I'm too young for this!

[RNchrissy28]

In November 2008 I began having intermittent palpitations.  I brushed it off as being stress related.  I was exercising at Curves 3-4 times a week and by February I had to cancel my membership.  I found myself no longer able to exercise without becoming short of breath and noticed my pulse was climbing.  The day it reached 180 beats/minute I became frightened.

I tried for months to find a physician to take me seriously.  Finally in August 2009 I found a doctor that was willing to try to find out what was happening to me, as I was progressively getting worse.  My echo showed I have mild mitral regurgitation.  BMP, CBC, Free T4, and TSH were all within normal limits.  Chest X-ray was normal.  PFT was normal.  24-hour urine was normal.  TCD was normal.  ABGs were normal.  During my stress test my heart rate reached 200 beats/minute after 9 1/2 minutes.  I became extremely dizzy, extreme SOB, and felt faint.  I was put on metoprolol 12.5mg BID but it did nothing to alleviate my symptoms so the medication was stopped after a couple weeks.  I was sent to an electrophysiologist.

The electrophysiologist diagnosed me with POTS and started me on Zoloft 50mg daily and Pyridostigmine 60mg BID.  I also began a high sodium diet and began drinking a bottle of G2 Gatorade daily.  After 2 days I had zero energy and all I wanted to do was sleep.  I had no appetite and when I did eat I had diarrhea.  I was sent home from work because I could barely function on these medications.  After 4 days the physician took me off of them.  I then wore a holter monitor for 2 weeks.  The physician told me my P waves looked “funny” but it was hard to tell from a 2-lead.  I was started on Rythmol 150mg TID but again the medication did nothing to alleviate my symptoms so the medication was stopped.

I finally agreed to an EP study which was done last week.  When I arrived at the hospital I noticed my diagnosis said SVT, not POTS.  As far as I have been told I have stayed in sinus rhythm each time I have been symptomatic so I was very surprised to see SVT on my orders.  The physician stimulated my heart for 2 1/2 hours but could not get any abnormal rhythm therefore an ablation was not performed.  The physician thought it could have been unsuccessful because I was under anesthesia and I had been up 30+ hours prior to the procedure.  I have since been started on a new regimen of Zoloft 25mg daily and Florinef 0.1mg daily.  I have not had much energy this week and I'm still dealing with the pain in my groin from the procedure but I still get SOB when walking up the stairs in my home.

I am 28 years old.  I can no longer exercise due to the activity intolerance.  I can no longer do the things I enjoy the most.  I can't go outside and play with my son anymore.  I stay tired ALL the time.  I can't even have sex.  I want my life back!!!!

Are the physicians on the right track to fixing my problem or should they take another route?  I'm desperate to go back to normal, or at least as normal as I can get!  What is wrong with me?????

[Mom2four85]

Dr. Grubb is the best I've heard, but be patient I think his wife died recently so he may not be taking new patients [brain fog]  There's a few large clinics that are really well dealing with Dysautonomia problems and will understand what you're going through.  

Check your insurance to see if it covers places like Mayo because mine covers the dr if I see them outside the clinic - for me it was $3,000 vs $12,000 out of pocket to be seen at Mayo.  I have ANS dysfunction/failure (NCS/OI/Neuropathy) on top of heart problems, it's not easy to deal with and most drs ahve told me the same thing - you have to learn to deal with it and do the best you can it's not going to go away.  They treat symptoms and not the root of the problem - which they may not even know.

btw, be careful with exercise and fainting you don't want to hurt yourself - I did that; the difference with me is my heart stops when I pass out; I have a pm/icd now to counteract some of that, but even with it and meds I still have problems - I'm sick of trying to find the "answer" too; 5 meds now and things I'm trying and nothing works

if you haven't check out the dysautonomia/ans forum here and on dinet.org

[RNchrissy28]

The whole mess is very frustrating!!  I hope you have better luck getting a treatment than I did!!

The only diagnosis I have been given consistently is POTS.  I no longer take any medications and have stopped going to the EP.  I have started a new diet (just counting calories) and have tried to slowly get back into exercising but my body still says no; I blacked out while trying to do a 7 minute moderate-intensity lower body workout last week.  I quickly dropped to the floor just in case I went completely out but thankfully it was only my vision and it was temporary.

I ran across a website the other day that may be useful for some of you.  www.clinicaltrials.gov  It has a list of trials that are active and there are several for POTS!  Just search for 'postural orthostatic.'  If you search for POTS it pulls up studies about marijuana, lol.  I just filled out a questionnaire for a trial in Nashville, now I just have to send it to them.  My next step is to break down and call my EP back and ask for a referral to see Dr. Blair Grubb in Toledo, OH.  Look him up if you haven't heard of him!!!

Good luck, myboysrock, with everything!  Keep us posted

[myboysrock000]

Hi guys! Hope you still hop on to check these posts...I know it's April and all....but maybe you are still interested in connecting with others?
I am 33 y.o female nurse, with kids, who exercises regularly and have kept off 60 pounds. I went into SVT in February and haven't felt "right" since. Now I feel SOB frequently. I'll lay down and feel a pressure in my chest. Off and on chest pains....which I went to the ER for after they satyed around for 18 hours. EKG normal, Chest X-ray normal, 3 week monitor recorded only "sinus tach" while I exercised. So why the hell do I feel so exhausted all the time? I have begun daily napping to help. Now I have been getting dizzy and my palpitations are more regular (although they never showed on the monitor) I am currently awaiting a stress ECHO in a few days...I am hoping for them to look for MVP or regurg or Pericarditis os SOMETHING. An answer would be better than nothing at this point...while I don't want a cardiac diagnosis, any diagnosis would be nice. Someone mentioned the ANXIETY thing-- and you're right, you know it's not anxiety, but they make you question yourself sometimes!! In the ER my HR and BP were fantastic, so no I don't think I was having an anxiety attack. So frustrating....

