from decreased tissue oxygenation, resulting from decreased blood flow. Are you taking CoQ10? It is important for tissue oxygenation. My son  has many nutrient deficiencies, Co Q10 among them. His hair has thinned a lot over the last 3 years, but he was also hypothyroid, so I thought that was the cause.
CoQ10 is a big player in heart health.
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1455116_tn?1330509017
i caught my bloodpressure this morning at 138/87. Is that high? I've been taking it with the blood pressure cuff I got from kroger a few times a day since wednesday. It's usually 100-110/55-70. (ps: the pharmacist told me the bloodpressure cuff by kroger is made by omron, the fancy one. it's the same, just cheaper, incase any of you need one :)

ps: my pulse with this blood pressure was 114.
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Avatar_m_tn
try doing breathing exercises every day and test if it will help you.

basically do this before sleep for 5 to 10 minutes>

breath in and breath out.
breath in and hold breath and count for 7 while you hold breath...
at the same time you contract your muscles... you start with legs..then
you work up with all muscles until you done this with all muscles..
then you go back down from contracting your arms down and back to
legs where you start. don't forget to hold breath and count to 7 while
you contract the muscles in your body.. this resets the sinus node and will
make the impulses go back to normal- heart rate will go back under 100..
and stay there no matter....

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Avatar_m_tn
Hopefully you've gotten some some answers by now, but if not--have you been checked for hyperthyroidism (Graves' disease)?
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Avatar_m_tn
Try some 100 % natural orange juice... tropical farms...heb brand..etc.... as long as not a flavored juice.. see if that helps ... has to have potassium in it...makes my rythm get back to normal hope this helps.
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