[RNchrissy28]

Well, I talked with my electrophysiologist the other day.  I told him the new course of treatment wasn't working either and all I did was slept.  My son made the comment, "all you ever do is sleep, mommy."  I told him I was tired of being tired all the time.  None of the medications have helped and I'm tired of experimenting.  I now have hundreds of dollars worth of medical bills to pay and a ton of medications I don't even take!  If anything I'm worse today than I was a year ago.  He became very upset with me and said, "You just don't understand the nature of the beast.  It takes a long time to find the right treatment and I have done everything I can for you.  I suggest you either go to the Mayo Clinic or Cleveland Clinic."  I don't know if I want to continue this battle!  He said he'd give me a referral for anyone I wanted to see but he's done with me.  Gee, that's nice.  Thanks doc!  I'm seriously thinking about getting a referral for Dr. Blair Grubb in Toledo, OH but it takes 6 months to 1 year to get an appointment.  But, hey, what do I have to lose, right?

Amiey,
Sounds like we could be the same person, lol.  I know what you mean about peoples' comments.  I get tired of hearing, "Oh, you're young.  You'll be fine." Or, "When I was young I could work those long hours."  Yeah, we may be young but nobody seems to understand the constant exhaustion that goes along with this diagnosis.  All around frustrating!

[amiey2217]

oh and the #1 thing that everyone else and i have said through this entire process is "I (You) are too young for this!!"

[amiey2217]

wow. i had to stop for a minute when i read this post because I thought for sure you must be talking about me. I am a 28 year old RN, mom of one, with SVT. I had an EP study first. The MD didnt do an ablation cause it was too risky possibly requiring a pacemaker. A few years later, my symptoms progressed and it began taking over more and more of my life. I tried medication after medication after medication. Almost all of them, the side effects were worse than the actual thing i was treating. Fatigue was my number one symptom with all of them. It was awful, I felt so hopeless. I was very very active in sports and exercise and it all came to a screeching halt with all of this cause I couldnt tolerate it. Then a year ago, after many many tests, I had an ablation for SVT, VT, and AV node reentry. To make a very long story short, i ended up with many many bad bouts of pericarditis the entire year following the procedure and now have new palps I am dealing with. I cannot blame the new palps on the ablation cause it is just the nature of the arrhythmias. I can actually say I would do it again if I had too, which it looks like I will soon. Just two days ago I finally had an implantable loop monitor put in to help confirm a diagnosis so that I can do another ablation in the future. So long story not so short, I feel your pain. You start to feel like this stuff takes over your entire life, it governs your existence, and is soooo very frustrating. My favorite is when people pass it off as anxiety, like by this point in time you cant tell the difference. The heart is a very complex organ that is not totally understood, but every year more and more advances are made. One thing that has really made all the difference is finding a great electrophysiologist, that I like, is very good, and I trust. I hope for you to find the same. Ask some people at work, or some of the docs you work with for suggestions. I really hope for the best for you. Hang in there, it will eventually get easier, it just takes time. There is no magic wand that gets rid of it, unfortunately, so you have to be patient. Good Luck!

[cindy707]

Man o man i hate reading posts like yours because i get so upset with these docs out there.  Its kind of like make up your mind will ya????  At 28 years old you definately have that in your favor but it sounds to me like you are not really living a life for yourself just running from doc to doc to test to test.  This is where you need to get very proactive with your body.  You've gone to one doc for a diagnosis, another for stress test, another for your EP studies and on and on and on.  I would think about trying to find one cardio that does it all....he/she does the diagnosis, testing, treatment, EP/Ablation if necessary and this would definately fall under a strong second opinion.  Just don't chose a name out of a hat....do your homework....find the top dog with all of the skills in your area.....ask others in this community if they live or know of someone great in/near the city you live and start there...then check that docs background, look for patient comments, etc.  i too would be sick and tired ALL of the time if this was going on with me and my body....you're whole family and world is being effected by this situation and to me they have to make up their mind because you are not a test monkey and they'll just try this or try that...to me if they knew what they really were doing there wouldn't be all of these changes and havoc they are wreaking on your life...they'd get it right the first time...maybe a second opinion?

[EMT23]

Your symptoms sound a lot like what I have been dealing with. I was told I had POTS, Inappropriate sinus tachycardia, and now I'm told I have SVT after I wore an event monitor for a month. So do I have all 3 or do they really not know for sure ...  My EP wants me to have an ablation...a week later at my follow up appt. with my regular Cardiologist he asked me what the EP doctor recommended and when I told him an ablation...he freaked out and said that it was too risky to do with my type of tachycardia. My Cardio thinks my problem is originating in the sinus node and said this is a risky area to do the ablation and I would probably end up with a pacemaker and he said I'm too young for that... So like you I am very frustrated with doctors and tests.

I too get very SOB with any limited movement and become very tachy to the point I can hardly talk when it happens. It's a very uncomfortable feeling and depending on where I am or what I'm doing like if I'm at work or on an ambulance run it is very difficult for me to function when I need to the most.  Hang in there!! Hope things get better for you! :o)